An archive of the weekly digests can be found in the Newsletter Archive.
On The Ball Packs
My GP has responded very positively to the On The Ball packs I gave him and will be passing them on to other health professionals in the practice. He will also welcome our support group leaflets.
So if you haven’t done so yet please give your GP a pack or two. Tricia has some spare ones or you can order them directly from Sarcoma UK at http://sarcoma.org.uk/Awareness/ontheball.
Older People’s Advocacy Alliance
OPAAL and Macmillan Cancer Support want to make sure that older people are supported and enabled to exercise their right, express their views, explore and make informed choices about their care. Yesterday I met two of their volunteers who work with cancer patients in Dorset. I didn’t know anything about this organisation and was very impressed by them and their organisation which is supported by Macmillan.
OPAAL’s new Cancer, Older People and Advocacy project publication “Every Step of the Way“: 13 stories illustrating the difference that independent advocacy makes to older people affected by cancer was launched on March 25th 2014.
Learning Opportunity: Cancer Course
Future Learn https://www.futurelearn.com
There is one that seems particularly relevant Cancer in the 21st Century, devised by the University of Glasgow, it starts in September.
Tricia
Clinical Research Network: Wessex Launch Event
Went to the launch event of the Clinical Research Network Wessex on 5th June in Basingstoke. There were speakers from the National Institute for Health Research, Southampton University and Portsmouth Hospitals and there are research trials in many areas of health, not just cancer.
Wessex is third in the Top Ten of Networks in England with the greatest of number of trials. In 2001 only 4% cancer patients were recruited into clinical trials and in 2013/14 it has risen to 20%. Rarer cancers are described as “orphan” cancers as it is more difficult to open and recruit patients to trials. The aim is to enable more patients to enter trials. The quality of research trials is among the best in the world but there is more work to be done.
If you are a cancer patient or carer and would like to become involved in the Cancer Research Partnership Group based at Southampton Hospital please contact
Jac Samuel Cancer Research UK senior research nurse
The Cancer Research Partnership Group helps refine cancer research activities, raise awareness of trials and support research through advocacy and engagement, making a valued contribution to all areas of cancer research across the South Coast.
Facts for my GP
Some of the things I will be telling my GP to go with the On The Ball pack:
- Sarcoma UK are worried that recognition of sarcoma is not as good as it could be. This is because sarcoma is so rare (less than 1% of all cancers in England) and sometimes quite difficult to diagnose. Unfortunately the survival rate is only 55% and the aim is to dramatically increase that.
- A recent report from Cancer52 on National Cancer Intelligence Network data shows that the survival rate for soft tissue sarcoma is 98% if the GP refers a patient within a month.
- Statistically speaking, a GP is not likely to see more than one patient with sarcoma in their career lifetime making diagnosis that much more difficult.
New Patient Story
This is a new page with a patient’s experience of the importance of seeing the right oncologist and her talk to the All Party Parliamentary Group on Cancer.
On The Ball Campaign
Sarcoma UK have announced that they will be carrying on sending out On The Ball packs throughout the year, with the next batch going out in the week beginning 21st July. So you can still order a pack, or even more packs, from Sarcoma UK at http://sarcoma.org.uk/Awareness/ontheball.
They have sent out over 750 packs so far.
Tea Party
We had a great tea party last Saturday as part of Sarcoma Awareness Week.
You can see more photos at Sarcoma Awareness Week.
Two appalling numbers
As part of their On the Ball campaign, Sarcoma UK has tweeted two astonishing statistics:
- Only one in four of sarcoma referrals are to a specialist centre.
- Sarcoma patients wait on average 1½ years for referral.
I find those numbers terrifying and so I applaud Sarcoma UK’s efforts to dramatically improve them. In their strategy for 2014 – 2020 Transforming the landscape for sarcoma they have two targets to deal with this:
- 100% of people diagnosed with sarcoma will be treated under the care of a sarcoma multi-disciplinary team (compared to only 60% in 2013) (page 19).
- 80% of people with suspected sarcoma will be referred to hospital for further investigations on their first or second visit to their GP (compared to 2013 where one third of sarcoma patients visit their GP three times or more before referral) (page 15).