Sarcoma South UK Support Group
Support for those living with sarcoma
There’s a Charity Event on 7th February 2015 in the Allendale Centre in Wimborne to raise funds for Cancer Research UK and Poole Hospital Ladybird (Breast Care) Unit.
It features a local band ‘The Alibi’ and a Representative coming from Cancer Research UK to give a short talk during the Band’s break on the importance of self examination and early detection.
For details see Steve Cassidy’s comment on our blog
here and his website Come In Pink
David Haslam, Chair of NICE in his post Risky business: the challenge of being a GP says
Signs of cancer may also not be clear or obvious and GPs see, on average, only around eight new cases a year. A full time GP will have between 6,000-8,000 appointments every year. And they will only have around 10 minutes per appointment to pick out warning signs that could be cancer, but equally may be a symptom of a less serious condition.
Sarcoma UK’s On The Ball campaign is still going to help with diagnosis.
NICE is redrafting its guidelines on suspected cancer. http://www.nice.org.uk/guidance/indevelopment/gid-cgwave0618/consultation. Sarcoma is on pages 272-281 of the Full version. Here are some of the sarcoma guidelines.
See result of consultation: Suspected cancer: recognition and referral
Around 500 new bone sarcomas are diagnosed each year in the UK, meaning that a full time GP is unlikely to diagnose more than one bone sarcoma during their career. It is seen in both sexes, and is one of the commoner cancers in children, teenagers and young people.
Pain and loss of function of the affected limb are thought to be the main presenting 6 symptoms of bone sarcoma. However the rarity of this cancer means there are few studies of its clinical features.
Because of the rarity of bone sarcoma, there is no standard diagnostic pathway for primary care. Plain X-ray may show abnormalities suggestive of the sarcoma.
Consider an urgent direct access X-ray (within 2 weeks) to assess for bone sarcoma in children and young people with unexplained bone swelling or pain. [new 2015]
Consider a suspected cancer pathway referral (for an appointment within 2 weeks) for people if an X-ray suggests the possibility of bone sarcoma. [new 2015]
Just over 3,000 new soft tissue sarcomas are diagnosed each year in the UK. A full time GP is likely to diagnose approximately 1 person with soft tissue sarcoma during their career. They occur in connective tissue, so can occur in many parts of the body. Five year survival is highly dependent on the specific site.
The rarity of this cancer means there are few studies of its clinical features. It is believed that most present with a mass, which may be painless, and may become quite large. The main method of diagnosis is by biopsy, which is performed in secondary care.
Consider an urgent direct access ultrasound scan (within 2 weeks) to assess for soft tissue sarcoma in people with an unexplained lump that is increasing in size. [new 2015]
Consider a suspected cancer pathway referral (for an appointment within 2 weeks) for people if they have ultrasound scan findings that are suggestive of soft tissue sarcoma or if ultrasound findings are uncertain and clinical concern persists. [new 2015]
I went to an event “Supporting Stronger Voices” and event organised by the Dorset Clinical Commissioning Group at AFC Bournemouth.
Event aim. Six monthly forum for patient, carer and lay representatives to provide:
Event objectives.
Presentation by Frances Aviss summarising patient/carer/lay representative feedback followed by short video illustrating areas where service improvements have been made to reflect patient engagement feedback. Some interesting areas of service improvement, but little said about Cancer and End of Life.
Workshop session to try and tease out skills attendees (grouped 5-6 per table on 8 tables) would like but currently lack.
Presentation by Keith Harrison (Patient Public Involvement Development Worker & a PPG Chair) on developing Patient Participation Groups. Interesting; KH facilitates in the North Dorset Locality and currently 7 out of 10 GP practice groups in north Dorset have Patient Participation Groups. His role is to try and encourage the development of new groups for which he has clearly had some success in the last year or so despite various difficulties along the way. Ian Gall ( PPG Chair of GP practice of 9,000 patients in Sturminster Newton area) gave details of his PPG group’s organisation and the way it operates. Probably most important factor, in his view, is to establish a high level of confidence and trust between the GP practice manager and the PPG Chair.
Presentation by Phil Richardson, Programme Director (Transformation) for Dorset’s Clinical Services Review. He described the need for the review and the programme stages.
NHS Dorset CCG is to review the way NHS care is provided in Dorset in order to sustain a high quality of care for people living in the county: it is the first to be done in the country and follows research showing the NHS is facing significant challenges. In Dorset, these challenges include changing population, clinical standards and financial pressures. Dorset CCG is the third largest with a budget of nearly £1bn. There are approx. 100 GP practices involved and a quarter of the population has a long term condition. Dorset scores highly across all benchmarks; the net immigration to Dorset predicted to be 50,000 people by 2012. GPs have had a 20% increase in consultations over the last 2 years (and this is an ongoing trend).
The review is to be undertaken in partnership with GPs, hospitals, local authorities, and the public, and will go through 3 stages:
Stage 1: Design- a review of current services and the creation of a blueprint for future services that will clearly state what changes are proposed.
Stage 2: Consult- a public consultation so people can have their say on any changes proposed.
Stage 3- Implement-delivery of any agreed changes.
Stage 1 (of which this meeting is the pre-amble) will run from October 2014-spring 2015.
He touched upon the role of the consultancy firms appointed for the review: McKinsey would be handling the analysis of a vast amount of public and health professional feedback already in the system as well as new data; Price Waterhouse would be handling the overall project management of the review. PR is anxious to involve/engage the patient /carer/lay representative community, a point reinforced by Frances Aviss who stated that a patient/carer/lay representative engagement team of about 20 people is to be set up to participate in the programme. The team will be chaired/led by Anya de longh who works with the CCG Engagement team. Frances requested that attendees put their names forward if they felt able and willing to contribute to the team. PR, in response to questions/comments from the floor, acknowledged that the programme timescale was very tight and the general election next May could adversely affect the programme.
I would suggest that joining our own GPs Patient Participation Groups is an important way to try to influence the Clinical Commissioning Group and to keep cancer on the agenda.
You can listen to a 20 minute interview with Simon Stevens in last Thursday’s Radio 4 Today programme at http://www.bbc.co.uk/programmes/b04lsqgq which starts about 2 hours 10 minutes into the programme. Towards the end of the interview he mentions the opportunity for improving cancer care with earlier diagnosis.
As part of Cancer Research UK’s “Cross Cancer Out” General Election campaign, if you go to https://www.cancerresearchuk.org it will enable you to email your parliamentary candidates about the need to improve cancer survival in the UK. The site will find the details of your candidates for you and email them, including an optional message from you.
My personal message was:
Sarcoma is a rare form of cancer and is often not spotted early enough by GPs or hospitals with survival rates only 55%. We need to put more resources into early diagnosis.
Message from Cancer Research UK:
Here are details about our ‘Cross Cancer Out’ General Election campaign which we have launched today. Our aim with this campaign is to ensure that tackling cancer is a political priority for all parties. We will be doing a lot of work in the coming months up to the election to raise public support and get these messages across MPs and parliamentary candidates.
The ‘Cross Cancer Out’ campaign will focus on a number of key commitments aimed at improving cancer survival in the UK including:
- Equal access to innovative radiotherapy, surgery and effective cancer drugs, including drugs targeted to patients’ tumours;
- Continued support for campaigns to raise public awareness of the signs and symptoms of cancer;
- A commitment to increase participation in the national bowel cancer screening programme.
As you can see, access to treatments – including improving radiotherapy – features strongly in the campaign.
Further information and actions can be found on the website: https://www.cancerresearchuk.org
If you missed Channel 4 News report about how fibroid treatment can spread uterine sarcoma then you can read Victoria Macdonald’s blog of her investigation and watch the news item at
US warns against womb surgery tool – why is it still in use here?
Last week I went to the Cancer Research UK (CRUK) Southampton Centre at the Somers Cancer Research Building at Southampton General Hospital to a meeting that CRUK had arranged to inform patients and carers about their new research strategy “Beating Cancer Sooner”. Have a look at their strategy
http://www.cancerresearchuk.org/sites/default/files/cruk_research_strategy.pdf
CRUK also want to train volunteers to be a Cancer Research UK Ambassadors. Cancer Campaigns is the team at CRUK responsible for political campaigning. “Our Ambassadors are a group of especially engaged and motivated supporters who help us work to translate our research discoveries into lifesaving initiatives. As an Ambassador you will use your passion and knowledge to represent CRUK when meeting face to face with your politicians and the local media for support of our campaigns”
https://www.cancerresearchuk.org/get-involved/volunteer/become-a-campaigns-ambassador
Last week I went to a Steering Group meeting of the new Dorset Cancer Patient Group which is in the process of being established with the support of Macmillan and local hospital trusts and oncologists.
Before the dissolution of the Dorset Cancer Network (DCN) there was an active and successful Patient Partnership Panel whose aim was to improve cancer services locally. They were trained and supported by the DCN and attended meetings as cancer patent representatives, were involved in a wide variety of projects including improving chemotherapy and radiotherapy services and being involved in Peer Review.
A few of these panel members kept meeting without any support as they did not want to lose the expertise that had been earned. Recently with the establishment of the new Dorset Cancer Alliance and its support, the new Dorset Cancer Patient Group is going to be launched soon.
At the moment we are working hard on designing leaflets and posters to publicise the group and recruit new members and let health care workers know that wanting to continue with our work to improve cancer services in Dorset. Watch this space for more information.