Sarcoma UK’s Annual Review for 2013/14 has some interesting statistics:

• About 3,800 new cases of sarcoma are diagnosed each year in the UK. These represent approximately 1% of all cancer diagnoses
  • 3,330 people are diagnosed with a soft tissue sarcoma (including GIST)
  • 500 people are diagnosed with a bone sarcoma
• In general, patients with a bone or soft tissue sarcoma diagnosis tend to be younger than the majority of cancer patients (* is data for England)
  • 16% of bone or soft tissue sarcomas are diagnosed in patients less than thirty years of age, compared to around 2% of all cancers*
  • 37% of bone or soft tissue sarcoma patients are aged less than 50 years*
  • Sarcomas make up 15% of all childhood cancers (0-14 years)
  • Sarcomas make up 11% of all cancer diagnoses in teenagers and young people (15-24 years)

Sarcoma UK’s goals are:

1. More people will survive sarcoma.
2. More will be known about the causes of sarcoma.
3. Everyone affected by sarcoma will have access to the best treatment and care.

They also proudly say that

For every £1 spent on Fundraising £6.22 was raised.

78% of income was spent on Charitable Activities
(Awareness; Research; Support & Information)

Many of us have lymphoedema as a result of our treatment. Please see the new petition sponsored by the British Lymphology Society asking NHS England to develop a national strategy for lymphoedema so that appropriate treatment becomes available to us all.

Please sign at Save the NHS £100 – for every £1 spent on lymphoedema treatments

Patients who were previously sent to Chelsea and Westminster Hospital and the London Clinic for radiofrequency and microwave ablation (RFA) can now receive this on site at The Royal Marsden, rather than shuttling between hospitals. The machine is used to treat patients with small liver and lung metastases.

For details see The Royal Marsden Magazine – Winter 2014 page 5.

Last night’s The One Show did a piece about RNOH Stanmore. If you haven’t seen the state of the buildings they work in then this will amaze you. I’m pleased that they did say how doctors come from all over the world to see the pioneering work done at RNOH.

You can watch the programme for 30 days here, the RNOH piece starts at 2.13mins: http://www.bbc.co.uk/iplayer/episode/b051qz3s/the-one-show-10022015

Funding for a top hospital

Dear Annette Brooke

I am writing to you about the Royal National Orthopaedic Hospital in Stanmore, Middlesex (RNOH). Clearly this hospital is not in your constituency but, as a specialist hospital, it serves the whole of the South of England and hence your constituents like me.

A couple of years ago I was diagnosed with bone sarcoma which is a very rare form of cancer, less than 0.2% of all cancers. Poole hospital, following NHS guidelines, referred me to RNOH.

Like everyone who first travels to RNOH, I was shocked at the state of the buildings. Well, they aren’t really buildings at all, they are Nissen huts. Yet, as I was to discover, this is one of the best hospitals in the country. Even the taxi drivers say it is outstanding, with stories of visiting consultants from all over the world to learn from RNOH! Every patient that I have met have told me how wonderful the hospital is and, on a feedback form, I crossed out the options of “Poor, Good, Excellent” and substituted “Fantastic”.

The care and the service is out of this world, but it is all delivered in ancient buildings which urgently need replacing.

You may have come across publicity such as a recent headline in The Times,
Top hospital facing closure over its ‘third world’ wards. Some funding was approved for new buildings but is now no longer there and the hospital urgently needs the NHS and Department of Health to stop dithering and sort out the necessary funding.

Could I ask you as an MP to push for decisions to be made as soon as possible so that RNOH can carry on giving the superb service that I have received?

Dr Kate Granger, terminally ill with Sarcoma, has given some interviews to the BBC to publicise her #hellomynameis campaign. We have all seen the insides of too many hospitals so know how important a friendly face is.

• Kate was interviewed on this morning’s Today programme: http://www.bbc.co.uk/programmes/b050zkrm at 52:41 minutes;
• and gave a video interview on BBC News: http://www.bbc.co.uk/news/health-31062042;
• a longer and, in some ways more interesting and personal interview, with Kate Granger on the Jeremy Vine show at http://www.bbc.co.uk/programmes/b050xrjq at 1:40:18;
• in her interview with LBC Kate Granger talks about how patients should be given bad news and preferably not when they are on their own.

RNOH Stanmore, where I go, started #hellomynameis in December, and today has spread to Outpatients. They tweeted:

Everybody’s on board with #hellomynameis in our Stanmore outpatients department @RNOHnhs @GrangerKate

NICE has just published its quality standards and guidance for Sarcoma at http://www.nice.org.uk/guidance/qs78.

There’s a list of 6 quality statements on the website at http://www.nice.org.uk/guidance/qs78/chapter/list-of-quality-statements

Statement 1.  Sarcoma advisory groups and sarcoma multidisciplinary teams (MDTs) have
pathways for referral and diagnosis in place for people with suspected sarcoma.

Statement 2. Adults, children and young people with bone sarcoma and adults with soft tissue  sarcoma have their care plan confirmed by a sarcoma MDT and treatment delivered by services  designated by the sarcoma advisory group.

Statement 3. Sarcoma MDTs publish information about their shared pathways, activity and  patient outcomes, including information on site-specific sarcomas.

Statement 4. People with a retroperitoneal sarcoma are referred before having any treatment to  a sarcoma treatment centre with special expertise in managing this type of tumour.

Statement 5. Surgeons performing planned resections of sarcomas are core or extended
members of a sarcoma MDT.

Statement 6. People with sarcoma are supported by an allocated key worker with specialist  knowledge of sarcomas and their treatment.

© NICE 2015. All rights reserved. Last modified January 2015