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News and Briefings from The Patients Forum Submission on the NHS Plan to the Department of Health 16/11/2000 The
Rt. Hon. Alan Milburn, MP Dear
Secretary of State Re: The NHS Plan
The
Patients Forum is a network of national and regional organisations
concerned with the health care interest of patients, their families and
carers. We have been very involved in the consultation on the proposals
set out in the NHS Plan, particularly those in Chapter 10 that relate to
improving representation and involvement. Many of our member
organisations have taken part in the seminars organised by the
Department of Health. In addition, the Patients Forum organised two of
its own meetings to consider the NHS Plan. The first meeting, held in
September gave us an opportunity to put forward some initial views and
questions about the NHS Plan – at the second meeting in November we
considered in more detail the implications of the proposals for the
Patient Advocacy Liaison Services (Pals) and Patient Forums.
Representatives from the Department of Health attended both meetings -
which was very helpful. By
way of a formal Patients Forum response to the NHS Plan, I am now
forwarding you the summary notes from these meetings. As you will
see our key concerns relate to ensuring that a wide range of patient,
carer and public interests are represented in the involvement process.
We also see that there is a great deal more work to be done on
developing the roles and responsibilities of PALS and Patient Forums and
to ensure that these bodies are effective and properly supported.
I
have also included a summary of issues raised by INVOLVE, the
national forum of voluntary sector health and social care partnerships,
at their recent annual conference. As you will, see this group raises
many of the same issues and concerns as the Patients Forum. I
hope you find this helpful. Please feel free to contact me should you
have any questions or wish to discuss the attached.
Yours
sincerely, Clara
MacKay Summary
of points made at the Patients Forum meeting on 14.9.2000 Comments on the NHS Plan Proposals
for Public Involvement
The
Patients Forum is a network of national and regional organisations
concerned with the health care interests of patients, their families and
carers. The
Patients Forum endorses the Government’s view that NHS care has to be
shaped round the convenience and concerns of patients and we therefore
welcome many of the proposals in the NHS. However, we believe that there
are important issues which must be addressed in order to ensure that
this aim can be achieved. Our main concerns are summarised below: ·
Ensuring the widest
possible involvement – it is
essential that all members of the community are able to give their views
on the planning and provision of health care the local health care. For
example while many people may be able to record their views about the
services they received in hospital in writing, others may not be able to
do so due to their substantial health problems or special needs or
because their first language is not English. In such circumstances
alternative systems must be available. In addition it will be necessary
to consider ways of ensuring that people who work or have caring or
other commitments will be able to participate in the groups which
include patient/citizen representatives, for example by ensuring that
meetings are not always held during the working day.
·
The need for information
and support – the NHS Plan
introduces a great deal of change, in particular a range of new agencies
will be formed, with different but connected roles. Individuals wishing
to join or work with these groups will need to understand the role and
responsibilities of these organisations and how they will link and work
together. Patient/citizen representatives on the various groups are
likely to need support in their role. ·
Building on current
expertise – there is much
expertise within the voluntary sector and in Community Health Councils
which could be utilised to assist in the planning and implementation of
the proposals for public involvement.
·
The Patient Advocacy
Liaison Service – the exact
nature of PALS role is not clear. For example although the NHS Plan
states that PALS will support complainants, it is envisaged that other
organisations such as the Citizen’s Advice Bureau will give additional
support. A major potential problem is the perceived independence of
PALS, given that the staff will be based in the hospital. Consideration
needs to be given to the establishment and running of PALS. For example
to decide what skills the advocates working for PALS will require and
which agency will employ them. In addition staff will need to work to a
code of practice (which should include a policy on confidentiality). We are aware that the Department of Health is consulting on the proposals on public participation over the next few months, in particular the further details required on establishing and running the PALS. The Patients Forum would welcome the opportunity to discuss our views on the proposals and our suggestions on possible ways of addressing these concerns with the Department of Health. Comments & Questions on the NHS Plan and Public Involvement (arising from the Patients Forum Meeting on 14th September 2000) 1.
General Comments & Questions a.
Getting People involved ·
These proposals are to be welcomed but we need to ensure that the
people who get involved are the wider community not just the people who
have been involved so far. ·
We need to ensure that people who are not using the services are
also involved, for example people from ethnic minorities ·
What about people who are not using services because they have
kept healthy? (Although note that ILAF will be a forum of local
‘residents’ rather than patients) ·
The model needs a lot more people but there isn’t a surplus of
people able/willing to undertake this work ·
How do we include people with substantial health problems? ·
There is a danger that this will become a middles class charter
for the articulate ·
How will people with special needs be accommodated into this
structure, for example people with sensory impairments and people with
learning difficulties? ·
There is very little mention of carers when considering the
membership of the various bodies – will they be included? ·
What about time off in order to be involved in these initiatives,
as in time off for public duties such as for jury service? b.
The Voluntary Sector & the NHS ·
We need to build on existing expertise ·
What about commissioning the voluntary sector on areas of work in
addition to consulting us? c.
Primary Care ·
It is very disappointing that primary care is not included in the
NHS Plan d.
Funding ·
What resources are there to take forward these proposals? ·
Will all of these bodies be sufficiently funded? Will the DoH (or
Dept of the Environment?) pay local authorities? (I think this question
relates to local authorities experience in public involvement) e.
Community Health Councils (CHCs) ·
Are CHCs a doomed body? ·
Are we going to throw out the experience of CHCs? f.
Other general comments ·
Seems to be a very complicated system. ·
Changes are too quick ·
Whose responsibility will it be to ensure that this work [steps
to increase public involvement] is carried out? ·
Need to bear in mind that the intended outcome is to achieve a
better service for individual patients ·
Need more emphasis on health promotion – the NHS is not meant
to be a ‘national illness service’ ·
Will this make the NHS more accountable? ·
The NHS Plan introduces a range of different bodies, which will
have a role in facilitating public involvement – but it is difficult
to see how they will link and work together. For example both the
Independent Local Advisory Forum (ILAF) and the Local Modernisation
Boards will have an input into the Health Improvement Programme – will
these groups liaise with each other to exchange ideas and views? ·
Will any of these groups have a statutory basis? – Even with
statutory authority, CHCs have had difficulties in taking things
forward. ·
What support will be given to the groups, for example on the
administration of the groups? (Although note that PALS will support for
the Patients Forum and members of the Patients Forum will have access to
the NHS Leadership Centre’s programmes) ·
What about the independent sector? ·
This will only work if patients and patient organisations are
listened to ·
There is not enough about communication with patients ·
What role with the regions have? ·
How does the Commission for Health Improvement fit in? ·
There are constraints on patient power – in the case of the
Royal Commission on Long Term Care the proposals were thrown out. 2.
The Patient Advocacy Liaison Service (PALS) ·
PALS will have an important role but how will they be recruited?
What skills will they need to
have? ·
Is the proposed annual budget of £10 million realistic? (How
much will this be per NHS Trust?) ·
Will PALS be seen to be independent by patients? (It will be very
difficult to maintain independence when the staff are based in the
hospital) What relationship will they have with NHS agencies and staff? ·
There will need to be a code of practice for PALS, including a
policy on confidentiality. ·
What is the exact nature of the role of PALS in supporting
patients in making complaints? (Note that the NHS Plan states that the
DoH will ‘work with other organisations, such as Citizens Advice
Bureaux, to ensure additional support for people complaining) ·
Advocacy is about siding with the patient – concern that PALS
will not do this. ·
There seems to be some muddled thinking on advocacy ·
Perhaps PALS could be available to help people, who require
assistance, in responding to NHS Trust surveys which seek patients views
on the services they have received
·
Who will PALS staff be accountable to? ·
Will PALS be able to initiate legal challenge? (In the way that
CHCs can do now) 3.
The Independent Reconfiguration Panel (IPR) The
proposals in the NHS Plan are that it would be for the local government
all-party scrutiny Committee to refer any proposed changes to the NHS to
the IPR (under existing arrangements the local CHC may refer such
changes to the Secretary of State) ·
It is not clear what would happen if the local authority
all-party scrutiny committee was in agreement with the planned changes
to local health services (for example if it involved joint working
arrangements between health and social services). The proposed
arrangements suggest that there would be no alternative body which could
make a referral to the IPR on behalf of concerned residents. ·
Will there be consultation on the criteria to be used for
referral to the IPR ? SUMMARY OF PATIENTS
FORUM SEMINAR ON NHS PLAN HELD ON 1ST NOVEMBER 2000 AT CONSUMERS’ ASSOCIATION
Duncan
Innes, Quality & Consumers Branch, NHSE, and Jo Lenaghan, Strategy
Unit attended from the Department of Health
Current situation
Duncan Innes started
by saying that the aim of the NHS Plan is to create a patient-centered
NHS. When the Plan was published at the end of July only the elements of
the proposals for patient and public involvement were included in
chapter 10. This was done
so that the detail could be filled in by consulting as widely as
possible through a series of seminars and other forms of consultation in
the autumn. This
consultation process was now halfway through and a large number of
comments on the Plan have already been made.
Once the meetings were concluded on November 17th and
all the comments analysed, those features requiring primary legislation
would go into the Modernisation Bill in the Queen’s Speech in December
and the remaining features would be developed further in the coming
months. Primary
legislation would include the abolition of CHCs and the role of local
authority Scrutiny Committees.
Secondary legislation would include regulations to replace some
CHC functions, directions to Health Authorities to set up Patients
Forums and a general duty on health organisations to consult.
It was not clear yet whether a draft of the Modernisation Bill
would be circulated to organisations for further comment. On PALS, key points
that have emerged so far include: the
tension between them having independence and influence; whether the
staff should be employed by another organisation and whether the
complaints function should be dealt with by an independent service, e.g.
CABs. On Patients Forums,
there has been discussion about having a national organisation. This will be discussed further at the DOH seminar on November
3rd along with the research on Patients Forums LMCA has
produced. The meeting broke
into two groups, one discussing PALS, the other Patients Forums. PALS group feedback
Nikki Joule gave the
feedback from this group. 1. There was a need
for a national body to employ and co-ordinate the PALS services. Important to have a
national job description and national standards of service. 2. The location of
PALS. It was not
necessarily the right thing for them to be based in hospitals because: (a)
how would they cover the primary care remit? (b)
looking at the skills the PALS service would need to encompass,
this couldn’t be covered by
having two or three people. There
is a whole range of skills and range of
seniority required to liaise with the Trust and tackle the problems, ie
really good librarian/information skills with knowledge about the local
community and the voluntary sector, counselling skills, detailed
knowledge about specific health issues,
complaints handling skills, legal skills etc. (c)
PALS would be perceived to be more independent if based outside
hospitals (d)
if based outside they would be able to deal with issues like
funding, getting access (e)
not convinced that they would have more influence if based inside
hospitals because it depends on the level at which the staff would be
graded. Also recent 3. PALS should have
some statutory powers. 4. The review of the
complaints procedure is going to impact on PALS and there was a need for
proper consultation on this review. Patients Forum group feedback
Barbara Meredith
reported back for the group. She
said they had made positive statements on what Patients Forums
could/should do. They had
looked at the powers they would need and how they would link to
different parts of the NHS and to the community. 1.
There could be a minimalist model
– a group of people, possibly 15 or 20 who just come together
quarterly or bi-monthly to chat and then to go away again. Her group didn’t
think much of this but suspected that this might be what the DOH had in
mind! 2.
These are some of the functions the group thought the Patients Forum
could have:
Health Authority
Primary Care Trust
PALS Carers and patients The wider community
Professional bodies The
Patients Forums ought not to have any gagging clauses attached to them.
They are not there just to
be consulted but should be a proactive body. What
Patients Forums needed were:
Unsure who Patients
Forums are accountable to. Two
possible models: (a) Have a member on
the Trust Board, the Health Authority Board
(or sub committee thereof) and the Primary Care Trust Board.
This might mean having several people on different boards.
It is crucial to have links between the Health Authority and the
PCTs. (b) Create (and this
might require legislation) a Duty on the Board to report publicly to
organisations, to its own Trust, to the Health Authority, to the PCT and
for these organisations to have a Duty to respond. Who is going to do all this?
Next steps
An options paper
will go to the Secretary of State for Health for decision once all the
submissions are in. The NHS
Plan and Public Involvement Issues for
inclusion in Patients Forum response These comments from London
Voluntary Service Council include issues raised by INVOLVE, the national
forum of voluntary sector health and social care partnership officers, at
their recent annual conference. · PALs: How independent will these be? - especially when it comes to challenging the system as opposed to helping people through it. They
seem very focused on dealing with individual problems in isolation, rather
than looking at patterns which indicate flaws in the system. How and by whom
will these flaws be identified and dealt with? ·
There needs to be much stronger support and resources for independent
advocacy, including advocacy based on empowerment of users and collective
action, rather than just advocacy for isolated individuals. ·
The approach will lead to fragmentation, at strategic and individual
patient level, which goes against Government policies to work across service
and organisational boundaries. At
an individual level, people have a holistic experience of services, whether
they come from the GP, hospital or social services; they may not know or
care who is providing the service. Just
asking patient views on particular services will not reveal whether the
services work together for that person. In particular, they do not look at
the whole 'patient journey' or 'care pathway' from when the patient/service
user first enters the system to when services are no longer required.
Patient surveys will also not reveal whether people are not getting a
service at all, whether they want something different, or anything from
people who can't/don't wish to respond to written surveys e.g. because of
language, disability, or poor literacy. ·
At a strategic level, there is a lack in these proposals of an
independent voice on local health policy and practice, which can look at
issues at a broader level, and across service boundaries.
Just having patient forums attached to specific trusts will not
fulfil this function, and unless there is a clear way of linking them into
strategic thinking, they may lead to greater fragmentation. There is also a
danger that they will focus on visible issues - e.g. cleanliness, waiting
times - rather than broader issues of the accessibility, nature and quality
of the services. ·
Patient involvement will be tokenistic unless there are sufficient
resources to support and develop it. Voluntary organisations need adequate
resourcing to do this, and to participate themselves in the new structures,
particularly those representing excluded groups, such as black and minority
ethnic communities. There is a
real danger that supporting
voluntary sector and patient involvement will be a task placed on
organisations without the resources to do it effectively. ·
Selection processes for members of patients forums and health
authority advisory forums need to be transparent, and ensure inclusiveness
of all communities - and this should be monitored centrally.
Clear direction from the Department of Health is needed, as
experience of selecting PCG lay representatives shows that, unless
restrained, some health authorities will be very undemocratic. There is
plenty of good practice for the Department of Health to draw from, for
example in relation to PCGs, CHC elections, and in the setting up of local
health and community care partnership and consultative groups.
Randomly selecting patients who answer the survey to join the
patients forums is a recipe for unrepresentativeness.
·
There is still no accountability of health services to local people -
having local authorities in a scrutiny role is not sufficient. ·
What statutory powers will the new bodies have? ·
It is not at all clear how the PALs, patient forums, advisory groups,
local modernisation boards will work together, or with existing arrangements
such as HIMP planning, the proposed local strategic partnerships
Jane Belman, Health and
Social Care Policy Officer |
| Last updated 20/11/2000 | © The Patients Forum 2000 |