Sarcoma UK State of the Nation Review | Sarcoma UK
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Sarcoma UK State of the Nation Review

Help improve NHS sarcoma services

Sarcoma UK is gathering views on NHS sarcoma care across the UK. Your experiences are crucial in shaping future improvements. This will help us to better understand how well the NHS is doing and what it needs to improve.

Who can take part?

  • People who have or have had sarcoma
  • Family members or carers of someone with sarcoma

Will you be seeking any other views or evidence?

Yes, we will be asking people and organisations in the following groups to respond to questions in our Call for Evidence about sarcoma care:

We invite people who work in the NHS and researchers to submit responses. You can access the questions here. This will download a Word document to your device.

We will also be asking governments and the NHS in England, Scotland, Wales and Northern Ireland, as well as charities, to send us their responses in writing.

What will we ask?

Questions cover various aspects of sarcoma care, including:

  • GP visits
  • Diagnosis
  • Treatment
  • Follow-up care

How will we use your information?

Your responses will:

  • Be combined with other feedback and evidence
  • Help create a comprehensive report on sarcoma care
  • Inform the recommendations of the report and allow us to tell governments and the NHS in England, Scotland, Wales and Northern Ireland, what is good about sarcoma care and what needs to improve, helping to ensure that everyone with sarcoma receives the best care possible.

Survey details

  • Answer only questions you’re comfortable with
  • All information is treated anonymously
  • You have the option to consent for interviews or future Sarcoma UK initiatives

Need support?

We understand that sharing personal experiences related to sarcoma can be sensitive and potentially upsetting. If you need support, please consider reaching out to the following organisations.

Sarcoma UK Support Line: 0808 801 0401
Samaritans: Call 116 123, available 24/7.
Mind: Call 0300 123 3393 for mental health support and information.

The questionnaire is open until 2 December 2024. Your input can make a real difference.

Please tell us about yourself or the person you have been a carer for, to help us understand your (their) situation

Being diagnosed with sarcoma

Treatment for sarcoma

• Genomic testing is sometimes useful in helping to diagnose sarcomas and identify appropriate treatment options. There are two types of genomic testing, which either (a) look at all your genes or DNA, called Whole Genome Sequencing, or (b) a specific set of a genes, which is called Panel Sequencing.

Follow up care and support

Your (their) overall experience of NHS sarcoma care

Finally…

(A) Would you like to consent to being contacted about an interview to tell us more about your experience of sarcoma care?
If yes, please leave your contact details below. We will use your details only to contact you about this questionnaire.
(B) Sarcoma UK is currently working to a five-year plan for our work as a charity between 2021-26. We will soon begin to develop our plan for the next five-years. Would you like to consent to being contacted to give your views about our future work and plans for the next five years?
If yes, please leave your contact details below.
Name (optional)
Email (optional)

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