MINUTES
OF THE PATIENTS FORUM MEETING HELD ON WEDNESDAY 17TH JULY
2002 AT THE CONSUMERS’ ASSOCIATION,
2 MARYLEBONE ROAD, LONDON N.W.1
Present:
Clara Mackay – Chair (Breast Cancer
Care); Imelda Redmond (Carers UK); Liz Thomas (AVMA); Rehana Looker (NHS
Information Authority); Judy Wilson (NeLH); Nikki Joule (Neurological
Alliance); Jayne Thomas (Hospice & Palliative Care Council); Gerry
Mahafey (Princess Royal Trust for Carers); Roger Steel (Consumers in NHS
Research Support Unit); Nicky Vinton (National Cancer Alliance); Micky
Willmott (Age Concern
England); Gerda Loosemore-Reppen (RNID)’; Jackie Glatter (Consumers’
Association); Karen Thomson (Diabetes UK); Jonathan ellis (Help the
Aged); Hew Helps (Chiropractic Patients Association); Wendy Garlick
(Consumers’ Association); Jane Belman (LVSC); Alison Soliman (Dementia
Relief Trust); E.B. McGinnis (MENCAP); Judy Walker (Help for Health
Trust); Andrew Chidgey (Alzheimer’s Society); Roger Battye (NAPP);
Kristin McCarthy (Doctor Patient Partnership); Marianne Rigge (College
of Health); Frances Blunden (Consumers’ Association); Guest: Diana
Grassie (National Care Standards Commission); Diana Basterfield
(Patients Forum) – in attendance
Apologies:
Francine Bates (Contact a Family);
Geoff Braterman (Homeopathic Society);
Eileen Neilsen (Royal Pharmaceutical Society); Alison Morris (Motor
Neurone Disease Association); David Pickersgill (BMA); Sheila Dane
(Stroke Association) Kate Cotton (Marie Curie Cancer Care); Elizabeth
Manero (London Health Link); Mike Took (Rethink); Geraldine Amos (Home
from Hospital Care); Pam
Turpin (RNIB); Gemma Smith
(Mind)
Speaker: Harry
Cayton, Director for Patient Experience and Public Involvement,
Department of Health. See appendix.
Minutes of
the last meeting
The minutes of
the meeting held on 23rd May were agreed.
Matters arising
There were no
matters arising not on the agenda.
Chair’s report
Management
Committee away day
The Chair spoke
to the summary she had prepared and circulated with the papers for the
meeting. She said
that she had found it a very positive, constructive and productive day.
The Management Committee had tried as best as it could to use the
feedback from Patient Forum members on the recent evaluation
questionnaire to inform the thinking.
They also took into consideration the fact that the Section 64
funding would come to an end in April 2003 and at the same time the new
Commission for Patient and Public Involvement in Health would go live.
At the outset of
the day the Committee spent some time thinking about what it was that
the Patients Forum did,
what people had said that worked well and what did not work well.
There was a very good facilitator for the day.
Quite a bit of time had
been spent looking at whether the Patients Forum competed with other
organisations or whether it duplicated the work of others,
At the end the group had come back to the simple but powerful
decision that as network, as a forum, for people to exchange information
and learn from each other, the Patients Forum was an extremely important
network. When this was
looked at in further detail some of the things that came through that
were really important were that it could be a very creative space for
thinking about and discussing policy because the Patients Forum itself
did not have a particular agenda. Francine
Bates had summed it up well by saying that the Patients Forum did not
have an ego of its own, it facilitated and supported its membership
rather than competed with them.
The Chair added that although the main purpose of the Patients
Forum was to be there and support the member organisations and to flag
up issues for one another as they arose, there was another role that the
PF increasingly played, that of being a reference/sounding body for
external agencies. This could be a very valuable and powerful role. The
Management Committee concluded that the Patients Forum remained unique
in relation to all of the other networks and organisations out there. Feedback from the review about the value of the Patients
Forum to its members, although it had certainly not been overwhelming in
terms of volume, had been very positive.
The core purpose remained as it had been for many years and what
was now needed was to build on this core purpose rather than trying to
invent and pursue other areas around research, and campaigning
activities. These activities were what members organisations did rather than the Forum.
With this context and
looking to the future, the Management Committee had felt that in the
year to come there were a number of important challenges and strategic
aims that needed to be looked at. These
included developing the Patient Forum’s role as a resource for
information and support for networking and helping members to develop
policy and keep abreast of policy issues.
There were also some of the more difficult issues to be
considered that the Patients Forum did not do particularly well, and the
Committee considered that a key challenge in the coming years was to
tackle issues around diversity and representation within the Forum.
This was extremely important.
If the Patients Forum
had a future and there was a wish to continue to be a player, the
reality was that it would be necessary to look for sources of funding
beyond the current Section 64 grant and membership contributions.
To do this successfully would require looking at the governance
arrangements to make sure that they were appropriate and strong so that
any potential funders would feel confident that PF would be able to
manage funding well and meet certain criteria.
The Chair reported that
in terms of the next steps and actions to be taken a number of these
would require support from the full membership in order to go ahead.
This would include applying for charitable status (many of the
funding agencies want to work with organisations that have charitable
status). Additionally the title “Patients Forum” needed to be
changed as this would lead to confusion as patients forums came on
stream. There was also the
fact that the title did not accurately reflect what the Patients Forum
did and the nature of its membership.
Along with this would be the re-wording of the core purpose
statement to convey more accurately the exciting scope of the work being
done.
The Chair concluded
that most significantly the Management Committee came round to the view
that it did not see the Commission for Patient and Public Involvement as
a threat but rather that it provided a real opportunity for the Patients
Forum and there was a real need for it to recognise the value of the
contribution the Patients Forum could make to its work.
This would be on two levels, first to continue to inform the way
that the Commission was rolled out and additionally, as for any health
agency, it needed access to a network like the Patients Forum to take
soundings on its own policies and to ensure that what it was doing was
informed in a wider sense by the network of health and consumer and
patient groups. The
Chair said that a proposal would be put to the Commission for protective
funding to support the Patients Forum network.
The Management Committee had felt quite strongly that the
relationship could not and should not be an exclusive relationship where
the Patients Forum was funded by the Commission; rather that the
Commission would partly fund a reference group that they could visit and
take soundings and send information down and take information up.
The Patients Forum would remain independent and continue with its
core purpose of member organisations supporting one another.
The final next step
would be to develop a marketing plan to communicate these ideas to
potential funders and also to potential members as well as the big
players in health and social care who needed to be made aware of the
network and to engage with members on policies.
The Chair concluded
that the August Management Committee meeting would begin to formalise
the work from the away day. She
asked for feedback from the meeting on the proposals as outlined to
inform that meeting. It was important that members felt comfortable for
the Management Committee to go away and develop specific proposals that
would then be brought back to the membership. The meeting agreed with
this proposal.
Information
exchange
Marianne Rigge
(College of Health): It
was reported that the College of Health had recently won
two NHS University tenders, one to find out from patients and
patients groups what they felt should be included in an induction
programme for all NHS staff; the second to look at the components of a
“learning culture;” what was needed to enable learning to take place.
Another piece of work, being undertaken by Judy Wilson, but
managed by the College of Health, was the virtual branch library on
patient involvement within the National electronic Library for Health.
Frances
Blunden (Consumers’ Association);
It was reported that work had just been completed on ambulances
and it had been found that the elastic using of “targets” was taking
place. There was a need for a better focus.
CA was calling for a CHI investigation as there were real
concerns about the huge disparity in performance between different parts
of the country. It
was reported that the work CA had done on Scottish dentists had received
good coverage and was having an impact.
CA had concerns about the sale of gene tests in the High Street.
One company that had been offering these tests had now withdrawn
them. It
was also reported that there was currently a European directive to
facilitate the free movement of health professionals between member
countries. The health profession regulatory bodies were concerned about
the implications of this directive for standards of patient safety etc. CA was quite concerned about it also. It was felt that it could undermine some of the good work
achieved by revalidation.
Roger
Battye (NAPP); It was
reported that a lot of time was being spent in trying to keep up to-date
and one step ahead of the many changes within the NHS.
They were expanding their team of volunteers and had commissioned
the College of Health to develop a training programme for them.
This was a new departure for an organisation composed of a small
group of volunteers. The
training would include looking at patients forums and trying to build a
patient base through the NAPP network to prepare people to take part in
these forums.
Andrew
Chidgey (Alzheimer’s Society);
It was reported that the Society had just held its awareness week
which had included publicising the results of research that had been
conducted over the previous three years.
The research looked at the best methods of providing primary care
services for people with dementia.
The first stage had shown that there was a real lack of training
and understanding of people with dementia amongst primary care
providers. The second stage
would look at recommendations and the types of services that could be
provided. Later
this year the Society would be doing work on mental incapacity and the
needs of people to have rights when it came to their treatment.
It was also reported that with regard to dementia drugs that
could now be prescribed for treating the early and middle stages of
dementia, their Helpline was now receiving much less response from
people with dementia and their carers now that NICE guidance had said
these drugs should be prescribed.
The problem now was that people had to wait to get assessed.
Nevertheless, there had been some progress.
Judy
Walker (Help for Health Trust); It
was reported, as mentioned at previous meetings, that the Centre for
Health Information Quality was engaged in a new programme of work for
the current year. This would be looking at a stream of eight tasks; two
stood out that would be useful for the future – one was to review
training that they had undertaken as part of the work on the interactive
TV pilots that were run by the Department and finished in February 2002.
The review would look at how the training had worked, the lessons
that could be learnt and whether the Department would be rolling this
training out more widely. The
second would build on work carried out by Northumbria University
Business School where they were engaged in the north east region to
develop a quality pack or PALS. This had come to the knowledge of the
team in Quarry House in Leeds who were interested in this
approach on a national basis. This
did not say anything about information quality for information to
patients so the CHIQ had contributed some thoughts on this.
Brian
McGinnis (MENCAP); It
was reported that in the public expenditure White Paper
there was a very useful chapter on involving the voluntary sector
– this looked at money and citizenship.
This could be of interest to member organisations.
Wendy
Garlick (Consumers’ Association);
It was reported that work on the anti direct to consumer
advertising campaign was continuing and they were collating responses to
the patient information project. Thanks
were expressed to those member organisations that had responded.
It was also reported that CA was responding to various
consultation reports and it was becoming more involved in paediatric
prescribing.
Jonathan
Ellis (Help the Aged); It
was reported that HtA had recently been reporting the introduction of
free personal care in Scotland and that there was disparity across the
UK with at least three, if not four, different systems for long-term
care. Very
closely related to this was the underlying issue of the underfunding of
social care and HtA would continue to highlight this in relation to the
care home sector, provision of services within care homes, the quality
of care homes and particularly the quality of health care services for
residents in care homes.
It was also reported that Jonathan had been involved in the
London Patient Choice project; this was the first wave in the extension
of patient choice across the NHS. There
would be a conference later in July looking at how they would be
implementing choice for patients who had been waiting longer than six
months for ophthalmic services within the Greater London area. This
would be introduced in the autumn. This was the first of the roll out of the Patient Choice
programme – this would be extended to other services over the coming
months and years. The
decision had been taken to start with ophthalmology as this seemed to be
one of the most straightforward ones as it did not involve people going
abroad. It was also reported that HtA had just started
publishing a new quarterly journal “Age Today” that was intended to
be a policy briefing on a thematic issue affecting older people.
The first edition looked at age discrimination and covered the
age discrimination campaign and all the policy issues and implications
involved in this. The next
edition, out early in the autumn, would be on social care and the
consequences and effects of underfunding and what needed to be done
about it. Anyone interested in receiving this publication
should contact Jonathan.
Karen
Thomson (Diabetes UK);
It was
reported that the main focus of campaigning had been to get
money for the National Service Framework for diabetes and this rather
felt like waiting for Godot. There seemed to be problems in terms of
developing the implementation properly.
It was also reported that on stem cell research the Pro Life
Alliance was going to be mounting a legal challenge later in the year on
the issue of therapeutic cloning and the House of Lords decision.
Regarding NICE, they would be looking at models of patient
education as a technology appraisal; this was very different from
NICE’S usual approach of looking at drugs and medical devices.
It would be interesting to see how this developed.
It was reported that in terms of the issues that get recommended
to NICE by the Department of Health, it was beginning to look at topics
that the NHS could disinvest in so as to save money.
Gerda
Loosemore-Reppen (RNID); It
was reported that best practice standards for audiology services had
just gone out to consultation and could be obtained from RNID.
RNID was also beginning to develop its position on mental health
services for deaf people. The government had just issued a consultation
document and this was available on the mental health section of the DH
website. It was felt that this would generate quite a bit of controversy
amongst the deaf community and amongst providers.
This was a document devoid of money so it was felt that another
stage would be needed to produce an implementation stage with financial
commitment. It was also reported that RNID was very interested in
the DH initiative on integrating community equipment services that
seemed to focus primarily on nursing and OT type equipment but also
covered sensory equipment. RNID
was attempting to assist the implementation team to get to grips on
this. There were a number of local conferences on this issue and it had
been found that local authorities and health authorities had not yet
located the new money that had been put into this area.
There had been a recent Audit Commission report on equipment and
this had seemed to suggest that there had not been a lot of improvement
in the previous two years as regards quality and process of equipment
services except for hearing aids – not really part of the equipment
agenda anyway.
Nicky
Winton (National Cancer Alliance);
It was
reported that the NICE document had now been published.
NCA had also participated with NICE on a methodology workshop at
the University of Birmingham on how they would get patient impact
assessments for health technology appraisals in the future.
A major project NCA was working on was reaching hard to reach
patients with a view to providing cancer patient information that was
both ethnically sensitive and in the right language (CLAMS –
culturally and linguistically appropriate material);
for socially deprived and older people there was also a split
focus group on patient information. It was also reported that from the point of view of the
National Patients Survey, the Cancer Patients Survey had came out that
week. It was felt that if
this was going to be the model for dissemination this was good news as
it was Trust based, network based and national based so a lot of
information was provided.
Gerry
Mahaffey (Princess Royal Trust); It
was reported that the London Modernisation Board, after some
considerable work by carers organisations in London and carers
themselves, had agreed to second someone from a now defunct health
authority to come up with a strategy for carers in London.
PRT was pleased with this health and social care focus.
It was also reported that there had been a change in the
statistics; around five
years one million carers disappeared from the figures.
Another million carers had recently been “found” so that the
figure was now 6.8 million carers in the new General Household Survey.
It was hoped that there would be more accurate information in
2003 from the census.
Nicky
Joule (Neurological Alliance); It
was reported that the main focus of NA’s work remained the NSF for
long term conditions. This
had recently been re-announced with the scope clearly defined.
It was quite clear that this was now largely going to be about
neurological conditions and NA was very pleased about this.
Progress continued to be very slow though.
Publication had been due in 2004 but work had not yet started.
The next stage would be to set up the external expert reference
group (the ELG) and in response to a question in the House of Commons it
had been announced that this would be established “in the autumn.”
This was very vague.
It was also reported that in relation to the NSF work –
although everyone at NA would be working on this -
the NA now had a post funded by the DH – an NSF Project Officer
– this would probably be
a four day a week post to be advertised in early September – based in
the Brain and Spine Foundation in South London. It was also reported that the standards of care
work was developing and NA had launched revised standards of care in May
and there had been a number of events around this.
NA’s AGM would be held in October and they had just heard that
the Minister, Jacqui Smith, would address this.
Judy
Wilson, (NelH); It was
reported that, after a pause, they were now developing an electronic
library on user involvement and in September an update would be sent
electronically to the membership. It
was thought that by the autumn a pilot website would be up.
Judy
Wilson (Quality Task Force); Judy
reported that she had become a member of a working group on
communication skills and there would now be a requirement for NHS staff
to train in communication skills.
This was being gone into in a lot of detail and was very
positive.
Liz
Thomas (AVMA); It was
reported that they had just celebrated their 20th anniversary
at their annual conference. AVMA
was waiting for the White Paper on clinical negligence. This was due out in the next couple of months.
AVMA had received funding for a mediation project to look how
mediation could be used in trying to resolve clinical disputes.
It was also reported that one of the Trustees was about to begin
a module for medical students on medical accidents - this was important
because most medical students knew very little about this issue or how
to respond when they came out of medical school.
AVMA was also looking at how small clinical negligence claims
(under £15,000) could be resolved where there was no money available
through public funding.
Imelda
Redmond (Carers UK); It
was reported that they had been spending a lot of time trying to
convince the NHS they it needed to take on board the whole issue around
carers. They had been
talking to the NSF Programme Directors.
The NHS did not understand the impact that the design of their
services had on families and Carers UK were spending a lot of time
getting this message over, with some success.
Carers UK was also looking at the extra money that was going
through Social Services that would be allocated directly to local
authorities to spend on hospital discharge procedures.
They were interested in how this would roll out and also in the
growing intermediate care. If
this were not managed properly then it would not have any lasting impact
for carers. It was also
reported that a very interesting piece of research on carers and mental
health had recently be published.
Finally, Carers Alliance was convened at Carers UK and this was
being revamped. It
was similar to the Patients Forum but without the resources. The focus
of the meetings was carer policy. If
any members were be interested in attending they should contact Imelda.
Date
of next meetings
AGM
5th September, 2002
13th
November, 2002
Appendix
Harry Cayton, Director for Patient
Experience and Public Involvement, Department of Health
Harry Cayton began by
saying that he was very keen to:
- keep
in touch with as wide a range of patients’ organisations as
possible
- be
a conduit into the Department of Health for the concerns and issues
of Patients Forum members
- inform
the meeting about what the Department was trying to do on these
issues
He gave an outline of
his two days’ a week on a year’s secondment post within the
Department stating that ‘patient experience’ and ‘public
involvement’ might arguably be opposite sides of the same coin but
within the Department improving the patient experience was one specific
stream of work and public involvement in the Health Service through a
range of new structures and new mechanisms was a different but linked,
stream of work.
Improving the patient experience
It was reported that
this had one very simple aim and this was why should going into
hospital, going to see the GP, having care in the community, be an
unpleasant experience? Being
ill was sometimes unpleasant, having treatment was sometimes unpleasant
but there was absolutely no reason why interacting with the Health
Service should be unpleasant. In
fact, it should be a pleasant experience in the best sense. There was a
real consciousness that for many people the whole business of getting to
hospital, getting to the GP, getting an appointment, how people dealt
with them, how people talked to them, the environment they were waiting
in, the environment they were treated in was not particularly good. There was a programme of work called ‘improving the
patient experience’ that was part of the Department of Health’s
delivery targets with Downing Street.
Improving the patient
experience fell within the Nursing Directorate and also fell within the
remit of the junior Minister, David Lammey This was not to say that the
people involved, the Nursing Directorate, David Lammey, and before him,
Hazel Blears did not take it extremely seriously, they did. There were
champions in the Department, both in the Chief Nursing Officer herself,
Sarah Mullaly, and the Ministers. Before
taking the job Harry had spoken to Ministers and made it clear that if
he went in to the Department he would have the backing both of the
ministerial team and of senior people in the Department.
In his brief time at the Department, two months of two days a
week – representing about two weeks’ work so far – he had had no
suggestion that people were anything other than right behind what the
issue was about.
Harry spoke about what
could or should be done to improve the patient experience.
He said there were five key areas that had been looked at through
research and focus groups and in addition he would welcome Patients
Forum members comments on these areas:
1.
Access and waiting
Access included public
transport and car parking and not just getting an appointment.
He felt that focusing
on length of waiting was not the only way to deal with this issue.
An important part of the patient experience was how they waited.
It was important to have good information when waiting, knowing
the reason for waiting, have updates on how long the wait would be and
also, to use the waiting time to improve people’s health.
A thoracic surgeon had recently described to him a programme in
Birmingham where, for people waiting for lung surgery for bronchial and
lung cancer etc, the waiting time was used to improve their health so
that they would be fitter for their operation, more likely to benefit
from the operation and more likely to recover from their operation. This
was a key part of their programme.
Generally waiting was thought of as ‘dead time’ and he
thought that in some circumstances it was possible to think of waiting
as something that could be used.
Another aspect of
waiting was that the waiting area should be clean, safe and comfortable.
Safe was particularly important.
In some of the older hospitals, Victorian, or built in the 1950s,
it would be difficult to make them comfortable but they could be made
clean and safe.
3. A safe, clean comfortable environment
A further aspect of
waiting was the design of waiting areas.
When architects designed hospitals they talked to doctors, nurses
and administrators about what they needed for their working environment.
They did not talk to patients about what they needed for their
waiting environment, for their living environment and for their service
environment. He
stated that NHS Estates was working very hard and had some strong
patient group links on the design environment and on single sex
accommodation, privacy and dignity. He had recently attended a meeting on single sex
accommodation and privacy. What
had come out most strongly from patients was that it was other patients
who bothered them not noise from staff.
This had also been shown in the Patients’ Survey.
One person, talking about privacy around beds, had commented that
he could not understand why curtains around beds were always thin. What
were needed were thick curtains that would cut out the light and more of
the sound. Harry
felt this was a very reasonable point.
4.
Information
Harry reported that
access to information always came out as patients’ key priority in
questionnaires and surveys. He included in ‘information’ dialogue and
exchange of information and the flow of information both ways.
5.
Good relationships
Harry contrasted the
reception areas of hotels and hospitals/GP surgeries.
In a good hotel, he said, the reception staff always stood behind
the desk so that the contact between staff and customer was at eye
level. In an NHS building
reception the first thing to do was to get past security.
The second thing was to look at the top of the member of
staff’s head as they sat behind a high barrier and did not look up.
He considered that reception in NHS buildings was to do with
keeping people out and the message sometimes given was that people from
the outside were dangerous and they needed to be controlled and
regulated.
Harry
reported that there were a lot of issues around relationships – how
people
talked to people, how people were dealt with; how people were
communicated with and how good relationships were built.
Harry added that he did not want to exaggerate the problem; the
cancer patients survey had come out with very high scores for being
treated with dignity, courtesy and respect by staff.
The average scores had been in the 80s and 90s with highs of 98%
and lows of 60%. This showed that there was room for improvement in some
trusts. The fact that
some hospitals were able to deliver very high levels of service gave
hope that there were ways of getting others up to that standard.
4.
Co-ordination of care –
the patient path through the system
It was important to
smoothly co-ordinate the experience of people being cared for through
the system, from seeing the GP, to being transferred to a specialist –
if that was what was happening – to getting an appointment, having
surgery or other treatment and then having discharge systems so that
people knew what has happening to them, felt comfortable about what was
happening to them and, to some extent, were in control of what was
happening to them.
The public involvement agenda
From Harry’s
perspective this included PALs, Patient Forums and, in particular, the
Commission for Patient and Public Involvement in Health.
This last was being set up as fast as possible and the interviews
for the Chair would be held on July 19th.
Very soon afterwards would come the appointment of the Chief
Executive and the commissioners and the core staff.
The intention was that the Commission should be functional by
April 2003. The Commission would be based in Birmingham. He felt
that this location was intended to give the message that the Commission
was rooted in communities rather than a glamorous, London great-and-good
body.
Harry reported that
there was a second part of the public involvement agenda and this was
related to information. All
trusts and acute trusts would produce a ‘patient’s prospectus’ -
although he hoped it would be possible to get rid of the academic
sounding word ‘prospectus’. This
would be a simple leaflet that would be door dropped to every home and
it would contain basic information about the local health services in
that area. It would
list what was being spent on community services perhaps with a pie
chart, give the results of the Patients’ Survey for that trust, the
priorities that the trust had decided on for improvements and
development, information on how to get involved, through the Patients’
Forum and other meetings and would list the names and addresses of local
health service contacts.
Trusts would also produce an annual report.
Harry reported that he
had defined his three priorities: first
“Tell me the truth.” This
had to do with information, communication and dialogue.
He felt this should operate on a personal level between the
patient and the people providing them with health care. This had to do
with mutual respect and truthfulness and included questions like “how
good a surgeon are you?” to “how well is the health service
doing?” As a
member of the public he would like the truth.
“Tell me the truth” was a higher standard than it might first
appear.
The second priority was
“Trust me, I am a patient.” This
had to do with the expert patient programme, about identifying how
patients could take control of the care agenda in a way that many,
particularly those with long-term care conditions, wanted them to do.
He said that some doctors thought an expert patient was someone
who could do what the doctor wanted;
this was not his idea of what an expert patient was.
There was still a lot to fight for in the culture around this.
The third priority,
around the public involvement structures, was “Nothing about us
without us.” The NHS was
our health service, we owned it, it was there to deliver services to us,
not to anybody else and decisions should involve and include us.
Harry described the NHS
Strategic Board that met quarterly and was composed of the top people in
the Department plus the new directors of the Strategic Health
Authorities and the Tzars - about sixty people in all.
A bid had been made from the Patient and Public Involvement
Programme to the Chief Executive that there should be a two hour slot
for patient and public involvement on the agenda for the board meeting
in September and he added that patients would attend. .
Secondly, he was organising a meeting early in the autumn, and
letters would be sent out to everyone, for people involved in user
groups in the health service. He was very keen that the power and professionalism of
user groups was not lost in Patients’ Forums and that trusts would not
be able to say that they did not need user groups any more. He felt that mental health user groups and many others were
really important and that a way had to be found to ensure that they had
a proper place in the new system.
Harry concluded by
saying that he really wanted to hear from people and would be very happy
to come back to the Patients Forum again in the future particularly if
there were a serious issue that member organisations felt was not being
taken notice of.
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