Minutes of the Patients Forum meeting held at the Royal College of Physicians on 12^th January 2005  

 

Present: Jonathan Ellis – Chair (Help the Aged); Marlene Winfield (National Programme for IT); Liz Thomas (AvMA); Brian McGinnis (L’Arche – UK);  Judith Wardle (Continence Foundation); Gerda Loosemore-Reppen (Sign); Geraldine M. Amos (Home from Hospital Care); Gerry Mahaffey (Princess Royal Trust  for Carers); Carol Herrity (Royal  Mencap); Catriona Moore (LMCA); Philip Hurst (Age Concern England); Libby Halford (Childhood Eye Cancer Trust); Kerry Williams (Rethink);  Diana Basterfield – In attendance  ( Patients Forum )

Apologies:    Angeline Burke (NMC); Marianne Rigge (Independent Consultant); Eileen Neilson (Royal Pharmaceutical Society UK )

Speakers:  Alison Cahn & Jose King: leads, Healthcare Commission patient and public engagement in Assessment for Improvement consultation      

 (See appendix)

 Minutes of last meeting held on 10^th November 2004  

No matters arising  

Chair’s report  

• Reminder that people wishing to attend the Patients Forum Conference on 22^nd February should register on the Patients Forum website.

• Change of name for the Patients Forum .  Given the confusion with Patients Forum s – even though the full name is Patient and Public Involvement Forums – the Management Committee had decided to consult members on this.   An email would be circulated shortly asking whether the name should be changed or not.    This would be a two stage process.  First asking whether the name should be changed.  If the majority response was for a name change, then alternatives would be solicited from members to be later put to the vote. 

Management Committee Minutes of 14^th October 2004  

There were no questions or comments.  

Information Exchange  

Kerry Williams (Rethink): It was reported at the last meeting that a new Research Department had been set up at Rethink.   One of the projects they had begun to develop was working with a charity called No Panic, working with people with anxiety disorders, obsessive compulsive disorders and other related anxieties.   Rethink were looking at some of their telephone conferencing groups, evaluating them and looking at the impact they had on the patient pathways of patients with anxiety disorders.  Information was available about this on their website.

Libby Halford (Childhood Eye Cancer Trust) – formerly the Retinoblastoma Society: It was reported that they were trying to move the charity on and develop jt many different ways.   Of most concern at the moment was a review of the paediatric oncology services for London and the South East and out of that had come a recommendation that one of their treatment centres, currently at the Royal London – should be moved to Great Ormond Street .   It was proving quite challenging to put together a package of care for their children and families in London .  

Philip Hurst (Age Concern England ):   It was reported that the biggest thing they were working on at the moment was the enquiry into mental health and well-being in later life that they were doing jointly with the Mental Health Foundation.  They had just got to the point of having received lots of evidence from the first stage of the enquiry, lots from individual older people and also from organisations, and this was being analysed now.  They would be doing some focus groups with older people both to address those they had not been able to get to through the call for evidence but also to start to think about the solutions that older people might be suggesting to some of the issues raised.    The first report would be about positive mental health and well-being for the whole population of older people.  This would come out later in the year. The second phase would be about the prevention of problems and the provision of services for people either with or at risk of mental ill health.  It was also reported that they were working on end of life issues for older people, particularly provision of palliative care in a range of settings and for a range of diagnoses;  this appeared to be gaining some momentum now.  There was also the theme of choice for older people, both about the choice of healthcare provider and, within the context of public health and healthy life-styles, what choice could mean and some of the barriers.  

Carol Herrity (Royal Mencap Society):    It was reported that some of the key points made in their response to the GMC consultation on the good medical practice booklet included the importance of recognising the patient as an equal partner with different but equal expertise.  Carol had been challenged by the doctor in the workshop she attended who felt that this was not a realistic expection and gave the example of someone who had been brought in after a heart attack.  How could this person be treated as an equal partner and asked what their objectives were for their healthcare if they were unconscious in A & E? This suggested a deep lack of understanding and was disappointing.  Carol’s reply had been a point she had picked up from Brian McGinnis on a previous occasion which was about treating each patient and their circumstances as an individual and therefore there is a response to that patient in those circumstances in a way that was appropriate.   It was also reported that a second contribution to that consultation had been a question:  When talking about partnership with patients - when does trust replace information?

Gerda Loosemore-Reppen (Sign):  It was reported that Sign was organising a conference also on 22^nd February (so clashing with the Patients Forum conference) where a report would be released on a project that looked at people’s experience in the workplace. It was called “Reaching deaf minds in the workplace.” It had been a small project but very in-depth;  about twelve people had been interviewed about their fears, aspirations and experiences at work and a lot of mental health issues had come out which would be revealed at the conference.  

Judith Wardle (Continence Foundation):  It was reported that a lot of Judith’s work in the last few years had been about trying to foster the development of integrated continence services, which meant not only from primary through to tertiary but also relating to Social Services and Education and making sure that learning disability and mental health was included.  Judith was looking for anybody who had outcome measures and data on outcomes for what could be achieved by creating integrated services of this kind in any other health field.   This did not yet exist in the continence field because nobody had yet succeeded in doing it.   

Brian McGinnis (L’Arche – UK ):  Three items were reported:   (a) a footnote on the primary care meeting. It was considered that some irreconcilable issues were being run together – the myth of the local GP who knows their patient and knows the family and therefore provides a holistic service for the patient based on a personal relationship and along with this was the highly specialist service which was taking over a lot of the responsibilities of secondary care. These two themes were being run side by side in a way that Brian did not find at all convincing.   (b)   The TUC had done something useful and produced the previous week a note on ‘Sick note Britain – countering an urban legend’. This was a very useful paper on what actually happened with sickness absence, incapacity benefit, income support and so on.   It showed the real figures which would never get into the Daily Mail and seldom escaped the Government’s lips.   It showed the real causes of incapacity including the reality of stress.    It was easy if one hadn’t had stress to think it was just an excuse for not going to work.  There was some really good information in this report and it is on the TUC website.   (c)  Brian represents the Patients Forum on the Royal College of Physicians Patient Carer Network and although one could doubt the value of these involvement exercises, it had been quite striking that the various members of that network had been really influential in the responses going from the Royal College to government etc. Brian said: “It is a powerful partnership when there is a Royal College, which the Government do not like very much and patient groups, which it says it likes but doesn’t either, talking side by side to the same effect on the same subject.  It is a really powerful combination.  One side can be discounted, the other side can be discounted but if both are saying the same thing, it really counts for something.”  

Liz Thomas (AvMA):  It was reported that they were concerned about the whole PPI agenda and the damage that had been done due to the way it had been set up so far.  It was considered that Patients Forum s had been set up to fail with the lack of staffing.   With particular interest from AvMA’s point of view was the issue of patient safety and how patients had been largely excluded from that agenda. This was somewhat strange since patients had set the patient safety agenda by saying they wanted to prevent it happening again. This was particularly the case in relation to complaints in the way that ICAS had been set out and separated from the NHS.  The patient complainant voice had been, to a large extent, silenced in terms of feeding back into the system.   This would be a serious issue for AvMA this year as they wished to have a direct link between those who supported patients making complaints and bringing this back into the Health Service in the way that the best CHC examples did.      It was also reported that over the previous six months they had been setting up a network of medical accident support groups so that they could share and support one another with a view to having conferences, workshops. Information exchange and also on campaigning issues.  

Marlene Winfield (National Programme for IT):  It was reported that they were gearing up towards the end of the year for the first national care records for people actually involved in treating patients to share very basic information within a local health community about a few patients, their allergies, their medications and their contact information.  Preceding that they were going to begin a public information campaign backed up by some national publicity through articles and a big campaign within the NHS to let them know so that when patients came to them they would be able to respond appropriately and help people to make information sharing decisions.   It was also reported that they were on the verge of providing a search engine for patients for all NHS websites – a kind of ‘health Google’ – to help people get information from the many NHS websites.  They were also looking at a ‘decision aid’ for patients when they were making treatment decisions.     Lastly, they were doing a small piece of research with a surgery in South London where patients had had access to their paper records for twenty years and their electronic record for about 18 months. They were doing some interviews with patients about how they actually used the health information and what they did with their health records, so that as the patient version of the health record came out -  which should be available by 2007/8 -  it was understood what patients would want to do with it.  This information would assist in designing it in a way that enabled members of the public to actually do the things they want to do with it.   

Jonathan Ellis (Help the Aged):    It was reported that as one of the Disaster Emergencies charities, they had been operating to full capacity on the Tsunami disaster.  At the same time they had been looking at the opportunities and barriers to using the Human Rights Act and the human rights approach to secure, particularly older people’s access, to health and care services.  By the time of the next meeting in mid March they would have some new research into podiatry services and the implications of the withdrawal of the NHS from these services, what would happen to the people and what was the actual cost of podiatry services to the NHS.    

Date of next meeting  

Wednesday 16^th March  

Patients Forum conference – 22^nd February