As Sarcoma Awareness Month draws to a close, Sarcoma UK has written to the new Secretary of State for Health and Social Care, Yvette Cooper MP, urging her to turn recent commitments on rare cancers into meaningful improvements for patients and families.
Throughout Sarcoma Awareness Month, we have shared the experiences of people living with sarcoma and highlighted why better diagnosis, treatment and support are urgently needed. Our letter to the new Health Secretary builds on that work by setting out three priorities for the Government: delivering the rare cancer commitments in the National Cancer Plan, improving psychological support and protecting access to innovative treatments.
Around 5,900 people are diagnosed with sarcoma in the UK each year. Sarcoma can affect people of any age and is the third most common cancer in children. Only 61% of people diagnosed survive for five years.
Evidence from our National Sarcoma Survey and Unique Among Cancers report shows that sarcoma services remain strained and fragmented, with people’s experiences affected by economic, regional and gender inequalities.
Turning rare cancer commitments into action
Sarcoma UK has welcomed the increased attention given to rare cancers over the past year, including the Rare Cancers Act and commitments made through the National Cancer Plan.
However, the letter stresses that these commitments must now be delivered promptly, including the development of cancer manuals intended to improve the consistency and quality of care.
Richard Davidson, Chief Executive of Sarcoma UK, said:
“Sarcoma Awareness Month has shown why people affected by sarcoma need action as well as awareness. The National Cancer Plan presents an important opportunity to improve outcomes for people affected by sarcoma and other rare cancers, but the commitments already made must now lead to timely and visible progress.”
Better emotional and psychological support
Sarcoma UK is also asking the Department of Health and Social Care to review whether existing psychological support meets the needs of people affected by sarcoma.
The rarity, unpredictability and severity of sarcoma can place considerable emotional pressure on patients and those close to them. Yet only one in five patients responding to our National Sarcoma Survey said they received enough emotional support from the NHS during or after treatment. Among loved ones and carers, the proportion was even lower.
Mental health support must be available when it is needed and properly integrated with cancer care.
Protecting access to innovative treatments
The letter also raises concerns about the application of VAT to medicines supplied free of charge through Early Access Schemes.
These schemes can allow people with sarcoma to receive promising treatments before they become routinely available, without the NHS paying for the medicine itself. Applying VAT could make these arrangements less viable and threaten access to treatments for patients who already have very limited options.
Sarcoma UK welcomed the Government’s recent statement addressing the issue but is calling for the Department of Health and Social Care to work with HM Treasury on a lasting solution.
Richard added:
“People with sarcoma cannot afford to lose access to the small number of treatment options available to them. The Government must ensure that tax rules do not create a new barrier between patients and potentially life-saving medicines.”
Sarcoma UK has asked the Health Secretary to:
- move forward with the rare cancer commitments in the National Cancer Plan
- review psychological support for people affected by sarcoma
- work with HM Treasury to protect access to medicines supplied through Early Access Schemes
Sarcoma Awareness Month may be coming to an end, but our work continues throughout the year. We will keep working with the Government, clinicians, researchers and people affected by sarcoma to press for faster diagnosis, better care and improved access to treatment.
