41. Evidence submitted by the Healthcare
Commission (PPI 107)
SUMMARY OF
KEY POINTS
— The Healthcare Commission has
a key role in promoting the engagement of users of services and
members of the public in decisions about the NHS and health services.
We give high priority to incorporating patient experience into
all areas of the regulatory assessment system. Public and patient
involvement helps us to ensure that people get high quality services
that meet their needs.
— We currently do this through:
— our patient survey programme,
which feeds into our annual ratings;
— consulting patient groups on
how well they believe Standards for Better Health are being
met, thus involving patients and the public formally through our
assessment processes;
— seeking input from patient groups
to our work programme, both in general terms and in consulting
users of services when we look at a specific issue such as learning
disabilities or services for older people; and
— learning from complaints made
against the NHS, as demonstrated by our report into complaints,
which will be published soon.
We recognise that these methods still need to
be developed and expanded.
— We believe patient experience
is very important for assessing healthcare and that the NHS is
caring but still not sufficiently user focused. The Healthcare
Commission want to be in the vanguard of developing methods for
understanding and measuring patient experience so as to improve
overall healthcare in this country.
INTRODUCTION
The Healthcare Commission welcomes the opportunity
to respond to the Health Select Committee's inquiry into patient
and public involvement in the NHS.
The Healthcare Commission exists to promote
improvements in the quality of healthcare and public health in
England, and has a wide range of responsibilities, aimed at improving
the quality of healthcare provided to patients. We have a statutory
duty to assess the performance of healthcare organisations, award
annual performance ratings for the NHS and coordinate reviews
of healthcare by others.
We are committed to making a real difference
to the delivery of healthcare and to promoting continuous improvement
for the benefit of patients and the public. This response is based
upon our extensive experience of engaging patients and the public
in our work and assessing the way that other healthcare organisations
do this.
1. What is the purpose of patient and public
involvement?
1.1 This question suggests two slightly
different meanings: what is the point of involving patients and
the public; and what purposes can it serve.
1.2 The overriding reason for engaging patients
and the public in planning, commissioning and delivering health
services—as well as in regulating health services—is
that it helps to ensure that people get high quality services
that meet their needs. We have found that by involving those who
are the intended beneficiaries of health services, commissioners,
providers and regulators can:
— gain a fuller understanding
of how patients and the public experience health and healthcare,
and what they need from health services;
— design and deliver services
that meet people's needs and—as far as possible—suit
their preferences;
— tap into lay expertise that
health professionals may not have;
— provide information that is
relevant and accessible to patients and the public, that will
help them make decisions about how to safeguard and improve their
health and health care;
— give people more control over
their health, their health services and their lives: this in itself
is good for people's health, as there is evidence (see, for example,
the Whitehall Study) [35]that
a lack of control or a sense of powerlessness contributes to ill-health;
and
— in regulating health services,
measure what matters most to patients and the public and promote
improvements that meet their needs.
1.3 Patient and public involvement can serve
a range of purposes, for example:
— helping to decide how local
services should be organised; managing expectations and avoiding
conflict;
— helping to identify local needs
and how they can best be met; identifying gaps in the provision
of services;
— changing individual behaviour,
to adopt a healthier lifestyle;
— drawing on the expertise and
experience of people with specific illnesses/conditions to design
services that meet their needs;
— involving people directly in
delivering services and/or managing conditions—either for
themselves or for relatives or neighbours; and
— helping to decide what information
people need and in what formats and settings, in order for that
information to be as useful as possible.
2. What form of patient and public involvement
is desirable, practical and offers good value for money
2.1 It has been the Healthcare Commission's
experience to date that there is no single form of involvement
that suits all purposes. It is dependent upon the desired outcome.
There are different kinds of involvement, which have been variously
described as parts of a "ladder of participation" or
"spectrum of involvement". These fall roughly into three
categories where the role of the patient/citizen is "passive",
"interactive" or "active". We set out some
examples below. This is not an exhaustive list:
Passive
— providing information (health
education campaigns, leaflets); and
— researching people's experiences
and opinions (quantitative surveys, qualitative surveys, focus
groups).
Interactive
— exchanging views and information
through discussion (public meetings, workshops, online discussions,
citizens' forums);
— considering options and refining
plans and decisions (deliberative panels and workshops, online
Delphi forums); and
— shared planning and decision-making
(consensus conferences, citizens juries, "planning for real").
Active
— devolved decision-making (individual
budget-holding, referenda, neighbourhood planning); and
— devolved service provision (self
care, third sector delivery, co-production).
2.2 There are many different methods of
involving patients and the public. In our experience, the best
way to ensure that the form is "desirable, practical and
offers good value for money" is to be clear about the purpose,
to understand the range of methods available, and to select a
method that suits the purpose. For example, if a reconfiguration
of local services is to be undertaken in partnership with local
residents, it could benefit from engaging them in an informed
dialogue over a period of time, leading to a shared decision.
Forms suited to this purpose would include a deliberative workshop
series, or a citizens' jury. But if a decision has already been
made and you just want to know how local people will react to
the decision, the best thing may be to conduct an opinion poll
or hold a series of focus groups. It is important not to confuse
research and engagement. It is also important to recognise that
providing information is a useful starting point for engaging
people in a dialogue; but on its own it is not very "involving".
2.3 The Healthcare Commission has prepared
a set of "ground rules" for effective engagement. These
apply in most circumstances—see box below
| 2.4 Healthcare Commission ground rules for engaging patients and the public |
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Engage Early
If you are starting to plan and project, you will need to be sure you are gathering and/or conveying information that is really useful. Ask who is likely to be affected and who is supposed to benefit from the work. Start by finding out what matters most to them and what they need to know. |
| ● |
Know what you can change
You must be able to take account of what people tell you. That means being clear about what decisions you still have to make, what is negotiable, what you can and cannot change, and where there is choice between specific options. |
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Embed engagement in the work process
Engaging patients and the public should be integrated into the design of your project and work plan - from start to finish |
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Include all the right people
Think carefully about who should be engaged with patients and the public. Is it a particular group of patients or carers? Is it appropriate to engage members of the wider public? What about black and minority ethnic groups, disabled people and children? You may need to make special efforts to reach out to those who are especially vulnerable to ill health, but whose voices are seldom heard. |
| ● |
Choose your methods to suit your purpose
There are many different ways you can engage with patients and the public. Be clear what it is you are trying to achieve. For example, think about whether you want to carry out opinion research, or involve people in an informed dialogue. Then select one or more methods that will enable you to achieve your purpose. |
| ● |
Provide clear information
Make it clear to those you invite to participate what you are doing and why, including what you can and cannot change in the light of what they say. Provide them with as much information as possible to help them participate fully in a dialogue with you. |
| ● |
Make sure you have adequate resources
Work out how much it will cost and where resources will come from |
| ● |
Keep things in proportion
Consider the scale of the project, as well as your timescale and budget. Keep your plans for engaging patients and the public in proportion with these factors. |
| ● |
Act on what you learn
What you learn from patients and the public about what matters most to them and what they want to know should, as far as possible, inform and change your work. |
| ● |
Always give feedback
Tell your participants what you have learned from them and what action you intend to take in response. If you do not intend to act on what you have learned, explain why not. Wherever possible, show what has changed as a result of your actions. |
3. Why are existing systems for patient and
public involvement being reformed after only three years?
3.1 Notwithstanding the admirable work of
many Public and Patient Involvement (PPI) Forums, and the obvious
disadvantages of changing structures within a short period of
time, the main disadvantages of the existing system, based on
our experience of working with forums and the Commission for Public
and Patient Involvement in Health (CPPIH) over the last two years,
are as follows:
— forums can find it hard to be
genuinely inclusive, or to reach out to disadvantaged and minority
groups, and younger people;
— the current arrangements encourage
an "us and them" approach to public involvement. In
the worse cases, polarised opinion and mutual distrust diminish
opportunities for constructive partnership working and consensus
building. This does not help local people to get what they want
from local services any more than it helps NHS trusts to provide
"patient centred" health care;
— many voluntary organisations,
which have much experience of working with patients and the public,
have been left out of the dialogue between trusts and forums.
The forums have tended to speak for local people, rather than
acting as a conduit between trusts and the wide range of patient-led
and community-based groups that exist in most localities. The
effect can be exclusive;
— the existing system—a
complex set of arrangements for patient and public involvement,
with a forum attached to each trust and an overarching Commission—may
discourage trusts from taking full responsibility for making sure
that they engage effectively with their local residents and client
groups;
— this is a "one size fits
all" model, which may not adapt easily to changing circumstances
in the NHS or to differing local conditions;
— as health and social care become
more closely aligned, and as there is increased partnership working
and shared planning between NHS trusts and local government, it
is doubtful whether PPI forums are well suited to bridging the
gap between NHS and local government services; and
— the fact that the government
and the NHS are trying to reduce the burden of regulation on trusts
does not sit easily with the forums' having a statutory right
to visit and inspect local services. The Healthcare Commission
carries out inspections and investigations, and has a strong commitment
to involving patients and the public in its regulatory processes.
It is debatable whether a separate right of inspection on the
part of forums is necessary or appropriate.
4. How should the LINks be designed?
4.1 We strongly support the idea of a local
involvement network, located in the local authority, which acts
as a conduit between health and other public sector organisations,
and groups representing patients and the public. This model, recommended
by the expert panel convened by the Department of Health, is a
facilitative mechanism for engagement, not a new institution that
"does engagement" for the area in which it sits. In
other words, its remit is to help health and other public sector
organisations to reach out into the community; it does not pretend
to speak for the community. It is important in our view that the
LINk facilitates engagement with independent groups and organisations
at local level, and is able to help local voices be heard and
heeded without interference. The LINk should safeguard the integrity
of the process of involvement, and authenticity of local voices.
They should have duties to perform their role as enablers and
conduits. We do not support efforts to recreate PPI forums by
LINks becoming independent statutory bodies with "rights
of inspection".
4.2 LINks should not be clubs or membership
organisations; they are networks. Any local organisation representing
patients and/or the wider public should be part of the network.
One local organisation—or a consortium—will need to
host the network. The local authority partnership with the primary
care trust should appoint the host organisation.
4.3 Funding should be secured for more than
one year at a time, and should be sufficient to provide resources
that will maintain and build the network, and enable local groups
to participate in consultations and dialogue with trusts. Funding
should be provided for this purpose by the Department of Health.
It seems sensible that the LINks should also be supported by the
local authority, so that they become the main conduit for patient
and public involvement for councils as well as trusts (see below).
4.4 LINks should focus in the first instant
on enabling NHS trusts to engage with groups representing users
of services and the public at local level. They should facilitate
consultation and dialogue about health and social care services.
Once established, they should be encouraged to extend their focus,
with support from local authorities, so that they facilitate consultation
and dialogue about other local public services as well.
4.5 As enabling or facilitative mechanisms—networks,
not institutions—LINks should not have statutory powers.
NHS trusts should have a statutory duty to engage with patients
and the public via the LINks.
4.6 We agree that a LINk should be established
in each local authority with responsibilities for social services.
Trusts should have a statutory duty to engage patients and the
public through them.
4.7 The National Centre for Involvement
(NCI) should be responsible for building capacity of LINks and
trusts to promote effective engagement with patients and the public.
The focus of LINks should be local rather than national. There
is no need for a national coordinating body, although it may be
appropriate for the NCI to bring them together regularly so that
they can learn from each other, as a means of building their capacity.
5. How should LINks relate to certain organisations
and avoid overlap?
5.1 LINks should work closely with overview
and scrutiny committees and refer issues that seriously concern
local groups to them.
5.2 It should be possible for FT members'
councils and boards to participate in the LINk in the same way
as other local patient led organisations would do so.
5.3 The Healthcare Commission should be
able to engage patients and the public locally via the LINks.
It should have a duty to involve patients and the public, via
the LINks and other means, in assessing the performance of healthcare
organisations, including follow-up inquiries and inspections when
it identifies risks of under-performance, as well as service reviews
and audits. The LINks should be invited to coordinate commentaries
from patients and the public, through groups and individuals that
are part of the network, for inclusion in the declarations made
by trusts as part of the annual health check.
5.4 Effective, continuous engagement between
trusts and local people via the LINks and other means (including
PALs, Patient Advice and Liaison Services) should reduce the risks
of complaints arising, but it is not envisaged that LINks would
be involved in complaints procedures.
6. In what circumstances should wider public
consultation (including under Section 11 of the Health and Social
Care Act 2001) be carried out and what form should this take?
6.1 NHS trusts should undertake wider public
consultations when they are considering making significant changes
to local services. In principle, these consultations should follow
the ground rules set out in Box 2.4.
Healthcare Commission
January 2007
35 Marmot MG, Davey Smith G, Stansfeld SA, Patel C,
North F, Head J et al Health inequalities among British
Civil Servants: the Whitehall II study, Lancet 1991; 337:1387-1393. Back
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