Minutes of the
Patients Forum
meeting held on 10th November 2004 at Consumers’
Association
Present:
Jonathan Ellis – Chair (Help the Aged); Sally Brearley (Health
Link): Gerda Loosemore Reppen (Sign); Marlene Winfield (National
Programme for IT); Ruth Taylor (Haemophilia Society); Elizabeth Wincott
(LMCA); Oliver Fry (Which); Toto Gronlund (NHS Information Authority);
Carol Herrity (Royal Mencap); Brian McGinnis (L’Arche UK); Geraldine
Amos (Home from Hospital Care); Kerry
Williams (Rethink); Mike
Took (Rethink); Eileen Neilson (Royal Pharmaceutical Society GB); Nikki
Joule (Independent Policy Consultant); Judith Wardle (Continence
Foundation); Rebecca Shane (General Chiropractic Council). Diana
Basterfield (
Patients Forum
) – in attendance
Apologies:
Libby Halford (Childhood Eye Cancer Trust);
Philip Hurst (Age Concern England); Angeline Burke (NMC);
Toby Williamson (Mental Health Foundation); Liz Urben (British
Red Cross); Elizabeth Manero
(Health Link); Hew Helps
(Chiropractic Patients Association);
Carol Myer (Royal College of Paediatrics and Child Health)
Speaker:
Paul Durham, Healthcare Commission
Foundation
trust review
See appendix
Minutes of the last meeting
The minutes of the meeting held
on 14th July were agreed.
Matters arising
There
were no matters arising.
Chair’s report
Jonathan
began by thanking all those who had come along to the AGM on 2nd
September and hoped that they had found Meredith’s discussion on the
new patient and public involvement structures interesting and engaging.
It was reported that there was a ‘Stop Press’ item in
relation to the Newsletter. The
Department was now consulting on the new PPI structures and as Cabinet
Office guidelines on consultation were being followed this meant there
would be decent amount of time to respond.
It was suggested that the
Patients Forum
might wish to return to consider this subject collectively with Meredith
or with the Department.
Jonathan also checked whether people had received the Minutes of the
recent Management Committee following the decision at the AGM to
circulate these to all members. It was reported that the whole of the
last meeting had been spent discussing the ideas proposed by members
around the future strategy of the
Patients Forum
and these had been worked through one by one with a table on page 2 of
the minutes showing the outcome. This
was really at the top of the Management Committee agenda and it was
intended to come back shortly to the members with concrete actions that
would be taken forward.
One of the ideas currently being actively investigated was the
possibility of hosting a conference on 22nd February on the
theme of how to connect a socially inclusive approach to health
promotion and health improvement.
This was one of the issues identified at the AGM and beyond as
something that the
Patients Forum
should be engaged in. More
details would be available soon.
In relation to the circulation of the Management Committee
minutes, this would be added as a new item to the
Patients Forum
agenda to enable members to ask questions or make comments.
Finally, Jonathan invited members to say if there were any issues coming
up that they would wish to be the focus of a meeting or a closer
examination. The
Patients Forum
needed to be steered by its members about what they would find helpful
at meetings or seminars.
Information exchange
Sally
Brearley (Health Link): It
was reported that there had been several recent articles in the Health
Service Journal about work done by Health Link on homeless people and
monitoring visits as well as a report “Taking Soundings” speaking to
people from hard to reach groups about how they would wish to access
choice. It
was also reported that the
NHS
University
was organising a meeting on patient and public involvement the following
day and there was a possibility of setting up a PPI CHAIN.
Gerda
Loosemore-Reppen (Sign):
It was reported that some of the work Sign had done related to
working in partnership with the Mental Health Foundation on a Charter
for deaf people’s well-being in health and social care.
They were in the process of consulting with all the deaf
organisations about the document in the hope that they would either
adopt it in its current form or makes helpful suggestions for changes.
The document would be circulated to
Patients Forum
members. It was also
reported that they were working with the Healthcare Commission helping
them to think about inclusive services for deaf people and they were
very keen to have some indicators for deaf-friendly mental health
services. Sign had
suggested a number of these that could be measured or observed by
Trusts. Finally,
regarding the NHSU, they had been working with the Disability Rights
Commission on disability awareness training issues and things were very
much in flux but they were thinking about developing an on-line training
course for everybody in the NHS to become better at communicating with
their patients. There
were some issues about how effective on-line learning could be in
changing attitudes and increasing competence but it was felt that
general, factual knowledge could be dealt with on-line.
Marlene
Winfield (National Programme for IT):
It was reported that also today there was an announcement on
their website of a full recruitment to their Care Record Development
Board. This Board was going to be one of the prime ways of involving
stakeholders in everything from the design to the evaluation of
electronic health services, electronic booking, electronic health
records, electronic transfer of prescriptions and sharing X-rays and
things electronically. The
Board would sit at the centre of a structure that would have action
teams that would be convened for short periods to give advice on
particular issues, e.g. medicines management. The Board was also inside
a stakeholder network of a wider range of stakeholders who would be
asked to join action teams or would be consulted by action teams.
Marlene encouraged all members to go on to their website and sign
up to get involved and become a member of the stakeholder network: www.npfit.nhs.uk
and to go the section on Care Record Development and “Getting
involved.”
It
was also reported that their public information campaign had now reached
the point of recruiting someone the following week, choosing an agency
to help them deliver and materials had now been out to patients,
clinicians and a variety of stakeholders. This campaign would begin as a
locally delivered campaign in 2005 and would follow the roll out of the
electronic health record as it rolled out over the next eighteen months.
They were holding workshops for PPI leads in Strategic Health
Authorities and PALS to get them ready for patient concerns as well as
providing all sorts of materials to get the NHS ready to explain to
people their rights to have their information shared or not have it
shared. It was also
reported that they had created a “Front line support Academy” which
was going into local health communities and recruiting leaders, clinical
leaders and patient group members, to go through a leadership training
primarily aimed at making sure these new electronic services were used
to help health modernisation rather than just automating bad services
– that they made real changes.
They were also developing health decision aids.
They had commissioned a health version of Google which would be
able to find data according to different rules that the patient or the
member of the public wanted: “map of medicine” – a graphical
representation of a care pathway; information
about local services, about the condition, about treatment choices etc.
They were also doing some work with the National Consumer Council
on health literacy, following on from the work they did at the
Department of Health, seeing if they could take people from hard to
reach groups and enable them to have access to these new electronic
services, see how they used them, how they wanted to use them, how they
could be enabled to use them to improve their health and did it change
their behaviour etc.
Ruth
Taylor (Haemophilia Society): It
was reported that they had been involved with the monitoring of
recombinant roll-out. The
Government had awarded all patients with haemophilia the opportunity to
go on to artificially produced factor, which is supposed to be safer
than plasma- produced. They
had also been involved with a rather substantial scare about new variant
CJD in blood products and a major hospital exercise in warning people
who had received plasma derived products that they may be at risk from
new variant CJD. It
was also reported that they were doing a conference in November directed
at obstetricians, GPs, and other medical practitioners to raise
awareness of the problems of women with bleeding disorders.
Oliver Fry
(Which): It was reported
that they were working on the implications of the forthcoming abolition
of the Commission for Patient and Public Involvement in Health and
producing a strategy around that. They
were in the process of commissioning two pieces of research – one
looking at the general public’s perception of patient and public
involvement in healthcare, what their aspirations and needs were and how
the new ‘Centre of Excellence’ or whatever body the Government
proposed to introduce, could and should meet them;
also looking at how the structures at local level needed to
change to ensure that Patient Forums were properly supported and given
sufficient access to good practice and that the lessons that they
gathered were ‘fed up’ rather than relying on stuff coming from the
‘top down’. It
was also reported that they would be campaigning in Parliament around
this issue and they were in the process of building up a base of
parliamentary support so that representations could be made.
Legislation was not due until 2006 so there would be a year-long
campaign building up around this very important area.
Toto
Grunland (NHS Information Authority):
It was reported that as a result of the Arms-Length Body Review,
the NHS Information Authority would be closing its doors on 31st
March 2005. The vast
majority of the work, projects and services would be going to the
National Programme for IT. Other
parts of the work would be going to a new body, a special health
authority to be called the Information Centre.
It was currently in shadow form and would come into existence on
1st April 2005.
The purpose of the Information Centre was to rationalise and
coordinate the information requirements demanded from the NHS – to
reduce the burden at frontline in terms of information collection.
It would operate across the health system in
England
and also would provide a focal point for information about services and
activities in adult social care. There were still some issues to be
decided so at the moment there were still some gaps.
Bob Allen had been appointed as the interim shadow Chief
Executive and recruitment was underway for a Chief Executive and a Chair
for the organisation. It
was reported that Toto was working with the Information Centre to
determine if there was a role for public involvement and patient
interest in the work they do since they would provide information and
knowledge services to the public as well as doing the old work of
collecting data.
Carol
Herrity (Royal Mencap): It
was reported that a key issue for Mencap had come out in the one or two
very tragic cases where parents were at loggerheads with healthcare
professionals about the provision of healthcare.
A key underlying factor that was always in danger of being
forgotten, and presented a real barrier to people with a learning
disability to access services, was the assumption that disability was
the same as suffering. It was really important not to lose sight of that
when there was an overlay of all sorts of difficult and tragic decisions
to be made.
Brian
McGinnis (L’Arche
UK
): It was reported that the previous day there had been a seminar at the
Royal Society of Medicine on capacity, consent, advocacy and related
areas. One of the striking things that came out was the extent to which
the role of the advocate in supporting somebody or the role of all of us
in giving people autonomy actually ran against their best interests.
He said that put crudely, there were now a number of people alive
and happy because a professional, or their parents, had thought they
knew better than the person did and were right. It was quite an
interesting clash of principles and, he guessed, speculating about the
mental health field, there were some folk alive in the mental health
field because somebody overrode somebody’s else’s declared
expression of what they wanted. There were no right answers but it was
an interesting area. It was
also reported that Brian had chaired a conference on palliative care and
learning disability in
Liverpool
and it had been one of those few conferences where everyone was sitting
in their seats before it began, being very much oversubscribed.
Most of those there had been either palliative care specialists
or learning disability specialists.
He said he had never been at a conference where so many people
went outside to smoke.
Kerry
Williams (Rethink): It
was reported that they had a new research department that had been up
and running since January 2004. The
two members of staff were working on the “Mental Health First
Programme” where they were trying to keep mental health first on the
Government agenda. They
were using data from a survey of 3,000 service users and 1,500 carers
conducted several years previously.
This looked at issues around access to services .
Also included in this programme was a review of early
intervention programmes; first
an audit of where the Early Intervention Teams were and looking at the
result of the Government implementing fifty at the beginning of their
ten year plan. The
other two key research programmes were looking at access to different
help line services and the impact of those on patient pathways –
working with the Telephone Helplines Partnership – and
telephone conferencing networks.
Nikki
Joule (Independent Policy Consultant):
It was reported that a lot of work was being done for the
King’s Fund Care Services Enquiry – looking at care services for
older people. This was a literature review attempting to assimilate all
that older people had said about care services in
London
over the previous five years or so.
Nikki was working with Roz Levinson and they had been doing focus
groups in different parts of
London
with people in their fifties - people not yet using care services but
possibly starting to think about that for the future, or having some
experience through parents. This
was experimental – looking at whether it was possible for people to
think about the services they would need and want and testing out some
of the assumptions that these services would be very different to those
provided for the generations before them.
This information was being brought together at a meeting at the
King’s Fund on 6th December 4 – 7pm where all those
involved in the focus groups would be invited and, in addition, an
invitation was also extended to
Patients Forum
members in that age group who could give their own individual views,
especially, if they worked in an organisation with an interest in older
people.and care services. There
would be a buffet supper and a small payment of £10 to cover expenses.
Judith
Wardle (Continence Foundation): It
was reported that Continence Awareness Week was held in September and
two snippets came out of that.
There was a first ever mention on prime time television.
They had expected to see only posters on the set of
Holby
City
because they had been asked for them.
Instead there was a mention in the script.
It was not the mention they had wanted.
It was a joke about incontinence where all the ‘doctors’ had
laughed. Judith wrote to the
Radio Times about it but the letter was not published. The
other negative piece of information was that they had run a devolved
campaign through continence services health promotion units and had sent
out around 1,000 campaign packs.
One continence service got an agreement from ASDA to go into one
of their stores handing out information about continence promotion.
Close to the event they received a call from the manager saying they
could not possibly have them there.
“We can’t possibly have someone talking about continence
where we sell food.” What
they obviously hadn’t noticed was that they sold continence pads!
CF had wanted to take this up as a campaign but the Trust to
which the continence service belonged did not want them to pursue it
because they were worried about the implications.
It was also reported that the greatest interest in their
Awareness Week had come from a short piece about a continence leaflet in
“Yours” magazine. Their
helpline had been submerged with over 1000 requests for the leaflet.
Finally, people present were asked about their experiences of
NICE. The NICE
guidelines on urinary incontinence were coming up soon and they were
aware that a lot of people who had responded to the scope said that they
did not want the guidelines to stay as they had been advertised in that
they there were only for women. It
did not seem likely that this would be acceded to as that
particular guideline had been allocated to the Royal College of
Obstetricians and Gynaelogists. If
something has already been allocated to a collaborating centre for women
what were the chances of getting it changed so that they would also
apply to men?
Jonathan
Ellis (Help the Aged): It
was reported that they were piecing together a major campaign on elder
abuse, particularly focusing on the abuse of older people in their own
homes. This was trying
to break the myth that abuse happens in care homes and with paid staff.
The campaign was focusing on older people’s rights, the
importance of advocacy and the need to raise awareness that this abuse
happens. They
were also finalising research into NHS podiatry services for older
people in the light of the historical disinvestment in NHS services.
They were trying to find out what happened to people, what the
actual costs to the local economy were in the long term and whether it
was a case of saving money in one place and increasing costs somewhere
else. It was hoped to
publish this research in the New Year.
Any other business
Sally
Brearley (Health Link) congratulated the Haemophilia Society on its very
successful campaign to reinstate the funding for recombinant therapy
after the funding had first been announced by the Prime Minister,
followed shortly after by a proposal to claw back £3 million.
Date of next meeting
Wednesday
January 12 (date changed
from that in Newsletter)
___________________________________________
APPENDIX
Foundation
trust review
Paul
Durham, Healthcare Commission
10
October 2004
“The Review fell out of all the debate in Parliament from
becoming a Bill to an Act. Various
concessions were made by the Secretary of State and in order to get MPs
to go through the right lobby the idea was that there would be an
independent review and this is what the Healthcare Commission is
doing.”
Why
does the Healthcare Commission exist?
To promote
improvements in the quality of healthcare and public health through
independent, authoritative, patient-centred assessments of the
performance of those who provide services.
“The staff come from various backgrounds:
the bulk are from the Commission for Health Improvement - used to
carrying out reviews of hospitals and there are also staff who look at
and licence private-sector premises;
there are people from the Audit Commission and there are people
who were on the Transition Team – mostly from the Department of Health
and others and six months in there is a process of amalgamating the
different views and learning from the best.”
What
is the Healthcare Commission?
•
our
remit covers both NHS, private and voluntary sectors
•
we
will review both quality of care and value for money
•
we
will assess performance in the light of national standards from the
Department of Health
•
we
will encourage improvement in public health
•
we
will develop a new independent 2nd stage in NHS complaints
process from June
Wales
Terms
of reference Foundation Trust Review
1. What evidence in
general terms is there that NHS Foundation Trusts (NHSFTs) are using
their powers to:
•
Improve access to services
•
Improve the quality of care for
patients
•
Engage the local community
•
Engage staff to deliver high quality
care to patients and the population
2. What obstacles have
they faced and do they foresee in achieving the above objectives?
3. What has been the
impact of NHSFTs, so far, on relationships within their local health
economy?
4. In what ways are
their governance arrangements assisting or impeding NHSFTs from
exercising their powers for the benefit of patients?
Regulation
of Foundation Trusts
•
free from DoH
direction and StHA control
•
Independent
Regulator of NHS Foundation Trusts (Monitor):
•
IRFT
“financial & corporate governance”
•
HcC
“Ability to provide healthcare”
What
is different about NHS Foundation Trusts (1)?
•
Financial
freedoms:
•
wider
range of options to borrow money e.g. Credit Facility from banks (up to
limit set by IRFT)
•
Such
loans are not counted as income (in the way that brokerage is in the NHS)
by Monitor
•
Legally
binding contracts (both advantages and disadvantages)
•
use payment
by results (reference costs)
•
make
and retain surpluses
•
Invest
in buildings, new services, etc.
•
Form
or become members of corporate bodies
•
Appoint
own external auditor
•
Failure
regime
What
is different about NHSFTs (2)? GOVERNANCE:
•
Links to
local community:
•
Representative
membership
•
Public
constituency & governors
•
Possible
patient constituency & governors
•
Local authority
& PCT governor
•
Staff
constituency & governors – at least three
•
Board
of Governors as well as Board of Directors
What
NHSFTs cannot do:
•
borrow
from the private sector outside the parameters of the Prudential
Borrowing Limit
•
Disinvest
in services – requires IRFT and PCTs to agree
•
ignore
national targets and DH standards
•
Ignore
other legal requirements eg Health and Safety, EWTD, Disability
Discrimination Acts etc
•
Act
outside their Terms of Authorisation
•
Provide
services outside the terms of the Act or their Terms of Authorisation
– ie their core purpose has to be related to health services
Timetable
for review: 3 Phases
•
timing
is determined by the Secretary of State
•
Phase
1: Pre-review: June – Oct 2004
•
planning
of work
•
build
team
•
national
stakeholders (e.g. Monitor, MPs)
•
development
visits to NHS foundation trusts & local healthcare partners
•
Phase
2: Fact-finding visits late Oct 2004 – January 2005
•
Phase
3: Analysis and reporting Feb
– early summer 2005
Main
visits: who we plan to interview
Semi-structured
interviews: NHSFT Directors
•
driven
by main local issues, then check cover questions in Terms of Reference
•
Example
questions to NHSFT directors
•
Why did the Trust
become a Foundation Trust?
•
What powers has the
Trust used to date and what has been the outcome on patient care and
services?
•
What comments does
the Trust have on its dealings with Monitor, the independent regulator,
the Strategic Health Authority and the Department of Health?
•
What effect has
gaining Foundation Trust Status had on partnership working?
•
How have staff been
involved and what have the changes/benefits/concerns?
•
What are the main
lessons learnt from your experiences for later Foundation Trusts and for
national policy?
Questions
for patient/public forums
•
What
involvement has there been with forums?
•
How
have any changes affected services and patient care?
•
What
have been the benefits/difficulties for patients and public?
•
What
are the main lessons learnt for later NHS Foundation Trusts and national
policy?
Timetable
of Main NHS Visits
•
Basildon &
Thurrock
University
25th Oct
•
Bradford
Hospitals
29th Nov
•
Cambridge
University Hospitals
13th Dec
•
City
Hospitals
Sunderland
13th Dec
•
Derby
Hospitals
13th Dec
•
Doncaster
& Bassetlaw
29th Nov
•
Countess
of
Chester
15th Nov
•
Gloucestershire
10th Jan 05
•
Guys
& St Thomas’
10th Jan 05
•
Homerton
15th Nov
•
Moorfields
Eye
29th Nov
•
Papworth
10th Jan 05
•
Peterborough
25th Oct
•
The
Queen Victoria (
Sussex
)
10th Jan 05
•
Royal
Devon & Exeter
29th Nov
•
Stockport
13th
Dec
•
Sheffield
Teaching
13th Dec
•
The
Royal Marsden
29th Nov
•
University
Hospital
Birmingham
13th Dec
•
University
College
London
10th Jan 05
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