12. Evidence submitted by the British
Medical Association's Patient Liaison Group (PPI 148)
EXECUTIVE SUMMARY
The majority of people want a say in how local
healthcare services are run but, more often than not, have never
been asked about what they would like from their local services.
In addition they feel that they have no power to influence local
service development.
Continued interference by government with formal
structures of PPI has damaged their effectiveness, with the naivety
of the LINks proposal being an illustration in point. It is clear
that the authors of government proposals and legislation do not
understand how meaningful patient and public participation and
involvement work.
The key is resources and capacity. PPI needs
to be properly funded to enable whatever the organisational structure
for PPI is at the time to be able to consult with the community
it serves. This means engaging with service users, taxpayers and
groups who traditionally do not, or cannot, get involved.
Capacity for meaningful engagement is a rare
commodity. The government's response to A Stronger Local Voice
barely recognises the imperative to provide administrative
and financial support to members of LINks if they are to be effective.
There are few people who have the capacity to really engage, and
to find ways of engaging others. Capacity is about having time,
self-confidence, access to technology, the ability to spend hours
reading lengthy and often turgid official documents, political
skills, committee experience and the availability to attend meetings
during working hours as well as outside them. Those that do have
the capacity should be supported.
It is not the case that most people do not have
the intellectual ability to participate because it is clear that
they do. People can make rational and reasoned decisions about
complex matters when given the information and time to do so.
(The two case studies given in this response are examples in point.)
Too few ordinary members of the public have this capacity, and
much more should be done to build it. Without building capacity,
LINks will go the same way as their predecessors because they
are fundamentally flawed.
PPI does not need to be prescriptive about methodology,
but should consider a number of principles to underpin such processes,
including that:
— it should be a collaborative process
with all voices in discussion helping to develop partnerships
between patients, the public, health professionals and policy
makers;
— the process should be ongoing and
not just a periodical or one-off exercise;
— feedback mechanisms must be built
into all PPI activities;
— the processes must be transparent;
— PPI activities must be accessible
to all relevant groups; and
— efforts must be made to specifically
target hard-to-reach and marginalised groups in order to accommodate
equality and equity within the PPI structures and the relevant
health services.
ABOUT THE
BMA
1. The British Medical Association is an
independent trade union and voluntary professional association
which represents doctors from all branches of medicine all over
the UK. It has a total membership of over 138,000.
2. The evidence for this select committee
inquiry was compiled by the BMA Patient Liaison Group and endorsed
by the BMA. The Patient Liaison Group consists of 11 lay members
appointed for their knowledge and interest in different aspects
of healthcare, and five doctor members. The lay members do not
represent any particular patient group, but bring a wide overview
and knowledge of health issues to their discussions.
IN RESPONSE
TO THE
INQUIRY'S
QUESTIONS
Q. What is the purpose of patient and public
involvement?
3. The public is concerned about the future
of Britain's public services with more than half (57%) thinking
that government policies will make public services worse. In health,
almost half (46%) think that the NHS will get worse over the next
few years. Only one in five (19%) thinks that present government
policies will make the NHS better.1
4. A recent survey found that the vast majority
(90%) of those asked agreed that local people should have a say
in how local healthcare services are run, with three-quarters
(74%) wanting a say in how their GP surgery and local hospital
are run. However, the same survey found that three-quarters (76%)
of people had never been asked about what they would like from
their local services, and half (50%) felt they had no power to
influence service development in their area.2
5. The public has had its expectations of
the NHS vastly raised as a result of investment and of the government
telling people that they can expect more and offering a more consumerist
approach to healthcare. Choose and Book is an example of this,
where patients can literally vote with their feet by choosing
where they want their care delivered. Choice in principle is good,
and wanted, but it needs to be properly informed. Words such as
"empowerment", "a need for voice" and "patient-centred"
are used, but need defining and given greater meaning. At present,
the only choice is a choice of hospital.
6. At present, policy on patient choice
risks worsening inequalities in healthcare. Wealthy and educated
populations will be the main beneficiaries. The rise of consumerism
and the introduction of markets have created additional drivers
for choice. There is no evidence that increasing patient choice
will, of itself, improve the quality of patient care. Indeed,
some studies suggest that increasing choice may result in a deterioration
in the quality and cost-effectiveness of services.3 The aim of
choice should be in empowering patients, improving outcomes and
contributing to reducing inequity.4
7. How far patients behave as consumers
is suggested in a recent briefing paper to depend on the severity
of their illness, the nature of the procedure involved and their
individual circumstances.5 As both the severity of the illness
and complexity of the process increase, so patients refer more
decision-making to a well-informed and trusted health professional.
The limited choice so far offered—a choice of hospital—is
only of relevance where there would otherwise be a long wait for
treatment, or where there is a history of poor service. GPs are
often unable to recommend a consultant at a distant hospital whom
they do not know, so the patient may be making an unsupported
decision.
8. This emphasis on choice means that future
services could be based on individual referral decisions. There
needs to be a balance between the individual as a consumer, using
services, and as a citizen, playing a part in how services should
be delivered: a balance between choice and voice.
9. It should not be forgotten that choice
in healthcare is not a choice most people want to make. It is
not a pleasurable choice, and the choice for most would be to
be completely well and not to need the health service at all.
What patients want is good quality treatment and care, delivered
close to home, by a professional team that they trust. In turn,
doctors and other healthcare professionals want the resources
and autonomy to be able to deliver that care.
Why public involvement is necessary for all public
services
10. Simply put, there is a democratic deficit.
It should be a fundamental tenet of organisations that those paying
for a service and those affected by it have a right to be engaged
in its design and development. One problem with public involvement
is that it is, at present, too often merely placatory.
11. Public involvement should be necessary
for decisions as to what services are provided, how they are provided,
quality setting, and monitoring and the maintenance of standards.
A service can only be responsive to users if users are involved.
Public involvement offers service providers and commissioners
the opportunity to better understand the needs of the public.
12. Public involvement has never been more
important than it is now, at a time of reconfiguration and when
crucial decisions are being made by commissioners which impact
on local services. If providers are to purchase services on behalf
of taxpayers it makes sense that commissioners talk to them about
the services they buy and forge relationships with them so as
to increase their knowledge about the quality of the services
for which they pay.
13. Reconfiguration will involve difficult
decisions that it is important to get right. In the context of
limited resources, the service needs to consult with the public
to identify what they need rather than what they want.
Patient and public involvement in healthcare services
14. The concept of PPI in health is not
new. It has been considered a worthwhile aim by successive governments,
and professional organisations and regulators make use of patient
input and recognise its importance.
15. The term patient and public involvement
encapsulates the two streams of lay involvement in healthcare
services. Patient involvement is the contribution of individuals
to their own healthcare, and public involvement the participation
of individuals or groups in the development, planning and provision
of services.6
Legal responsibilities to the patient and publics
16. In the 1990s the NHS patients' charter
focused on operational items such as waiting times rather than
the principles of the service. It was found that few patients
were aware of the details of the charter, that it was rarely utilised
and that it did not balance raised expectations with patient engagement.7
17. With patient rights should also come
patient responsibility. The patients' charter was a rights-only
charter, with no mention of responsibilities. The majority of
patients accept and acknowledge their responsibilities, including
making appropriate use of services, behaving in a civil way and
co-operating in their own healthcare.7 There are current examples
of where patients' charters are used, including Hong Kong,8 Spain9
and King's College Health Centre10 in London. Each of these examples
emphasises both the rights and the responsibilities of patients,
reflecting the partnerships that are necessary within healthcare.
The concept of a patients' charter based on these rights and responsibilities
would be supported.
18. Section 11 of the Health and Social
Care Act of 2001 (now Section 242 of the NHS Act 2006), made public
consultation a legal requirement at the level of Primary Care
Trusts (PCTs), Strategic Health Authorities (SHAs) and NHS Trusts
with regard to:
— the planning and provision of local
services;
— the development and consideration
of proposals for changes to the way services are provided; and
— decisions that will affect the operation
of services. 11
19. The government has been pushing forward
with current reforms under the justification of ensuring a patient-led
NHS. Even with Section 11, there is no coherent guidance as to
how effective participation can and should be achieved and some
organisations have struggled to comply with this requirement.
As yet, the necessary honesty and balance about the evidence or
motives behind reform plans has often been absent.
20. In December 2006 the Local Government
and Public Involvement Bill was introduced into the Commons.
12 This aims to formalise, in legislation, the link between service
providers, including local authorities, and local involvement
networks at the level of local authorities. The bodies involved,
Local Involvement Networks and Overview and Scrutiny Committees,
are discussed below.
Patient and public involvement in healthcare
21. There is often a disconnection between
what people are told needs to be done, for example closing an
A&E department, and what the public actually believes should
be done. Effective PPI is a benefit to people and organisations
because it allows them the opportunity to engage in decisions
about healthcare services, and because it can:
— educate the patient and public body;
— allow the public to see what good
has been done and recognise what improvements have been made;
and
— allow the public to understand what
constraints there are.
22. Healthcare policy decisions, at whatever
level they are made, ultimately affect patients' lives. Therefore
it can be argued that patients have a moral and ethical right
to play a meaningful role in developing healthcare policies. Engaging
patients in health policy decision-making helps to ensure that
policies reflect patient needs and preferences, and this must
ultimately make for more effective healthcare. In a publicly funded
health service, this serves to increase accountability.
23. PPI is not about people wanting to make
the clinical decisions. It is, in part, about facilitating patient
autonomy and, together with clinical autonomy, holding managers
to account. Getting the public involved will not happen through
good intentions; it requires commitment, resources and building
capacity for involvement to happen and be effective.
24. Healthcare professionals and patients
should foster partnerships, leading to more effective care. Patients
want to be involved in decisions about their healthcare and treated
as partners by health professionals. They would often like to
be offered a choice of treatment and be informed to enable them
to make a choice. A collaborative approach to decisions improves
outcomes as patients are more likely to comply with medication
and treatment if they are involved.
25. In a market environment which has been
created for providers to compete with one another for patients,
PPI is not just necessary for NHS providers but also for private
and third sector organisations commissioned to provide services
financed by the public purse. This is particularly important in
the context of care closer to home where policy decisions which
cross the boundaries between healthcare and social care services
have to consider quality, safety and equity.
Q. What form of patient and public involvement
is desirable and offers good value for money?
26. Involving the patient and publics is
not straightforward. People as individuals and as members of groups
can have diametrically opposed views. Commonly excluded groups
such as those with language difficulties, learning difficulties,
physical disabilities, mental health problems and those without
the time available to commit through traditional means of involvement
need to be reached. Once involved, it is important that people
do not become distrustful of the process. This can happen if their
participation is not acknowledged, or when their contribution
does not appear to make a difference or at least be considered.
Involvement must not be tokenistic or not properly thought through.
CASE STUDY
1
Thames Reach Bondway project to gain the views
of homeless people in relation to their health and the services
provided for them
Thames Reach Bondway undertook a project in
Lambeth to gain the opinions and views from homeless people in
relation to healthcare.
The process involved recruiting a cross-section
of people with a background in homelessness, representing a variety
of homelessness experiences, health needs, gender, ethnicity and
sexuality, and inducting and supporting them to facilitate focus
groups and interviews with homeless people in hostels and day
centres.
The facilitators interviewed groups of homeless
people on GP services, hospital services and specialist services.
They were asked to think about the services they had used, whether
they were good or not and the reasons for that assessment. The
outcomes of the interviews were compiled.
Several services were found to be good: GP services
and hospital care where there had been long-standing relationships,
hostels and day centres, and the Stockwell Drug Project. Several
services were seen as not very good: services used by refugee/asylum
seekers where there were communication difficulties, and A&E.
The impact of the project led the Guy's and
St Thomas's Charitable Foundation to address access to A&E,
the out-of-ours service and hospital care, and importantly to
the opportunity for homeless people to develop skills and be able
to present their views for consideration and discussion.
27. Public engagement must be more than
a "tick-box" exercise. PPI structures should exist at
all levels throughout the healthcare system, be properly resourced
and should be used to feed both up and down into decisions relating
to the design and development and the commissioning of services.
Decision-makers should also be required to demonstrate how they
have incorporated and responded to the views of those with whom
they consulted.
28. A Which? Report identified that
the main priorities for patients are that healthcare services
are responsive to their needs and that they are delivered as close
to them and as quickly as possible. 13 The quality of healthcare,
however, must not be compromised through working towards these
aims and therefore the health and access needs of local populations
must be identified. Such needs are affected by a combination of
factors including the:
— geographical location—rural,
suburban or urban;
— population demographics—age,
sex, ethnicity, social-economic make-up;
— prevalence of long-term conditions;
— lifestyle behaviours—smoking
and exercise rates, practicing safe-sex, diet and nutritional
preference; and
— size of refugee populations and asylum
seeker populations. 13
CASE STUDY
2
Barnet PCT's use of public involvement in steering
commissioning decisions
Barnet PCT held an event in November 2006 to
seek the views and opinions from members of the Barnet Council's
Citizens Panel and other stakeholders to help steer their commissioning
decisions for 2007-08.
The PCT had allocated £60 million of uncommitted
money for commissioning services and had shortlisted 24 interventions
which participants could choose from on which to spend a portion
of the pot. Examples of the interventions are:
— a better epilepsy service;
— cataract removal operations;
— increasing the smoking cessation
service;
— greater access to digital hearing
aids.
There were 56 participants arranged into roughly
even groups at seven tables. Each table was allocated a facilitator
and a note taker.
Some information about the interventions had
been given out before the event, and on the evening itself the
PCT Chief Executive, Medical Director and Director for Commissioning
gave presentations on the background to the budget, the health
of the local population and how services are commissioned.
Each participant was given eight tokens to allocate
to interventions as they saw fit. There were provisos to ensure
that there would be some "winners" and some "losers"
amongst the interventions. There were two rounds of preference
selection. During the rounds the facilitators asked participants
to debate the interventions and give reasons for their decisions
on how tokens were allocated.
At the end of the two rounds a simple mathematical
model was used to transfer the "value" of the tokens
to an overall preference score for each intervention. The highest
scoring intervention was for funding extensions to GP surgery
opening hours. Second and third on the list were maintaining current
spending on hip replacements and reducing waiting times for hospital
treatment. The exercise demonstrated that people, when given the
opportunity, are capable of making rational and reasoned decisions.
The data will be taken into account by Barnet
PCT when making commissioning decisions. The PCT has promised
to feedback to those who took part and explain how the decisions
made at the event influenced spending.
29. Guidance on engaging in PPI does not
need to be prescriptive about methodology, but should consider
a number of principles to underpin such processes, including that:
— it should be a collaborative process
with all voices in discussion helping to develop partnerships
between patients, the public, health professionals and policy
makers;
— the process should be ongoing and
not just a periodical or one-off exercise;
— feedback mechanisms must be built
into all PPI activities;
— the processes must be transparent;
— PPI activities must be accessible
to all relevant groups; and
— efforts must be made to specifically
target hard-to-reach and marginalised groups in order to accommodate
equality and equity within the PPI structures and the relevant
health services.
30. Consideration also needs to be given
as to where PPI is necessary. There are several layers of hierarchy
in the health system which need to be held accountable, from the
Secretary of State for Health through SHAs and hospital Trusts
in secondary care, and PCTs and GP practices in primary care.
The real power in these organisations follows the money; namely
practice and trust based commissioning.
31. For the public to be truly engaged in
the provision and delivery of services, it must be given the facts
about costs, about how decisions are made in allocating resources,
and about how money can be spent best to meet the needs of local
people. PPI may not be high on the list of priorities for managers
in the face of balancing the books, but its role, together with
that of listening to the professionals charged with actually delivering
healthcare, should not be underestimated.
32. Without proper involvement, people can
unbalance arrangements through either action or inaction. Examples
of action are where hard decisions need to be made, such as when
the public react strongly to the closure of a service. Inaction
where, for example, an initiative has not worked because managers
with good intentions thought they were providing a service that
people wanted, but they did not.
Capacity and representation
33. Capacity and representation will be
a major concern for new initiatives in order to populate local
networks enabling them to work for, serve and reflect their constituency
effectively. Representation should reflect the population it serves
to work towards ensuring that all views and voices are heard.
Capacity is also necessary to ensure that the job of the representative
group is done; that amongst the representative group there are
people able to understand, communicate and, importantly, with
the time to carry-out the complexities of the task in-hand.
34. Those responsible for consulting should
seek to find what form of PPI is most effective for the purpose,
significance and size of the task they are undertaking, but still
with the principles set out above in mind. It is likely that a
combination of methods will be needed.
35. Three different, but overlapping, patient
voices have been identified, and each has their usefulness and
limitations. 14 These are:
— patients—they are experts in
their own experiences and they can observe and reflect on those
experiences, but may not know, for example, about the treatments
or choice of drugs available to them;
— patient groups—they are expert
in the views and experiences of patients like themselves; know
what professional standards for treatment, for example, should
be and can articulate them; know what common concerns their patients
have; but can only cover a narrow band of expertise, in a specific
disease area; and
— patient representatives/advocates—they
have a general knowledge and hold the interests of all patients
at heart; they can represent those interests; they study surveys
and literature; they talk with patients and patient groups; but
they may not know in detail about particular issues of any particular
patient group.
36. A major problem in convincing organisations
that PPI is worthwhile is: which voice should be listened to?
The answer is that all voices should be given an opportunity to
be heard. There are views that the naive voice is the true voice,
and that the voice of patient groups and advocates are that of
the "usual suspects" or "self-appointed trouble
makers".
37. PPI should consider all individuals
and groups as having good intentions and recognise the point of
reference from where the voice comes. Where groups of patients
are used to represent the "patient voice" it must be
recognised that they cannot speak for the views of all patients,
but that instead they speak for the values and interests of patients.
14 These views can be triangulated with individual views through
avenues such as a public meeting. A powerful tool is involving
randomly-selected people. As well as improving the representation
of views, it can help broaden the base for future consultation
and encourage those who would not typically take an interest in
local health to get involved.
38. Representation is required to ensure
that all voices are heard and capacity is necessary to ensure
that those voices are considered. Understanding and knowing how
to work within the system is an important goal itself, for example,
knowing who to contact and who to influence, as influences seem
effective when relationships are developed with key people. Most
groups who are successful in influencing change know who to talk
to and understand the complexities and machinations of change.
15
Q. Why are existing systems for patient and
public involvement being reformed after only three years?
39. Whilst the standard of patient forums
and the current system of local PPI, are variable, it is unclear
as to why they and the Commission for Patient and Public Involvement
in Health (CPPIH) are being discarded in favour of LINks. The
criticism of patient forums is that, as well as their variability
in quality, the cost of supporting them through CPPIH has been
high. There is no reason to believe that LINks, as they are currently
proposed, will be an improvement.
40. There are many different examples of
mechanisms which can and are being used to engage the patient
and publics in health reforms and decision making. Different methods
will be appropriate in different settings and at different levels,
whether that be for GP practices, Trust hospitals, medical schools
or the Department of Health for example. Examples of PPI techniques
include:
— public/community meetings;
— patient questionnaires or surveys;
— election/selection to trust boards;
— patient liaison groups;
— consultation with disease specific/patient
interest organisations;
— patient networks (often disease specific);
— practice level patient participation
groups;
— electronically through, for example,
www.patientopinion.org.uk or HealthSpace.
41. PPI happens now with varying effectiveness
through:
— general practice patient groups;
— consultations by PCTs, SHAs and Trusts;
and
— government consultations.
Enlightened service providers, or elements within
them, will use other forms of engaging with the patient and publics
in designing and shaping services.
Foundation Trusts
42. NHS Foundation Trusts are part of the
NHS reform programme built on the premise that because they are
autonomous organisations free from central government control
they can decide how to improve their healthcare services around
local needs and priorities through establishing strong connections
with their local communities. In addition, local people can become
members and governors. Those living in communities served by a
hospital of an NHS Foundation Trust are invited to become a member,
and members can stand for and vote in elections for governors
of the Trust. This form of public ownership and accountability
aims to ensure that hospital services more accurately reflect
the needs and expectations of local people. 17
43. Foundation Trusts appear to be a failing
area in terms of PPI, and there is a lack of evidence to show
that they may be working. From experience, there is no consistency
on how appointments are advertised or made. Lay governors are
unsupported, usually receiving no training or administrative support,
and their role in decision making is also negligible with decisions
often being made by an executive group, with no lay membership,
which are then in effect rubber-stamped by the board.
Other recent initiatives
44. Two recent initiatives, both supported
and facilitated by the government, are aimed at professionalising
PPI. These are the NHS Centre for Involvement and National
Voices.
45. The NHS Centre for Involvement was
launched on 28 November 2006 and focuses on services directed
at health professionals to give them the tools to turn PPI into
everyday practice. Amongst its core values and strategic objectives
are the following:
— engage with local communities;
— develop responsive and democratically
accountable services;
— promote the value of PPI;
— build capacity of organisations,
staff and patient-citizens for high quality PPI; and
— generate evidence-based models of
best practice. 18
46. National Voices started as an
independent group of health and social care related voluntary
organisations looking at the decline in the public's input into
shaping national policy. It has now been asked by Ministers to
explore how this can be done better. Its core aims are to:
— agree the principles that underpin
the development of independent national voices of service users,
patient and carers to influence strategy and policy across health
and social care at the highest level; and
— investigate options to establish
a mechanism that represents the independent national voices of
service users, patient and carers. 19
47. The values of the NHS Centre for
Involvement and the aims of National Voices are all
laudable, but professionalising of PPI may lead governments and
providers to regard only the views of a national organisation
or their locally trained patient advocates because they "represent
the patient view". This would be detrimental to PPI. People
who do not belong to a patient organisation would not have a voice.
Patient groups and charities who have worked hard to get their
voice heard may lose that opportunity, and the "one"
representative voice with, by its very nature, input from a myriad
of views, will have difficulty putting together a coherent argument
and will be easier for governments and providers to dismiss.
48. The White Paper Our health, our care,
our say aimed to change the way community services are provided
and give patients and service users more control over the treatment
they receive. 20 It identified a number of triggers, one of which
is public petitions, to which PCTs would be expected to respond.
Public petitions are envisaged as culminating in an arbitration
procedure in making decisions about the provision of services.
49. As with other proposed initiatives there
is no detail as to how petitions and the following process might
work, with fundamentals needing clarification such as:
— how many signatures would be required
to trigger the process;
— what is the process for response;
— how the quasi-judicial process of
arbitration would be set up or enforced; and
— how petitioners would be represented
in the process.
50. There are also concerns with regard
to whether or not the process is democratic. Getting a petition
organised may lead to health inequalities as those very people
who might most need one will be least qualified to organise it.
A petition could be initiated by a local MP making it vulnerable
to political manipulation.
51. If PPI is conducted and resourced properly,
there should be no need for public petitions. Patients and the
public should have proper accessible and democratic channels to
go through without the need of getting up a petition.
Q. How should LINks be designed, including:
— remit and level of independence;
— membership and appointments;
— relations with local health Trusts;
and
52. A stronger local voice: a framework
for creating a stronger local voice in the development of health
and social care services was published in July 2006 with the
aim of providing a framework for individuals and communities to
have a stronger voice in their local health and social services
by ensuring that the "needs, preferences and involvement
of local people, including those that are seldom heard, are central
to the planning, development and delivery of health and social
care services." 21 The paper sets-out plans for local involvement
networks (LINks) to replace the current PPI Forums. There will
be fewer LINks, one per local authority, than there are currently
PPI Forums. These LINks will be used to inform local authority
Overview and Scrutiny Committees (OSCs) on public views on health
and social care services. This relationship has been confirmed
in the Local Government and Public Involvement Bill. 12
53. Many people want a greater say in the
local health services. As the Minister suggests in A stronger
local voice: "We are committed to empowering citizens
to give them more confidence and more opportunities to influence
public services in ways that are relevant and meaningful to them".21
This is a worthy aim, but extremely difficult to do in practice,
as witnessed by the huge number of social inclusion, social capital
building, and regeneration initiatives that have been started
by this and previous governments. Mechanisms for actual empowerment
are not given in the white paper, and while formal arrangements
are made clearer in the Bill, there is no detail with regard to
how empowerment should happen and how its effectiveness should
be monitored and regulated.
54. The legislation charges local authorities
to enter contractual arrangements to run their LINks, but the
governance of LINks will be left to local arrangements. In addition,
the membership of LINks will be set at local level with no national
guidelines for type or number of members or funding for resources
or training for members. There is then a danger of inequity of
public involvement between local authorities.
55. There are a number of possible strengths
and weaknesses of this system over the current system.
Strengths
— the smaller number of organisations
may mean more capable people for recruitment to LINks (rather
than those spread between the current numerous PPI Forums);
— LINks with populations that are well
educated and able to dedicate time may work well;
— LINks will have the power to refer
matters to Overview and Scrutiny Committees; and
— LINks will have the power to inspect
providers' premises.
Weaknesses
— LINks with populations that are less
well educated or less able to dedicate time may not work well;
— there may be conflicting views within
LINks because of the size of areas covered and the priorities
of particular localities;
— LINks may be too closely allied to
local authorities to be independent of local politics and any
conflicts of interest that may arise;
— there is a danger of LINks being
patronised, out-thought and manipulated by managers; and
— the lack of national coordination
for LINks does not formally enable sharing of information, ideas
and good practice.
56. Representation, capacity and resources
are key elements in enabling LINks to work. None of these have
been addressed in any detail in the consultation process or the
Bill. The task of collecting real public opinion can be complex
and time-consuming, particularly if it is to be done properly.
LINks must have the capacity and resources to be able to undertake
their duties. Representation would ideally reflect the population,
but more important will be the ability of LINks to reach all the
constituent parts of its population served, including those traditionally
excluded.
57. The BMA understands that between £100,000
and £150,000 per annum will be allocated through local authorities
for each of the LINks. This is not much if translated into salaries
for a minimum number of staff, expenses for members, office accommodation
and running expenses, let alone money for undertaking surveys
of public opinion. In addition, it is unclear whether money for
LINks will be ring-fenced.
Overview and scrutiny committees
58. While LINks have the power to refer
matters for consideration to OSCs, OSCs must use LINks to inform
their work in reviewing local health and social care services.
OSCs are the only way that NHS organisations can be held accountable
locally. However, there are potentially a number of failings in
the OSC system which could undermine its effectiveness, namely:
— seats are filled only by local councillors;
— seats do not have to reflect the
political make-up of the council (ie the majority party may choose
to fill all seats);
— councillors may have no interest
in health;
— councils have no financial hold over
health service providers; and
— being charged with overseeing both
health and social care may result in conflicts of interest and
culture between health and social care concerns.
59. OSCs have no mandatory powers to change
anything. If their recommendations are not acted upon they can
refer the matter to the Secretary of State who can make a decision
or refer to the Independent Reconfiguration panel. In addition,
due to other responsiblities and the timing of meetings, OSCs
can only be reactive to fast moving situations in health rather
than be proactive.
60. The government released its reply to
the A Stronger Local Voice consultation in December 2006.
21 In opening the reply the Secretary of State for Health says
"I believe that seeking people's views on the services they
use is essential to improving both those services and the experiences
of the people who use them." The key here is the aim only
to "seek" public views rather than actively engage the
public in participating and influencing decisions on the content
of services or of the commissioning of services.
61. Overall, the arrangements between LINks,
OSCs and health and social care providers appear extremely bureaucratic.
If LINks are to have any real influence they will need much more
funding than PPI Forums ever received.
Q. How should LINks relate to and avoid overlap
with:
— Local Authority structures including
Overview and Scrutiny Committees;
— Foundation Trust boards and Members
Councils;
— Inspectorates including the Healthcare
Commission; and
— formal and informal complaints procedures?
62. Concerns regarding local structures,
Foundation Trusts and other bodies have been examined elsewhere
in this response. The lack of co-ordination between bodies bring
immediate concerns about patient safety and the quality of services,
and they are inpenetrable as a group.
63. With regard to complaints procedures,
there appears to be no intention to formally relate LINks to local
systems, and local complaints systems have been found to be variable.
64. There are currently three-tiers to the
complaints structure:
— to the NHS provider, with or without
the support of an Independent Complaints Advocacy Service (ICAS);
— to the Healthcare Commission, following
an unresolved complaint to the provider; and
— to the Health Service Ombudsman,
following an unresolved complaint to the Healthcare Commission.
A complaint can also, depending on its nature,
lead to litigation and be taken through the legal system.
65. ICAS aims to support patients and their
carers wishing to pursue a complaint about their NHS care to agreed
national quality standards. The Healthcare Commission becomes
involved if a complaint is not resolved through the local NHS
complaints procedure, and the Health Service Ombudsman reviews
a complaint relating to the administrative processing of the complaint.
66. In addition a Patient Advice and Liaison
Service (PALS) has been established in every NHS Trust and primary
care trust (PCT). PALS are not part of the complaints procedure
but might be able to resolve concerns informally and should be
able to guide someone through the complaints procedure.
67. The Citizens Advice Bureau (CAB) was
a contracted provider of ICAS in six of nine regional governement
areas in England. In 2005 it published a report The pain of
complaining which looked at the NHS complaints procedure.
22 It found that the roles of its constituent parts were lacking
in supporting patients who faced:
— "difficulties in finding out
how to access the complaints system, because of a reluctance by
Trusts to advertise the procedure and support services available
through ICAS;
— lengthy delays at every stage of
the process, as both Trusts and the Healthcare Commission fail
to deal with complaints within their targets; and
— a culture which is defensive rather
than responsive, failing to provide complainants with explanations
of what went wrong, or apologies when mistakes have been made."
22
68. In particular the standard of the patient-facing
entities, PALS and ICAS, were found to be variable. PALS are not
run to any national standards, are often underresourced, and are
used by services to capture complaints so they can be dealt with
informally rather than alerting people to the formal complaints
system. In regard to ICAS, where the complaints procedure works
well it can be a force for making things better for individuals
and the service. Where it works less well, it increases frustration
and distress and the chance of the complaint being taken through
the legal system. 22
69. The pain of complaining makes
a number of recommendations amongst which it asks that the Department
of Health set a national standards framework for complaints handling
and that the Healthcare Commission ensures compliance with these
standards through regulation. It also recommends that Trusts develop
a mechanism to obtain feedback from patients who have used the
complaints process and that, through OSCs, changes which should
be made as the result of a complaint are implemented. 22
70. The Department of Health did not renew
the CAB's contract as the main provider of ICAS and so the complaints
system in many areas of the country is currently unsupported.
This is a very serious state of affairs.
71. The 2005 Health Service Ombudsman report
into the NHS complaints procedure in England also identifies weaknesses
in the complaints system, including:
— timescales not centred on patient
needs;
— a lack of capacity and competence
of staff in dealing with complaints; and
— a lack of leadership, culture and
governance. 23
72. Often the complaints system fails at
the first hurdle because patients simply do not know where to
turn, in particular where a patient journey spans a number of
providers. There should be a single portal for all complaints,
the structures of which must be sufficiently resourced. Patients
need to be properly advised and independently supported and should
feel that it is safe to make a complaint and that it will in no
way jeopardise their current or future care. Complaints procedures
and structures are often complex and so there must be adequate
investment to ensure that support staff are of high quality and
sufficiently trained and equipped.
73. Principles of learning from mistakes
and continual feedback should be central to all regulatory mechanisms.
It is important that a single body at local level should be responsible
for drawing together the monitoring work of complaints. There
may be a danger that individual problems, while resolved for that
individual, fall through the gap in terms of the bigger picture.
Patients who complain are usually seeking an explanation of what
happened, an apology if appropriate and reassurance that recurrences
of the problem they encountered will be prevented. Complaints
monitoring should also capture the failing of policy as well at
that of care. The new Local Government and Public Involvement
in Health Bill does not address patient complaints. 12
Q. In what circumstances should wider Public
Consultation (including section 11 of the Health and Social Care
Act 2001) be carried out and what form should this take?
74. The government uses national consultations
to gather the views on policy and proposed legislation. Consultations
are published on the relevant department website and sent to selected
stakeholders. The general public can also respond individually,
as can other interested organisations. Other forms of consultation
have been addressed above.
75. The Cabinet Office has a code of practice
for government consultations, setting-out criteria which should
be met. 24 These are:
— consult widely throughout the process,
allowing a minimum of 12 weeks for written consultation at least
once during the development of the policy;
— be clear about what the proposals
are, who may be affected, what questions are being asked and the
timescale for responses;
— ensure that the consultation is clear,
concise and widely accessible;
— give feedback regarding the responses
received and how the consultation process influenced the policy;
— monitor the department's effectiveness
at consultation, including through the use of a designated consultation
co-ordinator; and
— ensure the consultation follows better
regulation best practice, including carrying out a Regulatory
Impact Assessment if appropriate.
76. There are a number of reasons why consultations
are not being as effective in gaining stakeholder opinion as they
could be, including:
— diverse initiatives—apparent
lack of joined up thinking;
— length of consultation time;
— scepticism that responses will be
properly considered; and
— lack of public awareness of consultations.
77. The timeframes given to consultation
are often unworkable, and even professional organisations like
the BMA with the capacity and resources to respond have to work
hard to do so. For individuals or for unsupported groups the deadlines
give little scope for deep consideration and understanding, denying
access to large swathes of the population. Time is one of the
biggest barriers to gaining views from ordinary people or professionals.
78. Any attempt to use consultation as a
tool for gaining public views should provide open and transparent
information and not be used as "me trying to convince you
that what I believe is true and should be done".
Dr Vivienne Nathanson
British Medical Association
January 2007
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