Sarcoma South UK Support Group
Support for those living with sarcoma
The new National Cancer Strategy for 2015 – 20 has been released and you can read all about it http://www.cancerresearchuk.org/about-us/cancer-taskforce
I was disappointed that I couldn’t find much about rarer cancers. On page 50 there is a section about the importance of support groups.
Tricia
Last week I met Mandy Sydenham a radiographer from Poole Hospital
Radiotherapy department and they are starting up a support group for patients
who have had radiotherapy. They recognise that many patients are having long
term toxicities and they want to offer support and help, but it’s also for
patients who have finished radiotherapy recently and may be having short term
side effects.
The group will be on the second Monday of every month from 2 – 4
pm at The Grove hotel, 2 Grove Rd, Bournemouth BH1 3AU (01202 552233)
They haven’t got any leaflets about the group yet as it is so new – their first meeting is on 8th June 2015.
Tricia
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.
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”
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.
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.
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