man at desk
Monday, October 22, 2018

If you are a sarcoma patient or have been affected by sarcoma, you have until 11 December to make your voice heard and help improve the way sarcoma is treated.

NHS England want to change how sarcoma is treated. Before they make changes, they want to hear from people affected by sarcoma. You can tell them what you think of their proposals by taking part in this consultation.

The more people who respond to NHS England’s consultation, the sooner they will make changes

You do not have to be in England to take part in the survey.

Sarcoma UK supports the proposed changes and is submitting its own views and suggestions to NHS England. We need you to do the same. The core principles of the changes focus on making sure sarcoma patients get access to the best care, treatment and access to clinical trials, by:

  • Commissioning services to help make sure that all sarcoma patients are referred for treatment at a specialist sarcoma centre, where we know outcomes are better for patients.
  • Ensuring the pathways for patients to reach specialist sarcoma centres are clearly defined.
  • Ensuring sarcoma patients treated by other teams, such as children, teenagers and young adults or those living with gynaecological cancers, will also be discussed by sarcoma multi-disciplinary teams (MDT) and recorded as such.
  • Having patients with gastrointestinal stromal tumours (GIST) or retroperitoneal sarcoma (RPS) operated on by teams with the expertise and infrastructure for these patients.


What do I need to do?

Complete the consultation survey.

You can read the full draft service specification from NHS England here as well.

Tell friends and family about this and encourage them to complete the survey too.

The more people affected by sarcoma who complete the survey, the more likely that change for the better will happen.

Why is this so important?

We see this as a real chance to get sarcoma further up the NHS ladder. We are encouraged by the things the NHS has picked up in the draft sarcoma service specification. It’s a good a sign that the NHS recognises that things need to change to be able to give patients access to the best care. Here’s a little more as to why:

Being seen in a Specialist Centre

As per the NICE guidelines for sarcoma, patients seen in a sarcoma specialist centre and discussed at a sarcoma MDT will get the best care and treatment by an expert team. The ways in which sarcoma patients reach the correct specialist centre will be clarified.

Gynaecological cancers

Having patients with gynaecological sarcoma managed by both gynaecological and sarcoma MDTs, is important and something Sarcoma UK has been campaigning for since 2014.

Data gives us the fuller picture

Our data project work last year highlighted how important having complete up-to-date, reliable sarcoma data is. Having better coding and recording of sarcoma patient data means NHS England know the right patients are being seen by the right teams for their sarcoma treatment.

High volume centres

Being treated at a sarcoma specialist centre means knowing the right people, with the right expertise and experience are the ones caring for you. It makes sense therefore that GIST or RPS patients are treated at centres that see a high number of these operations and have the necessary infrastructure to support patients. Our 2015 National Sarcoma Survey showed that nine in ten patients didn’t mind travelling further to receive the best care.

Make change happen faster. Complete the online survey. This closes on 11 December 2018.