Sarcoma South UK Support Group
Support for those living with sarcoma
Some links:
2014 National Cancer Patient Experience Survey website
2014 National Cancer Patient Experience Survey National Report
Individual hospital trust reports for our region that surveyed sarcoma patients:
The Royal Marsden NHS Foundation Trust
Royal National Orthopaedic Hospital NHS Trust
The surveys for Bournemouth and Southampton Hospitals didn’t include responses from sarcoma patients.
The Nursing Times has published the following quotes from the 2014 National Cancer Patient Experience Survey
… there were also plenty of encouraging results, with more patients than ever (89%) reporting they had been given the name of a clinical nurse specialist (CNS) – up from 88% the previous year and 84% in 2010.
Ninety-one per cent said their CNS “definitely” listened carefully to them when they last spoke and that they got understandable answers to questions all or most of the time.
A key finding overall was the importance that patients placed on having access to a specialist nurse.
“At all cancers level, and for each of the 13 tumour groups, the results showed that the factor with the strongest association with high patient scores in the survey was always the presence of a clinical nurse specialist,” said the report on the survey results.
Clinical Oncology journal has published a paper titled
Comfort Blanket or Clinical Need? The Role of Follow-up for Cancer Survivors
detailing responses to a questionnaire devised by the Independent Cancer Patients’ Voice and National Cancer Research Institute Consumer Liaison Group last February.
Having completed the questionnaire, I wrote to Sarcoma UK saying that
Q16 There is increasing evidence to suggest that regular routine follow-up is of little benefit to some cancer patients. Many are now being discharged back to GPs after their primary treatment (eg surgery, radiotherapy and chemotherapy), but with rapid access to appropriate healthcare professional if/when needed.
is worrying and not applicable to sarcoma patients. In a very informative response, Sarcoma UK agreed with me saying that the questionnaire is more applicable to breast cancer patients and reassured me that it wasn’t applicable to sarcoma patients.
The paper has a section on GP follow-up and, whilst only 5% of patients had experience of this, nearly 50% say it isn’t a good model. This response
I can’t state strongly enough that I think this is not a good direction. General practitioners have little knowledge about cancer except the basics in my experience and it is frightening to think that this might be the way things go.
is precisely what I was thinking.
The paper is an interesting read and has no medical jargon so is easy to follow. A PDF download is available on the site which may be easier to read and print.
Cancer Research UK has a vast array of statistics for all types of cancers at http://www.cancerresearchuk.org/cancer-info/cancerstats/
Sarcoma has two sections of its own
More detail can be found in Bone sarcoma statistics
2. Soft tissue sarcoma statistics
More detail can be found in Soft tissue sarcoma statistics
The Liddy Shriver Sarcoma Initiative at http://sarcomahelp.org/ has lots of useful information. They have produced this excellent poster:
Are you a patient (or carer) with the Royal Marsden and would like to get involved with an active role in shaping the Trust’s future research projects?
Dr Natalie Pattison, Trust Lead for Patient and Public Involvement, explains that it’s important to hear the views of the people the research will potentially affect, to ensure the patient is at the heart of the decision-making process: “This is about empowering individuals and communities so that they can play a greater role in shaping healthcare research.
“Patient and public involvement helps us identify what’s important to patients and the public, and how we can improve the way we run clinical trials.”
The panel was set up in 2011 and has already improved research projects being carried out at The Royal Marsden. The panel of up to 20 people meets four times a year to discuss research ideas presented by investigators and to discuss priorities. They also undertake email reviews of documents to make patient information more comprehensible for laypeople.
They are currently looking for people to join the panel. I have been a member of the panel since it was started and it is a fascinating experience and it’s a way I feel I can give something back for all the care and expertise I have been lucky enough to receive from the Royal Marsden.
The Royal Marsden, treating soft-tissue sarcomas, and University College Hospital and Royal National Orthopaedic Hospital, treating both bone and soft-tissue sarcomas [1], form the London and South East Sarcoma Network. They have recently published detailed guidelines for treatment and follow-up procedures.
They show what should happen, in detail, for each sarcoma subtype and these guidelines are worth reading.
This will give you the information you need to see how your treatment should progress in any hospital, not just the three author hospitals.
The guidelines can be downloaded at http://www.lsesn.nhs.uk/guidelines.html.
[1] Description taken from London and South East Sarcoma Network home page.
Very interesting programme on Radio 4 Word of Mouth this week –
Chris Ledgard investigates three situations where the precise use of words is crucial. He speaks to a cancer specialist and a woman in remission from the disease about the language of diagnosis and prognosis. How do doctors balance the need to be sensitive with the need to be accurate? Is the word cancer itself still one that people prefer not to use? ……….
and you can listen again here: http://www.bbc.co.uk/programmes/b04980f3
Understanding the New NHS is a new guide to the NHS which may help in trying to understand how it works following all the reorganisation.
Tricia
So pleased to receive this email from another member of our support group about feedback from the “On the Ball” campaign.
“I did apply for ‘Sarcoma Golf Ball’ pack, which I took to our local GP surgery. I decided instead of making an appt. I would attach a short personal note explaining our interest. One never knows what is the best thing to do.
Anyway today, I had a telephone call from one of the Doctors at our Surgery, who was phoning on behalf of all the Doctors, who wanted to find out our story, and also to confirm that whilst it may still never be the first thing they look for in a diagnosis, it would be the second. Great news!
Hope everyone else has had such positive feedback from the ‘golf ball’ .“
This is the second support group member who has received a phone call from a GP in response to receiving the “On the Ball” pack. This is so encouraging!
Tricia