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Minutes of the Patients Forum meeting held at Which?   2 Marylebone Road , NW1 on January 11th, 2006

 Present:  Jonathan Ellis - Acting Chair (Help the Aged);  Barbara Wood (BMA Patients Liaison Group and RCR); Kate Webb (Which?); Ruth Taylor (Haemophilia Society); Toby Williamson (Mental Health Foundation); Annie Sayer (Mencap); Gerda Loosemore-Reppen )Sign); Christine Hogg (Independent Consultant); Nikki Joule (Independent Consultant); Mark Hill (MND Association); Eileen Neilson (Royal Pharmaceutical Society); Alison Pettifer (Developing Patient Partnerships); Ian Banks (BMA Patient Liaison Group). In attendance:  Diana Basterfield (Patients Forum)

Apologies:    Carol Herrity (Mencap); Sally Brearley (Health Link); Hew Helps (Chiropractic Patients Association); Juliet Dunmur (BMA Patients Liaison Group); Tom Elkins (MS Society); Carole Myer (Royal College of Paediatrics and Child Health); Angeline Burke (Nursing Midwifery Council)

Speaker:  Jessica Allen ( IPPR)

        Choice, Devolution and Equity                       (See  appendix for Powerpoint slides)  

1.       Minutes of last meeting

 These were agreed.    There were no matters arising  

2.       Minutes of Management Committee held on 16th November 2005

The Minutes were noted.

Jonathan Ellis reported that technically the Patients Forum was currently without a Chair.  He said that he had been continuing as Vice-Chair over the previous few months having done his turn -  three years -  in the Chair.  The absence of a Chair had been discussed when the Management Committee met earlier in the day and he said that he had agreed to be Acting Chair for the time being, particularly while the scoping exercise was underway.  This exercise was crucial to the future direction of the Patients Forum.     There would be a full discussion on the outcome of the scoping study and everyone would have an opportunity to contribute at the May 11th Patients Forum meeting.  After this whatever decisions the members took would be put in place.  Jonathan would continue as Acting Chair during this journey.

3.        Chair’s report

It was reported that the only item was the progress of the scoping study.   Since the November meeting the Management Committee had commissioned a small team to undertake this work. These were Gerda Loosemore-Reppen, Christine Hogg and Katie Rowan.  This was at its first stage.  A questionnaire had recently been circulated to members seeking their views.   A further progress report would be given at the March meeting.   The message to everyone was that this was a really important piece of work and a significant opportunity for members to “tell how

you see it” in terms of what the Patients Forum provided and did not provide, what was liked and what was disliked, what worked and what didn’t work.    The more information members could provide, the more confident it would possible to be in the decisions that members would be helping in formulating later in the spring.  There would be a number of opportunities over the coming months to feed into this exercise together with the substantive discussion in May on options for ways in which the Patients Forum could go in the future and where the members would like it to go. 

4.       Information Exchange  

Barbara Wood (BMA Patients Liaison Group):   It was reported that not a lot had happened since the last meeting as far as the PLG, the BMA or the RCR were concerned apart from being swamped with consultation documents.   Apart from that they were continuing to carry forward two important projects at the BMA, a consultation paper that had gone out and it was hoped that people who were interested might have a look at it and see whether they could contribute;  the second was that they were continuing to push forward on the Who’s Who project.  At their last meeting they had concentrated on surrounding mental health services.    At the next meeting the theme would be public and patient involvement.

Kate Webb (Which?):  It was reported that at the end of last year they had published the choice report on choice in medicines and there was a .pdf on the website if anyone wanted a copy.   They were also involved in a project on out of hours in conjunction with the BMA.   If anyone would like to contribute to this please contact Frances Blunden at Which?

Ruth Taylor (Haemophilia Society):  It was reported that they were finally settling down after quite a bit of disruption, the arrival of a new Chief Executive etc.  One of their major projects was seeking to increase awareness of the problems of women with bleeding disorders.     They were producing a dedicated website on this and this would be going live in a fortnight.   There was also a website geared to professionals, particularly those involved with obstetrics and gynaecology,  and also GPs - relating to bleeding disorders that affect both women and men.

Brian McGinnis (L’Arche UK ):  It was reported that there was nothing on the L’Arche front but in case people had missed it, there were two Healthcare Commission documents out:  Engaging Patients and the Public;  the other spanned the whole consultation programme of the Commission for 2006/7.    These documents had the supreme advantage of being quite short.

Toby Williamson (Mental Health Foundation):  It was reported that there was nothing to add to the items already described in the Patients Forum Newsletter.  In relation to consultations, there was an EU Green Paper on mental health and this was relatively short –  only two questions – and the deadline was 26th May.   One new item was that they were doing work around service user outcomes in mental health.  This was being done by David Crepaz-Keay.   If any PF organisations had done any work on service user defined outcomes from any context they would be interested to hear from them in order to make comparisons with the work they were doing.   Toby announced that it would be his last Patients Forum meeting (although the MHF would remain a member) because he would be going to work for the Department of Constitutional Affairs on a secondment to help them communicate and engage with their stakeholders around implementation of the Mental Capacity Act.    The code of practice consultation  for the Act would be starting in early March so for those organisations affected, watch out in early in March for announcements.

Annie Sayer (Mencap):  It was reported that one of the main pieces of work they were doing was working with families of people with a learning disability who had died in hospital.   They were currently going through complaints procedures.   They were primarily focussing on the second stage of the HealthCare Commission procedures.   The first complaint that they had input into had been lodged about 15 months earlier and only in the last couple of weeks had there been a report from the HealthCare Commission.  They were disappointed at the nature of the response to this complaint.   If anyone had any experience of the HealthCare Commission complaints process, could they please contact Annie.

Mark Hill (MND Association):   It was reported that they were working on a number of issues

1)       the Assisted Dying Bill, this was being re-introduced by Lord Joffey and likely to be going to the House of Lords imminently. The main change here was that this would be assisted physician suicide led rather than through euthanasia.  2) They were waiting for the Green Paper on welfare reform.  This was due out in January at some point.  3) On the DOD, they were waiting for this piece of legislation.  One part had already come out with the scrapping of the means testing for children if they needed adaptations to their home.   There were other sections from the Bristol report that were likely to be introduced but the date was not yet known.  Finally, on the NSF, they were contacting PCTs to find out what they were doing about introducing the equality requirements.

Gerda Loosemore-Reppen (Sign):  It was reported that Sign was interested in specialist commissioning and making an input into the Warner Review.  They had commissioned, through another organisation, a review of specialist commissioning as it affected people with psychiatric conditions and deafness.   The consultant was going to work a day a week looking at this process in more depth and would report back, hopefully in time for that review.    It was also reported that the Sign health software that produces diagnostic questions that GPs or other healthcare professionals might ask a patient in sign language was being migrated onto a portable device that could be used on handheld hardware.  It was also being translated into twelve community languages so it could also be helpful in the absence of an ethnic minority language interpreter in GP consultations. This would open up consultations to a wider group of people and, perhaps,  increase equity.

Eileen Neilson (Royal Pharmaceutical Society):   It was reported that they were doing work to develop a strategy on patient and public involvement for the Society – not the pharmacy profession.   They were now moving to Stage 2 and would be going to the Council in February with proposals and updates about how to go about creating a draft strategy and then going out to broad consultation on that.    It was also reported that they were in the process of initiating a project on ‘what does good commissioning look like?’ They were funding this jointly with several other pharmacy organisations.     If interesting material came out of this they would be looking to publish it towards the middle of the year.   Their major focus at the moment was the Foster Review of Non Medical Professional Regulations.  Andrew Foster was due to make his recommendations to Ministers before Christmas so they were waiting anxiously to hear what he would recommend  for RPS and the other regulators.

Alison Pettifer (Developing Patient Partnerships):  It was reported that their next campaign would be launched the following day and this would deal with stress.  Hopefully they would receive press coverage for it.  The next campaign would be on patient and public involvement.

Ian Banks (BMA Patient Liaison Group):  It was reported that they had discussed electronic records and what had stood out was that confidentiality only became a problem when it affected oneself.  Somebody else’s confidentiality came low down the list of priorities.     It was also reported, with regard to the Men’s Health Forum,  that they were working with a number of organisations present at the meeting.  There would be a conference in June 2006 looking at men’s use of health services with regard to mental health services, which were very badly used by men generally.  There would also be a manual produced along the lines of the Haynes Manuals (for cars).  It would be called The Brain and it would be about men and mental well-being.

Jonathan Ellis (Help the Aged):   It was reported that the pieces of work referred to at the previous meeting were still very much ongoing – NHS Podiatry Services and end of life care.  They would be publishing a report in the Spring from the focus groups they had been holding around the country with older people to talk about their fears and expectations around the end of life.     In terms of their elder abuse campaign also mentioned last time, they would be launching a public awareness campaign on 30th January with a Parliamentary reception and various materials that they would be distributing around the country.   There was a website aimed at securing 25,000 signatories supporting that campaign to tackle elder abuse:  www.IWill.co.uk    People were invited to visit the site and sign up.

Appendix

 

     

Key messages

Current choice policy could increase inequities if it is not geared towards disadvantaged

Equitable, progressive vision of choice could reduce inequities and achieve wider benefits

Need to develop choice in primary care and long-term conditions to meet needs and preferences out of hospital

Equitable choices

Progressive vision of patient choice

Choice should aim to do more than create a market. The primary goal of choice should be to improve outcomes and reduce inequalities.

Findings:

Equity and choosing

Equity, contestability and voice

Equitable choices in primary care

Summary

Project aims

Most equitable implementation of patient choice

Development of choice in the future to improve inequity

Contribute to tackling health inequalities

Not comparing choice vs planning

Not ‘solving’ health inequalities

Healthcare inequities

Equity founding principle of NHS but…

Health care inequity within the NHS

Social classes IV and V had 10% fewer preventive consultations than social classes I and II

Hip replacements were 20% lower among lower SEGs despite roughly 30% higher need

Intervention rates of CABG or angiography following heart attack were 30% lower in lowest SEG than the highest.

Causes of inequity

Distance and transport

Work and personal commitments

Voice, knowledge, skills

Beliefs, behaviours, abilities

Inverse information law

Participation in decision-making

Framework for progressive choice

Build meaningful choice throughout the system

Information, targeted support, advocacy and transport

Harnessing voluntary and community sector to support and to feedback the ‘voice of choice’

Develop choice in primary care, more specialisation, more choice outside hospital

Choice throughout long-term condition care pathway, empower to self-manage

Key findings and recommendations

1. Equity and choosing

Patients currently inequitably involved in decision-making

Pilots show equitable choosing is possible…

…but limited applicability to choose and book

…and lessons not being rolled out

1. Equity and choosing

Information

Beyond performance indicators

Health-related quality of life outcomes

Wider factors of patient experience

All providers subject to same information for choice requirements

Accessible information – languages, abilities, formats

1. Equity and choosing

Information support and advocacy

Commissioned from a range of sources

Voluntary and community organisations

‘Support prescriptions’ for patients who need targeted support or advocacy

Advice should be commissioned and regulated to ensure high standards

PCTs will have to balance priorities to ensure resources available

1. Equity and choosing

Transport

Car-less and less mobile people currently disadvantaged

Choice could reduce disadvantage, especially if more choice outside hospital

Provision, organisation and subsidy of transport should be reviewed

2. Equity, contestability and voice

Contestability has been driver for choice

Risks for equity, especially polarisation

Need to ensure equitable choosability

Market management by commissioners and effective regulation according to principles to maintain choice and prevent sink services

2. Equity, contestability and voice

Providers and commissioners to gather intelligence of needs and preferences

Organisations providing info and support should feedback intelligence on needs, preferences and experiences

Providers and commissioners need to engage with community

Collective voice to complement choice

3. Equitable choices in primary care

Current emphasis on choice in secondary care conflicts with shift to primary

Unclear what the objectives of choice in primary care are

Equity problems include lack of access, particularly closed practice lists

Opening hours

Inequitable service choices

3. Equitable choices in primary care

Choice of GP

Greater specialisation by health need or demographic segment

Networks of commissioning practices collaborating to provide a wider range of traditionally secondary services

Review of GP funding according to health needs of registered population

3. Equitable Voices in Primary Care

Information revolution

Information, support and advocacy

Voluntary and community sector

Feeding back the voice of choice

4. Choice and LTCs

Choice and long term conditions

Greatest potential beneficiaries of progressive, empowering choice

Least beneficiaries of secondary care market choice

Develop choice throughout pathway - personalisation

Specialist commissioners and providers in community – year of care budget

4. Long term conditions continued

Choice of pathway

Choice of disease or case manager

Choice to enable self management

Self-management + direct access + choice

Communities of patients for mutual support and collective choice

Key messages

Current choice policy could increase inequities if it is not geared towards disadvantaged

Equitable, progressive vision of choice could reduce inequities and achieve wider benefits

Need to develop choice in primary care and long-term conditions to meet needs and preferences out of hospital

 

 

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  Last updated 18/3/2006   © The Patients Forum 2006