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Closing the Care Gap on World Cancer Day

As millions around the world mark World Cancer Day, we can pause to reflect on how far we have come in the battle against this disease and to look towards the future.

Sarcoma UK’s Chief Executive Richard Davidson delivers a message thanking supporters for helping to raise awareness of the devastating disease and raising money to fund vital research and provide support to patients and their families.

Noting that there are 15 diagnoses of sarcoma every day, he calls for greater partnerships to ensure earlier and more accurate diagnoses and better treatment for sarcoma patients.

To mark World Cancer Day, we have written to the Rt Hon Victoria Atkins MP, Secretary of State Health and Social Care, to meet to discuss how faster progress can be made on four key issues:

  • late diagnosis
  • referral pathways into the NHS
  • treatment options
  • support for mental health and wellbeing

Transcript of Richard’s message

World Cancer Day Message 2024

As millions around the world mark World Cancer Day, we can pause to reflect on how far we have come in the battle against the awful disease and look towards the future.

While most people know someone who has been affected by cancer, few have heard of sarcoma cancer because they make up less than 2% of all cancer diagnoses. Because they are not so common, a doctor may have only ever diagnosed one case in his or her entire professional career. They are, therefore, often misdiagnosed or diagnosed too late. Almost half of sarcoma patients receive an inaccurate diagnosis when they first seek medical attention. Almost one in five wait for more than a year before they get an accurate diagnosis. That, coupled with the aggressive nature of sarcoma, means that about half of sarcoma patients succumb to this devastating disease. Despite its rarity, 15 people are diagnosed with sarcoma every day in the UK.

So, where are we in tackling this disease? Great strides are being made in the field of research. New technology, including the emergence of AI, holds out the possibility of improved diagnosis of sarcoma cancers and is enlightening scientists on better and more effective ways and types of treatment. Sarcoma UK has invested £6.5 million in 85 pioneering research projects since we started 13 years ago. Last year, we spent £1.2 Million on 11 research projects to improve diagnosis and develop new and better treatments. We hope that the outcomes of these research projects will help to save thousands of lives.

But research is just one aspect of our work. Our Sarcoma UK Support Line staff talk to patients and their families every day who are confused, terrified and generally trying to come to terms with a sarcoma cancer diagnosis. Last year, over 1,000 people reached out to our Support Line. We are grateful for the opportunity to have been there to support them through those difficult times.

The theme for World Cancer Day is ‘Closing the Care Gap’. Too many sarcoma patients wait too long for a cancer diagnosis. Too many cases are misdiagnosed until it is much too late. That is why I have written to the Health Secretary, offering to work closer and in partnership with the Department of Health to help address some of the inefficiencies in the system.

But the greatest partnership we seek is engagement with you, members of the public. We want you to spread awareness of sarcoma so that people will go and get tested at the slightest suspicion of cancer or call our specialist sarcoma nurses on our Support Line to discuss your symptoms.

We are ever grateful to the amazing individuals who fundraise and raise awareness of our work. Only last week, 11-year-old Mia raised almost £12,000 by braving freezing cold January mornings to run in memory of her family friend Lolly Gilmour. Her appearance in the newspapers and on TV raised awareness of sarcoma. There are many, many more stories of tremendous courage and sacrifice in this battle against sarcoma.

So let us continue to support each other and work together towards a world where cancer is no longer a threat.

Transcript of letter to Health Secretary

The Rt Hon Victoria Atkins MP
Secretary of State Health and Social Care
Department of Health and Social Care
39 Victoria Street
London SW1H 0EU

2nd February 2024

Dear Secretary of State,

I am writing to you ahead of World Cancer Day 2024 to highlight the importance of our work at Sarcoma UK. Sarcoma, most commonly presenting as a lump that develops in bone or soft tissue, is the third most common cancer in children, but can affect anyone at any age. At Sarcoma UK, we focus on all types of sarcomas and fund vital research, offer support for anyone affected by sarcoma, and campaign for better treatments. Around 5,300 people are diagnosed with sarcoma per year, but just 55% of patients will survive beyond five years. Like the Government, we want to see better outcomes for people with sarcoma. Please will you therefore meet with me to discuss how we can work together to make faster progress on the following key issues: (1) late diagnosis, (2) referral pathways into the NHS, (3) treatment options, and (4) support for mental health and wellbeing.

Sarcoma is diagnosed later and has worse outcomes compared to almost every other cancer. GPs and physiotherapists are key to identifying sarcomas, but are often unaware of the symptoms, resulting in delays in diagnosis, or misdiagnosis. Patients may see their GP multiple times before their symptoms are taken seriously – 1 in 3 sarcoma patients wait over six-months to be diagnosed after their initial appointment with a healthcare professional.

At Sarcoma UK, our Delays cost lives report (2020) called on policy makers to make faster and more accurate diagnosis a reality for the sarcoma community. We recommended a sarcoma education programme for healthcare professionals, and we have since worked with our partners to:
• Develop an online and accredited sarcoma training module for GPs
• Launched an e-learning module with the University of Nottingham to help physiotherapists identify sarcomas, and
• Produced a video to ensure medical students and junior doctors have knowledge of sarcoma symptoms.

Improving early diagnosis is essential for survival. For every 1cm increase in the size of a soft-tissue sarcoma at diagnosis, there is a 3-5% decrease in the chance of cure .

As soon as sarcoma is suspected, patients should be referred to one of seventeen specialist sarcoma centres across the UK to ensure they receive the best possible care. NHS England states that all sarcoma patients in England must be treated at a specialist centre; but Sarcoma UK’s National Sarcoma Survey from 2020 showed this was not true for 13% of adult patients.

This is an ongoing issue as many calls to the Support Line we run, report that patient referrals are not progressing as they should. Our Support Line is staffed by highly experienced nurses and has helped people affected by sarcoma more than 20,000 times since February 2016, and receives direct referrals from eight NHS teams that feed into specialist sarcoma centres, meaning we contact individuals without them having to find us. We understand that the NHS is under tremendous pressure; but in the last year, our Support Line has had to become much more proactive to ensure that patients’ referrals have been sent onto and received by the correct specialist team.

The referral pathway for a sarcoma patient varies greatly across the country. We are therefore working with clinicians to find out why this is and to properly map the referral pathways. This is crucial, as specialist centres have the expertise in this complex cancer. Diagnoses from non-specialist centres subsequently reviewed by expert pathologists resulted in a major change in diagnosis 20-30% of the time. Current data also suggests that 1-year survival post-treatment at a specialist centre compared to elsewhere increases from 88% to 92%.

We do not know enough about the causes of sarcoma and how we could effectively target them with new treatments, and sarcoma tends to be underfunded by many cancer funders compared to the proportion of people affected by the disease. A lack of investment in research has led to limited treatment options for sarcoma patients, as very few new treatments are being developed. Sarcoma UK is taking steps to redress this through our own research programme – to date, we have committed over £6.5 million to over 80 research projects across the UK to date, with two-thirds (£4.28 million) invested into new and better treatments. Urgent action is therefore needed to redress the underfunding of sarcoma research, and to increase the number of and access to new clinical trials.

More action is also needed on genomic testing which could be game-changing for cancer in terms of diagnosis and treatment. Whilst sarcoma is one of few cancers to have Whole Genome Sequencing routinely commissioned on the NHS in England; genomic testing is not being universally offered so patients are losing out. Cancer services need to be much better integrated and coordinated. Sarcoma UK is currently running a project to identify how to address current barriers to ensure that all sarcoma patients can benefit from genomic testing.

Finally, we know that sarcoma has a big impact on the mental health and wellbeing of patients and their families. 90% of patients told our 2020 National Survey that their diagnosis or treatment had a negative impact on their mental health. However, 45% of patients said they were not given enough information when they were first diagnosed; and 60% said they were not given enough emotional support throughout their treatment. Families and carers told our survey that one of the most important improvements to sarcoma services is the provision of formal emotional support. We want to see joined-up support for the physical and mental healthcare needs of sarcoma patients and their families.

I very much look forward to hearing from you and hope you will meet with me to discuss how we can work together to deliver the progress we both want to see for sarcoma patients.

With best wishes,
Richard Davidson
Chief Executive

Our letter to the Rt Hon Victoria Atkins MP

Secretary of State Health and Social Care)


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