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MINUTES
OF THE PATIENTS FORUM MEETING HELD ON 14TH JULY, 2004 AT
CONSUMERS’ ASSOCIATION Present: Jonathan Ellis – Chair (Help the Aged); Marlene Winfield (National Programme for IT); Sally Gordon-Boyd (Royal Society of Medicine); Elisa Pruvost (CHRE); Matt Burrows (Diabetes UK); Philip Hurst (Age concern England); Eileen Neilson (Royal Pharmaceutical Society of Great Britain); Toby Williamson (The Mental Health Foundation); Beverley A. Beech (AIMS); Jackie Glatter (Consumers’ Association); Sally Brearley (Health Link); Peter Walsh (Action against Medical Accidents (AvMA); Brian McGinnis (L’Arche UK); Alison Railton (MND Association); Judith Wardle (Continence Foundation). In attendance: Diana Basterfield (Patients Forum) Apologies:
Liz Urben (Red Cross); Janice & Bill Kent (reMEmber); Gerda
Loosemore-Reppen (Sign); Hew Helps (Chiropractic Patients Association);
Angeline Burke (NMC); Carole Myer (RCPCH); Carol Herrity (Mencap); Clara
Mackay (Breast Cancer Care) Speaker:
Simon Williams, Patients Association
(see appendix) Minutes of the last
meeting The minutes of the meeting held on 20th May were agreed and matters arising would be taken in the Chair’s report. Chair’s Report Management Committee
Away Day. It was reported that the MC had met in June to have a
look at the present lie of the land and at the future direction of the
Patients Forum now there was the additional security of Section 64
funding for a further three years (subject to funds being available in
years two and three). As
part of that discussion some of the positive and negative changes of the
previous two years were looked at.
It was felt that the current environment was very different to
that two years earlier and it was necessary to see where the Patients
Forum now fitted in. There
was discussion of the new opportunities available for the Forum to
continue to contribute and to enhance the degree to which a service was
offered to the members, and also create opportunities for that dialogue
and that discussion.
These opportunities would include the yet more changes in patient
and public involvement expected and also devolution within the Health
Service and how that related and whether the Patients Forum should
change its name to avoid confusion with the local PPI Forums. Some ideas
as a starting point were proposed for the future. Following the away day
when the MC met to think of ways of driving that agenda forward, it
became clear that these ideas needed to be run by the membership in more
detail to get member input and to get a sense of what members would
value from the Patients Forum and the service the PF could offer
members. In this connexion, it
was also reported that Meredith Vivian from the Department of Health
would be speaking on public involvement at the AGM on 2nd
September and how things would change in the light of recent
announcements and news reports.
This event would also be an opportunity to get members’ input
into the future direction of the Patients Forum and ideas from the away
day would be circulated to assist that discussion. This would be a
collaborative and membership led approach and a very appropriate process
for an organisation like the Patients Forum. It was also reported
that a letter had been sent to the Secretary of State, John Reid, in
relation to the recent news reports on arms length bodies. This
expressed concern about the lack of public consultation around the
decisions that were being taken and wanting to secure some sense of
commitment to consultation and participation, particularly of patient
organisations and patients themselves in any decision and the
implementation of any decision. It was felt that there was an
understanding about the need for efficiency and cost effectiveness yet
this was being driven forward at the expense of transparency and
openness. There had been a
holding letter from the Department as a response. It was also reported
that there had been a meeting with the Department of Health and the Home
Office around the ID card agenda and how that was moving forward.
There had been a hurriedly put together small workshop at which a
few member organisations participated.
There had seemed to be a lack of clarity between what the Home
Office was trying to deliver and where the Department of Health were
coming from on the approach to ID cards.
There was a lot of discussion about whether ID cards should be
used to secure entitlement or to demonstrate entitlement to public
services and there were a lot of issues falling out of that relating to
access to health care. Following some
discussion it was proposed that the Patients Forum could offer the
Department of Health some space to explore the implications of what the
Home Office was proposing, assuming that the Bill was going ahead. Information
Exchange
Marlene Winfield
(National Programme for IT): It was reported that a lot was happening. On 2nd
July the first patient had sat in a surgery in north London and was
referred to hospital and booked an instant appointment on line. This was gradually going to be rolled out
until by the end of the year all patients should be able to book on
line. The electronic health record would follow this and patient
access to it and electronic prescribing.
A vast public information initiative was being put together to
tell people what was happening and the implications for their data –
what steps they could take to exercise control over who could see their
data etc. This would
begin in the Spring just before people’s information would be capable
of being shared. Marlene
would like a further opportunity to speak to the Patients Forum about
these developments and seek views. Elisa Pruvost
(Council for Healthcare Regulatory Excellence):
It was reported that they had changed their name. It was
formerly the Council for the Regulation of Healthcare Professionals.
It was also reported that their second consultation would be
coming out very shortly on their power to change healthcare
professionals regulatory rules.
This was a power that would be a ‘power of last result’ that
they do not anticipate using but needed to consult on what the process
would be. The
CHRE was an arms length body and they would be affected by the general
view. There had as yet been
no rumours about the future of CHRE. Matt Burrows
(Diabetes UK): It was reported that there had been a very
successful Diabetes Week with a wide range of events happening
simultaneous. They were
continuing to work on the implementation of the Diabetes National
Service Framework with the Healthcare Commission as well as the
education of people with Diabetes.
Other big projects coming up were patient choice and related
issues; public health and the white paper and chronic conditions and
systems of care. They had responded to the Healthcare Commission’s
code of practice consultation. Philip Hurst (Age
Concern England): It was reported that their single biggest
piece of work was a joint project between Age Concern and the Mental
Health into mental health and well being in later life.
This had at last been launched.
This enquiry would run until December 2006. There were three main phases:
first phase – positive health and well being for the older
population; the second
phase – prevention of problems for people at risk;
third phase – services to people with mental health problems.
The enquiry board was now in place and an advisory group had been
set up and the first literature and policy review had been done for them
on positive mental health
promotion. They would be
going out for evidence to as many people as possible in the Autumn on
that topic. Toby Williamson (Mental Health Foundation): It was reported that many of the projects mentioned in the minutes of the last Patients Forum meeting were still ongoing and with an internal re-structuring going no new projects had started. Two policy initiatives being looked at were, first, the Social Exclusion Unit’s on the Social Exclusion of People with Mental Health Problems. Attached to this was a £1.1million anti-stigma and anti-discrimination campaign which the Mental Health Foundation would be involved with. The second initiative was the re-presentation of the new Mental Capacity Bill to Parliament that had taken place several weeks earlier. Toby was the Co-Chair of the Making Decisions Alliance which had been campaigning for legislation. Their general view was to welcome the new Bill but they were still concerned about the lack of safeguards particularly around ensuring as wide availability as possible of advocacy for people who may or not have the capacity to make decisions for themselves, not having advanced statements, the appointeeship system etc and in general that the safeguards in the system were not particularly well linked together. It seemed likely that the Bill would not get a second reading until September so this would provide plenty of time for organisation to prepare briefings over the summer. Beverley Beech
(Association for Improvements in Maternity Services): It was
reported that they had been involved in a number of consultations.
The latest was the Royal College of Obstetricians and
Gynaecologists document on caesarean guidelines and they were listed as
a stakeholder group. There
was a conference to launch the publication of this that cost around £260
to attend and there were three consumer members there.
They were also asked to buy the report costing £26.
AIMS had written to NICE saying that this was not acceptable and
that if they wanted to respect consumer involvement and the amount of
time and effort it took to respond to consultations, then they had got
to do better than that. It was also reported
that the latest consultation to come out from the National Collaborating
Centre for Mental Health via NICE was on post-traumatic stress disorder.
Around thirty people were on the advisory group but maternity was
not mentioned. It was felt
that a connexion had not been made between maternity and post-traumatic
stress disorder. It
was also reported that they had produced two new books – “The
induction of labour, do I really need it?” and “Birth after
caesarean section.”
Finally there was one issue causing them huge concern:
the activities of social services.
They were now getting to the stage where they were considering
putting a notice on their website saying:
“If you have a problem with post-natal depression or
difficulties after childbirth, do not go anywhere near social
services;” this was
because of the numbers of small babies that were being taken into care
very quickly. Peter Walsh
(Accidents against Medical Accidents): It was reported that the new
complaints advocacy service which replaced the advocacy service on
complaints that CHC’s used to provide, was now called Independent
Complaints Advocacy Service (ICAS) and AvMA had been involved over the
last year in supporting this by providing the local providers with legal
and medico-legal backup and advice when they needed it or for their
clients to be referred to them. They
had yet to hear in relating to the the extension of ICAS whether AvMA
would still be in the frame. They
would be worried if the providers did not have this expert backup. It
was also reported that the consultation paper “Making Amends” could
totally overhaul the way clinical negligence was dealt with in the NHS.
The consultation finished earlier this year and a statement was
promised this summer on the government’s proposals following the
consultation although civil servants had said that summer in their
language could mean November!
It was also reported that by the end of July there would be a
consultation paper launched by the Legal Service Commission on revising
people’s access to legal aid. It was felt that this would have major implications for
people’s access to justice, particularly patients who had been
affected by medical accidents. Brian McGinnis (L’Arche
UK): Two items were reported from the Royal College of
Psychiatrists’ conference in Harrogate the previous week.
One picked up the stigma theme.
The College had had a long-running campaign on stigma.
Over the period of the campaign there had been a favourable shift
in attitudes towards mental health conditions but what was really
interesting was that the group that tended to have the most prejudicial
attitudes was 16 – 19 year olds, not older people.
It was felt that this may or may not be connected with the fact
that a lot of the onset of mental health problems lies with that age
group. The second
item was that a wonderful video had been made by combined health and
social services in Camden and Islington about working with the children
of parents with mental health problems.
This was a group that tended to get neglected and suffered a
great deal as a result of their parents’ problems.
There had been some wonderful work around listening to those
children and young people. The
most encouraging aspect was the huge amount of resilience among children
and young people who had seen their parents self-harm, been attacked by
their parents because of their mental health condition etc but they were
coming out the other side of that very whole and very mature people
despite everything they had gone through if they were allowed to
talk and if they had some support. Alison Railton
(Motor Neurone Disease): It
was reported that they were continuing to work on the National Service
Framework on Long-Term Conditions which focused on neurology including
MND. That day Stephen
Ladyman would be speaking briefly at a joint all-party group meeting of
MND, MS, epilepsy and PSP. It
was also reported that at the end of June they had held their annual
study day for health and social care professionals at the NEC in
Birmingham where three hundred professionals attended to learn about
multi-disciplinary team working for the care of people with MND. Judith Wardle
(Continence Foundation):
It was reported that they had had contacts with the Healthcare
Commission relating to the
handover from the new CHI to the Healthcare Commission.
Two parliamentary questions were put by members of the House of
Lords relating to one of the milestones in the NSF for Older People.
The answer came back from Lord Warner saying that there were no
plans to monitor nationally what PCTs were doing, including where the
PCTs were meeting milestones.
They then wrote to the two Peers informing them that at a meeting
in 2003, people from the new CHI had said there was to be a review
process of the NSF for Older People.
A few days later on the Healthcare Commission website they picked
up a document on the process of reviewing the NSF.
There was concern that something could be coming through from
Parliament that implied that the Healthcare Commission was not doing
what it in fact appeared to be doing.
In the NHS Development Plan it said that the Healthcare
Commission would monitor quality standards.
How did this differ from what they were doing? Monitoring
milestones was not the same as monitoring quality standards. Date of next meeting
Wednesday
10th November
___________________________________________________ Speaker: Simon Williams, Patients Association “Four years ago, when
the NHS Plan came out, there was a chapter dedicated to the hospital
environment and the care of patients in hospital acute settings.
For a number of years Patients Association has been very
concerned about standards of cleanliness, the patients’ environment,
the hospital environment, issues around hospital food, nutrition,
patients not getting enough food and the poor quality of food so we were
delighted to see a chapter dedicated to improving patients’ experience
in hospital. We were invited to
participate in the Patient Environment Action Team programme which
incorporated the Better Hospital Food programme and the Clean Hospital
Programme. Each team consisted of, whenever possible, a patient or a
patient organisation, somebody from catering, somebody from facilities
or estates, somebody with a professional knowledge and background e.g. a
modern matron or an infection control nurse. We’d pay almost an unexpected visit to a hospital and we
would look at it from a number of angles: whether you could park your
car, find your way to the hospital, find your way around the hospital,
the information signage, cleanliness, tidiness of wards and toilets
(from reception to ward
areas) were they clean, could you use them. There were also the environmental issues around the décor,
the art work, did the place feel comfortable, did it smell, what sort of
reception would you have as a patient, what sort of perspective as a
visitor would you have upon a place that is caring for your loved ones. Also what sort of comfort things were in place in
hospital to care for your relative or your friend whilst in hospital.
We’d then write up a report and scores would go back to NHS
Estates. To start with they were scored red, amber and green;
that then changed to most hospital sites going green,
and this then changed to light green, neutral green and dark
green. This year we have scored it slightly differently from 1 – 5,
ranging from unacceptable, poor, acceptable, good to excellent.
The scores then feed into the star ratings. The Patients Association has been concerned for a number of years around the issues of cleanliness and the PEAT programme claimed to be patients looking at issues of cleanliness. As far as I am concerned, it wasn’t. It was looking at the environment, it was looking at décor, and what parking your car has to do with hospital infection rates I have no idea, yet some of the reports coming out suggested that the traffic light score was a reflection of the cleanliness of the hospital. Well it wasn’t. Despite our concerns and raising the issues around hospital acquired infection rates we have now got to a point where, today, the pressure is still coming from us as well as from a number of other organisations. The national audit that by complete coincidence came out today, suggested that 5,000 patients every year die from a hospital acquired infection. There is some idea of a one in a thousand patient rate of infection. Now that translates into quite a significant number of patients getting an infection whilst in hospital and there are issues hospitals are not in direct control of such as MRSA, prescribing rates, antibiotics going into meats as well as the over-prescribing of antibiotics by General Practice. But there are issues we still are very concerned about such as basics at ward level around hand washing, about keeping wards clean and how modern matrons can engage with contracted and in-house services so that they can manage these issues at ward level. Reports are coming out,
the one on Monday from the Department of Health is an example, citing
some of the new initiatives being put into place to address some of the
issues. These range from
what is already gone to be implemented to some new initiatives, for
example, to put a teddy bear on a child’s bed when the bed is being
made. This sounds great but
a soft cuddly toy can be full of germs and putting a soft cuddly toy on
a bed means that it is no longer clean.” (Simon then commented on some photographs taken during the visits – this section left out because photographs would take a long time to download.) “We have now got to a point where we are in the third or fourth stage of PEAT. My general feeling is that, yes, things have improved. The most significant improvement is that there has been a focus on the hospital and hospital food whereas a few years ago it was one of the first budgets to be cut if things got tight. Cleaning would be cut and Trusts could get away with it. That’s very different now. There are significant improvements in the environment – colour, art work, lights, music, smells are part of what is considered a good environment when hospitals are being redesigned. I hope that PEAT has moved people’s thinking significantly towards an appreciation of the environment being important to the well-being and the healing process of patients.” _______________________________________________ |
| Last updated 18/11/2004 | © The Patients Forum 2004 |