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MINUTES
OF THE PATIENTS FORUM HELD ON WEDNESDAY 13TH NOVEMBER 2002 AT
CONSUMERS’ ASSOCIATION Present:
Jonathan Ellis – Chair (Help the Aged); Karen Thomson –
Vice-Chair (Diabetes UK); Vincent Cox (Sickle Cell Society);
Mike Took (Rethink); Andrew Chidgey (Alzheimer’s Society); Kate
Cotton (Marie Curie Cancer Care); Martin Hunt (MS Society); Judy Walker
(Help for Health); Frances Blunden (Consumers’ Association); Nicky
Vinton (National Cancer Alliance);
Marlene Winfield (NHS Information Authority); Judith
Wardle (Continence Foundation); Wendy Garlick (Consumers’
Association); Peter Walsh (ACHCEW)[; NikkiJoule (Neurological Alliance);
Brian McGinnis (MENCAP: Rachael Childs (POPAN); Jonathan Coe
(POPAN); Alison Morris (MND Association) Apologies: Clara
Mackay (Breast Cancer Care); Ruth Taylor (Haemophilia Society); Imelda
Redmond (Carers UK); Gerda Loosemore-Reppen (RNID);
David Pickersgill (BMA); Eileen Neilson (Royal Pharmaceutical
Society); Judy Wilson (National electronic Library); Roger Steel
(Consumers in Research Support Unit); Francine Bates (Contact a Family);
Hew Helps (Chiropractic Patients’ Association); Alison Soliman
(Dementia Relief Trust); Relatives & Residents Association; Sophie
Chaudhury (National Aids Trust); Sharon Leaver (Action on Elder Abuse);
Elizabeth Manero (London Health Link); Micky Willmott (Age concern
England); Janice and Bill Kent (reMEmember – Chronic Fatigue Society);
Susan Savage (National Midwifery Council); Alyson Turner (Maternity
Alliance); Sheila Dane (Stroke Association) Speaker:
Sally Windsor, National Care Standards Commission
Introducing the National
Care Standards Commission ( See Minutes of the last meeting
The minutes of the
meeting held on 17th July were agreed. Matters arising
There were none, not
already on the agenda. Chair’s report Awayday follow up Jonathan Ellis reported
that progress had been made on a number of issues arising from the
Management Committee awayday in June.
The day had looked at the direction of the Patients Forum and the
future of the Patients Forum. Current Department of Health funding comes to an end in
April next year so since the away day the Management Committee had been
doing some more thinking to clarify overall aims and objectives. Firstly, there had been mention at a previous meeting
of the potential benefits of going for charitable status as a way of
further strengthening the Patients Forum overall governance arrangements
and also potentially opening up new sources of income.
Officers of the Management Committee would shortly be attending a
meeting with an organisation specialising in negotiating voluntary
organisations through the application process for charitable status.
There would be a further update on this at the next meeting in
January in terms of what this would involve and when things would
happen. To assist in
the process of looking for new sources of funding, there was now what
could loosely be described as a Business Plan.
This pulls together what the Patients Forum does, what it has
achieved and what it is about. This
would be circulated via email to all members. Commission for Patient and Public
Involvement in Health
The other piece of news
related to the new Commission for Patient and Public Involvement in
Health of which Sharon Grant was Chair Designate.
The announcement of the name of the new Chief Executive was
expected any day. As discussed at the awayday and at the July
Patients Forum meeting, a lot of work would need to be done to clarify
how the Patients Forum can support and contribute to the work of the
Commission in terms of providing a relatively straightforward point of
access to such a diverse range of consumer
health and patient perspectives on policy and on the wider issues of
public involvement. Clara, Karen, Jonathan and Diana would be meeting
Sharon Grant the following just as an initial meeting to map out where
there could be potential for developing a more strategic and longer term
relationship. Patients Forum Seminar
Jonathan drew attention
to the flyer for the seminar and stated that in terms of resources and
the pressures the Patients Forum was potentially under after April this,
and subsequent seminars, would replace the Annual Conference in 2003.
The Management Committee had felt that it was important to
maintain the momentum of looking at the range of issues that had an
impact on the Patients Forum work but to take a more pragmatic approach
about what could be achieved with limited resources.
It had been decided to run a series of seminars and the first one
on 3rd December would cover the blurring of the boundaries
between the private and public health sectors.
Others being planned were on the Commission for Health
Improvement’s first annual review of the NHS and on the Mental Health
Bill. The core
work of the Patients Forum would be protected as far as possible - the
regular meetings and the facilitative role.
The grant over recent years had allowed the Patients Forum to dip
into project work and research and this had been very exciting and very
new for the Patients Forum and it was not yet know had much of this
could continue after April. Information exchange
Vincent Cox (Sickle
Cell Society). It
was reported that there had been a number of newspaper articles on the
use of Pethidine to treat sickle cell disease.
The Sickle Cell Society were not saying that Pethidine was the
best treatment for the condition but they were aware that some patients
had taken this over 16-20 year periods and had found it very helpful in
managing the condition. Mike Took (Rethink). It was reported that much of
Rethink's most effective campaign work was being done in
alliances. There was currently a group headed by the Parkinson's
Disease Society looking at the abolition of prescription charges; this
alliance had a wide range of member organisations. Members
may be interested in joining this alliance.
On the abolition of prescription charges, the BMA had recently passed a
resolution to this effect. . It was reported that only
20% of the population pays prescription charges. The alliance was
moving towards producing a position statement. Frances Blunden (Consumers’
Association). It was
reported that CA’s work on genetics was carrying on apace and a report
would appear in the December Which.
Work was also being done on risk, on ambulances and on general
regulation issues. Of
current concern was the EU directive on the movement of medical
professionals. This was
being done on the free movement of professionals basis and the concern
for patients was that any professional would be able to work for up to
16 weeks in a host country without notifying the regulator in that
country. Nikki Winton (National Cancer Alliance). It was reported that NCA had also been experimenting with alliance campaigning and there had been a reception at the Labour Party Conference with seventeen cancer charities. Alan Millburn had attended and was very pleased that people were working together in partnership. It was also reported that another major strand of NCA’s work was NICE. Members’ attention was drawn to a big consultation being carried out by the University of Birmingham. This was looking at a better way to formalise patient evidence across the board. This was called a Patient Impact Assessment. There had been a big workshop in May and a web consultation was imminent. Anyone interested in responding to the consultation should contact r.mason@bham.ac.uk . Alison Morris (MND
Association). It was
reported that benefits remained a major campaigning issue.
There had been some good news during the week.
The form patients were required to complete to apply under
special rules for DLA and AA had been amended and the MND considered
this to be a much better form. Many neurologists had not been using the
form for people with MND because it was very cumbersome.
It was also reported that MND had nearly finalised its
International Symposium on MND and it had recently carried out an OT
survey via Therapy Weekly and had received about 1000 responses. Judith Wardle (Continence
Foundation). It
was reported that Continence Awareness Week in September had been very
successful on the theme of functioning incontinence and there had been a
large demand for the leaflet.
The theme for the Week next year would be “men” punchier than
“incontinence in men” and would take place again in September.
It was also reported that CF had almost completed its involvement
in a NICE appraisal of a procedure (as opposed to a drug) regarding
tension free vaginal tape which was a surgical procedure.
CF had been impressed by the appraisal meeting and the outcome.
CF had also held a large conference in October on integrated
continence services. This
partly followed a study CF had been carrying out using expertise from
the Royal College of Nursing regarding the implementation, or rather the
non-implementation of government guidance that had come out in March
2000 regarding continence issues. Connected
with this were the targets in the NSF for older people which stated that
plans for an integrated continence service should be in the HiMP by
April 2003 and the existence of it should be by April 2004.
It was reported that so far only 40% of HiMPs referred to an
integrated service.
CF were not very hopeful that the targets would be met.
Another finding from the survey was that 70% of continence
services had no plans for user involvement in developing the service. Wendy Garlick (Consumers’
Association). It
was reported that with regard to the anti direct to consumer advertising
campaign, a recent vote in the EU Parliament voted to retain the current
ban on drug companies advertising to consumers.
CA was pleased with this but the campaign needed to continue.
It was also reported that work continued on writing the policy
report on patient information. This
would be published in February. Peter Walsh (ACHCEW). It was reported that there was still no timetable for
the abolition of CHCs and ACHCEW.
As a result some CHCs were struggling to maintain a quality
service. It was hoped that
decisions would be made soon.
One concern was that two years after pushing the legislation
through Parliament, thanks to compromises and commitments given at the
time getting it through, it now appeared there was not the funding to
implement the whole system in the way that had been promised.
There had been startling revelations that people were thinking of
just twenty eight offices for patients forums across the whole country
replacing 184 CHCs. This had not yet been agreed and ACHCEW was doing
what it could through questions being asked in Parliament, people
writing letters, etc. It
was hoped that there would be some improvement but the situation was
looking worrying. It
was also reported that ACHCEW was working on a project called Not the
Waiting List that would look at those areas not so publicly monitored
and reported on, e.g. services in mental health, learning disability,
many services in primary care.
Members were asked to provide ACHCEW of any examples they had
come across.
On a personal note, Peter reported that in January he would
become Chief Executive of AVMA (Action for Victims of Medical
Accidents). His replacement
at ACHCEW would be Malcolm Alexander, currently the Chief Officer at
Southwark CHC. Nikki Joules (Neurological
Alliance). It was
reported that NA was currently gearing up for involvement in the NSF for
Long Term Conditions focusing on neurological conditions and brain and
spinal injuries. The Chair
of the External Reference Group for this NSF had been announced at their
AGM in October - Diana
Whitworth from Carers UK. The
Deputy Chair, Lynne Turner Stokes was a consultant in rehab medicine.
A new Project Manager had been appointed to focus on the NSF. Brian McGinnis (MENCAP). It was reported that he was a member of the Royal
College of Physicians’ working group on revising the guidelines on the
persistent vegetative state. This
was nothing to do with disposing of people who were almost dead but
rather defining the natures of the locked in state.
Brian had written an accessible version of the guidelines. It was also reported that, in relation to the Mental
Health Bill there was an interesting
process going on whereby bit by bit issues raised in consultation were
being pulled out and re-addressed.
The same process followed with the 1982 Mental Health Act was
currently being followed – namely a pre parliamentary committee stage
process in the House which could receive evidence from outside
interests. This was rather
an unusual process but an effective one for fairly controversial pieces
of legislation such as the current Bill. Jonathan Coe (POPAN). It was reported that POPAN was going through a strategic
planning process. It was
hoped that a plan would be circulated in the Spring.
There had been staff and committee discussions around the
direction of travel and this had given backing to keeping the running of
the helpline and the advocacy and support team as the central function
of the organisation and, on top of this, to develop participation in
POPAN through partnerships as well as to focus the campaign work.
POPAN was looking for more Board members – three had recently
left - particularly with
employment and human resources skills and experience in the field of
abuse. It was also reported that their newsletter,
previously aimed at clients of the service, had now been opened up to
communicating with all the people who had a stake in POPAN.
Anyone interested in being put on the mailing list to contact
Jonathan. Jonathan Ellis (Help the Aged). It was reported that the second edition of the new quarterly policy and research publication “Age Today” would be out very soon on the issue of social care and older people. It was also reported that Research into Ageing, now a trust within Help the Aged, had just announced a £1.25 million research programme over the next five years into incontinence. Sent
in report from Susan Savage (National Midwifery Council) unable
to be at the meeting. It
was reported that the NMC was currently consulting on the new register. Under the legislation setting up the Council NMC was required to create
a new register. The new legislation also required those registering and
renewing their registration - currently every three years - to show that
they were in "good health" and of "good character".
The consultation was seeking people's views about parts of the register
and how the requirements in relation to demonstrating good character and
good health could be fulfilled. It was also reported NMC had consulted on whether to include a clause in its Code of
professional conduct requiring all nurses, midwives and health
visitors to have professional indemnity insurance for professional
activities not provided for under an employer's vicarious liability
scheme. On 7 November,
the NMC Council had considered the results of the consultation and
decided that the best approach was not to enforce indemnity insurance
but to offer a recommendation to independent practitioners that they
should maintain adequate professional indemnity insurance in respect of
their practice. This would be either as an attachment to the Code or in
some other way. This was not effective now. In January the Council would
decide the detail of how this would be taken forward. More detail was on
the website. On
a person al note Susan sent
thanks to members for their support throughout the time she had been
involved with the Patients Forum, and for their interest, advice and
commitment to the work of the UKCC and now NMC, in particular in
developing public involvement. She sent her best wishes to everyone for
the future. Any other businessThere
was no other business. Date of next meetingThursday,
January 16th APPENDIX Sally
Windsor, National Care Standards Commission -
Introducing the National Care Standards Commission
Sally introduced
herself. She is the
Regional Manager, South West, and she was replacing her colleague, Diana
Grassie who was unable to attend at the last minute. Due to a malfunction of
the tape recorder, only Sally’s Powerpoint slides are available. These
can be sent in paper form on request. (Take a very long time to
download)
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