This platform gives you - patients, carers and members of the public - the chance to make a difference to cancer research and care.

Welcome to Cancer Patients' Voice

Working in partnership with you ensures that we focus on the issues that matter most to those affected by cancer.

We need you!

Projects you can get involved with

Find out more information and meet the team: Tuesday 16 July and Thursday 18 July, 5.30pm &ndash; 8.30pm, Harris Academy Sutton, 2 Chiltern Road, SM2 5QP

Share your thoughts on proposals for the London Cancer Hub

This new online platform gives you - patients, carers and members of the public - the chance to make a difference to cancer research and care.

Working in partnership with you - in research and improving services - ensures that we focus on the issues that matter most to those affected by cancer. &nbsp;

We need you!  

What do you think of the Olayan Medical Day Unit Facility in Sutton?

New issue - &nbsp;Spring 2025 (no 10)

Our Patient and Public Involvement and Engagement Newsletters

Hypnosis as a therapy is used across the world every day, it can be used to help cancer related pain, as well as emotional distress and anxiety. In some regions in the UK it can be available through the NHS as a complementary therapy. It is more likely to be funded privately. However we do not have enough good quality evidence on how well it works for patients. We want to further explore the benefits, any potential pitfalls and what place it has in health settings.This study is about listening to people with experience of hypnosis in breast cancer care in the UK to add to and improve our knowledge on the subject. As a University professional doctorate psychotherapy research study, its aim is to carefully, and sensitively learn about the personal experience of women who have received hypnosis in breast cancer care.There are two research groups for the study:&nbsp;Participants, group 1.&nbsp;Women diagnosed with breast cancer who, in the last 5 years, have received hypnosis for cancer related pain (e.g. emotional distress, anxiety, fear, grief, trauma, loss, anguish, etc., and or any physical pain).Participants, group 2.&nbsp;Hypnotists/hypnotherapists who have used hypnosis in the UK within the last five years for women diagnosed with breast cancer. Specifically for cancer related emotional and or physical pain.Anonymity for all participants is assured.Please get in touch with Bryn Higgott at <a data-fr-linked="true" href="mailto:bghiggott@uclan.ac.uk">bghiggott@uclan.ac.uk</a> if you fit the above criteria and are interested in attending on online interview. Deadline for interviews is 29th February 2024.(Ethics approval information: UCLan Ethics approval number is: Health 0379FR. The NHS&nbsp;have given Advisory Board approval to proceed as not requiring NHS ethics approval. This has already been supplied to the Ethics Committee and is not required for resubmission.)

Hypnosis used in breast cancer treatment: experiences of women and hypnotherapists as told by them

Artist Julie Light is holding an event marking the end of her residency at the London Cancer Hub

Evolving the Ecosystem Art Event

- Help us develop cancer treatments by being part of research - Support us in improving cancer care for patients by working with our services - Be part of a community by joining online discussions or following a project

Why should I get involved?

Find out how young patients and their parents shaped what the transition from child to young adult cancer services should look like.

- Check out our project finder below - Visit a project page and get involved&nbsp;- post an idea, ask a question or complete a survey<a class="fr-strong" href="https://patients-voice.cancerbrc.org/register"></a> -&nbsp;<a class="fr-strong" href="https://patients-voice.cancerbrc.org/register">Register</a> to receive updates on new involvement&nbsp;opportunities

How do I get involved?

<a href="https://patients-voice.cancerbrc.org/building-a-registry">https://patients-voice.cancerbrc.org/building-a-registry</a>&nbsp;<table style="width: 100%;"><tbody><tr><td style="width: 62.6078%;">A rare cancer data registry gives the NHS and researchers an invaluable picture of patient journeys from diagnosis through treatment. </td><td style="width: 37.3922%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/8aa60e15e7c0da71ee701e81598bad0ce5bb85ec/original/1653485479/03f7005667ece452285ecd74f9697ef1_royalmarsden_57607028900.jpg?1653485479" style="width: 228px;" class="fr-fic fr-dib"></td></tr></tbody></table>Registries can identify differences in the management of patients and their outcomes with different treatments. What data should we include and what should it cover? Diagnosis? Symptoms? Quality of life?<a href="https://patients-voice.cancerbrc.org/building-a-registry?tool=survey_tool#tool_tab">Sign up for our focus group</a>&nbsp;on June 23rd to help build a rare cancer registry with the data most important to you &nbsp;

Building a rare cancer data registry with invaluable information for the NHS and researchers

Work with us to design research into image guided liver ablation - pinhole surgery for liver cancer<a fr-original-class="fr-green fr-strong" fr-original-style="" href="https://patients-voice.cancerbrc.org/guided-liver-ablation"></a><a fr-original-class="fr-green fr-strong" fr-original-style="" href="https://patients-voice.cancerbrc.org/guided-liver-ablation"></a><a fr-original-class="fr-green fr-strong" fr-original-style="" href="https://patients-voice.cancerbrc.org/guided-liver-ablation"></a> <a fr-original-class="fr-green fr-strong" fr-original-style="" href="https://patients-voice.cancerbrc.org/guided-liver-ablation">https://patients-voice.cancerbrc.org/guided-liver-ablation</a><table fr-original-style="width: 100%;"><tbody><tr fr-original-style=""><td fr-original-style="width: 63.5897%;" style="width: 76.622%;">Liver cancer remains difficult to treat.&nbsp;We are developing &nbsp;research to find out if ablation - a &lsquo;pinhole surgical&rsquo; technique performed by an Interventional Radiologist - can be made more effective. Microwave ablation involves an adapted needle being placed through the skin and directly into a small liver tumour to cook it from the inside.&nbsp;</td><td align="center" fr-original-style="width: 36.1612%;" style="width: 23.378%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/99122583f64bd5e4e14c3ee584863c36d99056a4/original/1650386022/7e69e5cbc5146660e74119de3c199a65_Image_RMH.jpg?1650386022" style="width: 350px;" class="fr-fic fr-dib"></td></tr></tbody></table>Advantages of ablation<table style="width: 100%;"><tbody><tr><td style="width: 50.0000%;"> &nbsp;- Less invasive than surgery &nbsp;- Low complication rates &nbsp;- Short hospital stay (typically overnight) </td><td style="width: 50.0000%;">&nbsp;- Relatively low cost &nbsp;- A liver sparing approach, meaning it can be repeated &nbsp;- Suitable for patients receiving chemotherapy</td></tr></tbody></table>About a third of tumours return after ablation so we want to investigate why, and how to improve this rate of recurrence.Get involvedVisit the <a fr-original-class="fr-green fr-strong" fr-original-style="" href="https://patients-voice.cancerbrc.org/guided-liver-ablation">project page</a> <a fr-original-class="fr-green fr-strong" fr-original-style="" href="https://patients-voice.cancerbrc.org/guided-liver-ablation?tool=qanda#tool_tab">Ask a question</a> - about image guided liver surgery or this research <a fr-original-class="fr-green fr-strong" fr-original-style="" href="https://patients-voice.cancerbrc.org/guided-liver-ablation?preview=true&tool=guest_book#tool_tab">Leave a comment in the guestbook</a> &ndash; you may have a comment or suggestion rather than a question so please share it&nbsp;<a fr-original-class="fr-green fr-strong" fr-original-style="" href="https://patients-voice.cancerbrc.org/guided-liver-ablation?preview=true&tool=guest_book#tool_tab">here</a>

Help develop a new surgical treatment for liver cancer

<table style="width: 100%;"><tbody><tr><td style="width: 50.0000%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/49a65545db3150e06ccc72d597e9059661e42c22/original/1649251481/112631d33396527f51f4401480382350_CMC_care_plan.jpg?1649251481" style="width: 300px;" class="fr-fic fr-dib"></td><td style="width: 50.0000%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/fe6d3cf6963f583e0fba86e2029fae4fed33e723/original/1649247217/7eb3ace03cf61d9c8ddc0afd3dbbd782_alex-nemo-hanse-gA3YJpTWJSs-unsplash.jpg?1649247217" style="width: 300px;" class="fr-fic fr-dib"></td></tr></tbody></table><a href="https://patients-voice.cancerbrc.org/connect-digital-health-record"></a> <a class="fr-green fr-strong" href="https://patients-voice.cancerbrc.org/connect-digital-health-record">Connect Digital Health Record (Connect DHR) | Cancer Patients&#39; Voice&nbsp;</a> Our Connect Digital Health Record programme will replace the Royal Marsden&#39;s current paper and computer-based systems with one electronic patient record. It means your patient information is in one place for all the teams caring for you,&nbsp;It also means patients can give access to their medical record to someone else. This is called &lsquo;proxy access&rsquo;.&nbsp;<div class="fr-view" id="project_description_text"><div class="description parent-description"><div class="truncated-description">What is a proxy?A proxy is a person who has access to a Patient Portal account that is not their own. There are different types of proxy access, including: a parent with access to their young child&rsquo;s Patient Portal account, a parent with access to their teenage child&rsquo;s account, an adult with access to another adult&rsquo;s account (such as a husband or wife, partner, or an adult accessing an aging parent&rsquo;s account).Except for cases where a Power of Attorney has been granted, an adult accessing another adult&rsquo;s account will not have the power to make decisions on a patient&rsquo;s treatment or care.</div></div></div><a class="fr-green fr-strong local" href="https://patients-voice.cancerbrc.org/connect-digital-health-record?tool=survey_tool#tool_tab">We would like your feedback</a>&nbsp;on how we define the term &lsquo;proxy&rsquo; and what this term means to you.

Help us make our digital health record programme work for patients

<ul><li><a href="https://patients-voice.cancerbrc.org/register" rel="noopener noreferrer" target="_blank">Sign up</a>&nbsp;to engage with projects and receive emails every time a new project is added.&nbsp;</li></ul> <ul><li>Find out more or tell us what you think of the Cancer Patients&#39; Voice platform:<a href="mailto:patientsvoice.online@rmh.nhs.uk">&nbsp;patientsvoice.online@rmh.nhs.uk</a> or 0203 186 5282.</li></ul> <ul><li>If you are looking for information to help you understand your diagnosis, treatment and what to expect when you come to our hospital see The Royal Marsden <a href="https://patientinfolibrary.royalmarsden.nhs.uk/">patient information library</a></li></ul>

                      More information

Public Engagement Events

This is the place for public contributors to exchange ideas and discuss different aspects of their involvement in research Coming Soon

Chat room

We are holding a focus group on Thursday 23rd June from 7.30-8.30pm to discuss ideas put forward, and how to incorporate them alongside key clinical data into the initial data set for the registry. 

Focus Group - Designing a registry for patients with rare blood cancers

Please note that this platform is for patient and public involvement. It is not a channel to comment or complain about services provided by The Royal Marsden NHS Foundation Trust and it is not a source of medical advice.

Project Finder

Researchers from The Institute of Cancer Research and the Cancer Research UK Convergence Science Centre are running online focus groups with people who have experienced breast cancer and their carers to understand how the NHS and UK government can better support them.Working as part of the <a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(24)00747-5/abstract" rel="noopener noreferrer" target="_blank">Lancet Breast Cancer Commission</a> the team has been gathering responses to a survey on the hidden costs and unmet supportive care needs of people who have experienced breast cancer. Challenges such as childcare and taking time off work have been identified. The team is now planning to hold a series of focus groups to develop recommendations for improved support for UK breast cancer patients and their families.Focus group details:<ul><li>People will be invited to two online focus groups (1.5 to 2 hours long). There will be a 3-week break between each focus group. These groups will be on Zoom.</li><li>Participants will be asked to complete two voluntary short surveys (5-10 minutes) after each focus group session.</li><li>There will be a &pound;50 compensation for each of the focus groups (&pound;100 in total). This will be paid after attendance of the two workshops*</li><li>Sessions will be held in late April to May 2025. Participants will be able to provide their availability.</li><li>If you&rsquo;re interested, sign up via this link before 20th April 2025: <a href="https://app.onlinesurveys.jisc.ac.uk/s/icr/cascara-express-of-interest" rel="noopener noreferrer" target="_blank">https://app.onlinesurveys.jisc.ac.uk/s/icr/cascara-express-of-interest</a></li><li>For more information, please contact: Patrick.Kierkegaard@icr.ac.uk</li></ul> *Please be aware that any payments or vouchers may be considered as earnings by the Inland Revenue, and there may be associated tax implications. If you are receiving benefits you may need to notify the Jobcentre about this activity. If there are any tax or benefit implications for you please let us know. You have the option of asking for payment at a lower amount or declining any payment and offering to volunteer instead.

Participate in focus groups exploring the hidden costs of breast cancer

This project aims to improve care for people who have had gynaecological cancer surgery and may be at risk of developing swelling in their legs, known as lower limb lymphoedema. We want to create a post-surgery care plan that provides patients with the right information and support at the right time to help them stay well.Managing lymphoedema early can make a big difference, but we need your help to design the best approach. What are your views on:<ul><li>When is the best time to provide information and support?</li><li>How would you prefer to receive this information? (for example, via leaflets, videos, or one-to-one conversations, group sessions)</li><li>Would you like to participate in exercises that could reduce the risk of lymphoedema or help manage it if it occurs?</li></ul>This project aims to provide proactive, holistic care that considers the whole person and their needs, rather than focusing solely on the condition. Your input will guide us in developing a patient-centred plan that is practical, straightforward, and designed to reflect the experiences of those who have undergone cancer treatment.By sharing your thoughts, whether you have had gynaecological cancer or any other cancer, you can help us better understand the lived experience and improve care for others in similar situation. We want to hear from patients who have been or are at risk of developing lymphoedema about how they would like to see post-operative care and risk reduction advice improved. Please add your ideas below.

Help us provide better support for managing lymphoedema

Patients who are treated for head and neck cancer are seen by their doctors for 5 years after their treatment. This follow up focuses on seeing if the cancer treatment has been successful and that the cancer has not returned rather than assessing the side effects of treatment. Recent research at the Royal Marsden Hospital has identified many unmet needs including those related to eating and drinking, pain and difficulties with mobility. We set up a pilot clinic to address these. Our aim is to extend this pilot into a standard part of the pathway this year and we want to make sure the clinic meets the needs of the people who are attending it. This project will be based on a type of research called experience-based co-design (EBCD) which means we will ask the people who are directly affected by the treatment to be part of the project&rsquo;s development and execution. Some people have already shared their experiences of the follow up care, but we need and welcome new joiners as our project moves to the co-design phase.We are looking for people who have lived experience of accessing the follow up services for head and neck cancer. This can include those who have had treatment but also their friends/family or significant others. We are holding an event on Tuesday 29th April 2025 near London Bridge (London) where we will be sharing some of the results of the project so far and hearing from patients, staff and others about what improvements need to be made. We would value your input and ideas, and if you would like to come and learn more about the project and how you can get involved please email <a data-fr-linked="true" href="mailto:sinead.rothrie@rmh.nhs.uk">sinead.rothrie@rmh.nhs.uk</a>. If you cannot attend this event but would like to be involved please also get in touch. You can also add your thoughts to the question below: what does living well after treatment mean to you?

Improving the follow up service for people after head and neck cancer treatment 

At the Royal Marsden we want patients to have a positive experience while on our wards. We want to make sure we are doing everything we can to make sure they feel welcomed, cared for and well informed about their care. We are therefore launching an accreditation programme to recognise the quality of service given to patients. This will launch initially in the wards where patients are admitted for short to extended periods of time. The accreditation assessment will be held at least every 18 months and will use existing information such as the Friends and Family Test to evidence the quality of care. To set up the programme, we asked patients to comment on what matters to them via a survey. From the 114 responses we identified seven key themes:<ol start="1" type="1"><li>Patient Pathway</li><li>Food &amp; Drink</li><li>Communication</li><li>Environment</li><li>Quality of Care</li><li>The Royal Marsden Staff Characteristics</li><li>Privacy, Dignity &amp; Respect</li></ol>From these themes we have generated a set of 16 questions and observations against which to assess the wards. On the day of assessment we would ask the patients the questions and observe the ward.We would appreciate your help in shaping the questions/observations. Please enter your thoughts on the questions/observations on the right hand side of the page in the Ideas Board below. How many questions do you feel are acceptable to ask patients on the ward?Thank you for your help in developing the programme.

Help us assess our wards

This project is working to improve the Outpatient department at the Royal Marsden at both Chelsea and Sutton. We want to look at how we can better use the space and make clinics run to reduce waiting times and improve patients&rsquo; experience. We would like to hear from you - patients, ex-patients and carers - about what works well and what is challenging when you attend an outpatient appointment. You do not have to have used Royal Marsden services before, but if you have had experience with cancer yourself or supporting someone who has, please tell us what you think. It is important for us that we hear from people with diverse needs and experiences of accessing services to know what could help make your clinic attendance better? We will be looking at how other Trusts work, reviewing existing data and working closely with staff and patients to identify possible changes in the way we work.We have identified 4 elements of improvement, and we would be interested to know your thoughts on these:<ul type="disc"><li>Reduce unnecessary appointment visits for patients &ndash; By introducing a symptom management tool for patients undergoing chemotherapy, we aim to facilitate more monitoring and support from home. We will also introduce patient-initiated follow-up appointments. </li><li>Introduce patient - led appointment bookings - An automated feature within the MyMarsden patient portal will notify patients of earlier available slots and access to cancellations to enable patients to self-schedule some appointments.</li><li>Tailor our workforce to the needs of patients &ndash; We will develop a strategy to better align our clinical staff to patient&rsquo;s clinical need. For example, we will develop more non-medical prescribers. </li><li>Maximise the use of our clinical space and physical capacity &ndash; We will undertake a review of our blood test service to ensure we have sufficient capacity within the department to see all patients in a timely manner.</li></ul>Please also add your ideas below on any other ways in which we can improve Outpatients.We will be asking several questions over time as the project progresses to seek patients&rsquo; ideas for improvement and specific feedback on new initiatives. If you want to be informed of project updates you can click on the &#39;Stay informed&#39; button on the right.

How can we improve Outpatients at the Royal Marsden?

Chemotherapy induced peripheral neuropathy (CIPN) is a very common side effect with certain chemotherapy drugs. CIPN can present as tingling, numbness or even pain, usually on hands and feet. There are no evidenced based measures or drugs which can help prevent the development of CIPN. It can be acute and short lived, but it can also persist several months after finishing the treatment.There have been several studies in the last few years looking at the effect of cold on hands and feet as a way to prevent CIPN. These studies have shown promising results, not only with the reduction of more severe CIPN but also improvement for those patients who had already developed CIPN.The Royal Marsden has managed to secure a device for 6 months with <a href="https://www.hilotherm.com/en/areas-of-application/polyneuropathy/" rel="noopener noreferrer" target="_blank">Hilotherm</a>. The Hilotherm&reg; Chemocare device is a regional cooling system that uses cuffs and piping for the hands and feet through which the coolant flows at a temperature of 10 &deg;C. Hilotherm requires 30 minutes of pre-cooling, cooling throughout infusion of CIPN causing drug.We are interested in learning more about the experiences of patients who have used Hilotherm Chemocare, as well as those who have developed CIPN but have not yet tried it. Your feedback will be valuable in helping us advance this project. Please share your experiences below. If you want to be involved in further stages of this project please subscribe on the &#39;Stay informed&#39; box to the right of this page.

What are your views on cooling therapy to prevent chemotherapy induced peripheral neuropathy?

The Royal Marsden curates a collection of artworks in our hospital&rsquo;s wards and public areas. Curating these artworks with patients in our hospital spaces has shown positive results, such as helping to reduce anxiety and stress. Research has shown that engaging with the arts in healthcare settings can bring considerable benefits to patients, such as improving their mental health and well-being. The Royal Marsden wants to extend access to our art collection by providing an online space for people to see it. We hope this will positively impact our patients and enable more people to access more of our artwork. We have a very large collection of art from which we would like to offer an online selection.To help inform what artwork to share we would like to ask you, what types of artworks do you like within our collection? We have chosen two of each of the following: abstract art, figurative art and landscape art. You can click on the images on the right hand side of the page to see them better. Please comment below on which you prefer and why. You can also tell us about a piece of artwork you have seen in our hospitals that you like and why.

Engaging patients, staff, and visitors with the Royal Marsden’s art collection online

Welcome to our newsletters, updating professionals and members of the public about Patient and Public Involvement and Engagement (PPI/E) at the Royal Marsden NHS Foundation Trust, The Institute of Cancer Research, London, The National Institute for Health and Care Research (NIHR) and the Biomedical Research Centre (BRC) and Clinical Research Facility (CRF) at the Royal Marden and the Institute of Cancer Research (ICR).These newsletters are co-produced by the Royal Marsden PPI/E Team and patients, carers and members of the public who support us.One highlight of the latest Spring issue (no 10) is an invitation:Celebrating Patient and Public Involvement Thursday 1st May 2025, 11.30- 17.00, Royal Marsden, Oak Centre, Sutton We would like to invite all patient and public contributors to a face-to-face informal event to celebrate your involvement and engagement with the work of the Royal Marsden.&bull; This will be an opportunity to meet and liaise with each other, to share the involvement and engagement work that we are doing, to discuss aspects and challenges of involvement and engagement&bull; Lunch and refreshments will be available&bull; A voucher of &pound;100 will be offered for your time and travel expenses will be paid.If you are interested in joining us, please register by emailing patients.engagement@rmh.nhs.uk by 15th April 2025 the latest. Places are limited, please register as soon as possible

The London Cancer Hub in Sutton is an exciting project that aims to create the world&rsquo;s leading centre for cancer research, treatment, education and enterprise.The proposed development will build on the ground breaking facilities already provided by The Royal Marsden and the Institute of Cancer Research, delivering research facilities that will attract and retain the world&rsquo;s leading scientists to speed up the development of cancer treatments.It will include spaces for people to meet, work and relax, and give local people an opportunity to benefit from the facilities, public space and wider amenities on offer.Investor Aviva Capital Partners and developer Socius, the companies behind the proposals, are asking the local community - those living, working and visiting Sutton and the wider area - to share their views on new plans for the London Cancer Hub. They want to share what they&#39;ve learnt from previous feedback and invite you to share your thoughts on their proposals.Since they shared the updated proposals for London Cancer Hub in July, there has been a lot of activity with local youth groups, charities, schools and science community. Following the two face-to-face public events earlier in November, they would like to hear from you and learn from your experiences to ensure that the new development will continue to help the work of the Royal Marsden and ICR. Please join us online for the Patient Engagement Online Event on Monday 25th November, 17.30-19.00. In the session the team will talk you through the plans to date. This will include sharing new CGIs, site layouts and visuals on screen. We will then spend time listening to your thoughts and ideas. In particular we would like to discuss: <ul><li>Meanwhile uses </li><li>Accessibility and travel </li><li>What you would like to see on site (e.g community spaces, cafes, shops)</li></ul>Please do bring any ideas that you have, and we will spend the session listening and taking note, aiming where possible, to weave these into our final application in the new year. Please register to <a href="mailto:patientsinresearch@rmh.nhs.uk">patientsinresearch@rmh.nhs.uk</a> or <a href="mailto:patients.engagement@rmh.nhs.uk">patients.engagement@rmh.nhs.uk</a> and we will send you the Zoom link:More information can be found at <a href="https://ddec1-0-en-ctp.trendmicro.com/wis/clicktime/v1/query?url=https%3a%2f%2fcancerhub.london&umid=4fb6b6e5-1386-4df6-9dc6-8fb636f3b6ea&auth=459f9f7bc481dfe7772a99aa823379706fe6b9b2-0fa6745ff23a67d0cbbd2feac89c7941d22b0c87" target="_blank">cancerhub.london</a>.

<div class="OutlineElement Ltr SCXW83949151 BCX8">The Royal Marsden NHS Foundation Trust has an exciting vision for the future of its Chelsea hospital, with plans to expand and improve its world-leading research, treatment and care. </div><div class="OutlineElement Ltr SCXW83949151 BCX8">As demand for cancer services increases, and one in two of us will be impacted by the disease, we must ensure we can be there for everyone who needs us within an environment that is fit for the future. </div><div class="OutlineElement Ltr SCXW83949151 BCX8">That is why we are currently exploring proposals to improve capacity and provide a modern patient environment by sensitively adding to the Chelsea site within the next decade &ndash; improving outcomes for everyone affected by cancer locally, nationally and globally. The Royal Marsden Cancer Charity will be fundraising to help make this a reality. </div><div class="OutlineElement Ltr SCXW83949151 BCX8">Our appointed architects, Stanton Williams, have been working closely with us to ensure that any proposed designs meet future clinical and research demand so that the hospital can be there for more people that need us, now and in the future. </div><div class="OutlineElement Ltr SCXW83949151 BCX8">We are committed to conducting extensive engagement on our plans with local residents, the wider public, patients, and our staff to ensure that everyone has the opportunity to provide their feedback. </div><div class="OutlineElement Ltr SCXW83949151 BCX8">We ran two online Patient Engagement workshops in January and February 2025 to explore some of those plans in detail and support us to make sure the designs meet the needs of our patients. We will update this page with future engagement opportunities when they are planned.For more information see <a href="https://www.royalmarsden.nhs.uk/chelsea" rel="noopener noreferrer" target="_blank">the consultation website</a>.</div>

Our plans for the future of The Royal Marsden, Chelsea – have your say 

The Institute of Cancer Research and Royal Marsden are refreshing the current research strategy. A group of public contributors have been involved in this work already and have provided input into the detailed strategy text. Part of this refresh includes new theme names, and we are seeking ideas and suggestions for the name of the fourth theme. We have not yet successfully found a strong name for the fourth theme and are therefore seeking input from patients and the public to help us. The revised strategy will build on our <a href="https://www.icr.ac.uk/about-us/strategy-2022-27/world-class-research" rel="noopener noreferrer" target="_blank">existing research strategy, find it here</a>. Our potential new themes are as follows:Theme 1: Fundamental Science. This Theme is focused on understanding how cancers behave to improve our knowledge of cancer development and inform the other themes of our strategy.Theme 2: Innovative Diagnostics. This Theme covers research into earlier, faster and more precise ways of diagnosing cancer. We aim to develop more digital and advanced methods to detect the disease earlier, to determine the best personalised treatment and identify initial signs of recurrence or resistance.Theme 3: Precision Therapies &ndash; In this Theme we will exploit our understanding of cancer to create better treatments for local and metastatic disease and test them in patients for the first time. Theme 4 will focus on late-stage clinical studies that provide the evidence to support the routine use of new diagnostics and treatments in the NHS and across the world. The theme will also research tailored supportive strategies to improve the experiences of patients along the whole pathway of cancer care.Please add your ideas for what we should name Theme 4, that are in line with the other Themes names, in the ideas board below. We would like most ideas by 20th November, so we could discuss them at the Research Strategy Board on 25th November 2024.

Help us to name the fourth theme of our refreshed research strategy

We are keen to understand Black women&#39;s views and experiences of making lifestyle changes following breast cancer treatment.Breast cancer is the most common cancer affecting women around the world. About 1 in 7 women will be diagnosed with it during their lives in UK. Many women undergo successful treatment for breast cancer, and some may wish to make lifestyle changes after. However, studies have shown that this is not the same for Black women, whose outcomes have not been as good. Very few studies have included both Black women and ethnic minority women in their study populations. There are many reasons for this, including personal and social factors, how advanced the cancer is when it&#39;s found, and the biology of the cancer itself. For instance, Black women are more likely to be diagnosed with a type of breast cancer called triple negative breast cancer.Additionally, disparities in care play a role. These include not just having access to care but also overcoming cultural barriers to using the care and treatment options available.How can you get involved?We would like to hear from Black women who have been diagnosed with breast cancer, as well as their families and friends on why and how people make lifestyle changes. We want to understand more about why people may or may not make lifestyle changes and what resources or support could help.Please add your ideas below.If you would like to join a discussion group on this topic please email Sarah directly at <a href="mailto:Sarah.Adomah@rmh.nhs.uk">Sarah.Adomah@rmh.nhs.uk</a> or subscribe for project updates on the &lsquo;Stay informed&rsquo; box to the bottom right of this page.

What do Black women need to support lifestyle changes after breast cancer?  

This project is based around the Radiotherapy workforce and online Adaptive Radiotherapy (oART). It aims to make oART available to more patients in more departments by expanding training and job roles for staff.In Radiotherapy we now have a new generation of treatment machines to further personalise a patient&#39;s radiotherapy treatment at each treatment session with a process known as online Adaptive Radiotherapy (oART). Online Adaptive Radiotherapy requires a new scan at each radiotherapy session and if the patient&#39;s anatomy has changed since the previous sessions, we can update the treatment whilst the patient is on the couch. This is now possible with the help of artificial intelligence (AI). The benefits of personalising radiotherapy treatment are more precise treatments with better disease control and fewer side effects.In the UK, the people who usually design patient specific radiotherapy treatments are often known as Dosimetrists and hold specialist radiotherapy treatment planning knowledge. The people who usually deliver radiotherapy treatments are known as Therapeutic Radiographers. Often Dosimetrists do not deliver treatment on the radiotherapy machines and treatment Therapeutic Radiographers feel they do not have enough treatment planning knowledge to design the patient treatments or understand what the AI is doing.We would like to propose a study to develop a training plan to expand the roles of Therapeutic Radiographers and Dosimetrists so that Therapeutic Radiographers undertake more planning training and Dosimetrists can deliver more treatments, therefore increasing the number of staff who can plan and deliver oART.How can you get involved?Based on your experiences of radiotherapy (as a patient or a carer) do you have any thoughts or ideas to share (below) that could inform or support this project?- What are your thoughts about AI automating adaptive radiotherapy?- How do you feel about role expansions for Therapeutic Radiographers and Dosimetrists?

Training and role expansion for the Radiotherapy workforce

1 in 5 individuals with cancer also have diabetes. Cancer treatment can lead to high glucose levels in those with diabetes. Patients who do not have diabetes can also be affected. Some evidence suggests that patients with both diabetes and cancer might have a poorer experience following cancer treatment. However it is not known if this is because diabetes changes the way cancer behaves or the way it responds to treatment. Therefore we do not know at present how best to monitor and treat peoples&rsquo; glucose levels during and after cancer treatment.What do you think about monitoring your blood sugar levels?To monitor the effect of cancer treatment on blood sugar levels, people can check their blood sugar levels at home using a finger prick test. If the blood sugar levels are found to be consistently high, a doctor or nurse in a GP surgery or cancer day unit would start diabetes treatment to control a person&rsquo;s blood sugar levels during their cancer treatment. Diabetes medications can be used to manage high blood sugars both in people with diabetes (who may need to start treatment for the first time or take additional treatment) and in some people who did not have diabetes at the time of their cancer diagnosis, but develop high sugar levels during their treatment. How can you support this work?<ul type="disc"><li>If you are over 18 and have received cancer treatment or are about to start please fill out the survey below. You do not need to have diabetes or have had high glucose levels during cancer treatment to fill in this survey.</li><li>If you have diabetes or have experienced high glucose levels during your cancer treatment and would like to get involved in planning this research further please email <a href="mailto:Dola.Awoyemi@rmh.nhs.uk">Dola.Awoyemi@rmh.nhs.uk</a></li></ul>We will update this page with the second part of this work - on the impact of diabetes and high blood sugar levels on cancer - in the coming months. Make sure you are signed up on the platform to receive a notification on this.

Help us develop future approaches to managing diabetes in people with cancer

Your help and involvement is needed to make our research of value to everyone. This is important to ensure that everyone is included in future research, making better choices about new treatments that are available to patients.Due to research, cancer treatment continues to improve patient outcomes. However we know that some groups of people are less likely to take part in research than others.<img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/cd408ff2753f5db0509ba12112ca51b6985c53c3/original/1723197666/770120e1f9c1de4f59a558f7aa24c25f_main_page_image.PNG?1723197666" style="width: 628px;" class="fr-fic fr-dib">How can you help?We would like to hear from people from all backgrounds. What you tell us can support different people taking part and improve our research. Please add an idea or join the discussion forum below.

Help us make research for everybody

We would like to invite expressions of interest to become either Chair or Deputy Chair for the Patient and Public Involvement and Engagement (PPIE) in Research Steering Group. This is an important partnership group within The Royal Marsden, Biomedical Research Centre, Institute of Cancer Research and Clinical Research Facility, bringing together researchers and patient and carers representatives supporting these organisations and all research areas. We will need active and proactive individuals with:<ol start="1" type="a"><li>A good overview of the research landscape at the RM/ICR, i.e. BRC, ICR, CRF and/or individual research themes/areas</li><li>An active role in research, being involved with at least one research theme/area at the RM/ICR</li><li>Being active with at least one research project, ideally as a co-applicant at the RM/ICR </li><li>Able to work collaboratively with the RM/ICR Head of Patient and Public Involvement and Engagement, and all members of the group.</li><li>Good chairing, organisational and patient leadership skills. </li></ol>For further information, please look at the Terms of Reference of the Group, to the right of this page. Patient and public contributors with diverse characteristics, including cancer site, and those with no chairing experience at the RM/ICR would be preferred. For queries, please contact directly:Markella Boudioni, Head of Patient and Public Involvement and Engagement, at <a href="mailto:markella.boudioni@rmh.nhs.uk">markella.boudioni@rmh.nhs.uk</a>.If you would like to express an interest, please respond directly to <a href="mailto:patientsinresearch@rmh.nhs.uk">patientsinresearch@rmh.nhs.uk</a> / <a href="mailto:BRC.PPI@rmh.nhs.uk">BRC.PPI@rmh.nhs.uk</a> by 21st August 2024. The next meeting of the groups is on 5th September 2024, 12-2, and ideally, we would like to welcome the new Chair/Deputy Chair then.

Are you interested in chairing our PPIE in Research Steering Group?

Acute Myeloid Leukaemia (AML) is a cancer of the bone marrow. There are many different types, but in most cases the AML cells take over the bone marrow and prevent production of normal red and white blood cells and platelets. The standard treatment is intensive chemotherapy. Although it is effective at killing the leukaemia cells, they can develop resistance and come back. The chemotherapy also kills healthy blood cells and has unpleasant side effects. There is therefore an urgent need for new, effective and well tolerated therapies for Acute Myeloid Leukaemia.Our previous research has shown that activation of a chemical pathway called the HIF, or hypoxia-inducible factor pathway, can kill the leukaemia cells. We have developed several drugs which can activate the pathway and they have proven effective in the laboratory setting. This project aims to increase understanding of these drugs in order to develop a clinical trial for this treatment.How can you get involved? This project relies on patients with AML donating blood and bone marrow samples, which would be taken alongside samples needed for their diagnosis and treatment. How can we best explain the research to patients when we request the samples? Are there any barriers or reasons why patients may choose not to donate these? Please add your ideas below. Please also add any ideas on how/ where to share this research with relevant groups and networks.

Developing new treatments for leukaemia

Immunotherapy is a cancer treatment that helps your immune system recognise and fight off cancer cells. Immune Checkpoint Inhibitors (ICIs) are a type of Immunotherapy that block proteins that stop the immune system from attacking cancer cells.Immunotherapy can be used to treat many different types of cancer. This study is looking at patients with gastrointestinal cancer who are being treated with Immune Checkpoint Inhibitors. Gastrointestinal cancers include oesophagus, stomach, liver (HCC), small and large intestine, pancreas, biliary system, colon, rectum and anus cancer.We would like to hear about your experience of this treatment, and if you developed any side effects. We will use this information to see if we can improve patient care and follow up.If you are or have been treated with Immune Checkpoint Inhibitors for gastrointestinal cancer or any other type of cancer (or you are a carer of someone in this position) please:<ul><li>Share your story below - tell us about your experience of treatment and the information and support received from healthcare professionals. You can also email this to <a data-fr-linked="true" href="mailto:Laura.Collantes@rmh.nhs.uk">Laura.Collantes@rmh.nhs.uk</a></li><li>Share your ideas below - where do you go for information, advice and support?</li><li>Be part of a patient advisory group to support the research and have input into the design of this project. This will be a virtual group that will meet at key points in the project. Email <a href="mailto:Laura.Collantes@rmh.nhs.uk">Laura.Collantes@rmh.nhs.uk</a> to register your interest.</li></ul>

Patients’ experiences during treatment with Immunotherapy

We now have funding for a research project looking at the fear of cancer recurrence (cancer coming back). Thank you for your contributions to the ideas board below.We want to support as many patients as we can with their fear of cancer recurrence. This is especially important for people for whom it is impacting their day to day lives. However resources to provide this support are limited. We want to look at how we can support more people.We want to test using a tool to assess people&rsquo;s level of fear of cancer recurrence. This tool will be trialled in lymphoma, testicular and melanoma patients aged between 18-39. The reason for choosing this age group is that research suggests that younger adults are at greater risk of higher levels of fear of cancer recurrence. The tool consists of a set of questions, and people will then be given a low, moderate or high level result. This will determine the support people receive. The research will be focused on the support given to the &lsquo;moderate&rsquo; group. The &lsquo;high&rsquo; group will be referred to the Adult Psychological Support Service. We want to look at how the &lsquo;moderate&rsquo; group can be supported by their clinical nurse specialist using techniques from cognitive behavioural therapy. We want to see whether this support can lower patients&rsquo; fear of cancer recurrence.How can you get involved?<ul><li>Join the discussion forum below and add your views. Open to all.</li><li>If you are 18-39 years old please fill out the quick poll below.</li></ul>

Fear of cancer recurrence – getting the right support

<a href="https://www.mariecurie.org.uk/">Marie Curie</a> is inviting people living with a life-limiting illness, those supporting them, or those who have been bereaved, to complete a survey to inform their priorities for future palliative and end of life care research.Marie Curie&rsquo;s first survey, earlier this year, identified a long list of 79 questions that people see as priorities for palliative and end of life care research. This second survey is asking people to prioritise these questions further. This will provide Marie Curie with a shortlist of questions to be discussed at a final workshop so that they can identify their top ten research priorities.The survey is open until August 31st 2024 and they&rsquo;d like to hear from:<ul><li>People living with a serious life-limiting illness </li><li>People who are caring for a loved one or someone they know </li><li>Bereaved carers, family members or friends </li><li>Volunteers who support people</li><li>Members of the public </li><li>Health and Social Care Professionals </li><li>People from all backgrounds and faiths</li></ul>You can take the survey <a href="https://qualtrics.ucl.ac.uk/jfe/form/SV_0upill9Fq86LFVc">here</a>Want to learn more? Visit Marie Curie&rsquo;s Palliative and End of Life Care Research Priorities Project <a href="https://palliativecarepsp.wordpress.com/">website</a>.

How can palliative and end of life care be improved?

Join us for this event on Wednesday 12th June 2024, 4.30- 9pm. Held by the NIHR Biomedical Research Centre the event will take place at The Institute of Cancer Research, Sutton, London.Learn about the latest research breakthroughs in the fields of breast and gynaecological cancer. We will be joined by doctors, researchers and charities who will share their knowledge and insights on innovative approaches to tackling these cancers. Food will be provided.<h3><a href="https://www.cancerbrc.org/news-events/events/new-avenues-detection-and-treatment-of-breast-and-gynae-cancer" rel="noopener noreferrer" target="_blank">Find more information and book your place here.</a></h3>

Event: New avenues in detection and treatment of breast and gynaecological cancer

It is common after a cancer diagnosis for people to have distressing thoughts and feelings; over time they usually lessen or become manageable. However, for some people these difficult thoughts and feelings continue to be overwhelming. <a href="https://www.royalmarsden.nhs.uk/your-care/adult-support-services/adult-psychological-support-service" rel="noopener noreferrer" target="_blank">The Adult Psychological Support Service</a> at the Royal Marsden is available to offer specialist support for patients in these situations.The service would really like your opinion on what care they should deliver. Your opinions will shape what the service looks like. If you are or have been a Royal Marsden patient or carer in the last two years <a href="https://forms.office.com/Pages/ResponsePage.aspx?id=awNiYX2v00a0tBDuJhAZ34iUYq0jmfhMtlmoCnm3X59URFVQVTVCMkhYUktPNjRFM0RKUjVSQkdGNS4u" rel="noopener noreferrer" target="_blank">please fill out this survey</a>.

Help us develop the Adult Psychological Support Service

This new 3 year research project aims to answer important questions about ethnicity and breast cancer. It is funded by Cancer Research UK and led by researchers at Oxford University. The study will investigate:<ul><li>Why women of African, Caribbean, Indian and Pakistani backgrounds are less likely to get breast cancer but more likely to have more aggressive forms of the disease when they do.</li><li>How different risk factors vary in women from different ethnic groups, and what influence they have on the risk of getting breast cancer and the type of breast cancer diagnosed.</li></ul>To help design and implement this new study the team are forming a diverse and inclusive Patient and Public Involvement (PPI) group:We are inviting women with a personal experience of breast cancer, or women who have an interest in breast cancer, to help us develop a new study. We aim to create a dynamic and inclusive group, made up of women from the largest ethnic groups in England: White British, Black African and Black Caribbean, Indian and Pakistani. We invite women from all these groups to express interest.See more information in the project flyer to the right of this page. If you would like to express your interest in joining the group email <a data-fr-linked="true" href="mailto:oxfordcancerppi@medsci.ox.ac.uk">oxfordcancerppi@medsci.ox.ac.uk</a>

Join a group looking at ethnicity and breast cancer

Imperial College London is looking at new ways to monitor health and pick up diseases. They are looking at using testing that does not cut the skin or enter any of the body spaces: non-invasive testing. It is less painful and less risky for the patient than other types of tests.The research team is currently working on a breath test that might detect health conditions and cancer at an early stage. They would value your opinion. The research is based on the detection of molecules (the smallest parts) found in breath. It focuses on gastrointestinal cancers (cancers along the digestive system).To gather a wide range of opinions the Imperial College team is asking the general public to complete <a href="https://imperial.eu.qualtrics.com/jfe/form/SV_4ZW3G5V5TFb2O7c" rel="noopener noreferrer" target="_blank">this short survey</a>. They are very keen to hear from people from all backgrounds and groups. If you would be interested in attending a focus group for this project, please include your contact details/ email address in response to question 4 of the consent form (follow the survey link) and Imperial College will contact you.

What do you think about breath testing?

Exercising &ndash; being physically active - is important for everyone, including patients with cancer. The Royal Marsden has created a Physical Activity Strategy with staff, patients and interested partners. You will find it on the right of this page. The aim is that everyone at the Royal Marsden is encouraged to be active.We want to get to a place within the Trust where physical activity is seen as everyone&rsquo;s business. We know that people who are active themselves are more likely to encourage physical activity with their patients so this strategy is very much for our staff and volunteers as well as our for our patients.During the launch of the strategy our volunteers led guided walks using maps (see them on the right of this page) close to our hospital sites which we co-designed with a charity called <a href="https://www.livingstreets.org.uk/" rel="noopener noreferrer" target="_blank">Living Streets</a>. We are keen to know whether patients would like us to continue providing these guided walks from our Sutton and Chelsea sites.How you can get involved<ul type="disc"><li>Please share your ideas on these guided walks. Would you like to take part? How long should they be? What time of day should they take place? Please add your suggestions to the ideas board below.</li><li>As we plan the new Chelsea Cancer Centre development, we would like ideas about how the new hospital site could encourage people to be more active, please add yours to the guestbook below.</li></ul>

Image is of three people on a guided walk near our Chelsea hospital

Be part of creating an active Marsden

We would like to talk to people with experience of head and neck cancer &ndash; either as a patient, family/friend, or carer. Your thoughts and opinions are invaluable and will help us develop a new head and neck cancer research trial, called immunoREACH.One of the most important questions for people who have been through radiotherapy is &lsquo;how do we know if the cancer is going to come back&rsquo;? We are trying to find more accurate and effective ways of detecting when cancer has come back through research. ImmunoREACH aims to test if a simple blood test, or &lsquo;liquid biopsy&rsquo;, can detect the return of cancer earlier than usual imaging (i.e., CT scan). This could improve outcomes by giving more patients the option of surgery and the potential for earlier treatment with immunotherapy.We would like to know how you feel about this research to make sure the reasons why we want to run this trial are easy to understand, and that we are asking the best research questions for patients. Communicating the research background, along with the possible risks and benefits in a clear and understandable way, is essential to ensure that immunoREACH is designed so that everyone, including underserved groups, has the opportunity to take part.We are particularly keen to hear from those who find it difficult to travel for treatment, have caring/work responsibilities and welcome those from different backgrounds and cultures.Planned online Discussion Groups will be held on: <ul><li>Thursday 29th February: 16:00 &ndash; 17:00</li><li>Tuesday 5th March: 14:00 &ndash; 15:00</li><li>Wednesday 6th March: 19:00 &ndash; 20:00</li></ul>Groups will be up to 60 mins long and participants will receive a one off payment of &pound;30. If you would like to attend one of these discussion groups, please email <a href="mailto:immunoREACH-icrctsu@icr.ac.uk">immunoREACH-icrctsu@icr.ac.uk</a> by 27th February 2024.

Could you help us develop research for head and neck cancer?

Clinical Lead &ndash; Dr Nicolo BattistiProject Lead and Clinical Nurse Specialist &ndash; Anne BarrellRehab Lead - Hannah Furness With the support of our <a href="https://rmpartners.nhs.uk/" rel="noopener noreferrer" target="_blank">West London Cancer Alliance RM Partners</a>, we continue developing a Senior Adult Oncology Programme (SAOP), dedicated to the care of older adults (over 70) with cancer at The Royal Marsden.Our SAOP team works alongside medical oncology teams and includes different professionals; a doctor, a clinical nurse specialist, a physiotherapist, an occupational therapist, a dietitian, a pharmacist and a speech and language therapist. The aim is to provide patients with a more personalised treatment approach by evaluating and addressing key areas of health and wellbeing. This approach can reduce the risk of side effects and hospital admissions and improve patients&rsquo; quality of life on anticancer drug therapies.The programme started in the Breast Unit medical oncology clinics at the Sutton site of the hospital in November 2021 and has since extended across other medical oncology clinics (Lung, GI, Renal/Melanoma, Gynae, Urology and Haematology) and other hospital sites (Kingston and Chelsea).As part of the ongoing service development, we are gradually expanding the service to include older individuals diagnosed with different tumours and receiving cancer care at the other branches of the hospital (Chelsea and Kingston). We are also working to make this a permanent team in the Trust.How can you get involved?<ul><li>Aged 70 or above? Please help us improve our service by filling out the survey below. The feedback will be used to develop the service to meet the needs of the patient population who we care for.</li></ul>

Help us to establish and improve the Senior Adult Oncology Programme

Everyone who enters an MRI scan must be safety screened. This involves investigating whether the patient has any medical implants and/or foreign objects on or within their person that could be unsafe. For those with communication difficulties this can be challenging if they are unable to communicate with the MRI team. This research will investigate the current methods of MRI safety screening, with a focus on those who experience communication difficulties, whether through a learning disability or difficulty, neurological condition or mental health condition. We are interested to hear your views on MRI processes, including the screening process and our current procedure and in hearing about the public&rsquo;s general understanding and how we could improve it. We are especially keen to hear from people who experience communication difficulties, or their carers/family members. We have recently moved to online safety questionnaires in MRI and it would be helpful to hear about your experience with them. How can you get involved?<ul><li>Please add an idea to the ideas board below.</li><li>Please fill out the survey below.</li></ul>

The pre-MRI screening process: what are your thoughts? 

Share your views on this animation from Clatterbridge Cancer Centre

Are you interested in taking part in improving the patient experience during investigations for suspected lung cancer? We&rsquo;re looking for people who have had chest X-rays for suspected lung cancer, regardless of the outcome, diagnosis, or treatment plans. We&rsquo;re also keen to hear from their close family or friends of such people to learn what they experienced as a result of that time. What is it for? The research team at the Centre for Healthcare Innovation Research at City, University of London is planning a research study to understand the thoughts and experiences of people, their close family members and friends during the investigations for suspected lung cancer. It is funded by Innovate UK as part of a wider project examining the use of an Artificial Intelligence (AI) based computer programme used in chest imaging. The research team is inviting people to join a patient and public involvement (PPI) advisory group. We would like to understand the experiences of those referred for chest imaging and their immediate family/friends if affected. What would PPI advisory group members be expected to do? PPI group members will be asked to attend one workshop to share their experiences during the investigations for suspected lung cancer in a focus group. You can choose to take part in person or online. TimelineIn December 2023 and January 2024, we plan to organise one in-person and one online workshop during working hours, and one online workshop 6 pm &ndash; 8 pm weekdays. Each workshop would take approximately two hours. The in-person workshop will be at City, University of London (Northampton Square, London, EC1V 0HB), and online workshops will be on Zoom. Detailed information will be shared after registration via email. Remuneration You will receive payment for any time spent in the workshop, &pound;25/hour, and travel expenses for the in-person workshop. If you are interested and would like to know more please email Janette Rawlinson, <a href="mailto:j.rawlinson@justrealsolutions.com">j.rawlinson@justrealsolutions.com</a> or Menghan Cui, <a href="mailto:menghan.cui.3@bayes.city.ac.uk">menghan.cui.3@bayes.city.ac.uk</a>

Help to improve the patient experience during investigations for suspected lung cancer

We are now at the final year of our current Royal Marsden Foundation Trust 5-year strategic plan which runs up to March 2024. The Trust has recently completed a 3 month staff and patient engagement process based on the initial work (see below for patient engagement details). The Trust will now move into a phase of reviewing that feedback and applying it to a more detailed strategy document which we hope to have approved by Trust governance and launched by Spring 2024. The Trust is greatly appreciative of the valuable input that our patients and carers gave during the engagement process and will keep you informed via the Trust communication channels, including this one, when the strategy is ready to launch.How we sought your involvement1. We ran two virtual workshops. At the first workshop there was an opportunity to reflect on the current strategic plan as well as comment on draft proposals for the new plan. At the second workshop we discussed developments and reviewed feedback received from all stakeholders.2. We asked people to contribute to the discussion forum below.When developing the Trust Strategy for 2024/25-2028/29 it has been necessary for The Royal Marsden to look at the national and local context, and policies. This has identified five key areas where it is important that the Trust Strategy aligns it&rsquo;s focus for the next five years.The identified key areas are indicated in the diagram below, and detail has been included about both the national and local ambitions for each.<img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/f7b5a4f8ec799f36bd5a1d6651667b3952d949c1/original/1690534533/afe2efddd444f38686e5317da2d7b66c_forum_image_4.png?1690534533" style="width: 800px;" class="fr-fic fr-dib"><table align="center" cellpadding="0" cellspacing="0"><tbody><tr></tr></tbody></table><div style='margin:0cm;font-size:15px;font-family:"Georgia",serif;color:#404040;'><table align="center" cellpadding="0" cellspacing="0" style="margin-right: calc(0%); width: 100%; margin-left: calc(0%);"><tbody><tr></tr></tbody></table></div> We asked people when contributing to the forum below to consider these questions:What does each area mean to you?&nbsp;Do you understand what they are about?&nbsp;What is important to you within each area?

The development of the Royal Marsden Foundation Trust 5-year strategy

<ul><li>Thursday 7th December, 12.30 -14.30 or</li><li>Wednesday 13th December, 18.00 &ndash; 20.00 (choose which session is convenient to you)</li></ul>This session will provide an overview of patient and public involvement at the Royal Marsden. It will include basic definitions and terms used. It will also provide some information on The Royal Marsden Foundation Trust, the Institute of Cancer Research (ICR) and the NIHR Biomedical Research Centre at The Royal Marsden and the ICR (BRC), i.e., covering core values and strategies linked to involvement and engagement. An overview of how PPIE works within these organisations, i.e., governance, policies, structure, groups and activities will be given. Information on support and training available to patient and public contributors will be also covered.Please email <a data-fr-linked="true" href="mailto:patientsvoice.online@rmh.mhs.uk">patientsvoice.online@rmh.nhs.uk</a> indicating which session you would like to join (if you have not attended a PPIE Induction before).

Patient and Public Involvement and Engagement Online Induction

Evolving the Ecosystem is an art-based project that draws ideas from current research at the Institute of Cancer Research (ICR) about cancer, not as an isolated disease, but as part of the body&rsquo;s complex ecosystem. Julie Light, artist in residence at the London Cancer Hub (LCH), has been exploring how the work of the LCH might also be thought of as its own unique ecosystem, one which brings together scientists, businesses, medics, educators, carers and patients on one site to prevent and treat cancer. Julie is part of a growing group of interdisciplinary artists who believe that artwork based around scientific, social and medical ideas like this could help contribute to generating new conversations (<a href="https://eos.org/opinions/why-and-how-to-engage-artists-in-science" rel="noopener noreferrer" target="_blank">see, for example this article</a>), in this case about how we exist with cancer and how we hope to eradicate it.As well as talking to cancer researchers at the ICR about their research into cancer as an ecosystem, Julie has talked to people from different parts of the London Cancer Hub to find out more about their experiences of being part of this challenging collaborative undertaking. She is particularly interested in the language and expressions that we use to describe experiences of cancer treatment, whether from the clinical, patient or research perspective. She uses visual ideas and metaphors drawn from these conversations to inspire her artwork, and, alongside her research conversations, Julie has been experimenting with creating new prototype artworks based on some of the ideas that emerge from these conversations.Julie&rsquo;s residency at the LCH has been focused on research and development rather than creating final pieces of artwork, she hopes the prototype artworks she has made, will in the future form the basis for some larger installations for exhibition.Update: The opportunity to get involved has now closed. Julie has met and interviewed current and former patients at the Royal Marsden Hospital in Sutton and members of the public based in the London Borough of Sutton.End of project event: Julie is holding an event displaying some artwork prototypes and samples along with some information about the process at the ICR on Wednesday 31st January, 11-3pm, see the flyer to the right for more details. If you would like to attend RSVP to <a href="mailto:evolvingecosystem@gmail.com">evolvingecosystem@gmail.com</a> Image: Julie Light, Diorama 1 (Detail), 2017

Evolving the Ecosystem – an art-based research project with Julie Light, Artist in Residence

Hypnosis as a therapy is used across the world every day, it can be used to help cancer related pain, as well as emotional distress and anxiety. In some regions in the UK it can be available through the NHS as a complementary therapy. It is more likely to be funded privately. However we do not have enough good quality evidence on how well it works for patients. We want to further explore the benefits, any potential pitfalls and what place it has in health settings.This study is about listening to people with experience of hypnosis in breast cancer care in the UK to add to and improve our knowledge on the subject. As a University professional doctorate psychotherapy research study, its aim is to carefully, and sensitively learn about the personal experience of women who have received hypnosis in breast cancer care.There are two research groups for the study: Participants, group 1. Women diagnosed with breast cancer who, in the last 5 years, have received hypnosis for cancer related pain (e.g. emotional distress, anxiety, fear, grief, trauma, loss, anguish, etc., and or any physical pain).Participants, group 2. Hypnotists/hypnotherapists who have used hypnosis in the UK within the last five years for women diagnosed with breast cancer. Specifically for cancer related emotional and or physical pain.Anonymity for all participants is assured.Please get in touch with Bryn Higgott at <a data-fr-linked="true" href="mailto:bghiggott@uclan.ac.uk">bghiggott@uclan.ac.uk</a> if you fit the above criteria and are interested in attending on online interview. Deadline for interviews is 29th February 2024.(Ethics approval information: UCLan Ethics approval number is: Health 0379FR. The NHS have given Advisory Board approval to proceed as not requiring NHS ethics approval. This has already been supplied to the Ethics Committee and is not required for resubmission.)

Bowel cancer is the 4th most common cancer in the UK with the main treatment being surgery and chemotherapy. Of those who have surgery around 40% are left with a permanent stoma and more will experience a stoma formation and reversal. Previous surveys have shown that people are not receiving the nutritional support that they need to overcome nutritional difficulties following bowel cancer treatment.Currently there is a lack of standardised support and advice to patients following a stoma formation for bowel cancer treatment. The aim of this project is to understand patients experiences following stoma formation and what information and support they would have found helpful following the stoma formation. The information gained will go forward into developing a larger research grant to explore how best to support people who have a stoma formation following colorectal cancer surgery to re introduce diet and control symptoms. We would like to hear from anyone aged over 18 years old who has had a colostomy or ileostomy formation as part of their treatment for bowel cancer, or their carers. We would like to hear from both those who have had a permanent or a temporary stoma formation. How can you get involved?There are various ways to get involved with the project and help us understand your experience of reintroducing nutrition and hydration following a colostomy or ileostomy formation as part of your bowel cancer treatment. The information you provide will be used in the design of the research project.Share your story below &ndash; Tell us about your experience of colostomy or ileostomy formation and the information and support received from healthcare professionals.Share your ideas below &ndash; Share your insights into what you think would be helpful and what information you would have liked to received for caring for your stoma.Be part of a patient advisory group to support the research &ndash; Be part of a small advisory group and have input into the design of this project. This will be a virtual group that will meet Monday 4th December 11-12am or Tuesday 12th December 5-6pm, please email Victoria.nelson@rmh.nhs.uk if you would like to join. You will be reimbursed for your time in contributing to this virtual group.

Help design support and advice for patients with stomas

<table class="noBorder" style="width: 100%;"><tbody><tr><td style="width: 50.0000%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/49a65545db3150e06ccc72d597e9059661e42c22/original/1649336346/e0ffdd0aaeaec3fab10a429e5b289b0f_CMC_care_plan.jpg?1649336346" style="width: 300px;" class="fr-fic fr-dib" alt="Patient and family member looking at tablet"> </td><td style="width: 50.0000%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/fe6d3cf6963f583e0fba86e2029fae4fed33e723/original/1648751298/9b2616f452418e1623eb60eec5af111d_alex-nemo-hanse-gA3YJpTWJSs-unsplash.jpg?1648751298" style="width: 250px;" class="fr-fic fr-dib" alt="Young man checking smartphone credit alex nemo hanse unsplash"></td></tr></tbody></table>In March 2023 the Royal Marsden upgraded the electronic patient record system with a new platform called Connect. As part of the system upgrade, we introduced a new patient app and website called MyMarsden.Supporting the Trust&rsquo;s MyMarsden team throughout the launch has been the MyMarsden Patient and Public Involvement (PPI) Group. Made up of a diverse mix of patients, carers and members of the public, the Group provides feedback to the hospital on the reality of accessing and using MyMarsden.Over 25,000 patients are now signed up to MyMarsden and benefiting from seeing their appointments, letters, and results all in one place. We realise that as, with most new systems, not everything has gone completely smoothly and there is still a lot of work going on behind the scenes to make this new technology work for all our patients.From the start, the PPI feedback and input has ensured that patients are kept up to date with advances and to reassure them that any issues are continuously being worked on and improved.The Group has, for example:<ul><li>Highlighted difficulties with signing up to MyMarsden, the confusion some patients found with the MyMarsden/MyChart titles, and the initial lack of historic (before the new system) patient information available in MyMarsden.</li><li>Reviewed the MyMarsden patient literature to make sure it is understandable and &lsquo;speaks&rsquo; to patients and members of the public, ensuring diversity and inclusion throughout.</li><li>Helped develop a patient survey to obtain feedback on how patients were finding viewing their results in MyMarsden.</li></ul>There was a fantastic response to the survey with over 1,120 patients sharing their views. The majority described finding it easy to find their results, but many found there were occasionally results missing that required a staff member to release them. The PPI Group are working with the MyMarsden team to identify ways to best communicate to patients what results they can expect to see in MyMarsden and when.As a result of the PPI feedback, information and guidance has also been added to the <a href="https://www.royalmarsden.nhs.uk/mymarsden-faq">MyMarsden FAQ page</a>.The PPI Group continues to provide feedback on what is working well and to make suggestions on where MyMarsden can be further developed to make it even easier to use and more valuable for patients throughout their care.If you would like to share your experience of using MyMarsden and ideas on how it could be developed, please email <a href="mailto:MyMarsdenPPI@rmh.nhs.uk">MyMarsdenPPI@rmh.nhs.uk</a>.What if I do not want a MyMarsden account? MyMarsden brings many benefits for our patients, and we will support all patients who want to access it. However, we know that digital technology is not for everyone.Rest assured if you do not want to use MyMarsden to access your Royal Marsden healthcare information, there will still be other options available for you - including the patient letters that we currently send through the post.If you do not want to download the app, you can instead access MyMarsden via desktop or PC at <a href="http://mymarsden.rmh.nhs.uk/" target="_blank">http://mymarsden.rmh.nhs.uk</a>.

Person checking their online health record on a smartphone, credit Alex_Hanse Unsplash

Help improve your experience of MyMarsden

<a href="https://www.royalmarsden.nhs.uk/" rel="noopener noreferrer" target="_blank">The Royal Marsden</a>&nbsp;and&nbsp;<a href="https://www.icr.ac.uk/" rel="noopener noreferrer" target="_blank">The Institute of Cancer Research</a>&nbsp;(ICR) carry out ground-breaking work on the latest cancer treatments and technologies.&nbsp;Together, the two organisations form the only <a href="https://www.cancerbrc.org/" rel="noopener noreferrer" target="_blank">Biomedical Research Centre</a> (BRC) dedicated specifically to cancer and have a long history of driving research that changes NHS care and practice, tackling the inequalities and challenges of cancer.The BRC&#39;s eight research themes map onto the entire patient journey and align with the <a href="https://www.longtermplan.nhs.uk/areas-of-work/cancer/" rel="noopener noreferrer" target="_blank">NHS Long Term Plan priorities for cancer</a>.&nbsp;The eight themes are included in the diagram below and further information is available via the links on the right.&nbsp;<img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/325f568ee2b440477e311bc6ce06091c5e3c2b8d/original/1690881967/a051c71636b9478cd87b71ca8bd8910e_S3.1_-_Proposed_NIHR_BRC_%28thematic_structure%29_-_Version_July_2022.jpg?1690881967" style="width: 1000px;" class="fr-fic fr-dib">Each theme has a quarterly working group, made up of researchers, other staff and patient and public contributors, to discuss new and existing projects. However we aim to collect research ideas from a wider patient and public community - that&#39;s you!&nbsp;We want to hear what specific research is important to you, please add your ideas below.<div class="clearfix text-formatted field field--name-field-spotlight-text field--type-text-long field--label-hidden field__item"><div class="clearfix text-formatted field field--name-field-spotlight-text field--type-text-long field--label-hidden field__item"><div class="clearfix text-formatted field field--name-field-spotlight-text field--type-text-long field--label-hidden field__item"><div class="clearfix text-formatted field field--name-field-spotlight-text field--type-text-long field--label-hidden field__item"><div class="clearfix text-formatted field field--name-field-spotlight-text field--type-text-long field--label-hidden field__item"> </div></div></div></div></div>

What cancer research is important to you?

<img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/f57b5b29488ce6a6144a772e7eb95023c61c9da5/original/1729604262/62ba69f2adf220bd3b3323c3ec9b9df2_SPARC_colour.png?1729604262" style="width: 300px;" class="fr-fic fr-dib fr-fil"><table class="noBorder" style="width: 100%;"><tbody><tr><td style="width: 50.0000%;"> </td><td style="width: 50.0000%;"> </td></tr></tbody></table>Welcome to the SPARC study.BackgroundBladder cancer is one of the top ten cancers in the UK. This cancer is broadly categorised into muscle invasive and non-muscle invasive. While treatments for each are significantly different, the consequences of treatment for both types can be considerable for urinary and sexual function.Research into the sexual consequences of bladder cancer for female patients is limited.Aim of this researchThis study aims to understand the sexual consequences of bladder cancer along with needs for sexual recovery in female patients.The research also aims to develop an in-depth understanding of what it means to female patients to live with the sexual consequences of bladder cancer. The findings of the study will influence the development of a clinical intervention to address the sexual recovery and integrate this in to clinical practice.How can you get involved?We would love to hear from you.Please take some time to look at this page<ul type="disc"><li>If you are a female bladder cancer patient or survivor or the partner of a patient, please take a moment to let us know your thoughts and ideas on the ideas tab below</li><li>If you feel able to, please answer the questions in the survey below. You will need to register first.</li><li>We will be running a Patient and Public Involvement event soon - details will appear on this page - if you are keen to be invited, please email me directly, at<a class="external" href="mailto:Rebecca.Martin@rmh.nhs.uk"> Rebecca.Martin@rmh.nhs.uk</a></li><li>If you are on Twitter please flag this page and tweet with #womensbladdercancer.</li></ul>A huge thank you to all those who have contributed to the project so far (for example in the below forum which is now closed). Your input has helped to design the initial part of the study protocol. I look forward to your further input as the project evolves. If you are interested in direct participation into our Stakeholder group, please email me, at <a class="external" href="mailto:Rebecca.Martin@rmh.nhs.uk">Rebecca.Martin@rmh.nhs.uk</a>

Supporting Sexual Recovery for Women with Bladder Cancer (SPARC)

Friday 27th October, 13.00- 17.00, SuttonWe would like to invite you to a face-to-face informal event to celebrate your involvement and engagement with the work of the Royal Marsden on Friday 27th October.<ul type="disc"><li>This will be an opportunity to meet each other and talk about the involvement and engagement work that we are doing.</li><li>We will be meeting at the Royal Marsden at Sutton, so there will be an opportunity to show you around the new Oak Centre &ndash; we will be also visiting Maggie&rsquo;s.</li><li>We will be having lunch and refreshments available. </li><li>A photographer will be around &ndash; so some photos will be taken with your permission.</li><li>A voucher of &pound;150 will be offered for your time. Reasonable travel expenses can also be claimed.</li></ul>If you are interested to join, please register by emailing patientsvoice.online@rmh.nhs.uk by 18th October 2023 at the latest. We will be sending you further details later.

Celebrating Patient and Public Involvement  Event

<img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/8924765eb81c6812dfc11634c7c5c8eb30f9135d/original/1631697873/e628fbc6aa32739af387cea78a86ffa6_etty-fidele-6UWqw25wfLI-unsplash.jpg?1631697873" style="width: 300px;" class="fr-fic fr-dib fr-fil" alt="Photo by Etty Fidele on Unsplash">Increasing diversity in prostate research to produce treatments that work for everyoneCurrent evidence suggests that prostate cancer risk, disease aggression and prognosis vary between men of different ethnic origins. Black men of African-Caribbean ethnic origin are more likely to develop prostate cancer in their lifetime than any other ethnicity.1 in 4 black men is likely to develop prostate cancer in their lifetime,<img class="fr-fic fr-dib fr-fil" style="width: 186px;" src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/8eb3be06fce7680077f968956dd0c20f298402e4/original/1605785723/1_in_4.png_765723afbc96644d6d356d40375d3a92?1605785723">compared with 1 in 8 in men of other ethnic origins.<img class="fr-fic fr-dib fr-fil" style="width: 368px;" src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/6b532009cff969bf3ef3f5ff816c95481797d106/original/1605785794/1_in_8.png_cadcf269260f6d24752176eaeee268b0?1605785794">Source: Prostate Cancer UKBased on these figures we might expect to see more black patients than any other ethnicity taking part in prostate cancer research studies, but previous research has shown that black men are underrepresented in prostate research at the Royal Marsden compared to men of other ethnicity.We want to understand <span style="color: rgb(65, 65, 65); font-family: sans-serif; font-size: 18px; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; background-color: rgb(255, 255, 255); text-decoration-thickness: initial; text-decoration-style: initial; text-decoration-color: initial; float: none; display: inline !important;">why this might be and how we can improve this situation.<hr> How can I get involved in this work?We are looking to recruit 2 patient and public representatives to support the progress of the project. They will be closely involved in the preparation of the interview and focus group discussion questions and support with the focus group discussions.Please read these <a class="fr-green" href="https://patients-voice.cancerbrc.org/breaking_down_barriers/widgets/18464/faqs">FAQs</a> to get an idea of what being a patient and public representative would involve.Contact Bertha Adjei - <a data-fr-linked="true" href="mailto:Bertha.Adjei4@rmh.nhs.uk">Bertha.Adjei4@rmh.nhs.uk</a> - if you would like more information on how to get involved. This research is funded by a patient and public involvement grant from the National Institute for Health Research Biomedical Research Centre at the Royal Marsden and ICR.

Breaking down barriers to involvement in prostate cancer research among black men

We would like to talk to people who have had a diagnosis of breast cancer within the last 10-15 years and have had radiotherapy treatment. We would like you to contribute your thoughts and opinions about the design of a research trial.A UK radiotherapy research trial (FAST-Forward) has already shown that standard radiotherapy treatment for breast cancer can be delivered as safely and effectively in 1 week as treatment given in 3 weeks. People with a slightly higher risk of cancer returning (for example those 50 years and under, and/or those with higher grade cancers), are given an extra dose or &ldquo;boost dose&rdquo; of radiotherapy during their treatment and this is usually given over three or four weeks. We are designing a clinical trial (FAST-Forward Boost) to test whether patients having radiotherapy to the breast including a boost dose can be safely and effectively treated in one week rather than three to four weeks.We want to understand patients&rsquo; perspectives on this research to make sure the clinical trial is patient centred. Radiotherapy treatment needs people to attend hospital every day for treatment so we would really like to hear from people from all types of different backgrounds, different cultures, those who find it difficult to travel to hospital and have caring/work responsibilities. Our planned online Focus Groups will be held on: <ul><li>Wednesday 9th August at 15.00 - 16.00 </li><li>Thursday 10th August 16.00 - 17.00</li></ul>If you would like some more information or are interested in helping to shape this research project by attending one of the focus groups, please contact us by emailing <a href="mailto:fastforward-icrctsu@icr.ac.uk">fastforward-icrctsu@icr.ac.uk</a> by the end of day on the 8th August.

Can you help us to design a clinical trial to improve radiotherapy treatment for people with breast cancer?

We would like to invite people with experience of treatment for cancer that has spread to their spine, or relatives of patients with such experience to join this discussion forum.What is SENSE? A randomised trial to evaluate whether targeted radiotherapy is better than conventional radiotherapy for reducing pain for people with cancer that has spread to the spine. Chief Investigator (Lead Clinician): Dr Merina Ahmed, Statistical/ Methodology Lead: Dr Fay Cafferty We would like to find out if people are supportive of the idea of the trial. We would also like to discuss what they think are the most important questions to try and answer within the trial. We will use their feedback to help develop the trial for a funding application in Summer 2023.No experience of clinical research or patient and public involvement in research is required. We will provide background information and any other support people may need to be able to contribute.The forum will be held online on 20th July 2023 from 12 - 1.30pm. The research team will present the current design of the trial and invite all participants to offer their input and opinions on the design and important questions and aspects from a patient&rsquo;s perspective.The trial is being developed by the <a href="https://www.icr.ac.uk/our-research/centres-and-collaborations/centres-at-the-icr/clinical-trials-and-statistics-unit">Clinical Trials and Statistics Unit</a> at The Institute of Cancer Research, a college of the University of London.If you are interested in finding out more or would like to register to attend the discussion forum, please contact the trial team at <a href="mailto:SENSE-icrctsu@icr.ac.uk">SENSE-icrctsu@icr.ac.uk</a> or register directly via Eventbrite: <a href="https://www.eventbrite.co.uk/e/sense-ppi-forum-tickets-667376891247?aff=oddtdtcreator">https://www.eventbrite.co.uk/e/sense-ppi-forum-tickets-667376891247?aff=oddtdtcreator</a>

Reducing pain for people with cancer that has spread to the spine

Recent studies have found that preparing for cancer treatment so patients are as fit as possible before it starts &ndash; known as prehabilitation or &lsquo;prehab&rsquo; - can often mean they require less time in hospital, cope better with any side effects of their treatment, and recover more quickly.Prehabilitation services can include being offered support and advice with diet and nutrition, opportunities to participate in physical activity and exercise interventions, and psychological support to improve emotional well being. Guidance for lifestyle changes such as smoking cessation may also be provided.RM Partners, the West London Cancer Alliance, is keen to develop services to support people with their well being through their cancer treatment.We want to hear from you about what would help you, for example, what type of services would be beneficial and where would you want to access these.We are also keen to hear from people who have some form of prehab to understand what worked well, what didn&#39;t, and what you might change if you could.Please share an idea below, or ask a question.This is just the beginning of the project, if you want to keep up to date with the next stages please click on &#39;stay informed&#39; on the right or register to hear about other involvement opportunities as our work progresses.

Getting ready for your cancer treatment

This project has now finished.&nbsp;<a href="https://patients-voice.cancerbrc.org/25440/widgets/72016/documents/43656" rel="noopener noreferrer" target="_blank">Find the end of project report here</a>.Transition project team: staff, patients and parents<table class="noBorder" style="width: 100%;"><tbody><tr><td style="width: 50.9866%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/50da6f5438926f1c9a30db951f2a0a844d228c70/original/1687771842/e8468f165977f14858afe3ed7c473c18_Group_photo.png?1687771842" style="width: 400px;" class="fr-fic fr-dii"></td><td style="width: 49.0134%;"> </td></tr></tbody></table> Brief summary of the project report:AchievementsThe Transition project started the process of improving the quality of transition care for children and young people with cancer across the South Thames Operational Delivery Networks by:<ul><li>Developing and promoting a shared understanding of best practice for cancer transition.</li><li>Providing resources and information on transition for patients, their families and healthcare professionals, <a href="https://www.royalmarsden.nhs.uk/transition-hub" rel="noopener noreferrer" target="_blank">find the Transition Hub here</a>.</li><li>Developing a community of practice to share experiences, ideas and resources and a community of support for professionals wanting to benchmark and improve transition.</li></ul>How were patients and others involved?<ul><li>45 young people and parents were asked if they would like to get involved.</li><li>Everyone contacted voiced an interest in the project, with many choosing to share their own experiences. This greatly contributed to understanding of the current practice, and generated enthusiasm for regarding potential opportunities for change.</li><li>13 individuals (7 young people and 6 parents) remained involved for the duration of the project across all areas of work.</li></ul>

Young person crossing river image by Zach Searcy on Unsplash

The transition project: improving the experience of moving to adult healthcare - update

<h1>The Royal Marsden are recruiting for two Patient Safety Partners to be involved in the design of safer healthcare</h1><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/1ad43364790ff10227db23ff5887f841698acfc2/original/1665153700/ead0b4983e8afa0c9ec842e6ccd1e348_royalmarsden_20338521733-edited.jpg?1665153700" style="width: 300px;" class="fr-fic fr-dib"> This role is a great opportunity to shape the patient safety strategy at The Royal Marsden by reflecting the voice and needs of people who use the hospital including patients, family members, carers and the public.The team are looking to recruit two individuals. For these roles, rewards are offered according to the PPI/E Expenses and Rewards Policy, and all expenses incurred will be paid.To find out more about the role and to express your interest, please email <a data-fr-linked="true" href="mailto:patients.engagement@rmh.nhs.uk">patients.engagement@rmh.nhs.uk</a>&nbsp;by Monday 7 November 2022.

Patient Safety Partners

<h2>We want to work with older adult patients who have experienced chemotherapy to inform how we deliver future cancer care to older adults and sharing this learning through clinical education.</h2><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/4566a8c01c2490c3eec704aaba6cd9313211d9fc/original/1662628798/21af387d532d9dcbd1c382e89b818203_10f0499c1fff98a155ac30e22d8d14c8_unsplash-GnLuuG9crEY-20220908-54710-135dklt.jpg?1662628798" style="width: 390px;" class="fr-fic fr-dib" alt="A photo of an older person with a GP."> We are hosting a focus group to explore patients&#39; experience of clinical care as an older adult (aged 65+), with an interest in hearing from individuals who have received anti cancer therapy within the last five years.&nbsp;Friday 23rd September2pm-3.30pmPlease note this meeting has been switched to a virtual meeting.Please email <a data-fr-linked="true" href="mailto:Martine.Milton@rmh.nhs.uk">Martine.Milton@rmh.nhs.uk</a> for MSTeams linkPlease fill out the form below to register your interest in attending the focus group<hr>We will offer vouchers for your attendance in line with The Royal Marsden&#39;s Patient and Public Involvement and Engagement Policy. This will be a &pound;50 voucher for participating in the Focus group. The Focus group will be a maximum of 8 participants.

Working with patients to improve future cancer care for older adults

This patient-led project aims to improve access to the TYA team.We will work with young people through development of a poster, web page and blog series.This is an opportunity for you to get involved in helping us to increase the visibility of the TYA team and ensure that all teenagers and young adults receiving care at the Royal Marsden are aware of all the opportunities and services they can access.<div>We want to create an interactive webpage that is both informative and fun to access and we need your help to create this: formatting, testimonials and interviews.</div>Who can get involved?Teenagers and young adults receiving care at the Royal Marsden Hospital

Patient in the Oak Centre for Children and Young People

Collaborating to make the teenage and young adult team more visible

We want to work with patients to design research investigating this minimally invasive treatment for cancer that has spread to the liver <img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/99122583f64bd5e4e14c3ee584863c36d99056a4/original/1649949496/1de976891a2b298ce3ccfa383bcb7c9a_Image_RMH.jpg?1649949496" style="width: 400px;" class="fr-fic fr-dib fr-fil">BackgroundDespite advances in treatment, cancer that has spread to the liver is difficult to treat. We want to design research to find out if ablation - a &lsquo;pinhole surgical&rsquo; technique performed by an Interventional Radiologist - can be made more effective. What is ablation?Microwave ablation involves an adapted needle being placed through the skin and directly into a small liver tumour to cook it from the inside. It is a &lsquo;pinhole surgical&rsquo; technique performed by an &lsquo;Interventional Radiologist&rsquo; (a doctor specialising in image guided procedures), in a CT scanner. Advantages of ablation<ul><li>Less invasive than surgery</li><li>Low complication rates</li><li>Short hospital stay (typically overnight)</li><li>Low cost</li><li>A liver sparing approach, meaning it can be repeated</li><li>Suitable for patients receiving chemotherapy</li></ul>However, using this technique, as many as half of tumours eventually return afterwards, and we are therefore looking for ways to reduce this number by carrying out research. By comparison, surgery is associated with recurrence of around one in ten, although is possible in less than 1 in 5 cases.How can we reduce the number of returning tumours?1. We propose doing this by targeting tumours more accurately using a robot - a UK first.2. We will use special software to decide whether ablation has been successful or not.3. We hope to introduce a new technique which is not available in the UK called &#39;CT hepatic angiography&#39;. This involves injection of contrast directly into the hepatic arteries which helps us look at the treatment throughout the procedure, and better decide when it is complete.Initial results suggest these approaches are promising, but they need to be studied further before they might be recommended across the NHS. Why is this research necessary?The NHS needs more evidence about these new advancements before they can be used more widely.

Radiographer performing a laser guided procedure

Improving image guided liver ablation

We want to work with you to develop the right materials to help patients remain safe and informed during Systemic Anti-Cancer Therapy (SACT) - or cancer treatment with medicines&nbsp;<table style="width: 100%;"><tbody><tr><td style="width: 50.0000%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/87c5c3e9c14ab8977b0edec6d4298e742e4cb696/original/1649092577/392ef0e070075f18114831a19eeb07ac_royalmarsden_42939406650.jpg?1649092577" style="width: 200px;" class="fr-fic fr-dib" alt="Nurse helps patient prepare for treatment"></td><td style="width: 50.0000%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/4df0c1867b8f44486a89add1cd35ba4d07d1e238/original/1649085827/d2a84f8c9e80cc970410a0213ce20846_national-cancer-institute-ZeitGGtlwzI-unsplash.jpg?1649085827" style="width: 450px;" class="fr-fic fr-dib" alt="Chemotherapy drugs in bottles credit UnSplash!"></td></tr></tbody></table> What is Systemic anti-cancer therapy?Any treatment of cancer with drugs is either:<ul><li>chemotherapy &ndash; where drugs directly destroy the cancer cells, or</li><li>immunotherapy &ndash; where drugs stimulate your own body to target the cancer</li></ul>All of these drugs are now called Systemic Anti-Cancer Therapy (SACT).Why are we doing this research?We want to work with patients to develop the right materials to help patients remain safe and access the resources available during a cancer treatment.We have developed some templates for a pre-treatment consultation,&nbsp;similar to a pre-assessment you might attend prior to surgery.How you can get involvedOn April 25 we ran a one-off focus group with patients and carers who have experienced chemotherapy where we&nbsp;presented our draft materials and took advice on how and when to use themFollowing the focus group, we will post these materials on Cancer Patients&#39; Voice for further commentary prior to translation into 5 languages&nbsp;

Dark clouds image by Michal Mancewicz Unsplash

Working with patients to improve the treatment of cancer with drugs

Investigating patients and nurses views of how preparation for treatment works<table class="noBorder" style="width: 100%;"><tbody><tr><td style="width: 50.0000%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/87c5c3e9c14ab8977b0edec6d4298e742e4cb696/original/1635938253/48f852554f99c0a63350a86a57b80765_royalmarsden_42939406650.jpg?1635938253" style="width: 300px;" class="fr-fic fr-dib fr-fil"> </td><td style="width: 50.0000%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/dd13d30e40dd80cfdf39793a2374f97b422b8396/original/1643219368/2d09ca66a1fa64151f1011b92df46648_pre_hab_graphic_.JPG?1643219368" style="width: 300px;" class="fr-fic fr-dib fr-fil"> </td></tr></tbody></table> BackgroundWhat is prehabilitation?Prehabilitation involves patients preparing for cancer treatment to give themselves the best chance of success and recovery.Patients undertake a prehabilitation programme which focuses on areas like their diet, lifestyle and mental health.&nbsp;Successful prehabilitation can mean patients can leave hospital quicker, cope better with side-effects and recover sooner.About this project<ul><li>We want to find out what nurses views of prehabilitation (exercise advice, food advice and help with mental health) are and if they routinely discuss these with their patients.</li><li>We will also examine information patients are being given about exercise, diet, mental health, stopping smoking and cutting down on alcohol before and during treatment.</li><li>The project will then ask patients if they received any information around these factors, if they liked it, if it was helpful, what their overall experience was and if they would change the information.</li><li>We are looking for people with experience of chemotherapy prior to surgery to help us design the project. If you are interested, please contact Tessa on <a href="mailto:tessa.renouf@rmh.nhs"></a><a class="fr-green" href="mailto:tessa.renouf@rmh.nhs.uk">tessa.renouf@rmh.nhs.uk</a></li></ul>

Senior Staff Nurse Kim Scholfield with patient

Improving prehabilitation to give patients best preparation for treatment

<table class="noBorder" style="width: 100%;"><tbody><tr><td style="width: 43.8366%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/17e7374a3b5c63231790827340fd28f639047b85/original/1638901892/17f7b384f46cc2f572aec59f4a0de373_Capture.PNG?1638901892" style="width: 300px;" class="fr-fic fr-dib fr-fil"> </td><td style="width: 56.1634%;">This project involves producing a short (3 minute) video explaining what Psychosexual Therapy is, who may benefit and how to refer to the service. I would like to check that the video is clear and informative for patients. </td></tr></tbody></table>Psychosexual Therapy is one of the therapies we offer as part of the Psychological Team here at the Royal Marsden.&nbsp;<table style="width: 100%;"></table> Having a Cancer diagnosis and treatment may affect your Sexual Wellbeing.&nbsp;We have produced a short film explaining what Psychosexual Therapy is, and how to access it. We would like to find out if this film is clear and provides enough information.

Silhouette of couple holding hands watching sunset> Image Alex Iby on Unsplash

Psychosexual Therapy - what is it and who can benefit? 

<table class="noBorder" style="width: 100%;"><tbody><tr><td style="width: 50%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/ac6d93d904a3266ee5226d981cdde5cedf0a2181/original/1631877908/388d95e6e139ce84292849c71eb9e9a9_royalmarsden_55689259306.jpg?1631877908" style="width: 300px;" class="fr-fic fr-dib" alt="Jen Newman, Senior Specialist Dietitian with older patient"></td><td style="width: 50%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/30b896888e338b04803937a0ab885f382add774a/original/1631879116/b95b415d0c0af6a61a16b07a020fcbf8_royalmarsden_57747745434_FS.jpg?1631879116" style="width: 300px;" class="fr-fic fr-dib" alt="Consultant Susan Lalondrelle with female Asian patient "></td></tr></tbody></table> Establishing a team dedicated to the care of older adults being managed at The Royal Marsden BackgroundWith the support of our&nbsp;<a class="fr-strong" href="https://www.royalmarsden.nhs.uk/about-royal-marsden/who-we-are/rm-partners-west-london-cancer-alliance">West London Cancer Alliance RM Partners</a>, we are establishing a Senior Adult Oncology Programme (SAOP) team dedicated to the care of older adults being managed at The Royal Marsden.This team will include different professions (doctors, nurses, physiotherapists, occupational therapists, dieticians, pharmacists, psychologists and social workers) and aim to provide these patients a more personalised treatment approach. This approach can reduce the risk of side effects and inpatient admissions on anticancer drug therapies and surgery and improve patients&rsquo; quality of life.Our planWe will start implementing this new model of care in the Breast Unit medical oncology clinics at the Sutton site of the hospital in November 2021.In these clinics, older patients with breast cancer being considered for anticancer drug therapy will meet a dedicated doctor, nurse, physiotherapist, occupational therapist, dietician and pharmacist who will provide them with specific recommendations on the management of their cancer and any additional problems based on their individual circumstances.Upon successful implementation of this model by the end of 2022, we will gradually expand the service and the SAOP team to include also older individuals diagnosed with different tumours and being considered for surgery.Get&nbsp;involved<a href="https://patients-voice.cancerbrc.org/senior-adult-oncology-programme?tool=brainstormer#tool_tab">Share your ideas</a>&nbsp;-&nbsp;What would make an excellent Senior Adult Oncology Programme? What should our priorities be?&nbsp;Add your own idea or like and comment on ideas already posted<a class="fr-strong" href="https://patients-voice.cancerbrc.org/senior-adult-oncology-programme?tool=guest_book#tool_tab">Leave a comment</a>&nbsp;- What is the one thing you want to say? Do you have any thoughts or comments you would like to share? Tell us what is on your mind&nbsp;<a href="https://patients-voice.cancerbrc.org/senior-adult-oncology-programme?tool=guest_book#tool_tab">here</a><a href="https://patients-voice.cancerbrc.org/senior-adult-oncology-programme?tool=qanda#tool_tab">Ask us a question</a>&nbsp;-&nbsp;Want to know more about how this service will look? Interested in what the team will look like and how it will operate?Register your interest in getting&nbsp;involved&nbsp;- email <a href="mailto:maureen.mcginn@nhs.net">maureen.mcginn@nhs.net</a> if you want to work with us to build this serviceIf this is your first visit to Cancer Patients&#39; Voice&nbsp;<a class="fr-green" href="https://patients-voice.cancerbrc.org/register">register</a>&nbsp;so you can keep up to date with all the chances to get involved in improving cancer research and services.

Consultant Susan Lalondrelle with female Asian patient 

Help us create a Senior Adult Oncology Programme

A chance for women to work with healthcare planners to improve take-up of breast cancer screening&nbsp;<img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/695d820416942ce12351b259b77745dab94a3123/original/1636383648/30298bb1b706bc05f7e93c4dac2df760_Screening_image_BAME.png?1636383648" style="width: 450px;" class="fr-fic fr-dib fr-fil">BackgroundBreast cancer is now the most common type of cancer in the world. To treat breast cancer effectively it is important to find it early. The NHS does this by asking women aged between 47 and 73 to come to screening appointments (called mammograms).&nbsp;With the interruptions to routine breast screening services caused by COVID-19 it is more important than ever that women attend.&nbsp;However, many women choose not to attend these appointments, especially in areas of London.&nbsp;Women do not attend for a number of reasons including not understanding why the appointment is necessary, not having time to go or previous bad experiences. This is particularly important for certain groups, such as BAME women.Aim of this projectWe are offering an opportunity to be involved in creating new tools with healthcare designers, doctors and behavioural scientists, to overcome some of the challenges women face to breast cancer screening in London.&nbsp;How you can get&nbsp;involved - join our virtual workshopsWe&#39;re inviting women to co-create these solutions during two online, interactive workshops. You are free to attend one or both -Wednesday 17th November between 1pm to 3.30pm OR 6pm to 7.30pmand&nbsp;Wednesday 1st December between 1pm to 3.30pm&nbsp;They will be held with healthcare designers, doctors, and behavioural scientists. You will be asked to&nbsp;<ul><li>share your experiences of screening,&nbsp;</li><li>give your opinions on some of the existing work that has been done,&nbsp;</li><li>help create solutions to facilitate breast cancer screening.&nbsp;</li></ul>All participants will be reimbursed for their time.Email <a class="fr-green" href="mailto:aa2107@ic.ac.uk">aa2107@ic.ac.uk</a> or call 07811327985 to get&nbsp;involved

Help Break Down Breast Cancer Screening Barriers

<img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/93376ceec3d87cf6fceff179358f3429abbf9274/original/1634644684/756af6c0a3400585b0cf0c50dfd54bef_man-3591573_1920_%281%29.jpg?1634644684" style="width: 300px;" class="fr-fic fr-dib fr-fil" alt="Man's head silhouette image by Pixabay">How does fear of cancer progressing impact people with secondary breast or prostate cancer?Background - the evidence gap around fear of progression after cancer recurrenceUncertainty, fear, and anxiety are words used by patients to describe the period after a cancer recurs. Thinking about the cancer recurring after an initial diagnosis and fears associated with this happening, is a common concern. At low levels it can be beneficial as people become vigilant to signs of a recurrence. However, it can reach levels that may impact on a person&rsquo;s overall quality of life and their well-being.&nbsp;The term fear of cancer recurrence is used interchangeably with fear of cancer progression.&nbsp;However, there is a lack of research examining fear of progression after the recurrence occurs.<hr>Our aim - understanding concerns and improving the way we talk to patients about fear of cancer&nbsp;progression.We want to gain an understanding of how the level of fear and anxiety impact on a persons&rsquo; quality of life and emotional well-being.&nbsp;We will then talk to cancer patients with a recurrence about their general wellbeing and their concerns moving forward.&nbsp;This work will help identify better ways for health professionals to talk about this important area and, ultimately offer more appropriate support.<hr>Get involvedWe want your insights about the kind of topics you feel are important in the experience of cancer. We are particularly interested in concerns about the progression of illness.<ul><li>Join our&nbsp;<a class="fr-strong" href="https://patients-voice.cancerbrc.org/cancer-progression-capturing-concerns/forum_topics/what-aspects-of-the-experience-of-cancer-do-you-think-we-should-discuss-with-patients-we-are-particularly-interested-in-concerns-related-to-the-progression-of-cancer">online forum</a>&nbsp;and tell us what is most important</li><li>Post an idea on our&nbsp;<a class="fr-strong" href="https://patients-voice.cancerbrc.org/cancer-progression-capturing-concerns?preview=true&tool=brainstormer#tool_tab">ideas board</a>&nbsp;or like and comment on ideas already posted</li></ul><div><table class="noBorder" style="width: 100%;"><tbody><tr><td style="width: 23.2308%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/93ae4f680ee7619a5e8f6927cbe8ddb3d22fcd84/original/1635866714/9954dd21b857f25f30ac52c5e836bf0c_Add_your_idea.png?1635866714" style="width: 163px;" class="fr-fic fr-dib fr-fil"></td><td style="width: 76.6666%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/cb7c889b25c3b4b9213c2a8c71943abd9dc22eed/original/1635866736/f5ff0291be3ae7a92a634553a8d80b17_Like.PNG?1635866736" style="width: 121px;" class="fr-fic fr-dib fr-fil"></td></tr></tbody></table>&nbsp;Post your own ideas&nbsp;or&nbsp;Like or comment on other people&#39;s ideas</div> Our study currently focuses on patients with breast and prostate cancer recurrence, but we welcome comments from people with other cancers, and we&nbsp;have applied to widen this study to people with any cancer that has recurred.&nbsp;

Cancer progression: what are patients' concerns and how do these impact their lives?

<table class="noBorder" style="width: 100%;"><tbody><tr><td style="width: 50%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/1a53901f25f8accd1c311803e9a6fb3e1c376e53/original/1630940806/14444fefc16e9a2e0b187f0c031bd395_sriyoga-ashram-QgCl-pNkfPc-unsplash.jpg?1630940806" style="width: 300px; height: 150px;" class="fr-fic fr-dib"></td><td style="width: 50%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/57359f616fa627ac4783b1224716ed042e4f8edc/original/1630941423/8b7de0ca2103a1d52d316a1ac9d62d40_ola-mishchenko-VRB1LJoTZ6w-unsplash.jpg?1630941423" style="width: 300px; height: 150px;" class="fr-fic fr-dib"></td></tr></tbody></table>This project investigates people with breast cancer&#39;s views on physical activity and nutrition support during treatment, particularly with digital support.BackgroundBeing more physically active, eating a healthy diet and maintaining a healthy weight, can help reduce side effects of treatment and improve outcomes in breast cancer, as well as reduce the risk of other long-term conditions.Digital Health Interventions are services provided via smart phone, tablet or computer rather than face to face with a health care professional. These can include;<ul><li>text messaging</li><li>video calls with healthcare professionals</li><li>resources on websites and apps</li></ul>Research suggests that digital health interventions may have a role in supporting people with cancer in positive behaviour change, such as being more physically active or maintaining a healthy weight.Aim of this ProjectIf you are currently undergoing treatment for breast cancer or have received breast cancer treatment in the last two years, we want to know your views about the support for physical activity and nutrition during treatment for breast cancer, and in particular whether you feel a digital health intervention may help.How you can get involved<ol><li>Complete the <a href="https://patients-voice.cancerbrc.org/using-digital-support/survey_tools/support-for-physical-activity-and-healthy-diet-choices-when-diagnosed-with-breast-cancer">brief survey</a> below</li><li>Register your interest in taking part in a focus group with other patients (you can also do this via the survey)</li></ol>

Digital support for physical activity and diet after breast cancer diagnosis

Keeping hydrated is a challenge during cancer treatment. Share your ideas and tips on good hydration.<hr> <img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/d28db0b3559a8998dbc15e2d882e7da956555344/original/1629382681/41da6a033e12068a443afcd73d9691bb_julia-zolotova-K2yKpyLMVOg-unsplash.jpg?1629382681" style="width: 200px;" class="fr-fic fr-fir fr-dii" alt="Jug of water with lemon slices by Julia Zolotova on Unsplash">Water makes up two thirds of our body.&nbsp;Good hydration is important for health although drinking enough can be a challenge, particularly during cancer treatment.We would like to collect ideas from people about how to keep well hydrated.They may be ideas and tips about&nbsp;taste changes, flavours that tasted good, which temperatures worked well and tips about how to take more fluid throughout the day.<hr>We are looking for ideas that worked well if you were in hospital or at home.&nbsp;Please share your ideas on the&nbsp;<a href="https://patients-voice.cancerbrc.org/help-with-hydration/brainstormers/what-worked-well-for-you">board below</a>&nbsp;as well as liking and commenting on ideas already posted<table class="noBorder" style="width: 100%;"><tbody><tr><td style="width: 50.0000%;"><div style="text-align: center;">To vote for an idea you like</div></td><td style="width: 50.0000%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/cb7c889b25c3b4b9213c2a8c71943abd9dc22eed/original/1633081291/1989b40ddc875158d4333e7993ea4e71_Like.PNG?1633081291" style="width: 85px;" class="fr-fic fr-dib"></td></tr><tr><td style="width: 50.0000%;"><div style="text-align: center;">To post your own idea</div></td><td style="width: 50.0000%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/93ae4f680ee7619a5e8f6927cbe8ddb3d22fcd84/original/1633080942/8ae8ea6afbf83415f739c3f37abcd254_Add_your_idea.png?1633080942" style="width: 101px;" class="fr-fic fr-dib"></td></tr></tbody></table>Please also share your thoughts via our&nbsp;<a href="https://patients-voice.cancerbrc.org/help-with-hydration?tool=guest_book#tool_tab">guestbook</a>&nbsp;as well if you have any general comments on hydration and how you keep hydrated during treatmentThe ideas submitted will be used in two ways.&nbsp;<ol><li>Firstly, an information leaflet of the ideas submitted will be produced to help other people.&nbsp;This will be made available on The Royal Marsden website.</li><li>Secondly, ideas about improving hydration in hospital will be used to change our service on the wards and the medical day unit.</li></ol>

Help with hydration

Seeking women&#39;s perspectives on the use of robotics technology in breast surgery<img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/c4898d0413c95d49e76665c8b7393299bd5bfb11/original/1630593690/f7a7e6372c0caff1f2011d9b8fe76fa3_royalmarsden_55689253944.jpg?1630593690" style="width: 300px;" class="fr-fic fr-dib fr-fil" alt="Marie Taniaco, first Robotic Nurse Fellow, with the da Vinci Xi ">BackgroundBreast cancer is common affecting 1 in eight women in the UK.Breast reconstruction surgery is routinely performed in the UK following mastectomy for patients with breast cancer or patients wishing to have prophylactic mastectomies for a genetic mutation.Internationally some breast surgeons are looking at the use of robotic surgical technology to help with this operation.This technology has been used successfully in other parts of the body where the operating space is small e.g. pelvic surgery.Robotic breast surgery is performed via a scar in the armpit, with a surgeon operating the robot.How you can get involvedWe are looking for women who would like to share their views on the use of robotics in breast surgery.We will be organising virtual group events and a network of interested women to contribute to designing a study looking into this new area in breast surgery.Please complete this&nbsp;<a class="fr-green" href="https://patients-voice.cancerbrc.org/robotics-in-breast-surgery/survey_tools/how-would-you-like-to-be-involved1">brief questionnaire</a>&nbsp;to register your interest in being part of this research

Marie Taniaco, first Robotic Nurse Fellow, with the da Vinci Xi 

Robotics in breast reconstructive surgery - your views

<img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/1dfa4c6ec85e4297d289d32c3f0042dc1b3fb072/original/1626863071/e5a362e82c296e3cef8c2b42b771f5e0_royalmarsden_30896705684.jpg?1626863071" style="width: 400px;" class="fr-fic fr-dib fr-fil" alt="Outpatient appointment with nurse and patient"> We invite you to take part in this project if you have experienced cancer-related pain or if you care for a person with this type of pain. We would like to hear about your experience of accessing support specific to cancer-related pain with the aim of creating an education resource for healthcare professionals.BackgroundCancer-related pain can happen at any time before or after a diagnosis and can be caused by different factors such as the disease itself and its treatments - surgery for example. Pain can impact on all aspects of a persons life - from reducing mobility, disrupting sleep, attention, and mood. It is important that healthcare professionals have the correct tools to understand pain and to support people living with it.&nbsp;Aim of my researchCurrently there is a lack of education and support for healthcare professionals regarding cancer-related pain. The aim of this project is to understand their current knowledge levels and experience in this area. We will bring together both healthcare professionals and those affected by pain to develop a resource that will educate professionals on how to provide better support for patients.&nbsp;How you can get involvedThere are various ways in which you can get involved with this project and help us to understand your experience of cancer-related pain. Below is a selection of ways to get involved, and the information you provide will be used in the design of the research project.<a href="https://patients-voice.cancerbrc.org/improving-support-for-cancer-related-pain?preview=true&tool=story_telling_tool#tool_tab" style="font-size: 16px;">Share your story</a>&nbsp;- tell us about your experience of cancer-related pain and the information and support received from healthcare professionals<a href="https://patients-voice.cancerbrc.org/improving-support-for-cancer-related-pain/brainstormers/accessing-support" style="font-size: 16px;">Share your ideas&nbsp;</a>- Share your insights into where you go for information, advice and support and your priorities.<a href="https://patients-voice.cancerbrc.org/improving-support-for-cancer-related-pain?preview=true&tool=guest_book#tool_tab" style="font-size: 16px;">Be part of a patient advisory group to support the research</a>&nbsp;- Be part of a small advisory group and have input into the design of this project. This will be a virtual group that will meet at key points in the project. The first meeting will take place on 10th August 2023 1300 - 1400. If you are interested in joining this group please email <a data-fr-linked="true" href="mailto:Martin.galligan2@rmh.nhs.uk">Martin.galligan2@rmh.nhs.uk</a>

Outpatient appointment with nurse and female patient

Do you experience cancer-related pain or support someone in pain?

<div class="fr-img-space-wrap"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/79762bbbc820972978b4f9693a426f1d21457515/original/1626450356/a70a3047b37d80323aa99d418043b94a_royalmarsden_31722435751.jpg?1626450356" alt="Mr Myles Smith, Consultant Surgeon at operating table" class="fr-fic fr-dib fr-fil" style="width: 300px;"></div><div class="fr-img-space-wrap">Input from patients is vital to build future research into mesh risks and benefits&nbsp;</div> BackgroundBreast cancer is common; 55,000 women are diagnosed in the UK per year. Over 40% of women needing surgery require mastectomy and are offered breast reconstruction with an implant. A further group of women choose to have prophylactic mastectomies with reconstruction if they carry a breast cancer promoting genetic mutation.Since 2015, surgeons have been using a mesh to provide additional cover and support to the implant placed on the chest wall muscles for cosmesis. Aim of our researchThis study aims to gather information from patients who have had a breast reconstruction with mesh, or will be having this operation, on their views on mesh and their experiences with mesh breast surgery.Information from patients is invaluable to ensure that future research looking into mesh risks and benefits is focussed to address patients&rsquo; concerns and priorities. How you can get involvedYou have a choice of how you would like to be involved in this project and this <a href="https://patients-voice.cancerbrc.org/womens-experience-mesh-surgery/survey_tools/how-you-would-like-to-be-involved">brief questionnaire</a> gives you the chance to express your preference.We will be running a&nbsp;group virtual meeting&nbsp;for women who have expressed an interest in sharing their views. This will be alongside individual&nbsp;one-to-one interviews.We are also creating a network for women with mesh-based breast reconstruction to share updates on this area and future events related to this topic.

Women's views and experience of mesh breast surgery

<img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/e8d0aa0a7d8e31861040d6dce326d22826e11893/original/1626448725/4ecbef2097052e15b99f3328d4b8e032_SOFTLI_5.jpg?1626448725" style="width: 450px;" class="fr-fic fr-dib fr-fil" alt="Radiography staff reading scan results">What type of radiology reports do patients want and with what information? We investigate whether patients prefer to receive &quot;multimedia&quot; reporting with images and key data versus standard &quot;text-based&quot; radiology reports.BackgroundMen with prostate cancer undergo MRI imaging to establish the extent of their disease and plan treatment.Currently radiologists produce text-based reports to describe key findings and guide management.There is increasing interest in multimedia reports. Using this type of reporting, key data and representative images are automatically embedded in the clinical reports by radiologists, facilitating communication of important findings, informing management decisions and aiding patients&rsquo; understanding of their diagnosis.Based on existing data, multimedia reporting in oncology is already successfully used at RMH for clinical trial purposes, for example when assessing response to treatment.However, little data exists to evaluate their use for routine primary tumour staging outside of the clinical trial setting and to evaluate patient preference prompting us to find out from you &ndash; our patients.Our researchWe aim to evaluate the feasibility, patient preference and clinical impact of using multimedia reporting with MINT software in clinical use for men with prostate cancer and compare these to standard text-based reports. We hope that this Service evaluation will serve as a best practice project and inform future service development and wider implementation.Would you like to be part of this research?We are interested in your experience of using multimedia MINT software reporting compared to standard text-based reporting within the prostate cancer clinic. To register your interest and to see if you are eligible to take part please complete the brief <a href="https://patients-voice.cancerbrc.org/fresh-look-at-radiology-reporting/survey_tools/take-part">form below</a>

A fresh look at radiology reporting with MINT software

<img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/11e91ad181872bee7976423a515de44f03337452/original/1625065176/368812924fdc3f975bfd7c728630e3d6_alan-de-la-cruz-TOOhhlGHOsQ-unsplash.jpg?1625065176" style="width: 300px;" class="fr-fic fr-dib fr-fil" alt="Rubik's cube in hands, image by ALAN DE LA CRUZ on Unsplash">Setting future priority work areas for&nbsp;service evaluation, audit and research Who we areThe Royal Marsden Adult Psychological Support Service works with patients and their families across inpatient and outpatient settings. We are a team of trained professionals that provide psychological therapies and psychiatric medication to support people to cope with cancer and its treatments.We are developing our Service Evaluation, Audit and Research (SEAR) strategy and would like your help.Aims of our researchThe main aim of our research is to enhance the psychological adjustment of people affected by cancer and its treatment; or put more simply, to help people cope.We have identified two main themes that will inform all of our work:1.&nbsp;&nbsp;Equality, diversity and inclusion<img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/b8eedf2635a7c40538f7a7a9098d6e0334ec5403/original/1623231625/58251c90c45d76d8c1c61fe884b657d2_jordan-Bzd1qPySNvk-unsplash_Q.jpg?1623231625" style="width: 300px;" class="fr-fic fr-dib fr-fil" alt="Drop causes ripple in rainbow coloured water, Image by Jordan on UNSPLASH">We want to explore and better understand the experience of people from a range of backgrounds (e.g. age, cancer diagnosis, disability, ethnicity/ race, gender, religion/ belief, sexual orientation) so that we can strive towards <span style="color: rgb(65, 65, 65); font-family: sans-serif; font-size: 14px; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; background-color: rgb(255, 255, 255); text-decoration-thickness: initial; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;">equity of access to, and equality of outcomes and patient experience from, psychological and psychiatric cancer services.2.&nbsp;Multiple perspectivesWe will carry out projects that ask patients, families/ significant others and staff about their experiences (qualitative research) as well as collecting data on and about their experiences (quantitative research).How you can get involvedOur ideas board with our <a class="fr-strong" href="https://patients-voice.cancerbrc.org/adult-psychological-support-sear-strategy/brainstormers/potential-areas-of-research">areas of potential research</a> is now closed.Our sincere thanks to everyone who contributed and provided so many ideas and suggestions.We are reviewing these as a Team and will provide an update soon.You can stay informed about our work by subscribing for updates - click on the Subscribe button in the STAY INFORMED box

Royal Marsden Adult Psychological Support Service 

Your views on the content of a short video for patients taking part in the POETIC-A trial.The purpose of the video is to support women taking part in a clinical trial called POETIC-A, who may experience diarrhoea as a result of taking a drug called abemaciclib. We would like to hear from you about our proposed content and style of the video. This will help us to make improvements and to make sure that what matters most to patients is included in the video.The short <a href="https://patients-voice.cancerbrc.org/supporting-women-in-poetic-a-trial/survey_tools/producing-a-video">questionnaire</a> below should take about 10 minutes to complete..What is the POETIC-A trial?POETIC-A (Pre-Operative Endocrine Therapy for Individualised Care with Abemaciclib) is a new trial for women recently diagnosed with early breast cancer. The trial is sponsored by The Institute of Cancer Research and launched in December 2020. POETIC-A is aiming to recruit more than 5000 patients across the UK.Women taking part in the POETIC-A trial will receive either i) standard anti-hormone treatment alone or ii) a new drug called abemaciclib plus anti-hormone treatment.Abemaciclib is a tablet taken daily for two years at the same time as standard anti hormone therapy.It is very important that patients taking part in POETIC-A remain on abemaciclib for the full duration of treatment. However, one of the known side effects of abemaciclib is diarrhoea.Therefore, we are designing a video to support patients during their treatment and between follow-up appointments. <table class="noBorder dashedBorders" style="width: 100%;"><tbody><tr><td colspan="2" style="width: 100%;">Are you interested in helping us with the next stage of video production? </td></tr><tr><td style="width: 50.0000%;">We would like to invite 4-5 patient representatives to join a focus group to contribute to the design and editing of the video.<div>More details can be found at the end of the <a href="https://patients-voice.cancerbrc.org/supporting-women-in-poetic-a-trial/survey_tools/producing-a-video">questionnaire</a>, where you can register your interest. Participants in the focus group will be reimbursed for their contribution.</div> </td><td style="width: 50.0000%;"> <div><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/dba2fe8030211c9b35a8df87c9234c150944c949/original/1613142205/royalmarsden_42922847847.jpg_7f89f9be89a99a18b7413341740d5998?1613142205" style="width: 230px;" class="fr-fic fr-dib fr-fil" alt="Members of focus group around a table"> </div> </td></tr></tbody></table><hr> This POETIC-A trial is funded by<span style="color: rgb(65, 65, 65); font-family: sans-serif; font-size: 14px; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; background-color: rgb(255, 255, 255); text-decoration-thickness: initial; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;"> <a href="https://www.lilly.com/discovery/research-and-scientific-discovery" style="box-sizing: border-box; color: rgb(3, 169, 244); text-decoration: none; background-color: rgb(255, 255, 255); outline: 0px; cursor: pointer; transition: color 0.3s ease 0s; touch-action: manipulation; user-select: auto; font-weight: 700; font-family: sans-serif; font-size: 14px; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; letter-spacing: normal; orphans: 2; text-align: left; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px;">Eli Lilly and Company</a> and Cancer Research UK. The production of this video is funded by the National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) at The Royal Marsden NHS Foundation Trust and The Institute of Cancer Research.

Doctor being filmed and recorded by film crew with microphone

Supporting women recently diagnosed with breast cancer taking part in research

<h1 style="text-align: center;">Towards a smarter, more compassionate experience in cancer treatment</h1><table class="noBorder" style="width: 100%;"><tbody><tr><td style="width: 50.0000%;"> </td></tr><tr><td style="width: 50.0000%;"> </td><td style="width: 50.0000%;"> </td></tr></tbody></table> BackgroundWith over 50% of cancer patients potentially benefiting from radiotherapy it is important that any additional stress during the treatment plan is minimised.Anxiety and psychological stress during cancer treatment can occur in up to 49% of cancer patients and their families. This can be attributed to a sense of isolation experienced by the patient in the treatment or imaging rooms, separated from their carers and families.Existing interventions are either remotely administered, e.g. verbal communication or music which do not overcome the lack of physical presence and support or include the use of costly invasive sedation methods.We aim to develop a haptic (touch) technology enabled by soft robotics to improve patient experience during radiotherapy and imaging sessions.Our novel approach will harness the development of wearable haptic (simulated touch) technology enabled by soft robotics and information technology to improve the experience of cancer patients. The benefit is the potential to reduce cost due to cancelled procedures, reduce drug prescription and invasive methods that are currently employed to address patient anxiety.Objectives of our research<ul><li>To identify the most impactful combination of parameters to form a design brief for a soft robotic tactile intervention (SRTI) to meet the patients&rsquo; needs</li><li>To prototype and manufacture, the initial test SRTI via an iterative process based on user and patient need</li><li>To investigate the feasibility and acceptability of using the SRTI</li></ul>How we have worked with patients so farREC and HRA approval was obtained in November 2019.Patients, care givers and health care professionals were recruited for focus groups conducted from December 2019 to February 2020.This research is funded by Cancer Research UK Convergence Science Centre

Radiographers and patients with various radiotherapy equipment

Improving Care through Soft Robotic Tactile Intervention (SOFTLI) 


Can electronic questionnaires collect patient reported outcomes in clinical trials? BackgroundWithin health care and clinical trials, questionnaires can be used to collect information from patients on the impact that treatments and health conditions may be having on their quality of life.This can include general information such as mobility and tiredness, as well as more disease or treatment specific questions such as those about bowel movements or sexual function.Traditionally, these questionnaires are provided to patients on paper for them to complete either during a hospital clinic visit or at home.<a class="fr-strong" href="https://www.icr.ac.uk/our-research/centres-and-collaborations/centres-at-the-icr/clinical-trials-and-statistics-unit">The Clinical Trials and Statistics Unit at The Institute of Cancer Research</a> <a class="fr-strong" href="https://www.icr.ac.uk/our-research/centres-and-collaborations/centres-at-the-icr/clinical-trials-and-statistics-unit">(ICR-CTSU)</a> would like to investigate offering people the option of using electronic online questionnaires as an alternative to completion on paper. To be sure that this will be successful and user friendly we are asking peoples&rsquo; opinions on the electronic collection of health questionnaires. We would also like to collect information about issues that may prevent trial participants from being able to complete questionnaires electronically. How can I get involved?We would like patients and the public to undertake our <a class="fr-strong" href="https://patients-voice.cancerbrc.org/reporting-outcomes-electronically/survey_tools/electronic-patient-reported-outcomes">survey</a> in the first instance.Following on from the survey we will run a focus group to discuss the best way to start collecting questionnaires electronically and to check that they are suitable for our trial participants. If you are interested in participating in this focus group please provide your contact details at the end of the survey.Participants in the focus group will be asked whether they would like to take part in the committee overseeing the project.This project has received a grant from the NIHR Biomedical Research Centre at The Royal Marsden and the Institute of Cancer Research.

Using technology to let patients report health outcomes

Exploring recruitment challenges for proton beam therapy trials and understanding factors influencing patient participation BackgroundProton beam therapy is an advanced type of radiotherapy treatment, but it is only available at a small number of specialist sites in the UK.This means that participants in a research trial investigating how effective proton beam treatment is may well have to travel to take part.Because of this, there may be differences in the types of people that accept and decline participation in such a trial.This in turn means the results may not be generalisable to the target population.We want to inform future studies using proton beam therapy - therefore we need to understand more about the patients that decline participation, and their reasons for doing so.How can I get involved?We need your help to identify possible barriers to recruitment in trials of new radiotherapy technology, where treatment is only available at a small number of specialist hospitals.We have designed a <a class="fr-strong" href="https://patients-voice.cancerbrc.org/improving-proton-beam-therapy-research/survey_tools/recruitment-for-proton-beam-therapy-trials">survey</a> (below) asking you to rank potential barriers in relation to the impact they would have on a choice to accept or decline participation in such a study. You will also have the chance to add any additional factors that we have not included.Your responses will help finalise the design of a study to be run within the <a class="fr-strong" href="https://www.icr.ac.uk/our-research/centres-and-collaborations/centres-at-the-icr/clinical-trials-and-statistics-unit/clinical-trials/torpedo">TORPEdO clinical trial</a> which is comparing proton beam therapy to standard radiotherapy in head and neck cancer.Research staff time is supported by a Cancer Research UK Accelerator award. The researchers acknowledge support by a Cancer Research UK Centres Network Accelerator Award Grant (C309/A21993) to the Advanced Radiotherapy Technologies Network (ART-NET) consortium.This project has also received a grant from the NIHR Biomedical Research Centre at The Royal Marsden and the Institute of Cancer Research.

Therapy Radiographer with radiotherapy equipment

Improving recruitment to proton beam therapy research trials 

<h2>Help us design questionnaires to capture their unique experiences and quality of life </h2><h2>Background</h2>Symptoms and side effects of sarcoma and its treatment(s) may have an impact on a patient&rsquo;s well-being. However, there is currently no way to measure quality of life specifically in sarcoma patients.We would like to find out how the diagnosis with a sarcoma has affected patients physically, socially and emotionally in order to develop a questionnaire about quality of life and symptom burden for sarcoma patients. This questionnaire will allow future research to understand the patient&rsquo;s perspective on how the disease and treatments affect their lives.To identify the most relevant issues that the questionnaire should cover, we have reviewed previous research and interviewed 159 patients and 35 healthcare providers.We are now drafting the questions that will go into the questionnaire based on the issues that came up in our review of previous research and interviews.<h2>How can I get involved?</h2>Tell us what you think of our questionnaire by completing the <a class="fr-strong" href="https://patients-voice.cancerbrc.org/health-related-quality-of-life/survey_tools/capturing-symptoms-and-their-impact">survey</a> below.Share your comments and suggestions about our research on our Ideas Board.This project is funded by the European Organisation for the Research and Treatment of Cancer (EORTC) Quality of Life Group.<table class="noBorder" style="width: 100%;"><tbody><tr><td style="width: 50.0000%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/bd9a3d18981868be8745aee985d9102712ca7787/original/1611839597/eortc_qlg.png_c945efb2375d4bae7e5dd02e462e1ca4?1611839597" style="width: 250px;" class="fr-fic fr-dib fr-fil"> </td><td style="width: 50.0000%;"><img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/1f6337ddddc77c1e29a103989214f5841f62dff9/original/1611839616/Soft-Tissue-and-Bone-Sarcoma-Group-1-900x400.jpg_746bd63748a9473fb59418472f4545df?1611839616" style="width: 250px;" class="fr-fic fr-dib fr-fil"> </td></tr></tbody></table>

Patient holding paper questionnaire sitting with NHS staff member

How can we assess health-related quality of life in sarcoma patients?

Help us build a data registry with invaluable information for researchers and the NHS BackgroundCancer registries hold vital data about cancer patients - information collected from individuals from their diagnosis onwards.Registries are valuable especially in rare diseases because they provide information that can help identify emerging trends as well as capture differences in the management of patients and their outcomes with different treatments.Registries are also valuable to researchers, who can investigate the data collected to improve how services are targeted in the future. In addition they can help us understand how the disease affects patients&rsquo; quality of life.<hr><h3>&ldquo;As a patient it is really exciting to see this project as it will increase understanding of these diseases, improve patient care, inform current and future treatments and encourage research.&rdquo;</h3>Kate, LGLL patient.<hr>We want to work with patients and their families to find out what they would like a registry to be able to tell them and us. We will find out what their research interests and priorities are, making sure that we are capturing the right data in the registry to be able to help answer the research questions they give us.We are in the initial stages of designing a registry (database) of patients with rare mature lymphoid leukaemias (see Box 1)This registry may eventually be expanded to encompass other lymphomas/ leukaemias.Thank you Out thanks to everyone who took the time to contribute to our <a class="fr-strong fr-green" href="https://patients-voice.cancerbrc.org/building-a-registry/brainstormers/share-your-ideas">Ideas Board</a> by adding ideas and liking and commenting on the ideas already posted.You can read a <a class="fr-green fr-strong" href="https://patients-voice.cancerbrc.org/6526/widgets/47216/documents/26940">brief report</a> summarising what you told us and which topics got the most votes.This research is funded by a patient and public involvement grant from the National Institute for Health Research Biomedical Research Centre at the Royal Marsden and ICR.

Researcher at work in a lab with equipment including vials and slides

Designing a registry for patients with rare blood cancers

Understanding their views and preferences on access to imaging scans and reports Supporting Oncology Patients through access to optimised Imaging Digital Health Records Background Diagnostic imaging - the use of technologies to produce images of the internal structures of the body to help diagnosis - has greatly improved healthcare, particularly in the cancer setting. Patients generally have several scans, from early diagnosis to follow-up and the radiology reports of these form a vital element of a patient&#39;s medical notes. Patient access to imaging health records is becoming increasingly common across different countries and since 2014 in selected hospitals in the UK, it has allowed patients access to their own health records. This increased patients&#39; access to their medical records in the UK gives us a real opportunity to work with them, and health care professionals, to develop patient-centred imaging. How can I get involved? To understand patients&rsquo; views on having such access, specifically digital access to their imaging reports and scan images we would like to ask you to complete the <a class="fr-strong" href="https://patients-voice.cancerbrc.org/imaging-health-records?tool=survey_tool#tool_tab">below survey</a>. Our aim is to use this targeted approach to determine patients&rsquo; views on how access to a digital platform could better support and engage patients to become active users of digital health services, and their views on how that might improve patient care. Contact Ana Ribeiro - <a class="fr-strong" href="mailto: ana.ribeiro@rmh.nhs.uk">ana.ribeiro@rmh.nhs.uk</a> - to find out more about getting involvedFundingThis project is funded by the NIHR Biomedical Research Centre at The Royal Marsden and the ICR and supported by The NIHR Royal Marsden Clinical Research Facility.This project has also received a PPI grant from the NIHR Biomedical Research Centre at The Royal Marsden and the Institute of Cancer Research.

Consultant speaking to patient in front of computer screen with results of an imaging scan

What do patients and professionals want from Imaging Health Records?

<img src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/49a65545db3150e06ccc72d597e9059661e42c22/original/1628686527/d7a98d9fa2bac2687de7f5e2345f1669_CMC_care_plan.jpg?1628686527" style="width: 450px;" class="fr-fic fr-fil fr-dib">Improving how information is communicated to patients&nbsp; About Coordinate My Care&nbsp;Coordinate My Care (CMC) is an NHS digital urgent care planning service for patients, hosted by The Royal Marsden.Coordinate My Care puts the patient at the heart of planning their future medical care and the health and social care professionals treating the patient and emergency contacts* all have constant, relevant and up to date clinical information.Creating Your Coordinate My Care Urgent&nbsp;Care Plan&nbsp;Step 1: patient completes an online Advance Care Planning questionnaire called MyCMCStep 2: patient&rsquo;s doctor/nurse completes&nbsp;the Coordinate My Care Urgent&nbsp;Care Plan by adding their diagnosis &amp; treatment plansWhat&rsquo;s included: medical details, resuscitation status, medications and recommendations for the urgent care services to follow in an emergency (e.g. what to do post chemotherapy), 111 prompt, out of hours GPs, London Ambulance Service and hospital emergency departmentsStep 3: Completed Plan approved and immediately visible to patient &amp; all urgent care services, 24/7.How to engage patients to engage and benefit from this vital service: we need your help.How to get involved?The <a href="https://patients-voice.cancerbrc.org/coordinate-my-care/survey_tools/reviewing-cmc-digital-and-online">survey below</a> asks for you views.Please give us your <a href="https://patients-voice.cancerbrc.org/coordinate-my-care/survey_tools/reviewing-cmc-digital-and-online">feedback</a> on the service&rsquo;s branding and images, which you can look up via our online and social media tools.<ol start="1" type="1"><li>Website &ndash; to decide if you would like to start a MyCMC questionnaire. How easy is it for you to navigate around the website?</li><li>Social Media &ndash;&nbsp;&nbsp;What interests you to engage with a social media post? Do we communicate too much, too little or about right?</li><li>CMC images &amp; branding&nbsp;&nbsp;&ndash; We&rsquo;d like your comments on our &lsquo;Help us to Help You&rsquo; campaign. Does it encourage you to visit <a href="about%3Ablank">Mycmc.online&nbsp;</a> and create a plan? Yes? No? Why?</li><li>Service use &ndash; Can you suggest ways you would find easier to use the patient portal?&nbsp;What would encourage you to click into the MyCMC patient portal?</li></ol>This project is funded by a patient and public involvement grant from the National Institute for Health Research Biomedical Research Centre at The Royal Marsden and ICR.

Patient and family member building an urgent care plan on a tablet device

Coordinate My Care (CMC)

Using technology to overcome barriers to face-to-face health consultations BackgroundDue to the COVID-19 pandemic the RM Therapies Department adapted quickly to make the changes needed to provide continuous safe patient care. We increased telephone assessments and follow-ups, email contacts and introduced video calls to deliver care. This is known as telehealth.The NHS must comply with social distancing as part of the strategy to keep patients, carers and staff safe. Therefore, we expect to continue to use telehealth to replace most face-to-face outpatient appointments.&nbsp;We have already started to adapt the way we use these services using informal feedback from patients and staff. There have been clear benefits, but there have also been challenges.So now we want to reflect on this to find the weaknesses and build on the strengths. We need to look at this in a deeper way and really understand more about peoples&rsquo; experiences of telehealth services in Therapies (rehabilitation). Then patients, carers and staff will work to co-design these services together.We are using a model that we have used successfully before in the department called &lsquo;experience-based co-design&rsquo; methodology (EBCD). It is a way of working that enables staff and patients to design services together in partnership.Some patients have already shared their experiences of the telehealth services, but we need and welcome new joiners to our project as we move to the co-design phase.This will take the form of time-limited workshops. In this part of the project, patient and staff interviews have been analysed and key themes identified. Patient interviews have been summarised into a short summary video. This powerful video was used in a joint patient and staff event to focus ongoing discussions on identifying priority areas for change. This keeps the service focused on what is really needed, delivering it in a &lsquo;patient-centred&rsquo; way to future users of the service. What&rsquo;s happening now?Co-design groups are in set up where patients and staff are working together to make changes in the four main priority areas: inclusivity, safety, communication and peer training. We welcome other members of the public and staff to become involved in the project.&nbsp; How can I get involved?Contact Justin Roe - justin.roe@<a href="mailto:Alline.Monteiro@rmh.nhs.uk">rmh.nhs.uk</a> - for more information about how you can get involved.FundingThe team would like to thank the Point of Care Foundation for the original training funded by the Royal Marsden Partners. The team acknowledge support from the RM NIHR BRC for the Digital Voices Platform to enhance our PPIE involvement. Also, Dr Roe and Grainne Brady acknowledge funding from the NIHR for their post-doctoral fellowship and doctoral fellowship awards respectively and Siobhan Cowan-Dickie acknowledges funding from the RM Charity for her pre-doctoral fellowship award. The RM Charity COVID fund supported the project lead, Alline Monteiro and the Audio-Visual support for the video shown at the patient and joint event. The rest of the project team carried out the work alongside their normal RM roles.

NHS Consultant in video call with patient

Developing telehealth services in rehabilitation 

Does a list of questions and prompts improve the conversation about entering a trial? BackgroundPhase I clinical trials of experimental compounds are an option for some cancer patients who have already tried other treatment options. Deciding to enter such a trial is not a straightforward decision for a patient, and this can create anxiety and uncertainty.A patient will need to weigh up the risks and benefits of taking part in a trial and talk to their health professional about the likely impact on their health, the latest evidence and the chances of success.Previous research has shown that some key information is either not always clearly communicated or taken on board in initial conversations between patients and professionals, and that some patients may not always ask important questions about the trial.With that in mind a Question Prompt List (QPL) has been designed with experienced patients. Patients will use the list to ask questions that are important to them during their conversation with a health professional about entering a clinical trial.We want know if this improves the conversation between patient and health professional.An improvement in this dialogue as part of the process of a patient consenting to enter a trial may increase the patients understanding, and in turn give confidence that an informed decision has been made.How can I get involved?We want your views on the Question Prompt List and we have designed a survey to get your feedback - please see below.<a href="https://patients-voice.cancerbrc.org/improving-trial-recruitment-experience/news_feed/involvement">Read about</a> how patients have been involved so far.The sponsor of the study is The Royal Marsden NHS Foundation Trust.

Health care professional discussing a Phase 1 clinical trial with a patient

Helping patients make more informed choices about early phase research

<h1>Supporting decision-making by parents when their child has relapsed neuroblastoma&nbsp;</h1>Neuroblastoma is a rare type of cancer that mostly affects babies and young children. Parents must make many difficult decisions over months or years depending on how their child responds to neuroblastoma<strong style="box-sizing: border-box; font-weight: 700; color: rgb(65, 65, 65); font-family: sans-serif; font-size: 14px; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; letter-spacing: normal; orphans: 2; text-align: left; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; background-color: rgb(255, 255, 255); text-decoration-thickness: initial; text-decoration-style: initial; text-decoration-color: initial;">&nbsp;treatment. This can cause worry and distress.Relapse neuroblastoma has many treatment options available but no standard treatment guidelines. This means parents are involved in making repeated treatment decisions depending on their child&rsquo;s response to treatment.&nbsp;The REDMAPP study aims to develop a decision aid to support parents when their child has relapsed neuroblastoma, by gaining a greater understanding of how parents make a series of repeated treatment-related decisions.REDMAPP is an acronym for RElapse Decision MAking Parent Process.Parents who are making these decisions can participate in the research by being interviewed about their decision-making experiences. These interviews aim to understand how parents make treatment related decisions and how their decision-making may change over time (if they have made more than one treatment decision).This information will be used to develop a decision aid for parents. The decision aid will then be tested to see how helpful it is in supporting parents who are making repeated treatment decisions.The REDMAPP Patient and Public Involvement GroupThe REDMAPP study already has an established Patient Public Involvement Group which is advising researchers in this study. For more information please contact Helen Pearson&nbsp;<a href="mailto:helenpearson1@nhs.net">helenpearson1@nhs.net&nbsp;-</a>&nbsp;or visit:<a href="https://www.redmappstudy.co.uk/patient-and-public-involvement/">https://www.redmappstudy.co.uk/patient-and-public-involvement/</a><table border="1" cellpadding="0" cellspacing="0" width="100%"><tbody><tr></tr></tbody></table>FundingThe study is funded by National Institute for Health Research through a Clinical Doctoral Research Fellowship.<img class="fr-fic fr-dib fr-fil" style="width: 300px;" src="https://s3-eu-west-1.amazonaws.com/ehq-production-europe/4450717e09dad9025025202f10b06fccae436efe/original/1605804934/NIHR_Logos_Funded_by_BLK_CMYK.png_2a325bac79500391232fbd6e1ef7af77?1605804934">This project has also received a PPI grant from the&nbsp;NIHR Biomedical Research Centre at The Royal Marsden and the Institute of Cancer Research.

Nurse and young patient in hospital corridor