Policy and Public Affairs – how we’ve influenced and engaged | Sarcoma UK

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How we’ve influenced and engaged

The last decade has seen a transformation in policy and public affairs work for Sarcoma UK, stepping up a gear in recent years.

There have been many key moments of influence, resulting in improved access to treatments, better data and greater awareness among politicians.

Early diagnosis is now the biggest issue, according to those who shared their insights to inform the charity’s strategy.

The commitment to campaign for earlier diagnosis – key to giving sarcoma patients the best chance of survival – kicked off in 2020 with a ground-breaking report, Delays Cost Lives.

‘We already knew that early diagnosis was a research priority, but everyone in the sarcoma community has a role to play in helping to achieve this and transform the outlook for patients, and this report can be the catalyst for change,’ says Bradley Price, Policy and Public Affairs Manager at Sarcoma UK.

In 2019, there was an important advance in morcellation, thanks in part to the contribution of Sarcoma UK campaigning for women considering this as a treatment for fibroids to have the information they need.

Revised guidance from the Royal College of Obstetricians and Gynaecologists now covers consent as well as new information for patients about the procedure and the risks as well as treatment options.

Early diagnosis is now the biggest issue, according to those who shared their insights to inform the charity’s strategy. 

Early diagnosis is now the biggest issue, according to those who shared their insights to inform the charity’s strategy. 

More insight and information are paving the way for better care of sarcoma patients. Two National Sarcoma Surveys in 2015 and 2020 have helped create a valuable pool of data for understanding and influencing.

The most recent National Sarcoma Survey saw 1,117 patients, parents of young sarcoma patients, and carers add their voices to make real change to the future of sarcoma care.

In 2019, the NHS England Sarcoma Service Specification heralded the first time that all sarcoma services were commissioned to deliver the same level of care to patients across England.

This opportunity for people to have their say and change how sarcoma is treated prompted an overwhelming response, truly demonstrating the benefit of involving patient organisations. This outlined the importance of treatment in a sarcoma specialist centre by a sarcoma multi-disciplinary team.

Genomics is a key part of the charity’s research portfolio and is also helping to inform the latest drug advances. There have been three approved drugs for sarcoma in the last decade – key developments largely thanks to patient representations by Sarcoma UK.

Larotrectinib and entrectinib were both approved for use in England and Wales in 2020. These are ‘histology independent drugs’ which target tumours based on their genetic make-up rather than where they are in the body. Trabectedin was approved in 2010 by NICE, and thanks to input from Sarcoma UK, was recently made available for routine use in Scotland.

In 2020, Sarcoma UK’s first parliamentary event offered the chance to showcase our work and put sarcoma firmly on the agenda.

Despite the pandemic, the charity has kept up its public affairs activities, such as virtual MP meetings, webinars and an Early Day Motion in Parliament generating considerable support.

Partnership working remains key, campaigning with others in One Cancer Voice to put cancer patients at the centre of the pandemic recovery plans and the #NeverMoreNeeded campaign calling for more support for charities to keep going.

‘The future is about driving forward the charity’s policy priorities: building on the progress in early diagnosis as well as access to the best possible treatment in specialist sarcoma centres and psychological support for those who need it,’ says Bradley Price.

‘We have a unique opportunity with the current focus on the NHS and pressure on cancer care to raise attention to the issues that have faced sarcoma and other rare cancers for years.’

Download the Sarcoma UK 10 Year Impact Report as a PDF

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