79. Evidence submitted by London Ambulance
Service Patients' Forum (PPI 78)
1. INTRODUCTION
The Patients' Forum for the LAS is a pan London
forum which has operated successfully for three years with a membership
of 15. It is highly successful as an advocate for communities
across London and is leading the way on many public health issues.
Abolition of the Forum is in our view highly destructive because
it will destroy three years of creative work. Most importantly
abolition will dismantle the establishment of successful relationships
between the Forum and many community and voluntary organisations
and between the Forum, the LAS, London's 32 PCTs, MPs, the Strategic
Health Authority and many other organisations across London.
The Forum believes that the relationships developed
with all parts of the LAS have enabled us to operate effectively
as an agent of influence on the quality of services provided to
Londoners. It would take years for LINks to build a pan-London
organisation with the level of expertise and influence which has
been developed by the Forum—should LINks choose to do so.
In our view closing a Forum with such highly
successful and acclaimed record of PPI with the LAS is irrational.
2. What is the purpose of patient and public
involvement?
The Forum believes that the primary purpose
of PPI is to enable patients and the public to be able to influence
local health policy and the delivery of services. We include commissioning
within health policy. PPI offers a way for the public to find
a way through the highly complex health bureaucracy which confronts
the citizen when he or she tries to exercise influence in the
NHS. There is a distinction between the role of citizen in suggesting
change through PALS which sometimes works well, and the longer
job of sitting with policy makers and planners to steer policy
and planning towards the needs of a community. PPI provides a
public voice for the community, which is especially important
in organisations that undergo reorganisation so often.
PPI is much more than "patient and public
engagement", it should be about empowerment. The Government's
commitment to revitalising community empowerment across the broad
range of public services, cannot be realised by the powerless,
ineffective bodies suggested by the creation of LINks. Indeed,
it could be argued that the LINks proposals are more accurately
a means of disempowerment, unlikely to achieve the aim of enabling
citizens to become active partners in their healthcare and will
not help create a system where people are no longer passive recipients
or better equipped to make decisions about healthcare in their
community.
3. What form of patient and public involvement
is desirable, practical and offers good value for money?
There are many excellent examples of successful
patient involvement and empowerment over the past 32 years of
PPI in the NHS, where citizens and service users have genuinely
influenced their local services.
We would recommend local independent councils
of elected citizen working closely with the voluntary and community
sector and resourced sufficiently to be able them to have a well
recognised public role and profile. Local high street office where
members of the public and community groups can meet to discuss
and plan developments in health policy, campaigning and where
various forms of advocacy can be provided at an individual and
community level.
For mental health and ambulance services a hub
and spoke model so that bodies can monitor large trusts and link
in closely with local PPI organisations.
Supported by small local expert teams with a
centralised infrastructure for HR etc. This requires a recognised
training scheme to ensure that team members are professionals
in PPI and can support members effectively.
Funding of the new system is a key issue. In
the current system funding is denied to the front line where real
PPI takes place. This Forum cannot even get money to fund a professionally
produced annual report. Funding must be adequate for the task
of genuine PPI, must be sufficient to find sufficient numbers
of highly trained and professional staff to support members. Finances
must be in the control of members.
4. Why are existing systems for patient and
public involvement being reformed after only 3 years?
Because they lack sufficient powers to exercise
local influence and are dependant on a weak and confused national
bureaucracy, which has commissioned local FSOs which have often
been incompetent.
Destroying PPI infrastructure for a second time
in three years will alienate those who are currently involved
and is unlikely to attract many new enthusiasts for the powerless
LINks bodies. The Department has alienated many people in the
community through their systematic destruction of PPI and local
communities are unlikely to want to play an active part in a new
body that gives far fewer opportunities for PPI than the current
PPI structures.
5. How should LINks be designed, including:
5.1 Remit and level of independence
Although Ministers promote the idea of a new
LINks organisation based on "independence, engagement, accountability
and transparency", there is nothing in the proposals to show
what would be different about LINks that would achieve this aspiration.
Indeed it is suggested that the new arrangement are tied to and
would be controlled to low volume service providers, whose record
on accountability and transparency is sometimes less impressive
than that of the NHS.
Although the proposals suggest that a broad
spectrum of people would be enabled to influence how their local
services are designed and delivered, it is more likely that these
proposal will create a conflict of interest that will severely
damage PPI. This is because the organisations in the voluntary
sector which are expected to be involved in running the new arrangements
could well be in competition for service contracts with the NHS
and will therefore have an "interest" in commissioning
based on their own organisational objectives. The LINks proposal
is consistent with the Government's objective of contracting out
NHS services to the independent sector, rather than with increased
democracy for the community. In the absence of real independence
LINks would be unable to function effectively. Experience has
repeatedly shown that community groups working in the health field
without independence real powers get sucked into the social infrastructure
of the NHS and lose the ability to function effectively.
5.2 Membership and appointments
Membership should be locally elected and not
selected through an NHS appointments body. A strategy is required
to ensure that over time all sections of the community are involved.
Active support and training will be required to involve individuals
and groups that have had no previous experience of working with
health policy, monitoring and commissioning.
5.3 Statutory powers
Since 2003, statutory powers held on behalf
of the community have substantially diluted, in fact the Patient's
Forum legislation is devoid of any duty on NHS to consult Patients'
Forums. The powers granted to Patients' Forum are also devoid
of the most important power ever to be exercised by communities
in relation to the NHS, ie the right challenge closures and changes
of use NHS services. The absence of any statutory powers that
give the community a "seat at the table" by right in
discussions and negotiations about the future of local services
has substantially weakened the capacity of communities through
their Forums to exercise real influence in the NHS.
With the abolition of Forums, communities, patients,
users and carers will lose most of their remaining powers. The
right to monitor the NHS will no longer rest with the Forum, but
will be transferred to the NHS body as a duty to allow access
to Forums in order to observe activities in the Trust. The power
to inspect premises on behalf of the community will effectively
be lost.
Working with powerful PCTs, NHS Trusts and Foundation
Trust requires more than a "grace and favour" relationship
between LINks and the NHS body. To exercise real influence and
to be taken seriously will require LINks to have the statutory
power to monitor the NHS, to veto decisions which are not in the
best interests of the local community, to influence commissioning
decisions and to call on those accountable for decisions in the
local NHS both in terms of services and commissioning to account
for their actions.
LINks also require statutory power to monitor
non-NHS providers and commissioners of services (should commissioning
funds pass to non-NHS groups or bodies) and to call them to account.
Rather than developing health and social care
services that are user-centred, responsive, open to challenge
and accountable to communities, Ministers appear to be weakening
the opportunity for PPI to have any real impact. Empowering citizens
through LINks with appropriate statutory powers would also give
them more confidence and more opportunities to influence the effectiveness
of public health and preventative services.
The issue of appropriate statutory powers is
also of particular importance with respect to the plethora of
private providers which are now operating under the NHS umbrella.
These bodies have no duties or responsibilities to the public
and often refuse to answer questions about the services they offer
to patients. Strengthened statutory powers are needed to oblige
these companies to operate in the same way as NHS bodies in respect
of S11 of the Health and Social Act and other regulations in relation
to PPI.
6. Access to Information
It appears that the right of LINks to access
information in primary and acute NHS services is no greater than
the general rights granted under the Freedom of Information Act.
Access to information is a fundamental requirement
for any organisation representing patients and the public in the
NHS. Ministers must ensure that such information is available
from every part of the NHS and in addition from private provider
and not-for-profit providers of services to the NHS.
The right of these companies to use "commercial
confidentiality" to prevent the public having information
about their services needs to be moderated by Regulation.
Access to information from Ministers is another
problem that needs to be resolved for LINks. In the current system
questions to Health Ministers from Patient's Forums are rarely
are answered by them and instead standard answers from a database
are sent by very junior civil servants, who know very little about
the NHS and often provide incompetent responses to issues raised
by Forum.
7. How should LINks relate to and avoid overlap
with:
7.1 Local Authority structures including
Overview and Scrutiny Committees
The power to refer matters to the OSCs replicates
that of all previous statutory models of PPI. In LINks model however,
voluntary sector providers would be able to promote their own
services to OSCs with proposals for commissioning that benefited
them, and might in some cases be used to harm the NHS as a competitor
provider.
The Forum supports the proposal for OSCs to
have a role in making sure services are commissioned that reflect
the health needs of local populations and that they are reflecting
public priorities in the communities. However, as the public has
virtually no say in what is commissioned in the NHS, because the
NHS is provider driven, the emergence of new weak bodies (LINks)
to represent the public's view and needs in commissioning, is
likely to have no impact on high value commissioning decisions,
eg the number of hip operation, cardiac bypass and mental health
services. OSCs and LINks will need statutory powers to influence
commissioning if the current balance of power is to change.
7.2 Foundation Trust boards and Members
Councils
Membership of Foundations Trusts appears to
have had very little influence on the Trusts. There should be
a single powerful system of PPI for every NHS body.
7.3 Formal and informal complaints procedures
Access to ICAS services in the community is
extremely poor. They have no public profile and little capacity.
The development of LINks provides Ministers with an opportunity
to enhance their capacity and community links by relocating the
independent complaints advocacy service with local LINks. This
was the intention with Patients' Forums but was never realised.
This move would be especially valuable in light of new complaints
legislation.
8. 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?
Section 11 of the Health and Social Care could
be made stronger by requiring PCTs to develop commissioning plans
in relation to local need and in partnership with OSCs and LINks.
Requiring PCTs merely to respond to OSCs and LINks will not empower
the community.
Section 11 is potentially a useful and effective
power. However, enforcement for the community is very difficult,
because NHS bodies and their suppliers that fail to respond to
demands for consultation, can do so without fear of criticism
from the DH. The Healthcare Commission should act as an agency
of enforcement but fails to do so. A revised Section 11 should
ensure that enforcement is available to the community eg through
the HCC and the OSC.
In Conclusion:
— The Minister has not shown how the
current systems for involving and engaging with patients and citizens
will be strengthened and improved by LINks.
— The new system must be properly funded
and funding in the hands of front line members, ie patient and
the public.
— Citizens, patients, users and carers
should not stripped of all of the statutory powers that they have
been able to exercise since 1974.
— Debates with commissioners and providers
will not in themselves influence decisions about their health
and social care services. LINks would need statutory powers to
do this successfully.
— The LINks proposals do not make NHS
organisations more accountable to their local populations for
the services they provide and commission. The only require them
to listen and respond.
— The proposals will not hold NHS trusts
and PCTs more accountable to their local populations.
— The commitment to building capacity
in voluntary and community organisations will provide support
to the voluntary sector as providers, but will not enhance democracy,
empowerment or public involvement.
— Gathering information from a wide
range of people and a wide range of sources about what local people
need in terms of both their health and social care will not influence
providers and commissioners of services, unless LINks and OSC
have powers to require NHS bodies to meet local needs.
Malcolm Alexander
Chair, London Ambulance Service Patients Forum
January 2007
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