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MINUTES
OF THE PATIENTS FORUM MEETING HELD ON THURSDAY 22ND MAY 2003
AT THE GENERAL MEDICAL COUNCIL Present:
Jonathan Ellis
–Chair (Help the Aged); Karen Thomson
- Joint Vice-Chair (Diabetes UK); Alison
Morris (MND Association); Saranjit Sihota (National Consumer Council);
Wendy Garlick (Consumers’ Association); Paul Jones (Consumers in NHS
Research); Sally Gordon Boyd (Royal Society of Medicine); Barbara
Brewster (Sickl Cell Society); Rachael Childs (Prevention of
Professional Abuse Network); Jonathan Coe (Prevention of Professional
Abuse Network); Sheila Dane (Long-Term Medical Conditions Alliance);
NikkiJoule (Neurological Alliance); Brian McGinnis (MENCAP); Mike Took
(Rethink); Liz Urben (British Red Cross) Apologies:
Sonia Home (Retinoblastoma Society); Carol Hemphill (Surrey Ambulance
Service); David Pickersgill (BMA); Paula Lloyd-Codner (Heart of
Birmingham Teaching PCT); Alison Soliman ( Dementia Relief Trust); Hew
Helps (Chiropractic Patients Association); Beverley Beech (AIMS); Mikki
Willmott (Age Concern); Judy Walker (Help for Health Trust); Terence Joe
(National Patient Safety Agency); Len Tyler (Royal College of
Paediatrics and Child Health); Simon Kenton (West Lancs PCT); Kristin
McCarthy (Doctor Patient Partnership); Eileen Neilson (Royal
Pharmaceutical Society of GB); Marlene Winfield (NHS Information
Authority); Sharon Leaver (Action on Elder Abuse) Speaker:
Christine Farrell – Department of Health overview report on the
Health in Partnership Research
Programme – lessons for policy and practice See
Appendix Minutes of last meetingThe
minutes of the meeting held on 12th March 2003 were agreed. Matters arisingMeeting
with Commission for Patients and Public Involvement in Health (CPPIH).
It was strongly urged that a meeting be set up with CPPIH as soon
as the tendering process was completed.
It was reported that the Patients Forum had approach CPPIH for a
meeting date on several occasions and was now pressing for a meeting in
October (they could not
make the AGM on September 4th).
In the absence of an early meeting it was suggested that we ask
for a written report outlining the progress of the tendering process.
It was agreed to request this. Chair’s report
·
Increasing
diversity of membership
It was reported that
there had been a meeting with the CRE to explore some of the ways in
which the Patients Forum could make itself known to a more diverse group
of patient organisations. Some very interesting ideas had been suggested that would be
taken forward in order to reach some of the groups the Patients Forum
does not currently reach and how to engage with some of the patient
interests that we currently do not engage with.
We had also contacted the Disability Rights Commission who had
suggested that we put an invitation to join the Patients Forum in their
bulletin. This had been
done. In
both these ways it was hoped that we would be able to address one of the
strategic objectives identified last year in terms of increasing the
diversity of our membership. ·
Meeting
with bill team
A number of members had
attended the meeting at the Department of Health with the bill team
several weeks previously to look at the new Health and Social Care Bill
and the various issues emerging from that around foundation trusts,
regulators, complaints, dentistry and recovery of NHS costs.
A second meeting had been set up to look at the issue of
complaints specifically and this would be on June 3rd.
There would be further opportunities to feed into the whole
process as the bill progressed and information would be circulated about
this. ·
Patient
Choice
It was reported that
Rob Thompson had spoken about Patient Choice at the last seminar in
March talking about how the initiative was progressing in the Department
and picking Patients Forum brains on how it could develop in the future.
One of the issues that emerged from this discussion was an
invitation from Rob for the Patients Forum to come up with some ideas on
how we might, as a network of patient organisations, wish to progress
work on this front. Since
then the Management Committee had been developing some outline ideas to
send to Rob. This covered who the Patients Forum was (a network) and
what we were there for; it
also teased out some of the issues that emerged from the discussion on
Patients Choice at the seminar. Finally
there were some tentative ideas on how the Patients Forum might play a
role in facilitating the involvement of its members in developing and
shaping this agenda around Patients Choice during the coming period.
The Management Committee was very keen to have the views of
members on this paper and it had been circulated via email. ·
Future
Builders
It was reported that at the March seminar
Rob Thompson had mentioned a new pot of money that might be emerging and
today the consultation “Future Builders” had arrived at the Patients
Forum office. It was suggested that members might wish to com ·
Funding
It
was reported that we are still waiting to hear from the Charity
Commissioners. Information
exchange Alison
Morris (MND Association): It
was reported that along with a couple of other organisations, the NSF on
Long-Term Conditions remained a focus.
They were very keen that MND was not lost within that NSF work
and they had been drafting a standard for rapidly progressing conditions
so that the needs of people with those conditions were addressed.
They had also recently carried out their annual tracking survey
of members where they were asked about their experiences of health and
social services. This was all the way from diagnosis through to end of life
decisions. It
addressed questions like: ”were you told the diagnosis in a private
place with somebody with you?” “Was it told sensitively?” “How
was your quality of care provided?” “Were you satisfied with the
services your received?” This
survey would be published shortly. Lastly, their annual Health and
Social Care Professional Conference would be held in Birmingham in June.
This usually attracted about three hundred professionals and was a big
event for them. Wendy
Garlick (Consumers’ Association):
It was reported
that they were still busy on retaining the ban on direct to consumer
advertising. This was heating up again as health ministers would be
meeting on 2nd and 3rd June for their vote.
An article would be going in the patient-friendly edition of the
BMJ on 14th June. They
were also working with the Lord Chancellor’s department about privacy
of information and data sharing and a consultation document was out at
the moment. They were also
continuing with their work with the NHS Information Authority on patient
records and Frances Blunden was busy with the Health and Social Care
bill. Paul
Jones (Consumers in NHS Research): It
was reported that the organisation was about to change its name
to the less unwieldly title of “Involve” from 1st of
July, with the strapline “Involving people in NHS social care and
public health research.”
They were also about to hold a commissioning workshop and this
was for commissioners seeking to involve service users and consumers in
the research process and obtaining expert evidence from consumers who
had been involved in the research process.
A reportback on this workshop would be available on their website
and through their newsletter.
It was also reported that they continued to make their
publications more accessible: they
were reprinting and revising their Guide for Involving Consumers that
was specifically written for researchers. They were in the process of
tendering (for £140,000) to evaluate the impact of consumers
involvement in eleven PCTs in London.
They were also tendering for £15,000 to conduct a scoping study
“User led research – what is it and how is it done?”
This was only open to user led organisations or service user/carer
researchers and had a closing date of 23rd June.
It was also reported that their Readers Panel was up and running
and it was providing real evidence of how it was possible to involve
people who possibly were quite ill and unable to leave the house in
doing something practical. They
were also working very closely with PCTs and NHS Trusts to raise their
profile and to raise the profile of user involvement with research and
they would be hold a research ethics follow-up workshop in the autumn.
This was a piece of consultation they had been asked to do by the
Department of Health with social care service users Sally
Gordon-Boyd (Royal Society of Medicine):
It was reported
that Sally was speaking for herself at the meeting because the doctors
could not reach a consensus on anything (although they were unlikely to
put it quite like that!). Their
role had been mainly one of education and they were concerned that they
were not listening enough. They
wanted to listen and sending Sally to the Patients Forum meetings was
part of this. They would be interested in any patient organisation
writing to them expressing interest in their Open Days as they were not
sure how to get the message around. Barbara
Brewster (Sickle Cell Society): It
was reported that they were involved in three areas of work: firstly
their AGM would be held on 21st July and people were invited
to attend; secondly, the
Eighth National Sickle Cell and Thalassaemia Awareness Day was on July 4th
and the different local centres would be holding a month of activities.
At the Sickle Cell Society itself they would be holding a church service
on July 6th at 2.45pm at St. Stephen’s Church to remember
all those who had died from sickle cell and all those who were suffering
from the condition. Lastly, they were still working with the national
screening programme and from 2004 it was the government’s intention
that every pregnant woman and new-born baby would be screened for sickle
cell. Jonathan
Coe (Prevention of Professional Abuse Network – POPAN):
It was reported
that they were continuing to do a lot of work on the Sexual Offences
Bill and this was progressing reasonably well through Parliament –
coming up to its report stage.
They had produced a number of briefings on this and people were
invited to request copies. They
were concentrating on abuse by care staff.
It was also reported that they were launching a new project.
Historically POPAN had largely worked with the victims and
survivors of abuse by healthcare professionals;
this new project was about providing information and advice to
anybody concerned with the issue be they professionals who may have
witnessed abusive practice or friends/relatives.
They wanted to spread awareness about this at the moment.
They were continuing to face severe funding difficulties.
It was also reported that a lot of work was being done on a
report on the prevalence of professional abuse in the UK.
Little was known about prevalence.
There were currently five government enquiries into abusive
medical practitioners and they had also discovered four criminal
investigations into sexual abuse by GPs in the north west of England.
They had been pulling facts and figures together from various
professional bodies and would continue that work and hoped to produce a
report later this year. Sheila
Dane (Long-Term Medical Conditions Alliance – LMCA): It was
reported that they had recently held their AGM and Forum and this had been very
successful. The keynote
speaker, Harry Cayton, gave a very useful address.
This had been on the same day that he had appeared in “The
Times” for his comments made in Cardiff so it was an interesting
address, with mention of his 11.45pm call from Downing Street, before
going on to talk about his work with the Department of Health.
They were currently consulting members about policy priorities
based on some work that had been done at the AGM – a very useful
session – and this would shape future policy work.
Patient Forum members who were also members of LMCA were
requested to respond to the consultation that had gone out the previous
day. It was also reported
that work was continuing on the NSF on Long-Term Medical Conditions and
their other big area of work was on self-management.
Over twenty national charities were now delivering the chronic
disease self-management course and LMCA continued to be the leading co-ordinating
body for the voluntary sector and was continuing to work with the Expert
Patient Programme to ensure that quality programmes were delivered
across both the voluntary and statutory sectors.
It was also reported that they would be having a meeting with the
Department of Health on 13th June when they would be
discussing proposals for the setting up of a compact between the
voluntary sector and the EPP programme to address some of the issues
that arisen over recent months on the pilots. Nikki
Joule (Neurological Alliance):
It was reported that they had launched “Neuro Numbers” about a month
previously published in association with the Association of
Neurologists, the Royal College of Nursing and the Society of British
Neurological Surgeons. This
was a summary of work they had done on the number of people with
neurological conditions in the UK.
For the first time this encompassed the entire membership of the
constituency of the Neurological Alliance, the major addition being that
people with migraine were included.
This had been agreed within the Neurological Alliance and the
professional organisations they worked with.
Ten million people in the UK have a neurological condition of
which 350,000 require help with most of their daily activities; over a
million are disabled by their neurological condition and over eight
million are affected by a neurological condition but are able to manage
their condition on a day-to-day basis. There was also information about service
usage: 10% of visits to
Accident and Emergency Departments are for a neurological problem, for
instance. Brian
McGinnis (MENCAP) It
was reported that all the regulatory bodies were producing new final or
draft documents at the moment, NMC, GMC etc. and that there was a lot of
interesting material there. It was also reported that there had been an advert, at the
back of the HSJ, for the post of Director of Learning Disability for the
new Patient Safety Agency and that this was very good news. Regarding MENCAP, there
were two projects they had been involved in: myopia in people with Downs
Syndrome with Cardiff University. This was coming towards the end now,
with Community funding. There
was also a new project, the prescription of anti-psychotic medication
for people with learning disability with Birmingham University.
Mike
Took (Rethink): It
was reported that two of their preoccupations were involvement in the
Mental Health Alliance on the Mental Health Act and the Making Decisions
Alliance on the Mental Incapacity Act. This was quite a frustrating
experience for two reasons, first that it was not yet known when the
bills would come out and in both cases they had been going to meetings
with the departments, (DH for the Mental Health Act) (the Lord
Chancellor’s Department for the Mental Incapacity Act) and they were
not being listened to. They would be able to say that they had involved
these various organisations but no listening was going on.
With the Mental Health Bill, having mad pride and the Royal
College of Psychiatrists on the same side provided the full spectrum of
opposition to this bill. Liz
Urben (British Red Cross): It
was reported that members might not be aware that they provided a number
of services that patients could access, e.g. home from hospital, lending
medical equipment and also providing transport.
They also provide a simple massage service in hospitals for
patients and their carers and skin camouflage across the UK.
BRC was a new member of the Patients Forum and they had joined
because they were developing user involvement and would find it useful
to hear what other organisations were doing on this. Karen
Thomson (Diabetes UK): It
was reported that Diabetes Week would be at the beginning of June and
the public campaign this year was labelled “Bloody Serious” and was
about blowing the myth of diabetes being mild.
A key current issue was home blood glucose testing for people
with diabetes, a tool to assist self-management.
They had started to see postcode prescribing being introduced by
PCTs following a health technology assessment report published in 2000.
Whilst the report itself was fairly well balanced the summaried
versions that appeared were rather less balanced and so people had seen
it as an excuse to cut the prescribing.
In some places PCTs were telling GPs to review it.
This was all right because in some cases people could be testing
more often than they needed but in other areas blanket bans were being
imposed. People with Type 1 diabetes were being told they could only
test once a day and people with Type 2 once a week – this was pretty
pointless. It was also
reported that they had received £200,000 from the Department of Health
to support user involvement for the local implementation of the NSF for
Diabetes. They would be
working jointly with the DH and Sue Roberts, the National Clinical
Director for Diabetes in developing that. It was also reported that the National Screening
Committee had come out with guidance on screening for retinopathy. This covered areas such as the specification for cameras, the
training needed by operators and information on how to set up a
programme. This was an “idiots how to guide” for PCTs to implement
and funding was attached to it as part of the NSF.
Date of next meeting
Wednesday 16th
July 2003 Health
in Partnership Programme Christine Farrell Note: the slide presentation follows in appendix 2. Slides 1 – 9 (the background to the project) were not covered in the talk. Christine Farrell began
by saying that in terms of the policy relevance of the findings that
were emerging from the Programme she did not anticipate that Patients
Forum members would learn anything that they did not know about already.
There were one or two interesting findings from the research but
basically a lot of the findings reinforced other research and in terms
of policy development, collectively what the twelve projects had done
(slides 5 – 7) was to provide a scientific body of evidence to
underpin those policy changes.
What was being done now was to bring together all the findings
and publish a paper by the end of the year.
This would not be just a summary of all the findings of the
twelve projects but an attempt to bring together the weight of the
evidence. The real value of
a programme of research such as the Health in Partnership Programme was
that each project could contribute to the weight of the evidence. One of the other things
they had tried to do was to identify themes that were relevant to policy
development. Things had changed massively in the previous three to
five years in relation to patient and public involvement and that was
great news.. In
Christine’s opinion, the research evidence underpinned almost
everything that was happening on the ground in the NHS in relation to
patient and public involvement. In the analysis that
Christine was currently undertaking, they were using the structure the
Quality Task Force was imposing on its own work of three key themes to
move ahead on policy improvements in the NHS.
Christine was using the same themes to include health in
partnership patient and public involvement sets of issues and policies.
These were (slide 10): The right culture · for patient centredness · for public involvement ·
for staff The right structures
and processes · in primary care ·
in staff training The right information · for patients ·
for staff All those who worked in
the area of patient and public involvement knew that all the complaints
and issues that patients had about using the NHS were really aspects of
the culture of the NHS and it had been good to know that the Quality
Task Force had taken on that message. Within
the cultural change that they were trying to achieve were areas like
professional and managerial attitudes and the fact that the NHS
organisations were not learning organisations and they found it very
hard to change. All
those kinds of issues came within the changing of culture towards
patients. They had
also taken on board the very important message about changing the
structures and the processes of the NHS.
Some of these structures were changing by law now but were the
processes that patients went through changing for the better? Findings of the research
(slide 11)
The numbers in brackets
refer to the number in the list of commissioned projects (slides 5 –
7). One of the things that
would have an effect on policy development was that two projects looked
specifically at training interventions for GPs.
As a result GPs became much better at communicating and involving
patients and communicating risk and discussing the treatment options.
Secondly, the patient levels of satisfaction about the
consultation increased. There is no other evidence around that this kind
of training Intervention actually
works. One of the criticisms of these two projects was
that there was no evidence of any change in the health status of the
patients involved in the trials. The
fact that neither of these two projects could demonstrate that the
patients’ behaviour had changed in order to improve their health
outcomes was seen as a criticism. Christine
considered it would be very hard to prove that in these kinds of
research projects and that there needed to be longitudinal studies in
order to demonstrate a change in the health outcomes of patients.
Her feeling was that if the patients level of satisfaction
increased in the consultation with their GPs then that in itself was
important. As regards measures of
involvement, this was quite important.
It was one of the thrusts of the modernisation agenda, mentioned
in the 1997 White Paper, that the NHS had to become more efficient and
more effective. There had to be some form of measurement
to determine progress and one of the projects demonstrated that
indeed there were no satisfactory measures of patient involvement (ie
individual patient consultations).
Almost all of the projects that dealt with individual care
recognised that consultations between a patient and a GP or a patient
and a nurse were such a complex interaction that there was not yet a
full understanding of the process and measurement was difficult in these
situations. Christine
said that this made her feel somewhat uneasy about the kinds of targets
the government was setting in order to find out how NHS organisations
were involving patients. One of the project’s major findings was that
if it was believed that shared decision-making and involvement in
individual consultations was the right thing or a good thing to do, the
only way to achieve a cultural shift was where there was a push from
health professionals and a pull from patients.
This was one of the most important findings for those Patients
Forum members actively working to help people to become involved in
their own treatment.
The push/pull approach was also needed with regard to nurses who,
although generally considered to favour shared decision making were
often protective aboutpatients, and saw themselves as patient proxies.
What all the projects were saying was that all health
professionals needed specific training to deal with the techniques of
good communication and good practice in relation to involving people;
this was not just about communication, it was also about
attitudes. User involvement
Christine said that one
of the findings, probably from project 12 (developing and evaluating
best practice for user involvement in cancer services)
was that user involvement seemed to work best and make most
progress when it was done in association with voluntary organisations.
Some other evidence from projects 8, 9 and 10 also showed this. What happens next?
The final report that
would distill all the findings was being written now.
It was anticipated that this would be published later in the
year. Christine was not sure whether they would use the framework used
in the presentation; the
structure had not yet been finalised.
There would be sections on patient involvement and all the
evidence about what patient involvement meant.
Summing it up, patients mainly saw involvement in their
individual treatment and care as “interaction.” For a summary of the
findings see www.healthinpartnership.org SLIDES Appendix
2
Slide
1
Health
in Partnership
Patient
and public involvement in health service decision making
Slide 2
HEALTH IN PARTNERSHIP:
BACKGROUND TO THE RESEARCH INITIATIVE
Purpose
of DH Policy Research Programme (PRP):
•
To
provide a scientific basis for health, social care and public health
policy
Approach:
•
Directed,
needs led programme
•
Research
questions identified in consultation with policy, research and service
communities
•
promote
high quality, rigorous research into major policy issues
Slide
3
HEALTH IN PARTNERSHIP:
BACKGROUND TO THE RESEARCH INITIATIVE
Purpose
of the Initiative:
·
to
inform the Government’s policy agenda to promote patient & public
involvement at all levels in the NHS
The process of
commissioning informed
& guided by commissioning group of
-
academics,
-
voluntary organisations,
-
patient groups,
-
NHS managers,
-
professional
-
practitioners & DoH officials.
Voluntary
groups and Patient organisations included:
The
College of Health, The RNIB, The Patients’ Forum, The National
Consumer Council
Slide 4 HEALTH IN PARTNERSHIP-
BACKGROUND TO THE RESEARCH INITIATIVE
The
comparison & evaluation of different ways of involving patients
& their carers, in decision making about their own treatment
Exploration
of different ways of involving patients & the public in the process
of decision making related to service development
Identification
of the implications of this for the education, training & support of
staff in health & related services
Slide
5
Commissioned
Projects: Category
1: Individual treatment & care
Slide 6 Commissioned
Projects: Category
2: Decisions about service
development
Slide
7 Commissioned
Projects: Category
3: Implications for
training and development
Slide
8 Health in
Partnership commissioned projects-diversity Contexts
include:
•
primary
care (1,3,4,5,6,7,8,9,10,11,12)
•
hospital
care (2,3,6,7,12)
•
the
community (3,4,6,8,9,10,12)
Themes
include:
•
patient
centred care (1,3,5,6,11)
•
patient
& public involvement (2,3,4,8,9,10,12)
•
shared
decision making (3,5,11)
•
evaluation
of interventions to promote patient & public involvement(1, 4,
5,11,12)
•
special
groups
*
children
(2,7)
*
cancer
patients (3,12)
*
people
with communication difficulties (6)
*
family
planning (3)
*
homoeopathy
(3)
*
genetic
counselling (3)
*
diabetic
patients (3)
Slide 9
HEALTH IN PARTNERSHIP-
PROGRESS
•
Final reports received from all 12 projects
•
Publications:
one report published
(9) Articles submitted to refereed journals & in preparation. •
Presentations
made to scientific
conferences & to local, regional and specialist groups within the
NHS:feedback to participating individuals & groups. •
An
overview group
established to: *
analyse &
publish the evidence from all 12 projects bringing together the themes
& issues of interest to policy makers and practitioners. *
promote wide
dissemination within the NHS Slide
10 HEALTH IN PARTNERSHIP & THE AIMS OF THE
QUALITY STRATEGY The right culture: ·
for patient centredness ·
for public involvement ·
for staff The right
structures and processes:
The right
information:
Slide 11
KEY
MESSAGES FROM THE RESEARCH: achieving a cultural shift -individual
patients •
a
patient centred approach: evidence
that professional training is effective in increasing patient
satisfaction & the patient centredness of consultations in primary
care (1 & 11) •
patient
preferences are for
consultations where GPs listened to them, provided easy to understand
information & shared the decision-making (3,4,5,7,11) •
measures:
no gold standard or
satisfactory measures of patient centredness or participation exist (3)
but project 11 developed & validated 2 new methods of measurement.
(process) •
a cultural shift is most likely to happen when there is push from
professionals and pull from patients Slide 12
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