Impact Report 2018–19
Contents
Contents About Sarcoma UK
4
Welcome 5 The 2018-19 year in numbers
6
A snapshot look at the key achievements, milestones and learnings over the course of the year.
Research 9 How genomics, collaboration and being bold are helping to expand our knowledge of sarcoma.
Information 22 Reliable information about sarcoma that is actually making a tangible difference.
Policy and Campaigning
28
An in-depth look at how we’re helping to change the sarcoma landscape in the UK for the better.
Awareness 38 Sarcoma UK’s efforts to ensure more people know and understand what sarcoma is.
Support Line
43
The charity’s flagship support service and the positive impact it is having on supporters.
Thank you
50
Impact Report 2018–19 • 3
Welcome
Welcome About Sarcoma UK
The past year for Sarcoma UK has given us much to be proud of.
Sarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma cancer and campaigns for better treatments. It is the only cancer charity in the UK focusing on all types of sarcoma.
We’ve made headway into the policy field, strengthened our relations with healthcare bodies and influencers and led on the task of getting accurate, reliable sarcoma incidence data. We’ve listened to what people want and need from our Support Line, and greatly expanded our resources. We’ve been more vocal, speaking out on numerous occasions to make sure that sarcoma remains on decision makers’ agendas. This won’t stop.
Our vision
Where everyone affected by sarcoma cancer has the treatment, care and support they need.
Our mission
To ensure everyone affected by sarcoma receives the best treatment, care, information and support available and to create the treatments of the future.
What we do
• Drive awareness of sarcoma cancer. • Find answers through funding sarcoma research. • Provide information and support to anyone affected by sarcoma cancer. • Campaign for better treatments and to improve standards of care.
About sarcoma
• Sarcomas are uncommon cancers that can affect any part of the body, on
the inside or outside, including the muscle, bone, tendons, blood vessels and fatty tissues.
• 15 people are diagnosed with sarcoma every day in the UK. That’s about 5300 people a year. Sarcoma is more common than previously thought. • Awareness of sarcoma is low. According to a YouGov poll, 75% of people in the UK do not know or are not sure what sarcoma is.
Increasingly, our work is in partnership with fellow organisations like Cancer Research UK or Cancer 52 that hold more heft as a collective rather than lone voice. And at the core of all of this activity is research, and this report includes updates about what we’ve learnt from the Sarcoma UK-funded work that is taking place across the UK. Not ones to rest on our laurels, we’ve continued to grow what we do and you’ll notice that this year’s impact report is noticeably larger than last year’s. Whilst size isn’t everything, this report is testament to what we’ve done and achieved which is thanks to our passionate band of supporters who, despite increasingly uncertain times have continued to support Sarcoma UK.
‘At the core of all of this activity is research, and this report includes updates about what we’ve learnt from the Sarcoma UK-funded work that is taking place across the UK.’ Richard Davidson Chief Executive of Sarcoma UK
Thank you,
• There are around 100 different sub-types of sarcoma. • There are three main types of sarcoma: soft tissue sarcoma, bone sarcoma and gastrointestinal stromal tumours (GIST). • Sarcoma diagnoses now make up about 1.3% of all cancer diagnoses in the UK.
Richard Davidson Chief Executive of Sarcoma UK
Impact Report 2018–19 • 5
The 2018-19 year in numbers
Our total income in the year:
£
£1,863,535
The 2018-19 year in numbers
7
£655,663 How much we invested in sarcoma research in 2018-19, that’s up 35% on the previous year.
500
38
Our biggest ever amount awarded to a single research project.
The time it took between asking for the latest sarcoma incidence data, analysing it and sharing it with the sarcoma community.
500 The number of responses to NHS England’s consultation around the revised Sarcoma Service specification.
Nine in 10
The number of sarcoma researchers and experts working collaboratively on the sarcoma genomics GeCIP research project.
£250,000
7 months
Users of the Support Line who told us the service had helped them.
3x
525 individuals The number of people we supported on the Support Line an average of three times.
4 The number of PhDs we fully or part-funded relating to sarcoma.
One in four people in the UK correctly knew what sarcoma is.
94%
94% of people told us that reading our information gave them a better understanding of what sarcoma is.
Seven in ten respondents said our sarcoma information was helpful, informative and easy to understand. 6 • Impact Report 2018–19
How we raise our money The activities include 19% support costs and 2% governance costs, which have been re-allocated to each activity.
Investment income
1%
8%
8%
Gift Aid
9% 5% 7%
Legacies Corporate donations Trusts & foundations Major giving General donations
62%
4p in every pound we spend goes into research, 7 information, support and education. The remaining 26p is spent on fundraising activity, administration and governance. Impact Report 2018–19 • 7
Research
Funding research to find more answers Expanding our understanding of sarcoma will only come through research and we are starting to get those answers to the questions we’ve been asking for years. Since the research programme started, Sarcoma UK has awarded more than £2.6 million to 49 research projects at research institutes right across the UK. One of our aims is to increase the amount we spend on research every year, and the last financial year for the charity was no different, having invested £655,663 over the 2018-19 year. It’s actually a little lower than our pledge of funding £750,000 for the year, which was down to one research project we funded subsequently receiving funds from another funder, so the investment was not needed this year. The planned investment for the coming financial year in 2019-2020 is £870,000.
£ Invested
Number of projects
800,000
£ Invested
700,000
6
600,000
10
500,000
11
400,000 300,000
4
5
5
200,000
2018/19
2017/18
2016/17
2015/16
2014/15
4 2012/13
8 • Impact Report 2018–19
2009/10
Year
4 2011/12
100,000
Impact Report 2018–19 • 9
Research
Research Looking for answers at a molecular level In recognition of the role that genomics, the study of genes, has in our understanding of this complex cancer, we launched our genomics research programme in the spring of 2019 and made our biggest award to date to a single research project of £250,000. We asked the sarcoma research community for a vision and mission as to how the sarcoma samples gathered for the Government’s 100,000 Genomes Project could be best utilised in sarcoma research and bring sarcoma research on to the same footing as other cancers, such as breast and bowel, which has been using genomic sequencing for some years.
‘What we have now is a major opportunity to get an unprecedented understanding of sarcoma cancer on a molecular level.’ Professor Adrienne Flanagan, UCL Cancer Institute
The research community came back with the Sarcoma Genomics England Clinical Interpretation Partnership (GeCIP), a three-year project led by Professor Adrienne Flanagan from the UCL Cancer Institute. A total of 38 researchers from various research and clinical institutions have come together to work collaboratively in order to examine and catalogue the breadth of variation in genetic mutations – a first for sarcoma. Like other cancers, sarcoma is caused by changes in the genetic code, similar to spelling errors in the instructions for a person’s genetic make-up. Data from the samples, the largest of its kind internationally, should make spotting any genomic patterns or trends far easier. Professor Flanagan says: “Our lack of knowledge surrounding the different sarcoma subtypes on a genomic basis, and the way they develop and evolve, has led to a current treatment vacuum for the disease. Sarcoma UK’s funding is a catalyst that enables us to look at all sarcomas and analyse what happens across all subtypes.” It’s hoped that the GeCIP project will also give researchers an insight into how sarcoma develops resistance to drugs and treatments, with any new understanding of the disease used to drive
10 • Impact Report 2018–19
improvements in personalised treatments and targeted therapies for patients. The library of genetic alterations collated by the end of the project will also provide a crucial resource for researchers studying sarcoma in the future.
Risk versus reward in research With Sarcoma UK funding a large range of different types of research, it’s worth talking about the importance of blue skies research and the concept of risk, as part of our research strategy is about providing the space for researchers to pump prime and try out new ideas. Sometimes as a funder, we fund work which has a lot of data behind it, whereby there is a lot of evidence that a piece of work will have the expected outcome. We test it and we take a small step forward in understanding sarcoma or how to treat it. This is important and worthy science to do and support, and how most science operates. However, there will be times where a piece of research proposes a whole new way of looking at something and is a leap into the unknown. This is generally what we would call blue skies research. With that comes the possibility of jumping into nothing, or potentially taking a huge leap forward in our understanding of sarcoma and how to treat it. The big leaps come with higher risk and as a charity we are happy to support projects which set out to test the ideas in new areas. The experts on our research advisory committee will recognise that these leaps have scientific basis in their proposition, knowing that brave new ideas can be a vital springboard for a whole new area of research. As one of the leading funders in sarcoma research, it’s about getting that balance right between funding the two types of research. Knowing that there are still so many questions about the cancer we don’t have the answers to, it’s sometimes worth being bold in the research we fund. Impact Report 2018–19 • 11
Research
Genomics or genetics? Your genome is all your genetic makeup together. So genetics is normally the study of individual genes, whereas genomics is studying all of the genes together. Genomic testing is not the same as genetic testing. Genomic testing for sarcoma looks at the genes in a tumour to learn more about it. Genetic tests look for inherited traits that can be passed on to the next generation through genes. In some cases, it might be appropriate to test relatives or family members, but genetic testing is not available for everyone with sarcoma. Some genetic tests can work out someone’s risk of developing a certain cancer if the risk is inherited in the genes. There is not currently a genetic test for sarcoma. However, research into this area is ongoing.
Research Science as a relay race Almost all of the projects listed in this report which completed over the 2018-19-year mention that they applied on the basis of wanting to develop previous work. Once their work with us was completed, they went on to obtain further funding to continue and develop their research. Research takes time, on average about 17 years to get research evidence into clinical practice. Very few changes are made to clinical practice without hundreds of experiments and tests, re-tests and reproducibility studies, questioning, refining and critiquing of the ideas within the scientific community. Research is done as a collective, and when Sarcoma UK funds a research project, we essentially help to complete one link in a massive chain within strands of research.
‘Treatments need to improve, and this will only happen through research. Diagnosis can be a huge problem, but treatments are not effective enough and lag behind most other cancers. It’s only a matter of time before Sarcoma UK’s targeted research funding yields positive breakthroughs.’ Anonymous Sarcoma UK supporter
Research Projects Over the past year, a number of sarcoma research projects funded by Sarcoma UK have completed. We take a look at what they found and what the next steps are for the research. There’s a common theme among many of the projects mentioned over the next few pages, which focus on ways to accurately diagnose patients and tailor treatments to the individual. Making an accurate and detailed tumour diagnosis quickly and efficiently coupled with understanding how different tumours respond to different treatments means that time isn’t wasted trying drugs which work for some people but not for others. As sarcoma has so many sub-types, being able to tailor therapies to patients is so important, as there simply isn’t a one-size-fits-all therapy.
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Research
Research Improving soft tissue sarcoma diagnosis Professor David Gonzalez de Castro Queen’s University Belfast This project set out to improve diagnosis of soft tissue sarcoma by developing a comprehensive genomic test to use on blood and tissue samples and then comparing and evaluating it against current tests being used. The test had an accuracy of 98% on the samples tested which is a huge improvement on the old methods. In one test, it does what is currently done through three technologies and is able to test for more genetic abnormalities than the current tests. This will dramatically improve patient care, as having an unclassified tumour currently means you are more likely to wait longer for the right treatment and access to clinical trials. What’s more, the testing process has the potential to be far cheaper than current testing costs done separately. Next steps for this research group is further development and troubleshooting of their diagnosis test. We’re hopeful that one day this blood test will be used routinely in sarcoma clinics.
Identifying patients who will respond to treatments which harness the immune system Dr Sandra Strauss University College London Hospital
By being able to select these soft tissue sarcoma patients who have these particular biomarkers, the idea is that they can then be matched with new and current therapies that they are then most likely to benefit from. Treatments that enhance the immune system to fight cancer have already shown great promise in the last few years with impressive results in both malignant melanoma, a type of skin cancer, and lung cancer. However only a proportion of patients benefit from these therapies, so finding a way to pick out patients who will respond to these treatments is important. This study used tissue samples from patients treated on the GeDDiS study* to investigate potential immune markers that may predict response to current and new immune therapies entering clinical trials. The aim was to use data from these samples to help select patients for individual treatment, including immune therapies currently available, but also provide data to help the development of prospective clinical studies of newer therapies that are moving forward into the clinical arena.
‘We wish to thank Sarcoma UK for their generous support which has enabled us to undertake and complete this project.’ Professor Adrienne Flanagan, UCL Cancer Institute and Consultant Histopathologist at the Royal National Orthopaedic Hospital
*GeDDiS is a recently completed randomised phase III clinical trial which compared first line treatment with chemotherapy drug gemcitabine in combination with docetaxel versus current standard treatment with another type of chemotherapy drug, doxorubicin. The study recruited 257 patients and no statistical difference was found between the study arms.
Patients who have inoperable or metastatic soft tissue sarcoma generally have a poor prognosis, with overall survival rates of approximately a year when treated with current first line palliative chemotherapy. There has been little change in this area for more than 20 years. Improved outcomes could be achieved by identifying biomarkers, a biological molecule found in blood, body fluids, or tissues that indicate that something normal or abnormal is happening, or of a condition or disease.
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Research
‘We are grateful to Sarcoma UK for supporting our research and excited about how our project is now developing, as it holds possibilities for both fundamental insights into sarcoma with potential direct future therapeutic impact.’ Dr Carsten Hansen, University of Edinburgh
16 • Impact Report 2018–19
Research Diagnosing and predicting the spread of malignant peripheral nerve sheath tumours
Identifying patients who will respond to drugs which target blood vessels
Professor Adrienne Flanagan UCL Cancer Institute
Dr Chryso Kanthou University of Sheffield
Malignant peripheral nerve sheath tumours (MPNSTs) are rare, aggressive sarcoma cancers, which currently have no specific biomarkers that help make a firm diagnosis. It means MPNST can often be mistaken for other types of cancerous tumours, a situation made more difficult by the fact that it is very difficult to predict if these tumour types will spread. Professor Adrienne Flanagan and her team have generated an overview of the molecular features of MPNST and identified features that will allow a more accurate diagnosis of this tumour in the future. What’s more, the work found a molecular way to separate benign or low grade tumours from high grade ones and therefore predict which tumours are likely to spread to other parts of the body.
Soft tissue sarcomas can be very difficult to treat, so there is an urgent need to develop more therapies that are more effective than what is currently available. Like other cancers, sarcomas develop blood vessels that ‘feed’ them with oxygen and nutrients, which enables them to grow and spread. Several existing drugs target and damage these blood vessels, and are used for the treatment of sarcomas. Some patients benefit from this type of therapy but unfortunately others don’t, and we don’t fully understand why. The more information and understand we can get around the factors that determine which sarcomas respond, then potentially treatments can be tailored to individual patients.
This project funded by the charity is a good example of how an initial body of work can often provide an evidence base that is a catalyst for further research that sits beyond Sarcoma UK’s involvement. Professor Flanagan’s lab was invited to play a major role in a Harvard-led international collaborative project to research MPNST as part of the Genomics of MPNST (GeM) Consortium. Professor Flanagan is on the steering committee for this project and on the genomics working group is Dr Nischalan Pillay, another researcher whose work was funded previously by Sarcoma UK. The consortium will use whole genome sequencing to analyse more than 100 samples of MPNST linked to neurofibromatosis type 1 (NF1), a genetic condition that causes tumours to grow along the nerves. What is found in this study will build on what Professor Flanagan and her team have found in the initial Sarcoma UK study.
Dr Chryso Kanthou and her team looked at two proteins, vascular endothelial growth factor (VEGF) and neuropilin 1 (NRP1), that can be monitored in soft tissue sarcoma. Both proteins are made by sarcoma cells and endothelial cells, which are the cells that make up tumour blood vessels. They identified important changes in the way the sarcoma cells behave when NRP1 is absent compared to when it is present in abundance, changes that could impact on their growth, spread and response to therapy. They are now analysing all the data produced to establish whether VEGF and NRP1 have the potential to be developed as reliable biomarkers to predict sarcoma patient response to the drugs that target tumour blood vessels. Dr Kanthou and her team have secured further funding of almost £100,000 from the Weston Park Hospital Cancer Charity to work on additional sarcoma work in this area.
Impact Report 2018–19 • 17
Research
Research Putting the Pressure on Osteosarcoma Dr Carsten Hansen University of Edinburgh
Does your age affect how well your body takes to anti-cancer drugs? Dr Gareth Veal Northern Institute for Cancer Research, Newcastle University Dr Gareth Veal and his team at Newcastle University are investigating the ways a person’s age can affect the way their body handles anti-cancer drugs. This project has two aims; the first is to investigate the differences between the way adults, teenagers and younger children break down the drugs used in the treatment of Ewing’s sarcoma, and whether any differences observed can help to explain the variability in toxicity and survival rates observed between these groups. The second is to look at whether biomarkers found in the blood can predict patient toxicity. Although the funding from Sarcoma UK for this work has now come to an end, clinical data are still being collected and so the outcomes of the research cannot yet be reported. However, the collection of data is going well and some interesting results are beginning to materialise, so expect a full update in the near future through Sarcoma UK’s social media channels and website. 18 • Impact Report 2018–19
Osteosarcoma, a type of bone cancer, is fuelled by many different inputs. One of particular interest is the mechanical stress within tumours, which is higher than in the surrounding healthy tissue. This mechanical stress is known to encourage tumour growth and also make the tumour harder to treat. So far, how these underlying cellular processes are driven and the underlying processes fuelling these events are currently not known. Dr Carsten Hansen and his multi-disciplinary team at the University of Edinburgh have now gained fundamental insights into these processes. They are now seeking follow-up funding to further this research and to utilise the new knowledge for translational impact.
‘We need research looking into different types of sarcoma so no other family has to lose a loved one like my mum. At the time there were no treatments other than surgery, and she died in October 2016. She donated her tumour to research, so I’m hoping this is helping to develop a better treatment for others.’ Grace Shelton, Sarcoma UK supporter
Afatinib clinical trial now open A piece of research funded by Sarcoma UK in 2012 has recently resulted in a clinical trial being opened, involving Afatinib, a targeted therapy drug normally used to treat a specific type of lung cancer. Back in 2012 we awarded £28,000 to Professor Adrienne Flanagan to fund analysis as part of a larger piece of work looking at identifying new therapies to treat chordoma, a rare type of bone cancer that affects people in their 40s and 50s. The project involved screening over 1,100 drugs against three cell lines for chordoma to identify and select a smaller group of compounds which show the most promising results as a potential therapy. The results of this work have culminated in the opening of a Phase 2 clinical trial in 2018 at Leiden, Milan and UCL in London.
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Research
Research Investing in the future of sarcoma research Sarcoma UK funds PhDs so that we fund the sarcoma research of the future. It’s important that those novel ideas and fresh approaches to research continue. For every PhD student we fund, although it’s not a given, we like to think we are funding the beginning of the rest of their career in sarcoma. In 2018/19, we awarded two PhDs and part contributed to two more: Dr Paul Huang, Institute of Cancer Research (ICR), ‘Deconstructing the sarcoma matrisome for drug target and biomarker discovery’ Dr Richard Martin, Aston University, ‘In vivo and in vitro evaluation of novel gallium doped bioactive glasses for the management of osteosarcoma’
‘Research is essential to fully understand each sarcoma sub-type and accelerate the development of targeted therapies and hopefully even cures. The lack of effective treatments available today for these rare diseases is heartbreaking for all those impacted by sarcoma.’
We part contributed to the following:
Warren Rice, Sarcoma UK supporter
Dr Furtado recently published a paper about this work in Clinical Orthopaedics and Related Research and presented this Sarcoma UK funded work at the MSTS (Musculoskeletal tumour society) conference in October 2018 in New York. She was awarded the ‘Young investigators award’ for the best podium presentation.
20 • Impact Report 2018–19
Ruth Thomas’s PhD: Ruth worked on our project ‘Neuropilin-1 (NRP1) and VEGF isoforms as major players in sarcoma response to vascular-targeted therapies for cancer’ under Dr Chryso Kanthou has now finished her PhD and is writing up her thesis for submission for the University of Sheffield. Sherron Furtado’s PhD: Sherron worked on ‘Functional evaluation of survivors of paediatric bone and soft tissue tumours - a pilot study of two new technologies’ under Craig Gerrand at Newcastle University.
Sarcoma UK’s learnings and developments for the future? We’ve been listening to the scientific and patient communities and made a few changes to the way we do things in terms of our research programme. One good example is the fact that we’re funding more PhDs in our lab-based research rounds in response to the large number of good quality PhD applications we were receiving, but weren’t able to financially support before. The year also saw us shift our grant round schedules to better mirror university timelines so that we have a higher potential of getting strong candidates applying to the PhD projects once they are awarded. We are also opening grant rounds for longer to give people a longer time to work on their application and get collaborations established, something we’ve recognised through feedback from previous applicants. Impact Report 2018–19 • 21
Information
Information
Knowledge has impact We know having the right information which is accurate, up-to-date and readily available can make such a difference to anyone who is affected by sarcoma. It’s the main reason why people visit the Sarcoma UK website, to get information about the cancer, understand what this means and find out about what treatment options could be on the horizon. At the start of the 2018-19 year, Sarcoma UK’s information team had three main areas it wanted to work on: • Continue to expand and build on the charity’s range of resources • Work better and more with sarcoma support groups around the UK and learn and act on their support needs • Respond to the needs of our stakeholders through information
What difference does our information make to users? More than 1200 people responded to a poll we ran about how our information resources were helping, and the overall feeling is very encouraging. Almost seven in ten (69%) of respondents told us our sarcoma information was helpful, informative and easy to understand. A further 18% said they felt the information we provided was enough to answer their questions. Just under one in ten people (9.6%) said they would have liked more information, and were then prompted to tell us what more they would have liked, a mix of where else to get support, more data around incidence rates for a particular sub-type of sarcoma and more information around recurrence. In a previous poll, supporters had told us they would welcome more information in our resources around palliative care. Although we didn’t quite manage to incorporate this information into our resources in the 2018-19, we’re keen to make it happen but also to get it right, and work is underway to make this a reality.
69% of respondents told us our sarcoma information was helpful, informative and easy to understand
18% said they felt the information we provided was enough to answer their questions.
9.6% said they would have liked more information.
More than nine in ten people (94%) felt reading our information gave them a better understanding of what sarcoma is, their particular sub-type and what treatment options were available to them. Of the people who said reading our information had changed the way they feel (53%), seven in ten (70.4%) said they felt calmer, more reassured and better able to deal with their situation.
Above: Mr Nick Kalavrezos at UCLH with a sarcoma patient at a follow-up clinic. 22 • Impact Report 2018–19
Impact Report 2018–19 • 23
Information
Information Similarly, we updated our proton beam therapy factsheet in readiness of proton beam being available as a treatment option at the Christie Hospital in Manchester. Our new lymphoedema pocket guide was created after clinical staff said they needed something that patients could refer back to telling them about lymphoedema, seeing as it could occur at any time and a regular factsheet would less likely be kept physically. We had feedback from patients and health professionals to say they weren’t using it despite liking the content so we worked to create a more user friendly format. The charity’s new rehabilitation booklet was the result of talking to a lot of allied health professionals like physiotherapists about the importance of rehabilitation as part of the treatment journey. As a result of this we are determined to engage more with AHPs and that we have knowledge and expertise we should be sharing. The outcome of this is that we’re doing more outreach in 2019-20 with work having commenced on producing a sarcoma guide for AHPs.
Above: Proton beam therapy at the Christie Hospital in Manchester. The Christie NHS Foundation Trust.
‘I appreciate all that you do, the information you have and provide. It’s invaluable to those who are patients, family or professionals.’ Cindy-Anne Munro, supporter of Sarcoma UK
24 • Impact Report 2018–19
More resources One of the new information factsheets added to the portfolio was the pre-diagnosis flyer, created to fill a gap in provision for people who were as yet undiagnosed or were awaiting scan results. Our Support Line team were receiving an increasing number of calls from people who were in this situation, and felt such a factsheet could help alleviate anxiety as well as inform people who may be at that time be sitting outside of regular sarcoma services. The new genomics factsheet wasn’t based on demand from service users but from working with our research and policy team. With genomic testing for sarcoma being rolled out as standard practice across NHS England, we felt we needed to produce a factsheet that would answer a lot of the questions that would come naturally with such a development, such as who is eligible for testing, what it is and what the benefits of it are.
Who’s getting our information? We distributed 6,059 patient guides to hospitals, sarcoma service centres and clinics throughout the UK in 2018-19. We had more people than ever download sarcoma information, with fewer than 10 requests for physical copies to be sent out. Total downloads of information resources were more than 21,400 over the year.
‘Thank you so much for the information you’ve given me. I will be looking into these clinical trials. Also, a big thank you to all of your team at Sarcoma UK. You guys have been lovely.’ Anonymous Support Line user
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Information
Information Left: The Bournemouth Support Group in action.
Helping people make an informed decision around clinical trials Although we set up the clinical trials hub on the Sarcoma UK website in March 2018, it was too early to get an understanding of how it was helping people. The trial was set up in part to inform people about what trials were up and running in the UK, but also to arm people with the information they needed to think through whether clinical trials was right for them. The charity’s Support Line has had an increase in queries about available clinical trials, which has led to engaging more actively with clinical trial leads across the country. This in turn has meant the information on our trials hub being updated on a more regular basis. We’ve also done some background work into how we structure the Clinical Trials Hub and how we hold the information, which has meant that updating the website more regularly has been easier. But what have users felt about the hub and the information it provides? Overall, people are getting what they need in terms of informing themselves about clinical trials. More than 92% of visitors to the hub, of whom about 70% are either a patient or a close relative, who responded to a poll said their questions about clinical trials had been answered. More than half of people (60%) felt they had found a clinical trial that was appropriate and that they could then talk to their clinician about taking part.
26 • Impact Report 2018–19
‘I didn’t have any prediagnosis information three years ago which would have been helpful at the time. I had never heard of a sarcoma, I sure have now, and it would have helped so much.’
Support groups
Amanda Hunt, supporter of Sarcoma UK
We know how important support groups are and recognised that we could be doing more with them. Over the course of the year we visited eight support groups across the UK and we listened to what they were telling us. The first step in this process was to make it easier to get in touch by making our information and support officer the fixed point of contact for all support group leaders. We also set up a closed Facebook group for support group leaders so they could share best practice, offer their own support, new ideas as well as their experiences of running these groups with each other. Not only that, we helped launch a brand new support group to cater for the West Midlands region, which was sorely lacking a group. We’ve also had more patient involvement in reviewing our patient information – the East Anglia group reviewed the charity’s rehabilitation booklet before we went to print, and we’re keen to keep this momentum with support groups up through setting up a dedicated training day for leaders in September 2019, itself a direct result of requests from leaders. Impact Report 2018–19 • 27
Policy and Campaigning
Policy and Campaigning One such example is one of the team joining Cancer 52’s Policy and Public Affairs Steering Group, who aim to drive forward the agenda for rare and less common cancers focussing on work around delivery of the NHS’ Long Term Plan; access to data and access to medicines and treatments. It’s a way to ensure that the group is better informed about sarcoma and keeps the focus on the issues important to the charity and its supporters. A second example is Sarcoma UK’s Chief Executive, Richard Davidson, attending the cancer charities roundtable event hosted by the then Minister for Public Health, Steve Brine MP. The chief executives of fifteen cancer charities attended the event in Parliament, as did National Cancer Director, Cally Palmer. It was an opportunity to raise the challenges faced by patients with rarer cancers and discuss the upcoming long term plan for the NHS.
Above: Sarcoma UK’s Chief Executive, Richard Davidson, speaks at No.10 Downing Street.
Having greater influence around sarcoma in the UK Over the past few years Sarcoma UK has been steadily increasing its work in areas that fell outside of research, information and support. We recognise that, alongside all of those key areas, we could also make a big difference to people affected by sarcoma if we were involved in policy and public affairs work. So we dedicated more time and internal resources into growing these areas and the impact we have in those spheres. It’s more than just getting our voice heard, it’s getting the pieces in place to make the right people in the right places to take action. Some of this is about adding our voice to a larger group, feeding back to consultations around drugs or proposed changes to care, and networking to forge new relationships with influential people within the health and policy arenas.
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The impact of our work in policy and public affairs will take time, sometimes even years, to come through. The next few pages details the mix of relationship building, awareness raising with particular organisations and official responses to consultations which we’re hopeful will lead to improvements in care to sarcoma patients and their families. The main things we wanted to achieve this year were: 1. Further establish our role as leaders and partners in the sarcoma and healthcare community 2. Develop our range of partnerships to achieve more for sarcoma patients 3. Improve access to drugs and treatment
Impact Report 2018–19 • 29
Policy and Campaigning Why data and the numbers really count
Below: A roomful of sarcoma experts, researchers and clinicians discuss the issue of sarcoma data at the first GeCIP genomics meeting, March 2019.
Having good accurate data about sarcoma underpins a lot of the work that we’re doing at the charity. It’s more than just getting a fuller, up-to-date picture about sarcoma in the UK, it’s about knowing how big the problem is and from there, having the evidence base to ask for change. The issues that we know exist around sarcoma are harder to ignore if you can present evidence-based arguments about how many people are being diagnosed each year. Getting the data itself has proved to be a huge learning curve, but an important piece of relationship building. There was a total of seven months between asking for the data from the various bodies*, learning about what data they did and didn’t have and also what we could reliably say in terms of our messaging based on what data we ended up with.
Policy and Campaigning We released this data in July 2018, during Sarcoma Awareness Week. For the first time in almost nine years, we could update all of our key messages around sarcoma, some of our statistics based on what new information we had and then share it with the rest of the sarcoma community. This was an important milestone, we had effectively reset what we knew about sarcoma incidence in the UK, but it also brought up a multitude of challenges around data that we are now a part of the process of dealing with. Our work around data doesn’t stop there. Thanks to the persistent lobbying by Sarah McDonald, Sarcoma UK’s Director of Research and Policy, she was subsequently selected to be a part of Public Health England’s (PHE) Get Data Out programme, which analyses anonymised patient data to show the most recent information on cancer. The initiative came about from our work with Cancer 52, the alliance of close to 100 rare and uncommon cancer organisations, working with the National Cancer Registration and Analysis Service (NCRAS) around publishing data for all cancers, however rare, as opposed to just the ‘big four’ of breast, lung, prostate and bowel cancer. As an organisational member of Cancer 52, and with many of the challenges in publishing data applicable to sarcoma, having a presence in both the Get Data Out programme and as part of Cancer 52, is vital to ensure sarcoma remains a priority.
*The National Cancer Registration and Analysis Service (NCRAS), Welsh Cancer Intelligence and Surveillance Unit, the Scottish Cancer Registry and the Northern Ireland Cancer Registry 30 • Impact Report 2018–19
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Policy and Campaigning How your voice is helping to shape better care for sarcoma patients – NHS England’s Sarcoma Service Specification
‘NHS England received five times as many responses for the Sarcoma Service Specification as they would normally expect from such a consultation. This was very much about people affected by sarcoma wanting their voice to be heard.’ Sarah McDonald, Director of Research and Policy, Sarcoma UK
32 • Impact Report 2018–19
NHS England’s revision of the Sarcoma Service Specification was a key opportunity for Sarcoma UK and its supporters to get their voice heard. We know that sarcoma patients receive the best possible care when treated in a sarcoma specialist centre under the care of a dedicated sarcoma multi-disciplinary team (MDT). When the Service Specification went to consultation phase in late 2018, we pushed this to our supporters as a chance to help make sure that what needs to be done in terms of patient care is done and that any proposed positive changes are implemented. In practice, this means referral pathways must be clear, known and promoted, that when there is a suspected or confirmed sarcoma, a patient is referred directly to the appropriate centre for treatment, and have their case discussed at a sarcoma MDT, even if they are cared for by another team within the NHS, such as obstetrics and gynaecology. It was important that Sarcoma UK was able to contribute to the approval of the revised sarcoma service specification through not just an organisational response, but by reaching out to the British Sarcoma Group, National Sarcoma Forum and the Bone Cancer Research Trust encouraging them to promote to their respective audiences. It was our front page story on the website for six weeks, and our posts on Facebook about it had more than 1500 likes and shares. Thankfully, all this effort paid off. NHS England told us that they received five times as many responses by the 11 December 2018 deadline than what they would normally expect from such a consultation. These 500 or so responses are a powerful sign to NHS England that the Sarcoma Service Specification needs to remain a priority. The Specification itself was officially launched on 24 July 2019, and is a good example of the time and processes involved behind the scenes to keep sarcoma a priority.
Policy and Campaigning The issue of morcellation and working with the Royal College of Gynaecology (RCOG) In 2014, Sarcoma UK produced Gynaecological Sarcoma: The Hidden Cancer, a report that recommended the need for consensus around how to manage gynaecological sarcomas, red-flag symptoms that ought to be included in guidelines and the need for patients to be told about the associated risks with procedures in order to give informed consent. The report reflected the wide-ranging differences in care that women with gynaecological sarcomas were receiving. There was already concern about women undergoing laparoscopic power morcellation to treat uterine fibroids - non-cancerous growths that can grow in/around the womb - and the risk of inadvertent spread of a misdiagnosed sarcoma to the abdominal and pelvic regions. The issue was raised again in 2018 when RCOG launched a formal review into morcellation, instigated by a family member of a sarcoma patient. Sarcoma UK submitted an evidence-based response, strongly recommending patients be given information which clearly stratified agerelated risk so that patients with fibroids could make an informed decision about the procedure. The Royal College chose to go straight to review with new draft patient information that did not reflect any of the concerns made around morcellation. We then asked them to publish the report of the consultation and to re-draft the patient information to fairly show the risks around morcellation. Since then, the clinical guidelines on morcellation of fibroids and the patient information given to women now highlight the increased risk of sarcoma with age, and also describes the red flag symptoms to be considered. It’s a huge step forward and means women now have accurate information to make an informed choice about their care.
‘This is a good example of working alongside organisations and using patient experience to help make sure women have the information they need. The risk of a sarcoma being misdiagnosed as a fibroid gets higher as women get older and we know there are red flag symptoms that can help identify a uterine sarcoma from a fibroid. The changes made to the RCOG patient information means women can now make informed decisions about their treatment and care. This will actually save lives.’ Claire Kelleher, Director of Information and Support, Sarcoma UK
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Policy and Campaigning
Policy and Campaigning
Amplifying our voice Sometimes being a lone voice makes it easier to be drowned out, which is why we’ve added our support to a number of calls and asks in a joint effort with partner and peer organisations including Cancer Research UK. The charity was a co-signatory on a letter to Simon Stevens, Chief Executive of NHS England, and Cally Palmer, National Cancer Director. The letter called for a rolling programme to replace radiotherapy equipment used to treat cancers. This is crucial for all cancer patients, but for sarcoma patients especially as radiotherapy is one of the few treatment options available. Non-extremity sarcoma is often solely reliant on radiotherapy, so all places where people are treated for sarcoma, both specialist centres and designated treatment centres, need to be equal in terms of the quality of their equipment. The outcome was as positive as we could expect, commitment from NHS England to ensure the successes of operational delivery networks and therefore increased funding for radiotherapy and a greater investment as part of the NHS’ Long Term Plan to support IT and digital solutions. We were also co-signatories on the Cancer Campaign Group letter on the Immigration Bill. This was part of an amendment seeking to ensure the Government undertakes an assessment of the impact of Brexit on the research, health and social care workforce, and publishes a report on their findings before the freedom of movement within the EU and the UK ends.
Making ourselves heard to keep sarcoma on the agenda We submitted a response to the consultation run by the National Institute for Health and Care Excellence (NICE) who were keen to gauge if they were meeting their stakeholders’ needs through their ten principles, and how they make their decisions around all areas of their work.
Below: Sarcoma UK Chief Executive Richard talks to Matt Hancock, Secretary of State for Health and Social Care
Although Sarcoma UK was in general agreement with their principles, we pointed out that their processes and reviews should be amended when looking at rare disease numbers or low patient numbers such as with sarcoma sub-types, where there may be a small patient cohort and that models used must be fit for purpose. 34 • Impact Report 2018–19
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Policy and Campaigning The evidence-based requirement and financial cost of drugs and devices to gain NICE approval may be prohibitive to some small companies when there is a smaller patient cohort and we commented that the NICE processes should reflect this. The point of this is around making the process more likely to have a positive outcome for medicines manufacturers who produce drugs that could be beneficial to sarcoma patients. Currently, due to smaller patient numbers, these are less likely to successfully go through NICE’s technical appraisal process, but changes could give a greater incentive to the pharmaceutical industry to research new sarcoma drugs.
‘Taking Sarcoma UK’s policy and campaigning work up another level is so important to drive change that will benefit people affected by sarcoma, and is equally important as the research we fund.’ Sarah McDonald, Director of Research and Policy, Sarcoma UK
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We’re listening to improve the quality of our sarcoma information With more than 21,000 downloads of sarcoma information resources through the website alone, making sure the information we have is fit for purpose and effective is so important. When we hosted the London and South East National Sarcoma Forum meeting at Sarcoma UK’s offices, as well as a chance to give feedback on what the NHS 10-Year Cancer Plan needed for sarcoma patients, it was also a prime opportunity for nine clinical nurse specialists and allied health professionals to complete a professional review of our latest Rehabilitation and Life after Treatment booklet. Similarly, we met two new-in-post sarcoma nurses from Glasgow and Dundee at the Scottish Sarcoma Network Meeting in Glasgow, who gave feedback on the prediagnostic flyer which we have incorporated.
Policy and Campaigning Getting drugs for sarcoma patients One of the key achievements in the 2017-18 year for Sarcoma UK was getting the drug olaratumab approved by NICE, marking the first new treatment for treating advanced soft tissue sarcoma since 2010. Disappointingly, in January 2019, Eli Lilly and Company, the pharmaceutical company who produce the drug, announced the results of a Phase 3 trial which ‘did not confirm the clinical benefit of Lartruvo (the commercial name for olaratumab) in combination with doxorubicin’, when treating advanced soft tissue sarcoma. It has now been removed from the treatment options for new patients. Although a blow for sarcoma patients, it was still an important step to have successfully got olaratumab on the agenda in the first place and for it to have been given that chance to go through the trial and through the NICE technical appraisal.
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Awareness
Awareness
Tackling the awareness issue Awareness of sarcoma can have an impact on so many different aspects of someone’s experience of the cancer, from a patient knowing the key symptoms to being referred to a specialist sarcoma centre for treatment and beyond. It’s a topic that stretches far beyond just the patient, their family and healthcare professionals and something that we’ll likely always be promoting, especially as the charity widens its group of stakeholders to include MPs, policy makers and other partnering organisations and bodies.
Below: Sarcoma Awareness Week 2018 provided the baselines of what we could achieve in awareness week in 2019.
There’s no such thing as too much awareness of sarcoma. Awareness goes hand in hand with the policy work we’re doing, and is a multi-layered, long-term issue that will take time to get right. Awareness of the cancer is the first step, but campaigns of any kind need to be repeated and have time to embed, and is not something that finds success overnight.
Sarcoma awareness levels in the UK In the same year that we asked the question of how many people were being diagnosed with sarcoma every year, (see our campaigning section), it was also timely to ask how good, or bad, awareness of sarcoma is in the UK. It was a question we hadn’t asked in years and is useful to get an understanding of not just how much further we needed to go with this, but also what areas we might to focus on in the future through awareness campaigns. At the end of March 2019, we ran a nationally representative poll through YouGov to gauge whether the general public knew what sarcoma was, its symptoms and to establish if there were any misconceptions about sarcoma. Our top line findings from the 2033 people asked were:
One in four respondents (25%) correctly knew that sarcoma was a cancer of the bone and soft tissue. This is more than we had thought.
25%
There was very little confusion about what else sarcoma could be; respondents correctly knew or didn’t.
One in three people When presented with a list of potential red flag symptoms of sarcoma, there were some encouraging signs. One in three people stated that one of the key symptoms of sarcoma was a growing lump, with 30% also saying bone pain was another symptom of sarcoma.
Three in ten people (30%) felt they had no idea what a symptom of sarcoma could be. 38 • Impact Report 2018–19
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Awareness
Awareness Putting a spotlight on sarcoma Sarcoma Awareness Week 2018 was the charity’s biggest ever awareness week by far:
We got through to more than 850,000 people through social media
450% increase in people liking and sharing our posts on Facebook
Nearly 500 people changed their social media profile picture
Traffic to the website was up by a quarter 35 pieces of coverage across national and broadcast media Sarcoma Awareness Week in 2018 was a chance to press the reset button, be more ambitious about what we could achieve and be more focussed about what we said. We also recognised that Sarcoma Awareness Week could have a bigger impact by shifting the onus to supporters in terms of reach. The message was simple – sarcoma is cancer. For months we had been working towards using awareness week as the point where we release and share the findings from our efforts around up to date sarcoma 40 • Impact Report 2018–19
incidence data. The fact that 5,300 people, not 3,800 as previously thought, were diagnosed a year is big news for both the healthcare professionals and those affected by sarcoma. It was a solid starting point in getting sarcoma more in the news. We also expanded both the period of activity and the types of things people could get engaged with. Over a period of three weeks, encompassing a new comprehensive pre- and post-awareness week, we offered seven different ways to get engaged, from simply changing your profile picture, or sharing your sarcoma experience on social media to designing a t-shirt competition. The week also marked another first - a campaign through Facebook Ads, targeting people who had most likely never come across our work or were associated with sarcoma in any way, telling them in a video that sarcoma is cancer. The campaign got through to more than 68,000 people who were unfamiliar with sarcoma, more than 1,300 of whom went directly through to the Sarcoma UK website. The video, of fundraiser Mel de Lacy, was watched more than 13,600 times. Using the new incidence data as the focus, we got sarcoma in the press with the message that sarcoma is not as common as we thought. We received more than 35 pieces of media coverage across national and regional media, including The Sun, BBC News Online, BBC Wales, and a pre-record piece on ITV News (East Midlands, and Jersey), as well as The Scotsman and The Herald. The week was a trial for a number of new activities, providing learnings and baselines which has helped shape what sarcoma awareness week in 2019 looked like. We ran our first ever Facebook Live session that offered supporters the chance to ask our Support Line team questions, which come the end of the awareness week period had been played more than 4,100 times, telling us that this was something we could replicate in the future. Impact Report 2018–19 • 41
Awareness
Support Line
Engaging with healthcare professionals As well as online activity, we were keen not to lose the power of meeting people in person. As a national charity, it’s hugely important to us that we are out there as much as we can be, which is why throughout the year, as well as attending events like the annual British Sarcoma Group meeting, attended by hundreds of sarcoma healthcare staff, we’re also talking to healthcare teams across the UK to figure out how we might best learn from each other, work together and share best practice. Claire and Helen from our Information and Support team went to meet with the head and neck team at Kings College Hospital in London, a team who take surgical referrals from the Royal National Orthopaedic Hospital in Stanmore. As a result, the team there are keen to promote the charity and work alongside the sarcoma clinical community more closely. Helen and Sarah attended the British Orthopaedic Oncology Society, where Helen presented on the Sarcoma UK Support Line and the charity’s work as a whole.
Above: Sarcoma UK’s Support Line team
Support Line: More than just a listening post In February 2019, the Support Line service celebrated its third birthday. For a lot of people who use the service, it’s a lifeline, a source of up-to-date, reliable information, advice and guidance from experts who understand the patient and family perspective. Clinical teams do not have time or resource to be able to support all of their patients in a way that they would like to, which is where the Support Line can make a real difference. Increasingly, in addition to the direct support the three members of the team are able to give people who get in touch, the flagship service is increasingly proving to be an important springboard to new areas of work in policy and research for the charity. 42 • Impact Report 2018–19
‘Thank you so much for your response. It’s both detailed and super clear. I really appreciate the time, effort and expertise in responding to my question and it has made me feel more confident and less anxious. Thank you so much.’ Viola Metzger, Support Line user
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Support Line
Support Line
51% of contacts are family and friends
Most people (73%) preferred to email the Support Line than call (27%) Email Phone
49%
27%
are sarcoma patient themselves
525 individuals across 1657 occasions
73%
We’re speaking to Support Line users an average of three times. We spoke to 525 individuals across 1657 occasions in a year
15%
+15% We had an increase of 4.4% in contacts, and 15% more individuals compared to 2017-18
When asked to name one way the Support Line had helped them, respondents said:
Open at the right times Eight in ten callers (76%) to the Support Line do so within the regular opening hours of the service.
What difference are we having to people who want support?
165
23 44 • Impact Report 2018–19
165 hours We spent 165 hours talking to Support Line callers
23 minutes The average phone call length is 23 minutes (down from 27 minutes in 2017-18)
Nine in 10 people (86%) felt the Support Line had helped them in some way, whether that’s through reducing their anxiety/stress (38%), feeling more informed about sarcoma (42%) or simply feeling more confident about talking about their cancer (6%). In the same poll, more than half described the Support Line as an essential service (51%), with an additional third of respondents telling us that they felt the SL was ‘always knowledgeable and helpful.’ 12% of respondents felt comforted by the fact they knew it was available to them, even if they used it infrequently.
38% felt their anxiety and stress levels were lower
42% felt more informed about sarcoma
6% felt more confident about talking about their cancer
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Support Line
The top three reasons for contacting the Support Line were diagnosis, treatment and support.
‘I’m eternally grateful to you all for the help and support you gave me whilst my dad was suffering from an extremely rare sarcoma. It helped me understand what he was going through and I was able to help him more. Armed with the knowledge you gave me; I know that I was able to help ease his suffering to a dignified passing.’
Support Line
What we’re helping with through the Support Line
Bringing in a wider remit of expertise to the service
The top three reasons for contacting the Support Line were diagnosis, treatment and support. It’s not uncommon that people have been told they have a sarcoma, but don’t actually know what that is or what it means.
In December 2018, the Support Line team were joined by Joshna Hirani, a sarcoma occupational therapist with more than 20 years of experience working in the NHS, 12 of which were in sarcoma rehabilitation following orthopaedic surgery.
The service is a useful way to gauge what is happening on the ground. The introduction of a new sarcoma drug for example can prompt an increase in contacts, which in turn makes us think whether we might need to provide more information or create new resources. It also gives us detail which we can feed back to the clincial teams around what patients might be struggling with and in turn can lead to changes in practice for the better. At the time where olaratumab was removed as a treatment option for new patients, there was a noticeable increase in calls around the drug.
Helen Stradling, Sarcoma Specialist Nurse and Support Line Lead at Sarcoma UK said, “Joshna adds an extra level of support and guidance, bringing with her a different perspective which makes the team more fluid and able to offer a wider range of advice compared to only having sarcoma specialist nurses. If someone has questions about rehab or going back to work, we ask Joshna to get in touch with them, and that seems to work really well.
The majority of callers find the Support Line beneficial. Four in ten (42%) respondents to a poll about the service said they felt less anxious and stressed after speaking to our team of experts, an additional 44% said they felt more informed about their diagnosis or prognosis. When asked to describe the Support Line, exactly half of the respondents stated it was ‘an essential service’ with an additional third describing the team as ‘always knowledgable and helpful’.
‘We’re regarded by peers in the medical community as a trustworthy source of information and support.’ Helen Stradling, Sarcoma Specialist Nurse and Support Line Lead
“People do see us as an extra member of their clinical team, which is exactly as it should be, however, there are times when they do need to be in contact with their specialist teams.”
Hilary Horton, Support Line user and Sarcoma UK supporter
Above: Joshna Hirani, Support Line team 46 • Impact Report 2018–19
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Support Line
‘I really can’t thank the Sarcoma UK team enough for the help they have given me recently. Being diagnosed with a rare and basically unknown tumour, the charity was able to help get the right team around me to move forward with my sarcoma treatment. Absolutely worth their weight in gold. Thank you!’ Kevin Winstanley, Support Line user
Support Line
Where do we go from here?
How one question led to a national survey
Sometimes there are questions that the Support Line team shouldn’t and can’t answer because they are specific to the patient and their treatment and care plan. About one in six (15.9%) contacts to the service are referred back to their clinical team to talk directly with their clinical nurse specialist in most cases. A similar number of people are also signposted towards local services for additional means of support, mostly to a local Maggie’s or Macmillan centre.
Sometimes a simple question is enough to spark a national debate around best practice. One caller to the Support Line was considering Hormone Replacement Therapy (HRT) following early onset menopause as a result of surgery for uterine leiomyosarcoma. The Support Line started to gather information on hormone testing across the UK and quickly realised there was a range of different practices taking place across the country.
Going that extra mile The charity now offers ‘call backs’ to users of the Support Line when it is appropriate, predominantly in circumstances where we believe someone may benefit from a hearing from us, such as after a key hospital appointment. These are very early days of having a call back system which we will report on in future impact reports.
So they set up a national survey to get a clearer picture of practice, with the aim of that being a focus for discussion and hopefully consensus around best practice. The national survey highlighted that patients with gynaecological sarcoma are currently managed in a variety of settings and multi-disciplinary teams (MDTs). The survey also highlighted the use of HRT is varied and not consistent and there is a lack of clarity around the safety of HRT in this setting. The team presented their findings with the British gynaecological community, and the conversation around the next steps now the evidence has been presented is on-going.
‘I was very much reassured by the answer I received to my question. I really like being able to communicate via e-mail as that suits me best. Thanks so much for being there, you do wonderful work!’ Sarah Waddlington, Support Line user
‘This is the first time that I have been able to talk to a professional who actually knew what a GIST was. I’ve not had any communication from the hospital or appointments with consultant’s only tests, so the conversation I had was reassuring. No improvements needed as far as I am concerned!’ Marilyn Eskers, Support Line user
Above: Getting clear information and guidance about what to expect at each stage of treatment can make such a difference. 48 • Impact Report 2018–19
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Thank You
‘Fundraising has been important for the family. It helps us psychologically, as we’re doing something positive for the charity to help other people in the same position.’ Ben Ellis, Sarcoma UK fundraiser
We want to thank all of our donors for their continued generosity. We receive no government funds or support from larger cancer charities, so we are incredibly grateful to the individuals and groups who chose to donate to the work we do. We would love to openly thank so many people and organisations who have helped us achieve so much in this year, but out of respect to our donors’ privacy, we are only thanking our grant-giving organisations publicly. Thank you to: Boom Foundation GeeWizz Charitable Trust Jessica’s Sarcoma Awareness Roy Thompson Charitable Trust St James’s Place Charitable Foundation Tay Charitable Trust The Crispa (Richard Cahn) Charitable Trust The Forman Hardy Charitable Trust The Inman Charity The Lynn Foundation The Mason Le Page Charitable Trust
Sarcoma UK supporters John and Sue Young running in the Great North Run.
The Mistra Trust The Paul Cottingham Trust The Robert McAlpine Foundation The Will Charitable Trust The Wilmcote Charitrust The Woodroffe Benton Foundation The Worshipful Company of Fuellers
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Sarcoma UK 49 – 51 East Road London, N1 6AH 020 7250 8271 info@sarcoma.org.uk www.sarcoma.org.uk
@Sarcoma_UK @Sarcoma_UK uk.sarcoma
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