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MINUTES OF THE PATIENTS FORUM MEETING HELD ON WEDNESDAY 16^TH JULY AT CONSUMERS’ ASSOCIATION

Present: Jonathan Ellis – Chair (Help the Aged); Gerda Loosemore-Reppen (Sign); Karen Thomson (Diabetes UK); Angeline Burke (Nursing and Midwifery Council); Sally Gordon-Boyd (RSM); Janice Kent (reMEmember); Carole Myer (Royal College of Paediatrics and Child Health – Patients and Carers Group); Sheila Dane (LMCA); Marlene Winfield (NHS Information Authority); Saranjit Sihota (National Consumer Council); Toto Gronlund (NHS Information Authority); Judith Wardle (Continence Foundation).  Diana Basterfield – Patients Forum (in attendance)

Apologies:  Sonia Home (Retinoblastoma Society); Niki Joule (Neurological Society); Roger Steel (Involve); Mike Took (Rethink); David Pickersgill (BMA)

Speaker: Cllr.David Whiting, Chair of Lewisham Health Scrutiny Panel: Scrutiny Committees.  Please see appendix.

Minutes of last meeting 

The Minutes of the meeting held on 22^nd May 2003 were agreed.  Matters arising would be brought up under the Chair’s report. 

Chair’s report 

• Charity Commission

It was reported that the Patients Forum had an application pending with the Charity Commission.  A list of questions had been received from the Commission relating to some of the detail of the application and a reply to these had been sent.  It was hoped that it would not be too long before a decision was reached. 

·        Fundraising 

It was reported that the Management Committee, with Karen Thomson’s lead, was developing a fundraising strategy for the Patients Forum. 

·        Patient Choice  

It was reported that following the presentation and discussion at the seminar in April with Rob Thompson from the Department of Health, the Management Committee presented some thoughts on how the Patients Forum might contribute towards the development of the work around patient choice in conjunction with the Department.   John Reid would very soon make an announcement around choice at six months and choice at referral, setting the scene for the development of choice over the next few years.   Some of the members of the Management Committee had a meeting with Bob Ricketts, Head of Capacity and Choice, at the Department to discuss some of the issues around patient choice.   The Patients Forum had offered to hold another seminar in the autumn with key people from the Department to begin to tease out some of the issues in the light of the Guidance.  Once dates were available for that discussion they would be circulated to members.   

At this point Marlene Winfield proposed that the Patients Forum could collect stories from patients about their experience of Patient Choice.  

A comment was also made about CHI’s recent consultation exercise and a further suggestion was made to the meeting that the voluntary sector could sell their expertise to DH on how to communicate better with patients and patient groups. 

·        Clinical Negligence 

The meeting was asked if there would be interest if the Patients Forum organised a seminar on Clinical Negligence.  The answer was affirmative and it was agreed that it should be held before the end of the consultation on October 17^th.  

Information Exchange 

Sally Gordon-Boyd (Royal Society of Medicine):  It was reported that the RSM was still trying to make progress on listening to people as part of their task of educating.    They hoped to make more effort to bring people in and to have some idea of what people were wanting.   

Angeline Burke (Nursing and Midwifery Council):   It was reported that Angeline was attending the meeting in her new role as the Consultation and Public Involvement Officer at NMC and would like to meet with members of the Patients Forum and receive suggestions as to how the NMC could better involve the public and patients.  

Karen Thomson (Diabetes UK):  It was reported that diabetes UK was in the process of restructuring to have a more local focus following on from the NSF and in order to support the implementation of the NSF.  As part of that Karen would be changing roles and would become a User Involvement Manager.  She would still attend the Patients Forum meetings but would wear a different hat. 

Gerda Loosemore-Reppen (Sign):  It was reported that Gerda was now representing Sign at the meetings (not RNID as formerly) as an independent adviser.  Sign were doing a public awareness and health promotion campaign to do with deaf awareness and better access to the NHS.   The website lists examples of good practice (and bad practice as well) with a view to improving what happens to deaf people who need health services.  

Judith Wardle (Continence Foundation):  It was reported that their two key activities were mentioned in the latest Patients Forum Newsletter – Continence Awareness Week in September and their Conference in November.  As an adjunct to the work they were doing on trying to help other people create integrated services, working with the Royal College of Nurses  they had produced a disk with all the strategic information that would be needed in order to create a local, integrated service. The reason for the disk was so that people would be able to fill in their local information, population profiles etc  There was also some accompanying paperwork with examples of good practice and examples of bids for getting money.  This disk was available free and those interested in obtaining a copy should contact CF.   

Saranjit Sihota (National Consumer Council): It was reported that NCC had launched its report on healthcare charges, looking at prescription charges and dental and optical charges.  Following on from that NCC would be looking to organise a seminar/discussion around September with a lot of the organisations that supported their work.   It was also reported that NCC was in the process of negotiating a piece of work with CHI to evaluate CHI’s patient and public involvement strategy and see how it was working.  It was hoped to be possible to come back to the Patients Forum for feedback about members’ involvement with CHI and their experiences, negative and positive, for their own development. This would be an opportunity for people to say what they thought about CHI.    

Marlene Winfield (NHS Information Authority):  It was reported that they had just finished, with the Consumers’ Association, some qualitative and quantitative research on people’s views of the integrated care record, the electronic record, and the changes they want to see, and their priorities for all  of the kinds of things that the National Programme for IT was doing.   NHSIA were using that to inform the prioritising of the way they delivered things.  The results would be published with a full report by the NHSIA and by an article in ‘Health Which’ in October.    It was also reported that NHSIA was setting up a public advisory group for the national programme for IT following on from some work that a patient advisory group had done for them on looking at the basic health record that would circulate about people, and what should be in it.  The first plan was drawn up by a group of clinicians and then this group, composed of around twelve patient groups that met at different times, amended it quite well and seriously.  On the basis of how useful that was, NHSIA wanted to set up a formal group and they would be approaching people.   At the moment they were negotiating a formal patient payment policy with DH.  The People Like Us Group, which was a patient and public involvement group, people from a number of statutory groups, would be  meeting soon to discuss having a common payment policy across groups.   Marlene suggested that it would be very helpful if the the Patients Forum  were to come up with a payment policy.    It was also reported that Marlene was doing the public engagement work for the National Programme for IT as well as the NHSIA and they were in the process of drawing up an engagement strategy.       Their Public Reference Group had just been reviewed by the National Consumer Council and they would be getting the bad news soon.  They were about to undertake an audit of all of the parts of the NHSIA – how they involved patients and the public – to contribute to their strategy.   Finally, it was reported that Marlene would like to get Richard Granger, the Head of the National Programme for IT in the NHS out to talk to some patient groups. He was keen to do this.  She requested that any members having a big meeting, e.g. an AGM, that they would like Richard Granger to address, to get in touch with her.  

Sheila Dane (LMCA):  It was reported that they now had a secondee from DH who was there to lead consultation for the NSF for Long-Term Conditions.  This would be consultation with patient and voluntary groups and with people with long-term conditions.   There would be a meeting on 15^th or 16^th September (depending on when Stephen Ladyman was available) that would be a focus and there would be workshops to feed back views into the reference group working on the standards.   The secondee would also be going out to meet with groups, including hard to reach groups.   

Carole Myer (Royal College of Paediatrics and Child Health – Patient Group).  It was reported that the  Royal College had passed a motion at its AGM that it should look very carefully at children’s rights in its work and also involve children and young people as far as it could in the work of the College. That had become part of the Patients Group remit and they had just completed a small pilot on body piercing.  The RCPCH had produced a statement on body piercing and it was felt that it had been somewhat fierce and so it had remained on a shelf for a while.  The Patient Group decided to seek young people’s views on body piercing and the pilot involved one of the professional members of the Patients Group working with a group of young people in Sunderland.  They had come up with very similar findings to those of the RCPCH and had now produced an amazing leaflet which they would pilot in a small way to see what their contemporaries thought of what they had produced.   This was a small step to see whether the RCPCH could consult children and young people and involve them when they were looking at issues.  

Janice Kent (reMEmber – the Chronic Fatigue Society). It was reported that in a bulletin from the DH  £8.5 million had been released for CFS/ME services over the coming two years.    The funding would be online from April 2004.  Guidance on the bids would be out at the end of July and bids would have to be in by October.  Due to reMEmber’s campaigning, Mid Sussex Primary Care Trust had agreed to be the commissioning PCT for a Sussex-wide Chronic Fatigue Syndrome service.  It was also reported that they had an alliance of the Sussex independent support groups.  These support groups were led by healthcare professionals.  There had been a meeting in June with the PCT attended by thirty people from around Sussex who they were representing.   Remember was not connected with Action for ME or the ME Association – these were not healthcare professionals – but reMEmber’s groups were!   They had taken the initiative and were doing very well.   They were hoping to have a strong domiciliary service.  They had asked for four clinical nurse specialists – although this was a drop in the ocean in Sussex.  One per PCT was more like the number needed and there were ten PCTs.  They had asked for a peripatetic service with Worthing, Brighton, Hastings and Haywards Heath so they could draw in from the area as lots of patients were too unwell to travel too far.  

 Date of next meetings    

 AGM on 4^th September
12^th November   

________________________________________________________________________________ 

Appendix

Health Scrutiny Committees - Lewisham’s Approach

Cllr. David Whiting, Chair of Health Scrutiny Panel (2001), London Borough of
 Lewisham

Lewisham’s pilot Health Scrutiny Panel carried out its work in 2001.  They used a dual approach - the scrutiny of single issue items and themed reviews. Under single issue items were strategic priorities for the PCT; the development & implementation of the HIMP; mental health services - implementation of NSF & services for BEM groups; the implications for Lewisham PCT of the Priorities & Planning Framework and the implementation of the Pilot Health Scrutiny Panel’s recommendations.   

There had been two themed reviews, one relating to preventative services for older people and the other in relation to services for children under 8 with special needs.    They had found it important that the theme chosen was a policy area in need of clarity rather than performance review, one not covered by any other reviews and a manageable topic. It was also necessary for it to be an area where improvement was needed and where the improvement would have an impact. Additionally, the theme needed to focus on both council and health services. 

Taking services for children under 8 with special needs as an example, this had worked well and had some interesting effects.    Lewisham was providing a forum, chaired by councillors, and they had done a lot of work on how to run a Scrutiny Committee.  Parents would give evidence as well as health professionals and they would listen to one another. They were not in dialogue with one another and so were not able to talk over one another.  It proved to be a valuable forum for both sides and both sides discovered from one another what really went on.     Another benefit was that Lewisham Council was able to provide input to the HIMP.  An Officer had now been appointed to co-ordinate across children’s services; work was being done on how to make paperwork easier and through that Committee they were beginning to get some sense of the need for local communities to be taken on board. 

Lewisham’s approach was to involve health partners early in the planning stage. They had taken on an external Consultant, Professor Paul Corrigan, to help co-ordinate this.  His approach was to talk to people in the local health authority face to face rather than send emails or phone and so he was able to reassure people about the process.    Another strategy was to use case studies – these had a start and finish followed up by a report at the end.    Co-options of local groups for reviews was also found to be important.    Other strategies that worked well included involving and giving time for users etc to give their views - through short presentations (e.g. on single issue scrutiny); through workshops  - before the start of the formal meeting with reports to the meeting and open discussion; workshops during meetings with a ‘plenary session’ and also holding separate meetings devoted to receiving views.  As the Health and Scrutiny Panel was not a decision-making committee it had been possible to try more informal methods including varying the time and place of meetings. Lewisham had found that preparation was vital: this included giving adequate briefings to councillors about how the Health Authority worked.   

The Panel found that the process was very time consuming and exhausting.   They had decided to work intensively and have eight or nine meetings very quickly because this meant they would get an overall focus on what had been learnt.  They found that it was necessary to be realistic about how much ground could be covered and also to be flexible.    It was also found necessary to limit the number of witnesses at meetings in order to give each one adequate time to give evidence and to brief them fully - especially those unfamiliar with local government ways.    Lewisham found that professionals needed be asked to produce their reports in plain English in order to avoid jargon.  Health and education were generally the worst offenders in this respect.   

Visits to health providers were also an essential part of the scrutiny process.  At Lewisham they had looked at bed blocking and both the Director of Social Services and the Clinical Director considered that there were excellent procedures and no problems.   The Scrutiny Panel walked around the hospital speaking to people and discovered that the procedure was for the Clinical Discharge team to go round in the afternoon and for the Social Work team to go round the following morning resulting in patients staying in hospital an additional night.  By ensuring that both teams went round together they were able to cut bed blocking by about 15%  

It helped to be sensitive to differences in organisational culture between the Council and the Health Authority and if unsure about the other side’s culture to err on the side of formality. 

Cllr. Whiting considered that Lewisham had made a mistake in the way findings were written up where conclusions were emphasised.  In retrospect he considered that it would have been better to have focused on the evidence and let that speak for itself as a lot of it was extremely powerful and the conclusions reached by health professionals from such evidence could have been different from those reached by council officers.  

It was felt important that Councils should not be defensive about their own services. In Lewisham the Health Authority had really come on board when at one session they saw how councillors were able to accept severe criticism from parents about the lack of a particular service, witness two Council departments trying to lay the blame for the situation at each other’s door and yet dealt with this professionally by accepting that, indeed, there was a problem that needed to be tackled.     

Lewisham learnt that it should not act as an advocate for NHS user groups during the actual Panel sessions even though a lot of the evidence was extremely harrowing.   The Health Authority has been very worried that the Council would demand that services be improved with the resulting budget increases.  The situation was different at the report stage where the Council could state that insufficient resources were being allocated to a particular area, or that an area would operate more efficiently if it had resources of a particular kind etc. It was important to separate the evidence from the conclusions. 

Two final points, it was important to build in evaluation of the process and to explore joint work & information sharing with neighbouring boroughs. 

As regards taking the work further, discussions were going ahead with Chairs & Chief Executives of NHS Trusts looking at priorities, work programme and protocol.  They were also looking at systems for tracking the effect of scrutiny across the authority, keeping schedules of proposals etc. In effect, they were now really getting into doing the work and some staff were being recruited   Scrutiny was now covered by a new committee, the Social Care and Health Select Committee following the experience gained from the Pilot Health Scrutiny Panel in 2001.   

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