17. Evidence submitted by the Commission
for Patient and Public Involvement in Health (PPI 109)
EXECUTIVE SUMMARY
Patient and Public Involvement is essential
for the achievement of key strategic objectives in health policy.
A system of patient and public involvement should provide patients
and the public with an effective voice alongside other decision
makers in health and social care, locally, regionally and nationally.
The PPI agenda has been characterised by uncertainty and indecision
over the past four years and CPPIH has managed to progress the
PPI agenda in difficult circumstances. Despite this considerable
capacity for engagement has now been built, which should be nurtured
under any new arrangements. The Commission welcomes the proposals
to widen patient and public involvement. LINks as currently proposed
are unlikely to deliver the objectives stated for PPI. Resourcing
issues must also be examined to ensure that the aspirations laid
down for LINks are attainable within the finances available to
them, if the Government's ambitions for LINks are to be delivered.
1. The Commission for Patient and Public
Involvement in Health (CPPIH) was established by the NHS Reform
and Healthcare Professions Act 2002 and became operational in
December 2003. It is an independent, non-departmental public body,
sponsored by the Department of Health.
2. CPPIH now oversees and supports 402 statutory
Patient and Public Involvement (PPI) Forums, made up of local
volunteers, one for each Primary Care Trust, NHS hospitals trust,
mental health trust and ambulance trust in England. It also provides
advice to the Secretary of State on patient and public involvement
(PPI).
3. Since December 2003 there have been a
variety of proposals and changes of direction affecting PPI Forums
and the CPPIH. In June 2004, as part of the Arm's Length Body
Review, it was announced that the CPPIH would be abolished in
2006. This was subsequently postponed until summer 2007 and then
to the end of 2007. This long period of uncertainty and unclear
direction has significantly impacted on the development and achievements
of PPI Forums and the CPPIH
4. CPPIH welcomes the Health Select Committee's
inquiry and hope the Committee's deliberations will contribute
clarity and leadership in developing PPI policy. CPPIH is pleased
to submit evidence for the Committee's consideration and is willing
to expand in oral evidence, if so invited.
THE PURPOSE
OF PATIENT
AND PUBLIC
INVOLVEMENT
5. Public involvement aims at securing the
accountability of decision-makers to the public, whether local
or otherwise. The case for it derives from the right of citizens,
whether or not they are current users of NHS services, to actively
contribute to discussions about the use of public funds and the
difficult and complex choices involved in applying finite resources
to health and social care. Public involvement should be incorporated
into decision-making on the development and planning of services
including: service planning (what services should be provided),
strategic planning (what should be achieved by delivering those
services) and commissioning (who delivers services). It is particularly
important to securing improved public or population health.
6. Patient involvement takes place at the
interface between the patient and the actual operation and delivery
of care. It aims to improve the effectiveness of services, and
should contribute to securing equality in service delivery. Information
gained from this process may also be used to inform higher level
decisions about commissioning and operational delivery (how services
are delivered and where).
7. Whilst there is a large amount of academic
literature on patient and public involvement, there is a lack
of agreement and clarity about what PPI is, what it is for and
what national policy on PPI should be.
8. In CPPIH's view, the objectives of PPI
are to:
— improve outcomes in health and social
care;
— facilitate citizens sense of "ownership"
of health policy and services;
— secure equality of opportunity in
receipt of health and social care; and
— address inequalities in the health
of the population.
9. To further these objectives the role
of a PPI system is to provide the public with an effective voice
alongside health and social care professionals, service managers
and planners, and national policy makers in all health related
decisions-making.
10. In our view real progress has been made
in recent years in joint decision making between individual patients
and practioners, and through initiatives such as the expert patient
programme. However, there is still much to be done to deliver
real patient and public involvement in decisions that affect health
for groups, communities and indeed nationally.
11. There is evidence from many sectors
(especially outside health) that involvement of stakeholders (especially
those most affected by its outcomes) in decision making at all
levels, including policy making, results in better decisions and
ones which are understood and accepted by service recipients and
taxpayers. However, this does require a change of culture within
the NHS and social care and also amongst the public.
12. The role of PPI in securing longer term
strategic objectives in health policy was underlined in the Wanless
Report. It warned that failure to achieve a "fully engaged
scenario" would have serious implications for the nation's
ability to resource health care in the future.
What form of patient and public involvement is
desirable, practical and offers value for money?
13. The Kennedy Report, which emphasised
the value of patient and public involvement (PPI) stated:
"There are, perhaps, four principal areas
in which the involvement of the public is most pressing, arising
from a commitment to a patient-centred NHS. They are: the development
and planning of services; the operation and delivery of services;
the competence of healthcare professionals; and the protection
of vulnerable groups. In each case the public must be involved
at all levels from the national to the local."[9]
"The problem...concerns how, in a modern
democracy, a public service such as the NHS can have embedded
within it not only the principle that it exists to serve the public,
but also mechanisms to ensure that this aspiration is translated
into reality." [10]
14. Writing on deliberative democracy, the
Stanford University academic James S Fishkin concluded that "getting
the informed and representative views of the public requires a
means to facilitate discussion and grant access to good information
and differing experts, and a public space where people feel free
to express themselves." [11]
15. Health professionals and health service
managers have a well-established role in decision-making, as have
institutional stakeholders such as local government in social
care; historically neither patients nor the public have been included.
16. Fully involving patient and publics
in decision-making requires the following to be in place:
— A clear policy direction.
— Supporting legislation, setting out
rights, duties and governance.
— A means of knowledge sharing.
— A process for escalation.
17. CPPIH believes there must be publicly
funded mechanisms to facillitate patient and public involvement,
not least because of the current pace of profound reform in health
and social care. These mechanisms should be governed within overall
legislative frameworks which provide:
— a remit to secure the full involvement
of local communities;
— a statutory right for patients and
the public to be involved in decision-making locally, regionally
and nationally;
— a focus to address deficiences in
equality of access especially for those that are less often heard;
— a clear opportunity for escalation;
— processes to ensure value for money;
and
— the ability to review and learn from
experience in the rapidly changing environment of health and social
care.
18. Involvement should occur at every level
of decision making but should be appropriately focussed in order
to be practical and provide value for money.
19. In commissioning and planning a priority
should be to secure a role for representatives of the public in
decision-making and policy making locally, regionally and nationally.
A useful model might be that of trade union representatives involved
in collective bargaining, where a representative has the authority
to negotiate with management on behalf of the work force derived
from the fact that he or she represents the views and interests
of other people.
20. This type of involvement would also
be effective in improving public "ownership" of the
challenge and complexity of decision making in health and social
care involving finite resources in the service of ongoing and
growing demand. There is strong evidence that understanding and
commitment are much improved if people feel they have been actively
involved, or properly represented, in decision-making.
21. Public involvement is key to addressing
deficiencies in equality of access to health and care services
by ensuring the needs of disadvantaged sections of the population,
and of people with certain conditions, are properly met.
22. At a service improvement level, patient
involvement should ensure that a wide range of experience is transmitted
to and taken seriously by decision-makers particularly that of
the less often heard. It should be a means to ensure that vocal
and powerful patient interest groups do not dominate debate.
23. Patients can help secure efficient services,
for instance by commenting on management processes that do not
fit in with people's needs. An example of this is the perverse
practices used to achieve government's target that all patients
should be able to see a GP within 48 hours (itself the result
of public demand) which in some instances, prevented patients
from making advance appointments. Considerable inconvenience could
have been avoided had the patient perspective been sought (and
indeed GPs) and acted on at an earlier stage. As it was the issue
was only taken seriously when it was raised with the Prime Minister
on live television.
24. Patients can further contribute to effective
service delivery by commenting on the human elements of treatment,
for example on whether health professionals treat them with dignity
and honesty, convey useful information about their treatment and
make them feel confident they are getting the best care.
Why are existing systems for patient and public
involvement being reformed after only three years?
25. Health and social care is undergoing
substantial reform and it is to be expected that changes will
be needed in the infrastructures for, and focus of, PPI especially
as they themselves are still growing and developing.
There is a therefore an ongoing need for formal
review and assessment of how PPI is developing alongside this
changing landscape of health and social care in order to provide
evidence for any further changes to be made.
26. CPPIH agreed with the Department of
Health's decision to take a fresh look at patient and public involvement
in the light of very significant NHS reform and changes in social
care. We had already told the Department that the current arrangements
are inflexible, including the statutory requirement of one forum
per trust, and placed far too much responsibility on too few people
to deliver effective public engagement, let alone on the scale
required in the reformed NHS. The regulatory framework stemming
from PPI Forums" inspection role brought with it a bureaucracy
that many potential forum members found off-putting.
27. However, the reform process has unfolded
against a background of constant change in policy and an unclear
direction. Its origins lie in the Department of Health announcement
in December 2003 that a review of Arm's Length Bodies (ALBs) would
take place in the first half of 2004, as it wanted to reduce the
number of its sponsored ALBs, reduce the staff headcount and achieve
a significant saving in expenditure. The Commission for Patient
and Public Involvement in Health was included in the Review of
ALBs only two weeks after it became operational.
28. At first it was expected that the DH
would merge CPPIH with another ALB (probably the Healthcare Commission),
however, on 22 July 2004 the Department announced it would be
abolished.
29. On the day of the announcement of its
abolition, the then Minister for Health, Melanie Johnson MP, said
of the CPPIH:
"I emphasise that our decision to abolish
the commission was not borne out of concerns about its performance...
The commission's performance, particularly its achievement in
setting up the forums and recruiting about 5,000 members within
a tight time scale, is highly commendable."
30. It appears, therefore, that the ALB
review was the initial driver of of PPI reform, rather than a
change in PPI policy in Whitehall or concerns about CPPIH's performance.
Whereas CHCs had been in existence for about 28 years, CPPIH had
hardly been operational for sufficient time to draw any conclusions
about its effectiveness in carrying out its organisational and
wider public responsibilities. However, the consequence of this
decision was to leave the Depatment of Health with the task of
finding an alternative body to oversee PPI Forums and appoint
Forum Members.
31. At that stage PPI Forums were seen as
continuing to play a vital role. The Health Minister Rt Hon Rosie
Winterton MP had written to Forum Members on 28 May 2004:
"I want to reassure you that the future
of PPI Forums is safe. PPI Forums whilst still in their early
days are beginning to carry out valuable work and I am pleased
with the progress that is being made. We do not want to waste
the opportunity we have got with forums to make a difference to
the NHS and people's experience of it".
32. This message was reinforced to Forum
members in a letter from the CPPIH Chair and Chief Executive on
23 July 2004:
"Ministers have made clear that PPI Forums
themselves will continue to exist, referring to them as the `cornerstone
of the new arrangements'."
33. It was also proposed on 22 July, 2004
that the NHS Appointments Commission would take over forum member
recruitment and performance management and Forums would develop
links with the Healthcare Commission. Meanwhile the numbers of
Forums would be reduced, with the abolition of NHS Trust Forums,
Ambulance Trust Forums and Mental Health Trust Forums. Instead,
there would be one PPI Forum for each Primary Care Trust.
34. The Department of Health embarked on
a limited consultation exercise which concluded in March 2005
that the remit of PPI Forums was too broad, and that forums should
concentrate on monitoring and reviewing NHS delivery, seeking
the views of the public and making recommendations to the NHS.
35. In August 2005, however, following a
decision to postpone the abolition of CPPIH (scheduled for August
2006), to the summer of 2007, the Department of Health embarked
on a Strategic Review of PPI and abandoned the proposals referred
to in paragraph 33.
36. This coincided with other Department
of Health policy streams: the national consultation exercise in
autumn 2005 leading to the Our Health Our Care Our Say White Paper
on healthcare outside hospitals and the publication in July 2005
of "Commissioning a Patient-Led NHS" which proposed
to that Primary Care Trusts' primary role would be commissioning,
heralding a push towards a greater plurality of service providers,
greater use of the private and voluntary sectors to provide services
to NHS patients and the marketisation of the NHS.
37. CPPIH put forward proposals in November
2005 for supported local health networks, with a much larger individual
membership, and local voluntary and community sector involvement,
to the Minister of State for Health. We envisaged health networks
being funded, supported, performance managed and championed by
a new national body and developing from existing PPI Forums at
their core.
38. CPPIH was inexplicably excluded from
membership of the subsequent Expert Panel which sat between March
and May 2006, chaired by Harry Cayton, Director of Patient Experience
and Public Involvement at the Department of Health and Ed Mayo,
Chief Executive of the National Consumer Council. However, we
believe our proposals influenced the recommendations contained
in "A Stronger Local Voice".
39. CPPIH supports the department's aim
of introducing more local flexibility and ensuring more people
are able to become involved.
LOCAL INVOLVEMENT
NETWORKS
40. Decisions about health and social care
are made at a variety of levels. While some are made locally in
individual trusts, others are made in PCTs, local government,
SHAs and nationally. To be effective, PPI and particularly public
involvement needs to be in place at all of these levels.
41. In this context Local Involvement Networks
(LINks) as set out in A Stronger Local Voice will achieve only
some of the objectives set out in paragraph 4. LINks are likely
to be most effective in delivering patient involvement in local
decisions about operational delivery and providing patient and
some public involvement in local commissioning decisions.
42. CPPIH has serious concerns about the
LINk related clauses in the Local Government and Public Involvement
Bill (clauses 153-164). Far too much is left to local discretion
with little of the detail in the primary legislation, relying
heavily on secondary legislation.
43. This is likely to result in a lack of
uniformity and lead to significant service quality variations
in LINKs (creating another postcode lottery in PPI). (Ironically,
these were criticisms of the old Community Health Councils. (CHCs
system, which led to the establishment of CPPIH.)
44. Morover, being purely local organisations
with a local remit LINKs as currently described will have no mechanism
or remit for influencing for example regional decisions on major
service redesign or reconfiguration, or on national policy.
45. The CPPIH view is that further attention
should be given to national co-ordination and oversight as described
in the following sections.
REMIT AND
LEVEL OF
INDEPENDENCE
46. Clause 153(2) of the Local Government
and Public Involvement Bill sets out the remit of LINks. It states
that the activities to be carried out are:
— promoting and supporting the involvement
of people in the commissioning, provision and scrutiny of local
care services (services provided as part of the health service
in England; or services provided as part of the social services
functions of a local authority);
— obtaining the views of people about
their needs and experiences of local care and making those views
known; and
— making reports and recommendations
about how local care services might be improved to persons responsible
for commissioning, providing, managing or scrutinising local care
services.
47. CPPIH welcomes the inclusion of social
services as well as health services within the remit of LINks.
In addition we recommend that LINKs have additional responsibilities
to:
— tackle the barriers to engagement,
ensuring that powerful interests do not dominate debate or indeed
their own proceedings; and
— address deficiencies in equality
of access to services especially for those that are less often
heard.
48. We are concerned that the legislation
only refers to local care services. Additional mechanisms and
approaches are required which can influence decisions at all levels
including high level strategic and commissioning decisions. These
mechanisms should involve LINks working together in a co-ordinated
manner to provide involvement in these other decision-making processes.
49. Independence is important for the LINks
to be credible and to avoid undue influence by health professionals,
managers and local government, especially where local government
itself is responsible for the provision of services. In the CPPIH
experience the very fact that PPI Forums are independent organisations
has been crucial to attracting volunteer members, yet the Bill
is silent on this matter.
50. LINks should be accountable to local
communities for the substance of their work, and to an outside
authority, for performance management purposes—to ensure
each LINk performs to national standards, offers effective leadership,
works in line with best practice and has appropriate governance
in place. To avoid conflicts of interest or politicisation the
outside authority should not be an NHS body or the local authority.
No such body is planned as a successor to CPPIH.
51. CPPIH regrets that the Local Government
and Public Involvement Bill makes no provision to hold individual
LINks to account beyond the requirement to produce an annual report
according to the direction of the Secretary of State.
GOVERNANCE
52. To ensure the LINk performs effectively,
it should, by statute, have a governing body on which representatives
of individual members and representatives of the local community
may serve. This body would be responsible for making decisions
about its work and the allocation of resources, communicating
with the wider membership and representing the LINk to stakeholders,
the media, elected representatives etc.
53. The governing body should be required
to adhere to Independent Commission on Good Governance in Public
Services standards to ensure the LINk is well directed and controlled,
and has transparent rules for making decisions about objectives,
priorities and its use of public money.
MEMBERSHIP AND
APPOINTMENTS
54. CPPIH regrets that the Local Government
and Public Involvement Bill is silent on membership and governance
of LINks and does not allow the Secretary of State the power to
make regulations on such matters. We believe the LINk should have
a formal membership and actively encourage and support new members
and recommends the Bill be amended accordingly.
55. The CPPIH welcomes and strongly supports
the move towards broadening and simplifying LINK membership. However,
we continue to urge an evolutionary transition from PPI Forums
to LINks. In the past three years, forum members have acquired
considerable knowledge of their local NHS, and developed relationships
with trusts, with local community organisations, with the public
and with Overview and Scrutiny Committees. That experience and
those relationships will be crucial to making the new system work.
56. For individuals, membership would confer
benefits such as access to training, a right to submit proposals
for the LINks work programme, and the right to take part in LINks
internal decision-making. Members would also receive information
and access opportunities for wider involvement in civic life.
57. Voluntary and Community sector organisations
should also play a significant part in the LINks work. There could
be a federal membership structure with separate sections for individual
members and representatives of VCSOs.
58. There should be some national criteria
and rules for membership to avoid the inconsistency in membership
rules (and indeed governance arrangements) which were a feature
of Community Health Councils and which the Department of Health
itself used as a justification to abolish them .
FUNDING AND
SUPPORT
59. The CPPIH experience of the the current
Forum Support Organisation system demonstrates that support needs
to be available locally, based on providing secretarial, administrative
and organisational support, research and outreach
60. Capacity for effective involvement is
currently limited and needs to be nurtured, to encourage and promote
involvement and ensure that people have the level of knowledge
and understanding of how health and care services are organised
and delivered and of the decision-making processes to contribute
effectively.
61. Effective PPI requires a substantial
investment in capacity building, particularly within local authorities
serving large or diverse populations, or large geographical areas
with both urban and rural communities, or areas with high levels
of deprivation.
62. To achieve this, training and support
needs to be available to participants, particularly those who
have not engaged with healthcare decision-makers before.
63. CPPIH (and other organisations) have
begun to build capacity for involvement in service improvement
and operational delivery, although this is a continuous process
and needs to be sustained. We have begun capacity building in
the areas of PPI in commissioning but this is still at an early
stage. Capacity for PPI in the development and planning of services
still needs to be developed.
64. LINks should also have access to research,
policy and communications capacity to match that available to
commissioners and providers of health services.
65. Policy and strategic decisions affecting
local healthcare are also made regionally by SHAs or by national
government, therefore local PPI organisations will benefit from
a means to share information and good practice, comment on health
and social care policies, work together in a co-ordinated way
and have an effective escalation process to ensure involvment
in regional and national decision making.
66. There should also be a national framework
of support to carry out detailed research, procure legal and policy
advice, share best practice and facilitate communication between
LINks.
RESOURCES
67. The Government response to a Stronger
Local Voice set out a huge range of tasks for LINks including
developing relationships with a wide range of individuals and
organisations and maintaining regular communication in a wide
variety of formats, collecting information from a wide range of
sources and passing that on to commissioners and providers of
services, regulators and inspectorates; developing specific relationships
with local commissioners, service providers, OSCs and regulators
of health and social care; acting as a hub for networks of service
user groups and other organisations.
68. A considerable budget will be required
to realise the Government's ambition of the public being involved
in decision-making, particularly involvement with commissioning
and the development and planning of services. CPPH recommends
that decisions about proposals to reform PPI are made in full
knowledge of the resources and funding that will be made available
to deliver them.
69. The legislation that established PPI
Forums and the CPPIH was decided in the absence of this information
and consequently many of the intentions of that legislation were
unachievable due to funding restrictions.
70. Historically, very limited resources
have been devoted to PPI. In 2005-06 the Department of Health
expenditure was £74.8 billion; the CPPIH budget was £31.7
million, (reduced to £28 Million in 2006-07). CPPIH and PPI
Forum expenditure thus represented 0.04% of the total Department
of Health spend in 2005-06.
71. An analysis by the Commission on the
budget required to deliver even the local LINk proposals gives
a budget requirement of £64 million—more than twice
the CPPIH budget. It should be remembered that many LINks will
be required to deliver PPI over large geographical areas.
72. In 2006-07 CPPIH had a budget of £28
million and if all of this money was divided equally between the
150 LINKs this would amount to circa 180k each. Our understanding
is that a formula will be applied so LINks that cover a bigger
population ie Manchester will receive more than LINKs that cover
a much smaller area ie Isles of Scilly. Based on our experience
of running Forum Support Organisations a typical LINK would need
to receive a budget of over £424k. CPPIH can provide a breakdown
on request.
AREAS OF
FOCUS
73. LINks should focus on securing systematic
local public involvement in improving health, social care and
public health, from local service improvement through to commissioning
and strategic decision-making. This is not just about gathering
and presenting public views but helping people input directly
to decision-makers and securing change based on that input.
74. They should also work together in a
co-ordinated way and have an effective escalation and representation
process to ensure involvment in regional and national decision-making.
STATUTORY POWERS
75. These are important to ensure LINks
avoid becoming mere talking shops and are able to make a real
impact on decision-making.
76. CPPIH is pleased that the Local Government
and Public Involvement Bill confers on the LINk the right to demand
(and receive) information from service providers and make reports
and recommendations. However, we are concerned that rights of
referral to Overview and Scrutiny Committees seem to be restricted
to referrals of social care matters.
77. PPI Forums have powers under the NHS
Act 2006, to refer any matter they consider appropriate, for consideration
by a relevant overview and scrutiny committee, or any other authority
the Forum thinks fit.
78. Clause 156 of the Bill (Service Providers
duties to allow entry to authorised representatives of the LINk)
includes provision for conditions to be satisfied before a duty
arises, including:
— provision limiting the extent of
a duty;
— provision for imposition of conditions
and restrictions;
— limitation of the duty to allow entry
to certain types of authorised representative; and
— limiting the hours during which a
duty applies.
79. Existing Forum members have been clear
about the value they perceive in their existing powers of inspection.
While the CPPIH welcomes the inclusion of these powers it fully
supports the limiting of them to a restricted number of authorised
representatives of each LINk. In our view this supports the need
for some powers of inspection but also supports the objectives
of wider involvement and simplification of the general membership
processes.
We are, however, concerned that the proposed
rights of entry are more limited than those currently enjoyed
by PPI Forums and urges conditions to be kept to a minimum.
80. Representative of LINks with powers
to enter premises where services are provided, will have to be
subject to inquiries into their suitablilty, including criminal
records checks as PPI Forum members currently are. The government
must make clear who is responsible for these inquiries and for
training authorised representatives in the effective use of powers
and how these activities wil be funded and resourced.
81. CPPIH recommends that LINks should also:
— Have powers to commission research
and other work from outside organisations when necessary.
— Have the means to develop guidance
and share best practice as well as to raise public concerns at
regional and national level. It would be more cost effective to
provide such support at a national level.
82. CPPIH recommends that there should also
be statutory rights for the public to participate in decisions
about strategic commissioning and service planning and the power
to secure a review of decisions if it believes they were taken
without meaningful consultation or effective patient and public
involvement. These strategic decisions may often be made at regional
or national levels and mechanisms must be provided for LINks to
work together to provide involvement outside their local remit.
RELATIONS WITH
LOCAL NHS TRUSTS
83. CPPIH agrees LINks should focus on the
"whole patient's journey" rather than on institutions.
Nevertheless, they will need effective relationships with trusts,
which should draw on their ability to network. LINks should play
the role of the trust's critical friend, making available advice
and local knowledge. A relationship with the local LINk would
be one of the means by Trusts could involve people. However, merely
involving the LINk would not relieve the trust of its duty of
wider consultation.
84. The current experience of PPI Forums
associated with specialist Trusts has clearly demonstrated the
value of these specific relationships. With the planned abolition
of PPI Forums, mechanisms need to be in place to ensure that this
value can continue to be delivered within the larger LINks. There
is a need to ensure that specific relationships with specialist
Trusts can be maintained for service users.
NATIONAL CO
-ORDINATION AND
OVERSIGHT
85. Given time, local LINks may themselves
develop mechanisms for working together and gaining involvment
in regional and national decsision-making provided that those
opportunities are made available to them.
86. However, the experience of the CPPIH
is that, in the same way in which capacity has needed to be built
at a local level for local involvment, some driving and supporting
mechanism is required to build capacity for regional and national
involvement. This is especially so in strategic decision-making,
planning and development of services if these are to occur in
the timeframe required to support the significant changes and
reform currently underway in health and social care.
87. Throughout this section we have identified
the need for a framework outside the individual LINks to:
— Support patient and public involvement
at regional and national levels.
— Provide co-ordination for local LINks
to work together.
— Encourage communication between LINks
and the sharing of best practice.
— Provide leadership for capacity building.
88. And a national framework for service
quality and governance to ensure a degree of consistency in LINks
local operations.
89. There is a therefore an ongoing need
to review and assess how PPI is developing alongside the changing
landscape of health and social care.
90. This framework should have access to
the knowledge and expertise built up by CPPIH and could evolve
from the existing organisation. An appropraiate body to deliver
these functions should iteslf be independent of governemnt and
accountable to Parliament.
91. Based on the CPPIH experience with PPI
Forums and NHS trusts there is bound to be disagreement from time
to time between independent PPI organisations and health and social
care managers and professionals, and seek to ensure that public
concerns can be built onto the policy making process at local
regional and national level. A national organsiation would, for
example, help a LINk raise issues which cannot be resolved locally
or which have regional significance, with strategic health authorities.
In cases where there is a national dimension, it could provide
a powerful voice for LINks at national level.
HOW SHOULD
LINKS RELATE
TO AND
AVOID OVERLAP
WITH OTHER
BODIES
92. There are many mechanisms for involvement,
of which LINks will only be one. All public sector organisations
should seek to involve the public in their work and it is inevitable
the work of LINks will overlap with this. Given the current stage
of development of PPI it is unavoidable that there will be multiple
mechanisms, multiple opportunities for the public to be involved
and some confusion and overlap. However it is important that LINks
remain a clear independent voice to provide involvement even where
other mechanisms are not in place or are not fully effective.
However, more will be achieved through co-operation and LINks
should be encouraged to develop productive relationships with
other bodies.
93. The current structures for health and
social care planning and delivery are only now beginning to move
towards a "Patient led NHS". In addition to professional
dominance within health and social care, there is a democratic
deficit as neither the public nor their representatives can force
local decision-makers in PCTs and trusts to reconsider proposals.
One of the aims of PPI should be to help promote democracy and
accountability, and this should be embedded in the relationships
of LINks with other bodies.
OVERVIEW AND
SCRUTINY COMMITTEES
94. A report published by the Centre for
Public Scrutiny found that the Overview and Scrutiny Committee
"holding to account" function is underdeveloped. [12]OSCs
have no powers to overturn decisions, relying instead on persuasion
and argument for influence. Productive relationships with LINks
should help OSCs develop that role, with LINks acting as expert
witnesses. They should be able to refer inform and advise the
OSC, have the right to have their issues place on the OSC agenda
and have speaking rights.
95. LINks and OSCs should be encouraged
to carry out joint planning of work programmes, but without compulsion
on LINks to adopt the OSC's priorities.
96. Overview and Scrutiny Committees may
refer matters to the Secretary of State for Health, but it is
she, not the OSC, who makes the final decision. PCT and NHS Trust
Boards are accountable to the Secretary of State, not to representatives
of local communities.
FOUNDATION TRUSTS
97. As with all Trusts, LINks should play
the role of the trust's critical friend, making available advice
and local knowledge. A relationship with the local LINk would
be one of the means by Trusts could involve people. However, merely
involving the LINk would not relieve the trust of its duty of
wider consultation.
98. The primary roles of Foundation Trust
boards and members councils are related to governance of institutions.
They are not representative in nature, they do not guarantee accountability
through patient and public involvement and the two roles should
not be confused. The first responsibility of board members is
to the board, not to the community.
99. Foundation Trusts are not accountable
to the Secretary of State, instead local residents registered
as members of the foundation trust have the right to vote for
members of the board of governors. It is unclear how foundation
trust members can exercise real influence over the running and
development of the trust. Moreover, membership of foundations
trusts is self-selecting and not representative of many groups
within local communities.
100. LINks should, however, be encouraged
to develop relationships with Foundation Trust Boards and members
councils without compromising their independence.
INSPECTORATES
101. LINks will need to work closely with
inspectorates, such as the Healthcare Commission and Commission
for Social Care Inspection, to be an active stakeholder in annual
performance reviews by Trusts and by regulators and in between
those to alert them to serious concerns about service providers.
CPPIH recommends LINks be given the power to refer matters of
concern to an inspectorate as appropriate and that the Inspectorates
have a duty to consult LINks.
102. It is vital that inspectorates also
involve the public in decisions about their own activities. PPI
has a key role to play in public accountability of the role of
inspectorates themselves.
COMPLAINTS SYSTEMS
103. CPPIH does not envisage LINks playing
a role in assisting or acting as advocates for individual complainants.
However, information about services generating significant numbers
of complaints would alert LINks to service issues in their local
area and should be regularly provided in summary form.
104. In addition LINks should have a role
in establishing patient and public views on the performance of
the Independent Complaints Advocacy Services.
PUBLIC CONSULTATION
OVER CHANGES
TO SERVICES
IN BOTH
PRIMARY AND
ACUTE SECTORS
(SECTION 11 OF
THE HEALTH
AND SOCIAL
CARE ACT
2001)
105. The value of consultation is that it
brings the public together in making decisions about finite public
resources. This should happens at all levels locally, from service
delivery to commissioning and strategic planning, and nationally
at the policy level. CPPIH welcomes the Committee's attention
to Section 11 of the Health and Social Care Act, (now section
242 of the National Health Service Act 2006).
106. There should be an explicit duty on
health and social care decisions-makers to consult LINks. At a
minimum consultation should be carried out on decisions about
the following:
— What services should be provided.
— Reconfiguration of services.
— Where services should be provided.
— The criteria for outsourcing services.
107. We are concerned that the proposed
amendments in clause 163 of in the Local Government and Public
Involvement Bill narrow the range of issues on which consultation
is required to proposals which would have a substantial impact
on the manner in which the services are delivered to users of
those services, or the range of health services available to those
users only.
108. The Committee will recall there was
no requirement to consult under section 11 over the recent PCT
reconfigurations as these were classed as managerial and administrative
decisions by the Department of Health and considered to have no
connection to service delivery. The consequence of this was that
objections that such changes could adversely impact on service
delivery were overridden.
109. CPPIH recommends that there should
be a requirement to consult on major structural change such as
large scale reconfigurations of organisations charged with securing
the delivery of public services.
110. Similarly in the case of Pam Smith
v North East Derbyshire PCT, established the principle that the
public should be consulted on the outsourcing of local NHS health
services.
111. CPPIH recommends PCTs have a duty to
consult on outsourcing of NHS health services and build local
concerns and wishes into tendering processes for commissioning
services.
112. Finally, there is a widespread public
perception that consultation occurs after decisions have already
been made, and that taking part will not materially affect the
outcome. CPPIH welcomes the new duty in clause 164 of the Bill
for PCTs to report on consultation arrangements and the influence
that the results have had on commissioning decisions. (Clause
164).
113. CPPIH recommends Clause 164 include
a duty on PCTs to ensure that decisions on options for consultation
are open to public influence and clearly reflect local wishes
and concerns. This could be modelled on the Disability Equality
Duty under the Disability Discrimination Act 2005 which creates
a duty on public authorities to involve disabled people in developing
their disability equality schemes. [13]
Commission for Patient and Public Involvement in
Health
10 January 2007
9 Bristol Royal Infirmary Inquiry Final report Chapter
28, "Public Involvement Through Empowerment", July 2001
CM 5207. Back
10
ibid, "What is the Agenda for Public Involvement". Back
11
"The Nation in a Room-Turning public opinion into policy"
Boston Review March/April 2006. Back
12
Process, Progress and Making it Work. Health Overview and Scrutiny
in England Centre for Public Scrutiny 2005 page 7. Back
13
Disability Discrimination Act 2005 Section 49a. See also Guidance
for public authorities on how to effectively involve local people
Disability Rights Commission July 2006. Back
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