40. Evidence submitted by Health link
(PPI 121)
1. ABOUT HEALTH
LINK
Health Link is a not for profit social enterprise
working in patient and public involvement, particularly with people
at risk of health inequalities or social exclusion.
1.1 History
It was formed in January 2004, as a successor
to London Health Link, the regional association of London Community
Health Councils (CHCs) by Elizabeth Manero, ex Chair of London
Health Link. The management committee is made up of patient representatives
with many years experience in patient and public involvement (PPI).
Health Link also operates a network of 125 lay people across all
London boroughs, which have a wealth of knowledge and expertise
about their local health service and about patient and public
involvement. Most are ex-CHC members and many are now on Patients
Forums, Overview and Scrutiny Committees or local involvement
groups.
1.2 Activities
Health' Link's work is project based, mainly
under contract to DH, NHS Connecting for Health and NHS organisations,
with some grant funding:
— Running a Choose and Book
Patient Reference Group for NHS Connecting for Health, to
advise on implementation in London.
— Setting up the NW London
Patients' Parliament for North West London Strategic Health
Authority (STHA), recruiting and training members from eight boroughs,
designing governance materials and Code of Conduct.
— Outreach consultation for
London Patients Choice project, on the choice information
needs of socially excluded groups. The resulting Taking Soundings
recommended how to avoid Choice inequalities.
— Acting on Taking Soundings:
with four STHAs, the DH and NHS Connecting for Health, we developed
a Patients' Information Tool, to enable patients to compare hospitals,
in response to Taking Soundings findings.
— Cross-government Partnership
for Patients: Setting up nine library pilots to test the role
of libraries in patient choice, as suggested by Taking Soundings,
through a Partnership led by ourselves and comprising the DH,
DEFRA, the Museums, Libraries and Archives Council, the London
Libraries Development Agency and London Health Libraries.
— Health and Homelessness:
involving homeless volunteers in monitoring and improving A &
E services from the homeless perspective, in partnership with
Whittington and Homerton Patients Forums. This Project was independently
evaluated and funded by the Kings Fund. With funding from the
Halley Stewart Trust, we are now implementing the resulting recommendations.
— PPI in the determinants of
health: working with the London Health Commission to help
grass roots community groups to engage with pan-London decision-making
bodies on the determinants of health and health inequalities.
— PPI in specialised services:
supporting a Patient Reference Group for the London Specialised
Commissioning Group,
— Connecting Patients' Forums
to their communities: developing a "Community Connections"
approach for two London Patients Forums, facilitating dialogue
between the Forums and local community groups supporting disadvantaged
people, so the Forums' work could be socially inclusive.
1.3 Our Evidence
This range of patient and public involvement
activity has informed our evidence. Our various projects on Patient
Choice demonstrate that we have been able to take the patient
and public view to policy makers and get policy and practice adapted.
In response to A Stronger Local Voice, we undertook a survey of
our Network to gather evidence on the lay visiting to the NHS,
which the government was proposing to remove when Patients Forums
were abolished. We sent out 125 surveys to our London Network
and received 420 responses form all over the country reflecting
the strength of feeling on this matter. Results of the survey
are attached at the Appendix[28]
and summarised in paragraph 4.6 below.
2. What is the purpose of patient and public
involvement?
In the 21st century, it is no longer acceptable
for public services to be designed for the public - they need
to be designed with the public. A paternalistic approach to public
services, where a minority decides for the majority, is inappropriate
to a modern diverse, democratic society. We consider that patient
and public involvement has two purposes:
(a) to bring a general patient and public
perspective to the design, monitoring and scrutiny of health and
social care services, and
(b) to use the perspective of people at risk
of health inequalities to ensure services better meet their needs,
and help reduce health inequalities
If the first objective is met, services will
meet the needs of most people and match the expectations of most
of the public. For example, hospitals will meet the standards
for accessible services which the public expects from the NHS
(eg waiting times). If both objectives are met, some of the health
inequalities which hold the NHS back in its goal of improving
health will be alleviated. For example, the perinatal mortality
rate for black African women, including asylum seekers and newly
arrived refugees is seven times higher than white women. Where
these inequalities are caused by inaccessible or culturally inappropriate
services, patient and public involvement which draws in the perspective
of these women can help make such services accessible to them.
3. What form of patient and public involvement
is desirable, practical and offers good value for money?
3.1 Desirability
The desirability of patient involvement is implicit
in the recommendations of the Bristol Enquiry and the Wanless
Report:
— In 2001 the Bristol Inquiry[29]
(which investigated the high number of deaths of babies and young
children after heart surgery at the Bristol Royal Infirmary between
1984 and 1995) recommended: "The involvement of patients
& the public must be embedded in the structures of the NHS
and permeate all aspects of healthcare in the NHS."
— In 2002, the Wanless Report[30]
(a Report commissioned by the Treasury into the viability and
sustainability of the NHS) required "more effective partnership
between health professionals and the public
Based our experience, three types of patient
and public involvement are needed:
— Prospective—in planning
services.
— Contemporaneous—in monitoring
services.
— Retrospective—in scrutinising
whether what was promised has been delivered.
3.1.1 Prospective: The planning of
services operates at both strategic and commissioning levels:
— Strategic—strategies
for health and social care need to be aligned to health improvement.
For example, if young people are involved in designing health
strategies then they will expect to be involved in the same way
as they grow older, tying future strategic development to a patient
and public perspective. If people at risk of health inequalities
are involved in strategic decision-making, their interests are
more likely to be advanced by those decisions. We are facilitating
contact for NHS London with people with mental health problems
and homeless people, so they can consider their needs in developing
the no smoking strategy for London, improving enforceability of
the forthcoming legislation.
— Commissioning—the
commissioning of services without patient and public involvement
is commissioning with one hand tied behind the commissioner's
back - statistics can be used to determine what services are required
but the way in which they should be provided will be largely guesswork
by commissioners if they work without patient input. For example,
statistics may inform a health service commissioner that there
are high levels of diabetes in an area but only effective patient
and public involvement in commissioning diabetes services will
help make sure that some Asian groups, who have a greater predisposition
to this condition, find these services culturally appropriate.
3.1.2 Contemporaneous: monitoring
of services as part of patient and public involvement is important
in ensuring that a fair view is obtained of the performance of
those services. Visiting rights are vital for this and we are
very pleased that the Department of Health reconsidered its decision
to remove these. Without such rights, LINKs may ask patients what
they think of local health services—unless they are using
them at the time. They can ask local marginalised groups what
they think of health services—unless they are so marginalised
by mental illness for example that they are receiving inpatient
care. They can ask patients their views about their experience
of waiting for services—unless they are actually waiting
in a waiting room at the time.
Much more consistent training and accountability
standards are required to ensure that lay visiting is responsive
and of high quality and has clear outcomes. For example, government
targets require that patients are seen and transferred or treated
from A & E within four hours. Only regular monitoring by patients
and the public can give a fair view of the quality of the patient
experience of that process and the quality of the environment
in which it is delivered. This will enable patient representatives
to maintain a dialogue about how it can be improved. This kind
of monitoring has the capacity to reduce the amount of inspection
required because local services are under constant patient review,
making it less likely that problems will build up.
3.1.3 Retrospective: Scrutiny is
conducted by elected officials, councilors at local level and
MPs at national level, and is the way in which the Department
of Health or local health and social care providers are held to
account on behalf of the electorate for the commitments made to
the population, locally or nationally. It is developing slowly
in some areas, hampered poor resourcing and the interruptions
of local elections. These reforms would be an opportunity to address
some of the problems surrounding scrutiny:
— Failure to make Overview and
Scrutiny in health a duty on local authorities and include it
in performance management of local authorities has led to patchiness
in scrutiny and to its complete absence in some areas.
— Lessons must be learned from
this "postcode democracy" on health, where some communities
have their interests represented in the health service by their
locally elected councillors, and some do not. The planned duty
to host a LINks should be coupled with a duty to undertake scrutiny
so that local citizens get best value from the patient and public
involvement framework, rather than only half the system as happens
currently where scrutiny is poor.
— There is no incentive on local
authorities to be transparent about any political bias operating
in the way in which they would handle the funding for LINks or
the way they currently operate scrutiny (if they do). Political
bias was predicted before the establishment of the Scrutiny role
for Local Authorities[31]
and has been demonstrated now that this role has started, as reported
to CPPIH by Patients Forum members[32].
This problem could be addressed by including an explicit obligation
on local Councillors to act without political bias in scrutiny,
enforced through the Standards Board.
— When a local election is in
the offing, OSCs can carry out no scrutiny at all because of "purdah"
conventions, unlike CHCs which operated irrespective of elections.
There is therefore a perverse incentive for the NHS to push through
unpopular changes at this time, free from challenge or referral
to the Secretary of State. This interruption in public accountability
could be addressed by prohibiting the NHS from undertaking change
at a time when scrutiny committees are in suspension, a period
which should be strictly limited. Patients' needs do not change
because of elections so election arrangements must reflect those
needs.
— The scrutiny of contested reconfigurations
remains weak because, even if OSCs use their power to refer such
matters to the Secretary of State, she has apparently complete
discretion in whether to seek advice from the Independent Reconfiguration
Panel and whether to disclose why she has not. This is a serious
accountability gap, at a time when such reconfigurations are becoming
increasing common and contentious. A duty on the Secretary of
State to give reasons for any failure to call in the IRP would
preserve her discretion but make its use more transparent and
accountable.
3.2 Practicality
Making decisions with patient and public involvement
is more likely to result in outcomes which meet patient and public
needs. This is a concept which is mirrored in commerce where market
research and feedback are essential components of offering what
customers want and need, to have the best chance of succeeding
in giving it to them. There are some changes which could improve
the practicality of the system:
3.2.1 Integration with scrutiny:
Scrutiny by elected officials is the way that this success in
health and social care, is monitored. It is impractical to expect
scrutiny to be effective without close links with patient and
public involvement, so the two have to be integrated. The current
arrangement where Patients Forums have powers to refer issues
to local OSCs or refer to national bodies if local action has
been absent or ineffective, provides this integration and should
not be lost.
3.2.2 Integration with management:
Well designed involvement need not act as a brake on effective
management and decision making. Patients Forum members can and
do sit on clinical governance committees, audit committees, NHS
boards (although less consistently than CHCs for whom this arrangement
was enshrined in Department of Health Guidance), tendering panels
and recruitment boards. The practice of mental health service
users being involved in the recruitment and training of health
service professionals is well established. Maternity service users
influence maternity strategy through Maternity Service Liaison
Committees. Integrated patient and public involvement is practical
and well established, although it is true that there have never
been any systematic evaluation of its benefits.
3.2.3 Triangulation with the views of
people at risk of health inequalities: it is not practical
to postpone all strategic decision-making for outreach consultation
with people who are socially excluded. A more practical approach
is for the views of people who have jointed Patients Forums to
be informed by their outreach work (such as the Community Connections
project described above) with local community groups supporting
disadvantaged people.
3.2.4 Equality of Opportunity: Government
policies which do not permit equal access to patient and public
involvement for disabled people and people from different ethnic
groups and health services which are discriminatory for either
group can be challenged. For this reason, it is important that
people in the relevant population groups are supported to access
patient and public involvement. It is impractical to expect the
NHS to meet the needs of disabled people and to provide culturally
appropriate services without the direct involvement of people
affected who have the expertise to help.
None of these components of effective ppi can
be delivered without acceptance that:
— Some people will act as proxies
for others: Providing there are proper accountability arrangements
for patient representatives as well as training that meets consistent
standards, the risk of "usual suspects" unintentionally
distorting services to suit their own ends, can be avoided. It
is the work of patient and public involvement that must be representative,
not necessarily the people.
— Suitably trained and accountable
patient representatives should have access to wherever patients
go in the NHS: to monitor services from their point of view
and talk to them while they are actually using services without
fear of reverberations. This way full integration with management
can be achieved because judgments are based on a shared understanding
of reality. OSCs would be able to scrutinize with the benefit
of first hand reports on what is happening in services, which
they would not have time to obtain for themselves given the breadth
of the scrutiny remit and the other demands on Councillors.
3.3 Value for Money
As patient and public involvement traditionally
depends largely on volunteers, value for money is high. Competent
staff support is essential and enables the best value to be obtained
from the system. There is a clear cost benefit to the NHS if there
are quality and health improvements as a result of effective patient
and public involvement. The Treasury Guidance[33]
on Inspection of Services makes the important point that the threat
of inspection is a valuable benefit achieved at the cost of merely
having the inspection system in place, irrespective of how frequent
inspections are: "Would the service worsen if there were
no direct inspection or no threat of inspection? Potentially,
there could be no difference, or at worst, fraud and corruption
could become endemic, service quality could spiral downward and
public confidence in the whole political system could decline
markedly." Knowledge of the mere possibility of lay visiting
would have the same effect.
4. Why are existing systems for patient and
public involvement being reformed after only three years?
This remains somewhat of a mystery.
4.1.1 Patients Forums: It is true
that the reshaping of the NHS requires a different focus, with
the shift to commissioning, plurality of providers and integration
with social care. However, the necessary changes could be achieved
with legislative amendment to functions of Forums so their wholesale
removal is not necessary.
4.1.2 CPPIH: It seems that an undue
level of resources is tied in up the infrastructure of the Commission
for Patient and Public Involvement in Health, with its regional
offices and staff. The contract management process of the Forum
Support Organisations has also not inspired confidence with Patients
Forums.
4.1.3 Budgetary responsibility: The
peculiar way in which the budgets of Forums have been managed
lacks transparency and raises questions about accountability.
For example, we were present at a meeting of a Forum where the
Chair was required to sign off Accounts in public, with "0"
as the only entry because the Forum support Organisations held
the budget and refused to disclose how it had been spent, citing
commercial confidentiality. This could be addressed by proper
application of commercial confidentiality. In our view, disclosure
of this sort of financial data involving public money under procurement
is largely a matter of timing. Whilst a procurement process is
continuing, the amount to be charged by bidders is commercial
in confidence. However, once the contract has been awarded, the
way in which the public money funding the contract, is spent,
should be transparently and freely reported and open to challenge.
We suggest that this interpretation be used to make sure that
the procurement of host organisations for LINks is transparent
and accountable. The bill before Parliament does little to improve
matters as it preserves this substitution of contractual accountability
for public accountability and leaves budgetary responsibility
for the money spent on LINks unclear.
A consequence of removing these elements of
the system might well be that Patients Forums would be incapable
of survival. As the support system for the Forums is vested in
the Commission, it would be necessary to transfer these roles
(training, support, performance monitoring, budget management)
to another bodies or bodies.
4.2 Substitute arrangements supporting patient
and public involvement under the Local government and Public Involvement
in Health Bill
4.2.1 Support Arrangements: Both
local authorities and local commercial or voluntary sector organisations
have potential roles substituting for the Commission's support
functions in the bill. The bill before Parliament imposes a duty
on authorities to make arrangements for LINks and it is envisaged
that they will commission local organisations for this role. There
seems to be an element of government "washing its hands"
of the troublesome issue of managing transparent patient and public
involvement and offering to local authorities and "the market."
In doing so, greater variability will be introduced making performance
monitoring, insofar as there will any performance monitoring,
harder to implement.
4.2.2 National Voice for patients:
It is unclear what role the Centre for Patient and Public Involvement
and the proposed loose grouping of voluntary sector organisations
styled as "National Voice" will have. The other clear
consequence of the fragmentation of the CPPIH function to local
authorities is the loss of a national statutory voice for patients,
which the CPPIH so signally failed to deliver. This result needs
to be challenged as it is a significant subtraction from public
accountability. The most significant example of how such an independent
public body can contribute was Casualty Watch - a national inspection
of waiting times in A & E which highlighted some difficult
patient experiences and led to the introduction of the four hour
target in A & E.
4.2.3 Local Authorities: It seems
unlikely that local authorities would be sufficiently remote from
LINks to undertake the role of contracting for "arrangements"
to support LINks, especially given the very welcome extension
of the LINks role to social care which is the statutory responsibility
of local authorities. We note that the funding for LINks is to
be given to local authorities. Whilst appreciating this is a cost
effective way of managing the budget for LINks, we are concerned
that this means the funds will be vulnerable to being diverted
by local authorities to their other activities. For example, in
an area where a local authority is experiencing an increased demand
for social services, what would be the brake upon them diverting
funding from LINks to the direct provision of services? In the
absence of such a brake, there is no guarantee that LINks would
continue to be provided or that they would be adequately resourced.
Thus the very means of finding out what users thought of social
care services in difficulties would be removed. With the current
bill before Parliament which includes provisions on the standards
for Councillors, there may be an opportunity to address some of
these matters in the Code of Conduct and to strengthen the protection
of funds for involvement.
4.2.4 Local Voluntary or commercial organisations:
it is envisaged that such bodies will contract for arrangements
to host LINKs from local authorities. On the face of it, there
seems no reason why commercial organisations such as market research
companies should not be granted contracts to support LINks. This
would run counter to the whole spirit of patient and public involvement,
but may be difficult to prevent under procurement rules.
There is a risk of conflict of interest under
the new proposals. With the introduction of plurality of providers
there is a tangle of vested interests operating in the health
service, with provision of services and monitoring of services
increasingly both vested in the voluntary sector. It is a clear
principle that the person who carries out a function should not
be the only arbiter of the quality of the performance of that
function. The government agency, the NHS, which provides health
care, has never been responsible for exclusively judging its own
performance. If the function of delivering health care is to be
transferred to a plurality of providers under contract, the function
of scrutiny must not be transferred to the same organisations.
Although OSCs have a leading role in scrutiny, they cannot perform
this alone and must have the benefit of disinterested input from
patient and public involvement bodies. To avoid conflict of interest
for bodies which may be both delivering services under contract
and contributing to scrutiny of those services by hosting a LINKs,
we feel that a new model of contractual accountability is needed
as follows:
— It is essential that there is
a guarantee of independence incorporated into the new "contractual
arrangements" with voluntary sector organisations, for them
to have any credibility with the public. This might be achieved
through eligibility criteria, a Code of Conduct and a transparent,
independent complaints process which permits the removal of members
of LINks who display bias or commercial interest.
— Contractual relationships with
the voluntary sector should be based on the Compact, which includes
the following undertaking by government: "To recognise and
support the independence of the sector, including its right within
the law, to campaign, to comment on Government policy, and to
challenge that policy, irrespective of any funding relationship
that might exist, and to determine and manage its own affairs."
— The spirit of this undertaking
needs to colour the relationships between the voluntary sector
and the NHS, contractual and otherwise. Voluntary sector organisations
need to feel secure that they are not compromised in any procurement
process because they are active members of LINks and may have
come into some sort of conflict with their local NHS. Equally,
the local community needs to be confident that its interests are
being promoted in an unbiased and transparent way through an independent
LINks. This could be achieved through transparent procurement
processes and appropriate provision in contracts for service provision.
4.3 Issues for consideration in connection with
the reform decision
4.3.1 Risk Assessment: Under Guidance
from the Prime Minister's Strategy Unit, [34]all
policy reforms are required to be subject to a risk management,
following on from the recommendations after the BSE crisis: "All
decisions and processes need to take account of risk. These include
policy making, programme and project management, and operational
management and decision making;"
The same Guidance requires "openness and
transparency", "a precautionary approach" where
risks to the public are involved and that all decisions "are
based on all relevant evidence." It is not clear that this
approach has been taken to the abolition of Patients Forums.
The continual disruption to patient and public
involvement of sequential reform and the loss of motivation to
individual people who have great expertise in ppi and who volunteer
their time and commitment to undertake this activity at local
level, must clearly be a factor in any such risk assessment. We
are pleased that the very considerable risk pose by the proposed
removal of lay visiting to NHS facilities, has been reversed.
In the absence of draft regulations on visiting, it is of course
impossible to judge how restrictive these might be of independent
monitoring.
4.3.2 Cost Benefit analysis of the proposals.
A cost benefit analysis should be undertaken of the latest reforms,
taking account of all the costs incurred to date. We understand
that there may still be empty CHC premises in the country that
have not been redeployed or disposed of, suggesting a financial
penalty on the taxpayer of this continuous reform of patient and
public involvement. Such a cost benefit analysis would have to
take account of:
— Parliamentary time spent debating
the legislation to set up Patients Forums.
— Parliamentary time spent abolishing
Patients Forums and legislating for LINks.
— Cost of closing CHC offices
and disposing of the estate, including any premiums for the surrender
of leases.
— Costs of disposing of CHC equipment
(including disabling and junking of computers).
— Human resources support and
redundancy costs for CHC staff.
— Set up costs for CPPIH.
— Redundancy costs for CPPIH staff.
— Costs of disposing of CPPIH
premises and equipment (including disabling and junking of computers).
— Set up costs for Patients Forums.
— Recruitment and training of
Forum members.
— Procurement costs for Forum
Support Organisations.
— Costs of disposing of Patients
Forum offices and equipment (including disabling and junking of
computers).
— Recruitment and training of
LINks members.
— Procurement costs for hosting
and subsequent contract management, multiplied by the number of
local authorities in the country required to undertake the procurement
and subsequently manage the contracts.
— Opportunity costs of the management
time in local authorities, the NHS and the Department of Health
in implementing these proposals, when the previous set has not
been evaluated.
We are not sure what evidence the Department
of Health has used to cost the benefits of abolishing Patients
Forums but no doubt this can be factored into the analysis.
5. How should LINks be designed?
5.1 Remit and level of independence
5.1.1 Remit: the extension of the
remit of patient and public involvement to social care with the
plans for Links is very welcome. However, we do not understand
how this is to be achieved given the different governance for
social care and the extra resources required. A draft specification
for a host organisation would be useful in determining the adequacy
of the proposals to meet the important objective of integrating
involvement in health and social care.
5.1.2 Independence: Sufficient independence
is needed to enable the LINks to have credibility with the public
and to be in a strong enough position to create a meaningful position
of influence with local care providers. This standard could be
met through
— Training and standards for LINks
member activity.
— The contracting arrangements we have
referred to above for host organisations.
— Accountability for Councilors on
political bias, through the Standards Board
— Removal of any possibility for health
service employees to be part of LINks.
Currently, regulations on membership are not
strong enough to exclude NHS employees from influencing the work
of Forums and the recommendations they make, which is clear conflict
of interest. We are aware of one case where a consultant from
a Foundation Trust has become a member of a Patients Forum for
an adjacent NHS Trust Patients Forum.
5.2 Membership and appointments:
it is clearly essential for governance purposes that there be
some form of core membership of a LINks. Otherwise LINks is merely
an amorphous fluctuating group of people and groups with no leadership
and little accountability, which would effectively put all power
in the hands of the host organisation. This is not patient and
public involvement but a classic talking shop, where gathering
a plethora of views meets the requirement—but doing something
about those views is not required. The bill is silent on both
membership and appointments. In the absence of draft regulations
it is very hard to judge the LINks proposal at all. Patients Forum
members who are interested in being part of LINks should be considered
for the core role if they undertake appropriate compulsory training.
5.3 Funding and support: as explained
above, in the absence of a model specification for the host organisation
and for LINks in an area and of an indicative budget, it is impossible
to judge the adequacy of funding. We have commented about on the
proposed support arrangements.
5.4 Areas of focus: the resources,
infrastructure and competence required to seek views, and interpret
these into dialogue across the whole of health and social care
will be huge. Nonetheless, these functions are very important.
We suggest different groups within LINks covering different aspects,
so that specialist expertise is developed without losing the overview
maintained by the core members.
5.5 Statutory powers: all the existing
legal rights of Patients Forums must be retained as they constitute
the backbone of arms length scrutiny. We welcome the extension
of a power of referral on social care for OSCs. The findings of
our survey of 237 Patients Forum or ex-CHC members are detailed
below and the full extract from our Response to A Stronger Local
Voice is attached at the Appendix.
5.5.1 Conduct of Visits: there was
evidence of close engagement by lay people in the management of
their local NHS through lay monitoring:
— 76% usually or always talked
to patients about their views of the service;
— 81% usually or always talked
to staff about their views of the service; and
— 55% said their visits were rarely
or never unannounced.
5.5.2 Shortcomings Highlighted: 77%
of respondents said that their visiting had highlighted shortcomings
in services. Issues raised are grouped for Acute (hospitals),
Primary Care and Mental Health Services. In terms of the patients'
interest, it is striking that issues highlighted would all have
a powerful effect on the quality of the patients' experience,
including cleanliness, infection control, security, single sex
wards and waiting times in hospitals and GP surgeries.
5.5.3 Improvements made as a result of
visits: The range and diversity of improvements reported by
respondents as a result of visiting, across all sectors are illustrated
on the bar graph overleaf. Improvements to the cleanliness, feeding
of patients, to sensitivity of care and to patient information,
signage and disabled access clearly relate very closely to the
patient's experience of care and issues such as infection control
relate to the quality of clinical outcome. In addition, there
is a clear link between shortcomings highlighted and improvements
secured, with 92% of visit reports highlighting shortcomings also
suggesting improvements and improvements claimed in 72% of cases.
The purpose of the visits was not just to pick holes in the NHS
and complain—real improvements were negotiated as a result.
This is illustrated on the graph below.
6. Formal and informal complaints procedures
Independent Complaints Advocacy Service (ICAS),
the statutory complaints support service set up in 2001 to replace
CHCs' informal role, seems to be a largely invisible service.
So far as we are aware there has been no formal evaluation of
it. After the Shipman tragedy it is essential that complaints
are carefully tracked by those who commission and monitor services.
We suggest that ICAS has an obligation to feed in anonymised complaints
data to commissioners, LINks and OSCS. There will obviously be
a resource issue for this additional role.
7. 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?
7.1 Section 7: The legal duty to
consult the public, with the OSC as the statutory consultee, is
the means by which major changes in infrastructure of local services
are tested with local communities. Because changes consulted upon
will be by nature "substantial", the right to refer
to the Secretary of State for the OSC, is an important one. Since
Shifting the Balance of Power transferred more power to PCTs,
it is one of the few ways in which the DH can intervene when unwise
or damaging plans are proposed locally. The only change we propose
to this system is that the referral process is more transparent,
as described above. Section 7 is essential because it preserves
local NHS infrastructure and avoids services departing from national
policy. Unfortunately, it cannot be triggered if the OSC refuses
to respond to a consultation in the first place.
7.2 Section 11: We welcome the planned
amendment of S.11 to relate to "significant" operational
and planning activities. It is not clear however, what this would
mean in practice. There is case law on substantial variations
under section 7 but the difference between significant and substantial
is unclear. It is important to make Section 11 practical for the
NHS to implement but not to reduce its remit to such an extent
that they can avoid it all together. Some guidance needs to be
developed on what significant means, in consultation with users
and health and care providers. It is also not clear how the two
sections are intended to relate to one another. If thorough consultation
under the new Section 11 has resulted in a consensus solution,
how could an OSC subsequently disagree under a Section 7 public
consultation on that proposal and refer it to the Secretary of
State?
Conclusion: there is no clear evidence
of the need for reform on quite the scale proposed. The undoubted
faults of the current system may well be due to poor implementation
of the last set of reforms, rather than poor design of those reforms.
Properly designed and implemented ppi, which recognises and builds
upon current skills and commitments, has the right powers and
governance framework and has the capacity to add measurable improvement
to the patient and user experience of health and care.
Elizabeth Manero
Director, Health Link
10 January 2007
28 Not printed here. Back
29
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children's heart surgery at the Bristol Royal Infirmary 1984-1995. Back
30
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HM Treasury. Back
31
Abolition of CHCs: A Blueprint for Failure London Health
Link 2000. Back
32
August PPI Review Special Forum Focus. Commission for Patient
and Public Involvement in Health August/September 2006. Back
33
Assessing The Costs And Benefits Of Government Inspection Activity:
Guidance. HM Treasury and Office of Public Services Reform.
2003. Back
34
Handling risk: A user's guide to the Strategy Unit report.
Prime Minister's Strategy Unit November 2002. Back
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