104. Evidence submitted by Which? (PPI
106)
Introduction
1. Which? is an independent, not-for-profit
consumer organisation with around 700,000 members. Based in the
UK, it is the largest consumer organisation in Europe. Entirely
independent of government and industry, we actively campaign on
behalf of consumers and are funded through the sale of our Which?
range of consumer magazines and books. 2007 marks our 50th anniversary.
2. Which? has a long-standing interest in
a wide range of health issues, and through our work we seek to
make individuals as powerful as the organisations they have to
deal with in their daily lives. Consumer influence and representation
is one of the core consumer principles and the subject of patient
and public involvement in decisions about health and social services
runs through our work. In considering our response to the Committee,
we have drawn on research and analysis across a number of health
issues and we have focused on the principles and aspirations we
hold for patient and public involvement.
Summary of Which? Views
3. Which? welcomes this timely inquiry by
the Committee. Public and patient involvement should be at the
heart of the NHS and the decisions it takes in commissioning and
providing services, particularly in today's "patient-centred
NHS". However, recent reviews and reforms lead us to question
the Government's commitment to involvement and engagement of this
nature.
4. In our view, listening and acting on
the views of patients and the public should be a fundamental part
of the core business of the NHS. However, we are often left with
the feeling that consulting and involving patients and the public
is tacked onto deliberations because of statutory duty, or worse
not included at all. For example, decisions about the revised
GP contracts were made without any representation of consumers'
interests despite the significant impact these decisions had on
the choices open to individuals about access to out-of-hours care.
5. We will address in detail some of the
questions raised by the Committee. However, we would like to highlight
three key points:
(a) We strongly believe that patient and
public involvement in the NHS should be integrated across all
NHS care, not limited to particular structures and opportunities.
It should be a feature of all decisions, from 1:1 consultations
between a patient and health professional, to national policy-making
by the Department of Health.
(b) The success of patient and public involvement
in health should be judged on the spirit and culture of openness
in the NHS and a willingness to hear users' views, not solely
on structures and bodies established to meet statutory consultation
requirements.
(c) The frequent review and reform of patient
and public involvement opportunities leaves consumers with a sense
that Government commitment to the ethos of wide consultation is
wavering.
What is the purpose of patient and public involvement?
6. The purpose of patient and public involvement
in health is to deliver a health service that meets the needs
of people using the NHS. Understanding the views, experiences
and needs of patient and publics helps to inform the development
of services so that they better meet the needs of its "customers".
For example, we believe it has a key role in identifying choices
for patients and the public under the Government's policy of Patient
Choice. Individual patient choice alone cannot be relied upon
to direct the provision of community and regional services; patient
and public involvement is necessary to ensure the NHS meets people's
needs.
7. Which? is concerned about the strict
definition of patient and public involvement in health that has
been adopted as common use. The debate so far has focused heavily
on getting the right structures and organisations in place. But
of equal importance is the emphasis on a spirit and culture of
openness and listening that is also needed throughout the NHS.
What form of patient and public involvement is
desirable, practical and offers good value for money?
8. Which? believes we need to be bold, creative
and genuine and embed the voice of the patient and publics at
the heart of the NHS as a clear way to improve the delivery of
healthcare. It requires all those involved in delivering healthcare
to be willing to actively listen to their patients and the public
and to be willing to take action on the issues that really matter
to people.
9. In addition to the formal arrangements
for "voice", both health trusts and local authorities
have duties to inform and consult the local community. However,
significant variations exist in how they discharge these duties.
If "voice" is to really act as a lever for change in
the NHS, it must become central to everything that commissioners
and providers do. They must also approach "voice" in
more creative ways, seeking feedback and involvement at every
stage and in different ways, particularly seeking out the views
of less vocal sections of the community.
10. Outlining a form of patient and public
involvement that is desirable, practical and that offers value
for money will inevitably depend on one's perspective and priorities.
Which? believes the key characteristics that patient and public
involvement must display are:
(a) An extended reach for patient and public
involvement, that seeks to include more of the population. According
to Which? research in 2005, only one per cent of the population
has ever been active in patient and public involvement forums.
Yet, the public want to be heard, as nearly two-thirds of people
interviewed in our survey said the public were not involved enough
in local and national health care decisions. [69]
(b) The ability for every patient to feel
they can give feedback. A Healthcare Commission survey conducted
in 2005 found that only 6% of in-patients in England were asked
for their views about the quality of their care while in hospital.
[70]
(c) A clear and easy to use complaints procedure
that ensures complaints are responded to effectively. Formal complaints
can be valuable in highlighting improvements that are needed,
but most people do not complain. Often people want an apology
or an acknowledgement that things didn't go to plan. Which? also
believes the NHS needs to be able to cope with more serious concerns.
We believe patients need help when things go wrong to enable them
to raise their concerns. Many patients are afraid to complain,
fearing their care may be jeopardised as a result. This must change.
Making a complaint about health care can be very stressful for
patients and their families. At a time when they should be recovering,
patients are faced with alien processes and unwelcoming procedures,
which more often than not deter them from making a complaint.
(d) Investment and resources to facilitate
success and deliver value for money. These funds would support
the structures and tools needed to seek the views of patients
and the public; provide resources to reconfigure services so they
better meet patients' needs; and train and develop staff who are
so crucial to patients' experiences of the NHS.
(e) A "willing to listen" culture
throughout the NHS that will take on board comments, suggestions
and complaints from the users of its services, with the aim of
delivering better care. We believe structural and process changes
may help to achieve some improvements but fundamentally until
the doctor, the nurse, the PCT, the Secretary of State, see it
as their job to ensure the patient is put first, then the radical
shift in how the NHS provides its service will not happen. The
patient must be put first.
11. Our concern is that frequent national
reviews and reforms of patient and public involvement structures
is indicative of the low value placed on them by Government. We
believe formal patient and public involvement structures need
a period of stability to develop a sustainable capacity in the
community. Fundamentally, the efforts to develop "desirable"
and "practical" involvement opportunities are restricted
by a lack of sufficient resources both now and in the future.
12. We firmly believe that there should
be a national standard of involvement and engagement of patient
and publics in the NHS. The appointment of a Director for Patients
and the Public by the Department of Health is only a recent one,
whereas for years it has employed a Chief Medical Officer, a Chief
Nursing Officer and a Chief Pharmaceutical Officer all of whom
have considerable influence over policy and decision-making processes.
The abolition of the Commission for Patient and Public Involvement
in Health and the absence of a replacement body leaves a vacuum
in the representation and involvement of patients and the public
in national health decision making. It also means that it is not
easy to build up a national picture of how policies are operating
locally. This is a grave cause for concern.
Why are existing systems for patient and public
involvement being reformed after only three years?
13. This is a question for Government to
answer. The rapid reform is puzzling. In the light of Primary
Care Trust reconfiguration, it is perhaps understandable that
some changes to patient and public involvement would be necessary.
However, the radical reform outlined in "A stronger local
voice", coupled with the long heralded abolition of the Commission
for Patient and Public Involvement in Health, leads us to question
the Government's commitment to meaningful and sustained patient
and public scrutiny, inspection and involvement in the NHS.
14. Whatever rationale is offered, it is
clear is that changing the formal arrangements for patient and
public involvement, the second within four years, creates a climate
of uncertainty that has left patient and public involvement at
a local level in a very fragile state.
How should LINks be designed, and how should LINks
relate to and avoid overlap with other bodies?
15. LINks will bring together involvement
arrangements for health and social care, involve community groups,
not just health groups, and be able to take a broad view of health.
While LINks offer some opportunities, Which? is not confident
that they will have sufficient power or resources to play a major
part in facilitating the changes required to achieve the vision
of a patient-centred NHS. LINks are likely to be under-resourced
to fulfil their responsibilities to health and social care, and
although local authorities will receive a targeted specific grant
for their support, it is not ring-fenced money. There is also
considerable uncertainty about they will operate (including their
membership, recruitment and governance structures) and accountability
arrangements.
16. The present funding arrangements for
NHS services means local scrutiny is appropriate. But replacing
the current scrutiny of a trust's activity with oversight and
involvement on a much wider geographical basis seems a retrograde
step, lessening the opportunity for meaningful patient and public
involvement in health according to the principles we have outlined
here. The danger is less one of overlap with other bodies, rather
that the huge remit that LINks will work to leaving some issues
and services neglected.
17. We hope this inquiry can offer further
guidance on the issue of concern about the operation, membership,
and governance of LINks. From our perspective, the proposals have
placed considerable responsibility on these loosely-defined organisations,
without essential guidance, expecting them to fulfil a range of
functions and duties that have historically proved tricky to run.
As we move forward and patient and public involvement develops,
it is essential that we build on what has worked well under earlier
arrangements, and do all we can to ensure that previous experience
is not wasted.
Kate Webb
Which?
10 January 2007
69 Unpublished Patient and Public Involvement Omnibus
2005. Questions were placed on a face-to-face omnibus. 771 adults
in England aged 16+ were interviewed. Back
70
Adult Inpatient Questionnaire 2005, Healthcare Commission. Available
at: http://www.healthcarecommission.org.uk/nationalfindings/surveys/patientsurveys/nhspatientsurvey2005/inpatientsurvey2005.cfm
(accessed 9 January 2007). Back
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