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MINUTES
OF THE PATIENTS FORUM MEETING HELD ON THURSDAY 15TH MARCH
HELD AT THE CONSUMERS’ ASSOCIATION Present: Clara
Mackay – Chair (Consumers’ Association); Francine Bates –
Vice Chair (Contact a Family); John Knape (UKCC); James Appleyard (BMA);
Rahana Mohammed (LMCA); Karen Thomson (Diabetes UK); Frances Presley (ACHCEW);
Elizabeth Manero (London Health Link); Aine Dolan (POPAN); Geraldine
Amos (Home from Hospital); Hew Helps (Chiropractic Patients
Association); Philip
Harris (Help for Health Trust); George Levvy (MND Association); Lucy
Widenka (for Mike Took – NSF); Sally
Williams (Consumers’ Association); Howard Lewis (RNIB);
Will Anderson (King’s Fund); Brian McGinnis (MENCAP); Judith
Wardle (Continence Foundation); Gerda Loosemore-Reppen (RNID); Les Hill
(NAPP); Micky Willmott (Age Concern England); Jonathan Ellis (Help the
Aged); Jane Belman (LVSC); Kristin McCarthy (Doctor Patient
Partnership); Jo Hampton (GMC); In attendance:
Diana Basterfield (Patients Forum) Apologies:
Imelda Redmond (CNA);
Eva Jacobs (Hon.Treasurer); Debbie Smith (Anchor Trust); Alison Soliman
(Dementia Relief Trust); Saranjit Sahota (National Consumers Council);
Kussum Joshi (Confederation of Indian Organisations); Susan Savage (UKCC);
Lizzie Chambers (ERIC); Mark Paulson (GMC); Mike Took (NSF); Eileen
Neilson (Royal Pharmaceutical College); Irene Mackay (Coeliac Society);
Becky Miles (National Cancer Alliance); Ruth Taylor (Haemophilia
Society); Gerry Mahaffey (Princess Royal Trust for Carers); Barbara
Meredith (Age Concern London); John Tait (Relatives & Residents
Association); Beverley
Beech (AIMS) 1. Minutes
of meeting held on 18th January 2001 The minutes were
agreed 2. Matters arising No
matters arising not included on the Agenda/chair's report 3. Chair’s report (a) Patients Forum
2001 Conference – “Shaping the agenda – the UK Patients
Movement.” It was
reported that the conference had been very successful and that feedback
on the formal evaluation was very positive. (b) NHS Conference
30/1/01: It was reported that the Chair had spoken on behalf of the
Patients Forum at this conference. (c) Clean Hospitals
initiative: members were reminded that at the previous meeting there had
been a long and productive discussion on this issue and a lot of
information has been pulled together to feed back to NHS Estates, the
group leading on this work.It was reported that the initial meeting with
the NHS Estates meeting had not been very productive and a further
meeting had been requested. (d)
Preparations for AGM: It was confirmed that a decision had been taken to
move the patients Forum AGM from July to September.
It was also agreed to extend the AGM invitations to organisations
beyond the patients Forum membership and to hold an event with a panel
discussion. Members were asked to think about proposals for theme. (e)
Meeting with Gisela Stuart: It
was reported that this meeting had gone well.
The participants were Jonathan Ellis (Help the Aged), Angela
Burke (ACHCEW), Clara and Diana. Some of the key concerns about the
Health and Social Care Bill were raised, as well as concerns about the
consultation process around the Guide to the NHS as well as on the
content of the Guide itself. It
was agreed that a letter should be sent on behalf of the Patient Forum
raising these points. (f)
Health and Social Care Bill it was reported that a meeting had
been held with a DoH representative on the patient confidentiality and
patient information clause in the bill.
It was agreed that the Patients Forum would follow through with
meetings on guidance and regulations falling out from the Bill. (g)
NHS Information Authority: it was reported that Marlene Winfield
from the NHS Information Authority had given a presentation to a small
group on the work of the Authority. It was agreed that she would be
invited to speak at a future Patients Forum meeting. (i) Meeting at autumn Party Conferences: It was reported that the Patients Forum was working with
three other organisations, LMCA, Carers National Association and Contact
a Family, on organising a fringe meeting at each of the
party conferences in the autumn.
There will be a report back at the
next meeting on progress. 4. Presentation
on the Patient and Public Involvement Project Research - Christine Hogg
(see below) 5.
Information exchange
Jo Hampton (GMC):
The GMC had two new consultation documents on their website this week.
One on future governance and structure of the GMC, the other on the
review of their fitness to practice procedures.
The consultation is open until 23rd April. Kristin McCarthy
(Doctor Patient Partnership): Reported
that the DPP are in their last year of funding and are waiting to hear
the outcome of their Section 64 application. She also reported that they
are going ahead with a number of campaigns
- one on kids and health focussing on sexual health and on
nutrition. She also reported that they are running their annual missed
appointments campaign and that this year they are doing research with
King’s College looking at why people miss their appointments and also
telling surgeries what they can put in place to make it easier for
people to cancel their appointments. Jane Belman (LVSC):
Jane Belman reported that she is talking with the NHS London Region
about how they can work together on developing good practice about
patient involvement once the Bill has been passed.
She also reported that she is working to strengthen the voluntary
sector voice on the London Health Commission and is leading a working
group on promoting community development approaches to health across the
statutory sector in London. She is also working with the King’s Fund
on a conference linking regeneration and the role of the NHS as an
employer, including how the NHS relates to the voluntary sector to
promote regeneration and employment - and will be following that up
looking at the way the NHS contracts with the voluntary and community
sector to develop better services and also contributes to regeneration. Micky Willmott (Age
Concern England): It was reported that Age Concern has been doing a lot
of work on the Health and Social Care Bill and has produced a very large
number of amendments and briefings. If members wanted they would be
happy to supply them. Gerda
Loosemore-Reppen (RNID): It
was reported that RNID held a successful question time with the Greater
London Authority and a number of issues had been put forward which it
was hoped would be acted on in the future.
They have also been working on a report on audiology services –
UK waiting times and other quality issues – due to be published
shortly. The
Children’s Best Practice Standards would be on their website by the
end of March and anyone interested in Social Services for deaf children
would be welcome to comment on those. Brian
McGinnis (MENCAP): The new guidelines on consent to medical treatment
were expected out shortly. They had been agreed by Ministers the previous day.The new guidelines were out and these were fairly good except in
relation to people unable to speak for themselves. Judith Wardle (The
Continence Foundation): It was reported The CF that they have been
working for a long time with Customs and Excise on VAT and had taken
part in a recent discussion about continence products available from
retail sources. These would now be zero rated on the shelf. They still
have to work on the wording so this would not happen immediately. Last
year the DH produced guidelines on continence services and they would be
working with the RCN on a research project to see which primary care
trusts would be following the guidelines. Will Anderson
(King’s Fund): It was reported that the King's Fund are planning a
conference on October 22nd on patient and public involvement
in the health service which would bring together various strands of
their work. Two initiatives were also being started (a) the possibility
of a learning network to bring together people from local health
economies, groups of people who span the voluntary sector, the health
service and local authorities to try and work out how they could make
the most of the opportunities in the NHS Plan, reflecting on their
current experience, their current expertise and the breadth of what they
were currently doing. (b)
Julia Neuberger, their Chief Executive, was also chairing a parallel
series of discussions where she was inviting a small number of voluntary
sector organisations to think about the same kind of themes.
They hope that this will feed into the October conference and
into the briefing paper that will set out the broader concerns and how
the NHS Plan can be used as an opportunity rather than as an obstacle.
Les Hill (National
Association for Patient Participation): It was reported that the NAPP
were putting the final touches to their conference on 9th
June in Birmingham. They
were having great difficulty in finding a GP who would speak against
patient involvement. The
title of the conference was “The Way Forward.” Phil Harris (Help
for Health Trust): Their
Centre for Health Information Quality had just started an accreditation
service for NHS digital TV pilots and over the new few weeks they were
looking to develop a set of quality standards for information material
disseminated through these TV pilots.
The emphasis would be on evidence base, accessibility, balance
and bias of the information. He
hoped to be able to circulate information on this to Patient Forum
members shortly for comment. Hew Helps (Chiropractice
Patients Association): It was reported that the Association were working
to become a charitable trust. Geraldine Amos (Home
from Hospital): It was reported that HFH are concerned about the effect
of the cuts in Social Services at the moment. For example, if a patient
goes home from hospital, and the patient is unable to get in or out of
bed, they can either have someone for half an hour to put them to bed,
or for half an hour to get them out of bed, but SSD’s cannot afford
both. Aine Dolan
(Prevention of Professional Abuse Network (POPAN): POPAN is developing a
training package to use with professionals in the NHS around the issues
of the abuse of patients and clients. They are also members of a
consultation group looking at protection of vulnerable adults
guidelines. They are travelling around the country doing
awareness-raising work with service users as well. Frances Presley
(ACHCEW):
Most of their time had been taken up with lobbying and producing
amendments on the Health and Social Care Bill.
All those amendments were now with the House of Lords.
They had been pushing for two areas, a statutory national body
and that CHCs should be reformed and not abolished. They were also doing
casualty watch on March 26th which was when they monitored
waiting times in A and E departments. Lucy Widenka
(National Schizophrenia Fellowship): one of their current campaigns was
on the Mental Health Act and as part of the Mental Health Alliance
Alliance they had a week of action from 2 – 8 April.
They have produced a campaign pack that can be obtained from
NSF. George Levvy (Motor
Neurone Association): It was reported that the MNA's current concern is
the new national service framework for long term medical conditions,
particularly neurological ones.
Rahana
Mohammed (LMCA):
LMCA had held a conference looking at self-management for people
with long-term conditions. They
are awaiting the report from the Expert Patients Task Force – due in
May – and their conference fed back into this. They are also doing a
lot of response work around the national
service framework for people with long term conditions.
Their AGM is on May 14th, which will be followed by a
policy forum. James Appleyard (BMA):
It was reported that the BMA had produced a report on the funding
of the health service – this involved not only doctors but also focus
groups including the voluntary sector.
The conclusion they came to, unsurprisingly, was that central
funding was the most efficient way of doing things, certainly in money
terms. This raised the ongoing issue of rationing. Beverly Beech
(Association for Improvements in Maternity Services):
It was reported that AIMS is concerned about the shortage of
midwives. The problem is the increasing the numbers of complaints by
women who are not attended during their birth but are left for long
periods sharing one midwife with five other women. The other new work
they have been involved with is a book, called “Birthing your Baby”
all about “normal birth.“ This
was due out in two weeks. Clara Mackay
(Consumers Association):
It was reported That CA is finalising a policy report on
information on prescription drugs and the promotion of prescription
drugs and a report on professional regulation. Francine Bates
(Contact a Family): It was
reported that CaF are working on the national service framework on
children. There had been very little about children’s health services
in the NHS Plan and this was of great concern to a number of
organisations, including her own. CAF is also organising an awareness
week starting on the 14th of May.
They are concentrating on three issues, the three D’s –
raising awareness among doctors about the prevalence of rare
diseases and getting them to refer much earlier than they do to prevent
later problems from developing – earlier diagnosis and developing
treatment. There is a
dearth of treatments for children’s rare diseases primarily because
the pharmaceutical industry does not think it is worth investing in
this. CAF are bringing together a wide group of parents and children who
have rare diseases on these three common issues.
6. Next meeting AGM Thursday 13th
September Presentation by Christine Hogg: Patient and public involvement in the NHS – Interim results of the Scoping Study. Patients Forum March 15, 2001Christine began by
saying that that the document was still at an interim stage and
consultation and comments would be very welcome.
They had started out by
looking at the three different agendas relating to patient and public
involvement.
Interim findings.
It was generally, but not universally, agreed that there should
be a new organisation; that it should be based on an alliance of
statutory services, such as Patients’ Councils, and the voluntary
health sector; that the functions might be to oversee support and
training, standards and monitoring; it should provide a strong voice for
patients and public at a national level (based on research based); It
should be facilitative and enabling; have statutory rights; commission
rather than do; have regional networks; should be accountable to its members and to Parliament and be
publicly funded. The main areas of
concern were that if the body were statutory this could lead to a loss
of independence (but there
was agreement on the need for rights and public funding); whether it
would be feasible to combine statutory bodies (Patients Councils) and
the voluntary health sector; whether having a collective voice could
stifle smaller groups and people not part of traditional networks; that
having both support and monitoring functions could be difficult to
combine. The role of a
national body. It
was felt this should provide a strong voice for patients and the public
in the NHS nationally; provide a gateway for Government and other public
and professional bodies to access views of patients and carers;
set standards and provide support and training for patient, carer
and public representatives and encourage effective involvement, and
ensure advocacy and representation for people who were not part of
traditional networks. This last was very widely supported. Four
models for a national body were suggested by the scoping study.
a statutory
organisation overseeing Patients Councils and representatives on
public bodies; a federation of voluntary organisations;
a statutory partnership organisation shared between
patients/public and other stakeholders; an integrated membership
organisation covering Patients Councils and the voluntary sector. The
consultation had shown that most people wanted an organisation with
statutory rights. (ACHCEW didn’t have any statutory rights - only
had the right to exist). These rights should include the right to information,
to be consulted, to be answered by government when they made a
statement or produced a report. As
a body it should commission research, training etc rather than try and
do it itself. There were
a lot of organisations that already produced reports and did training
and the body should not try to duplicate or compete with existing
organisations or expertise already around.
There needed to be regional networks to enable information
exchange, peer support and assistance in dealing with issues at a
local level as well as specialist commissioning. Some of the CHCs felt these should correspond to NHS regions.
Without regional networks the bureaucracy in a central body
could become far too top heavy and top down.
It needed to be a bottom up organisation with a flow of
information both ways. It
should be accountable to members, to Parliament (not just the
Department of Health) and to the public.
(In terms of the collective voice element, it should be a
membership organisation – from Patients Councils and the voluntary
health sector.) The four models
were discussed by the Patient and Public Involvement Project Advisory
Group which consists of the College of Health, the Long Term Medical
Conditions Alliance, Citizens Advocacy Information and Training, NACAB,
Consumers’ Association, Black and Ethnic Minority Community Care
Forum, ACHCEW, National Consumer Council, Action for Victims of
Medical Accidents, Diabetes UK, Professor Judith Allsop from De
Montfort University and observers from the Department of Health and
the NHS Information Authority. The comments on the four models were as
follows: Statutory organisation overseeing Patients Councils
It was felt that this would be a revitalised ACHCEW with
regional networks but there were concerns about the structure.
It would not meet the voluntary sector agenda and it would
maintain the split between the statutory and voluntary sector at
national level. Federation of voluntary
organisations.
This was favoured by some voluntary sector organisations . A
federation structure had the obvious advantage that organisations
could build up working relationships to their own agenda, not the
government’s. The
disadvantages included that it would not necessarily give the
government what it wanted in terms of Chapter 10 and patient
accountability. Also it
would have no statutory rights and no guaranteed funding.
Very soon it could be seeking Section 64 funding and be
competing with its own member organisations for funding. A statutory partnership organisation.
This could be a Public Participation Partnership, similar to
CHI, with patient public representatives and other stakeholders.
The advantage would be that it would provide strong
collaboration at national level.
It was not felt that this would give a strong voice to patients
and the public at local level. There were doubts whether the voluntary
sector was well enough developed to be able to hold its own and
whether there would be ownership by constituents. An integrated
membership organisation. This
was the model favoured by the whole Advisory Group.
It would cover
Patients Councils and the voluntary sector.
This would have the advantage of bringing all patient /public
interests together at national level.
The disadvantage would be that there could be tensions between
the different ‘arms’ and obviously the design of the structure
would be extremely important. One suggestion was that the governing
body should have one third of its members coming from national
voluntary groups, one third elected representatives from regional
networks of Patients Councils and Patients Forums and one third lay
people - to fill in any gaps in representation. Christine
concluded by talking about the next stage of the process.
There would need to be further consultation to ensure that any
body set up was able to unite groups promoting patient/public
involvement in a common purpose without segmenting patients/public
interest or deflecting groups from their own agenda.
The outcome of the amendments to the Health and Social Care
Bill being put in the House of Lords would also need to be considered.
There may need to be transitional arrangements to undertake the
urgent work on developing guidance, setting standards and designing
training and support for Patients Councils and related bodies.
Work on developing the collective voice could develop more
slowly to ensure that there was full consultation about any proposed
structure and to make sure that it met the needs of voluntary
organisations, large and small, and in particular people who were not
part of traditional networks. The deadline for comments on the paper previously circulated to Patients Forum members was Tuesday, 20th March. |
| Last updated 21/5/2001 | © The Patients Forum 2001 |