84. Evidence submitted by Richmond and
Twickenham PCT PPI Forum (PPI 140)
The Richmond and Twickenham PCT PPIF is a small
but increasingly active forum. There are no acute hospitals within
the PCT and local authority boundaries; residents therefore need
to travel outside the borough for delivery of acute medical and
surgical care services.
Forum members have questioned why systems for
patient and public involvement are being reformed after only three
years; informed by experience, forum members recognise that it
takes time for people drawn from a variety of backgrounds and
experience to learn to work together and choose and take forward
a work programme, particularly when seeking information and making
judgements in relation to such a complex area as the delivery
of health care. However, Forum members now look forward positively
to being involved in the establishment of a local LINk and are
committed to progressing the agenda for public and user involvement
in the planning, commissioning and provision of local care services.
Our submission of evidence to the Health Committee,
takes account of the recommendations set out in the Department
of Health's document: A stronger local voice, July 2006 and the
Government response published in December 2006. We also note the
first reading on 13 December 2006 of the Local Government and
Public Involvement in Health Bill and the contents of Part 11,
Patient and Public Involvement in Health and Social Care. We trust
that the findings and recommendations of the Health Committee
Inquiry into Public and Patient Involvement in the NHS will be
taken due account of as the Local Government and Public Involvement
in Health Bill progresses through Parliament, particularly in
advance of the Report stage.
We respond to the following points, which relate
to the terms of reference for the Inquiry:
1. How Should LINks be Designed:
1.1 Remit and level of independence
We support the recommendation that LINks:
— should be coterminous with each local
authority with social service responsibilities;
— should be independent and have the
powers to develop their own priorities and agenda;
— will have statutory powers enabling
them to require NHS and social care bodies to provide information
about their services and priorities and to respond to recommendations;
and
— will provide a flexible way for local
people and communities to engage with health and social care organisations
and ensure that service providers are made more accountable to
the public.
We strongly support the plan for LINks to have
responsibility for monitoring both health and social care provision
over the whole patient journey.
The importance of being able to work closely
with the Health Overview and Scrutiny committee is recognised
but at the same time, independence must be ensured.
Key points:
— LINk Independence.
— A structure allowing monitoring
of the whole patient journey.
1.2 Membership and appointments
The arrangements for organising the recruitment
and signing up of members to the LINks should be handled at local
level, by the host organisation. There are existing models readily
available within the charitable and voluntary sector for recruiting
to organisations whose members are both organisations and individuals.
There will need to be a "management board"
or similar structure for the LINks and although this board will
be accepting nominations from member organisations and individuals
in due course, it will be advantageous if individual members of
the existing local PPIFs, if willing, are automatically selected
as members of the management board in the first year. They have
already been through a valid recruitment process, including CRB
checks and have demonstrated their sustained commitment to the
public and user involvement agenda.
We recognise that it is intended there will
be flexibility for LINks to organise their own structures but
when LINks begin operation it will be vital that there are members
with experience in place, to move the process forward and facilitate
LINk independence and development. PPI forums took considerable
time to develop cohesion and direction; many signed up members
were lost at an early stage due to disillusionment with the forums'
capabilities to function effectively and it would be very regrettable
if the experience gained through PPI forum membership was not
to be fully utilised within the new LINks. It is important that
host organisations do not lead but support, hence the importance
of the LINks being able to operate as independent organisations
right from the start.
Key points:
— Recruitment for LINks to be handled
at local level.
— PPIF members to be amongst the founding
members of the new LINks in order to benefit from their public
and user involvement experience and commitment.
1.3 Funding and support
LINks are to be required to take on a significant
and extensive role. In order to be effective each LINk will need
significant administrative and training support, with more intensive
support on start-up. If LINks are not sufficiently resourced they
will be overwhelmed and fail. In the early days of the introduction
of forums, members felt generally unsupported, particularly in
relation to the provision of practical support at local level
and funding support for front-line activity. This was a major
disincentive to early member commitment.
The funding to be provided to local authorities
to develop LINks should be clearly defined and monitored.
It is not enough to say there are representative
voluntary and community organisations (VCS) already in place that
will be able to provide information and user experience to feed
into the LINks, these organisations are hard-pressed already.
VCS organisations frequently find it difficult to engage with
and respond to public consultations, participate in project working
groups or attend special interest meetings etc as much as they
would wish. It is not that they do not want to engage fully, they
just don't have sufficient spare capacity.
The host organisation must be based within the
locality covered by the LINk. A very significant weakness of the
PPIF structure has been that forums are not supported by an organisation
based within their locality. It is essential that the host organisation
is easily accessible and has wide knowledge and experience of
the local voluntary and community sector (VCS). This will facilitate
the development of the LINk as an integral part of the VCS sector,
with rapid development of appropriate membership and involvement.
Whilst recognising the constraints on funding, some members feel
very strongly that the LINks will require high profile, accessible
"shop-front" premises in order to engage with and attract
local interest and involvement.
Key points:
— The funding for LINks provided through
local authorities should be clearly defined and monitored.
— The host organisation must have
a knowledge of the local health and social care sector and be
based in the local community.
— It is essential that LINks are provided
with dedicated accommodation and administrative support, appropriate
and sufficient to enable the objectives and remit of LINks to
be achieved.
1.4 Areas of focus
As the LINks are to be set up as independent
organisations with the ability to set their own agendas within
the scope of LINks' statutory functions, it is likely that the
"areas of focus" will vary widely between LINks organisations
and will be influenced by local priorities and the strength of
the involvement of various groups and individuals. This freedom
to set their own agendas is vital and from experience gained within
the voluntary and community sector (VCS), it is clear that the
enthusiasm and commitment of VCS members is enhanced if there
is freedom of choice of focus, recognising the key role that it
is proposed that LINks will have in contributing to the commissioning
and planning of services, in addition to provision.
Key point:
— The freedom for LINks to set their
own agendas is essential, dependent on local priorities and interests.
1.5 Statutory powers
We note that the current legislation on health
service consultation Section 11 of the Health and Social Care
Act is to be simplified and strengthened in the new legislation.
It has been recorded in the press and elsewhere that on a number
of occasions consultation processes have not been initiated appropriately
by healthcare organisations. The provision of health and social
care is currently moving through a period of very significant
change and it is essential that the message is clear that consultation
processes are not a matter of choice for health and social care
organisations but a clear statutory requirement. [We note the
Local Government and Public Involvement in Health Bill, Part 11
Clause 163, Duty to consult users of Health services.].
More recently in the government's response to
A stronger local voice (1.41) the government has responded to
PPIF's concerns that the power to enter health care premises was
not to be provided for LINks. We note the statement: "We
therefore plan to provide LINks with the power to enter health
and social care premises (with some exceptions) and to observe
and assess the nature and quality of services.".
Patient and Public Involvement Forums have been
extremely concerned that this power was not to be continued within
LINks. It has probably been the most effective power that the
PPI forums have been able to use when observing and assessing
the nature and quality of specific services. It is vital that
LINks are provided with this power. [We note Local Government
and Public Involvement in Health Bill, Part 11, Clause 156 Service-providers
duties to allow entry by local involvement networks.].
Key points:
— We support the strengthening of
the consultation process.
— We applaud the decision to provide
LINks with the power to enter health and social care premises
to observe and assess services.
1.6 Relations with local health trusts
Within the current patient and public involvement
system the PPIF's engagement with their local healthcare trusts
is variable. With many trusts the relationship is constructive
and becoming more so over time. An increased emphasis on user
and public involvement within the criteria used for measuring
and benchmarking a trust's annual performance will advance this
process, facilitated by the healthcare organisations being required
to address specific standards in relation to engagement.
It is obvious from PPIFs' experience that user
and public involvement needs time to become established within
each local community. Individuals are often actively involved
in a voluntary or community organisation that serves their own
or their family's particular interests and needs. The individual
knowledge that they gain is extremely valuable, as it is based
on practical experience, but to draw all these experiences together
to contribute to the wider debate and decision-making process
concerning the delivery of local services is complex. It will
require the commitment of health and social care providers and
commissioners as well as the LINks and other public and user representative
bodies.
Key point:
— The success of the public and user
involvement agenda will require the commitment of health and social
care providers in addition to that of LINks and other public and
user representative bodies.
1.7 National coordination
Whilst recognising that a representative national
organisation with regional representation will be necessary to
form the hub and spokes of a national network, we believe that
the focus should be on the activity of LINks at the local level.
LINks should be encouraged to communicate freely with each other,
benefiting from practical networking and the sharing of experience.
We recommend that the engagement at national level should follow
the model proposed for LINks, ie that the network model should
provide for inclusiveness and not develop into an exclusive membership
of a limited number of LINks or individuals, who then become the
"voice" of all LINks. Membership of the national representative
group should be through election and with limited terms of office
to allow for a changing cohort of members drawn from as wide a
spectrum as possible.
During the period of development of PPIFs up
to and including the present, the issue of which PPIF members
are presumed to represent the wider membership has been a matter
of continuing concern. The process for nomination and election
of representative members should be effectively supported and
acknowledge that potential nominees will require appropriate information
on the role and responsibilities, encouragement to participate
and support through training.
Key point:
— A LINks representative body at national
level will be required but the focus of attention should be on
the activity of LINks at local level.
2. How Should LINks Relate to Avoid Overlap With:
2.1 Local Authority structures including Overview
and Scrutiny Committees
We believe that LINks must ensure their independence.
However, working constructively with health overview and scrutiny
committees (OSCs) will be essential in order to maximise capacity
and ensure that HOSCs are informed by as wide a range of users
and the public as possible; the two structures should be complementary
to each other. Our PPIF has developed a constructive relationship
with the local authority's HOSC. Two PPIF members are currently
co-opted as members of the HOSC, one as official representative
of the PPIF and the other co-opted for their broad experience
relating to health and social care. However, we are aware that
there are still PPIFs that have minimal contact or dialogue with
their local HOSC.
Key point:
— Working constructively with health
overview and scrutiny committees will be essential in order to
maximise capacity and ensure effective exchange of information.
2.2 Foundation Trust boards and Members Councils
As the role of LINks is to be structured around
the care pathway it will be essential that LINks connect with
local foundation trusts, as with any other healthcare organisation.
It is expected that members of the foundation trust, who represent
the local community interest, will be encouraged to become LINk
members. It will be up to the local LINk to decide how to connect
most effectively with health and social care providers and to
recognise the diversity of organisational structures. This understanding
of the complex health and social care environment will need to
be developed with the support of appropriate training.
Key point:
— As the role of LINks is to be structured
around care pathways, LINks will need to connect with Foundation
trusts as with any other health or social care provider.
2.3 Inspectorates including the Healthcare
Commission
It is to be expected that inspectorates will
promote best practice in relation to user and public involvement
by making full use of LINks by involving them in assessment processes.
All bodies involved in monitoring the delivery of health and social
care should maximise opportunities for engaging service users
and the public and co-ordinating their inspection activities.
It is recognised that with the development of regulation and inspection
bodies over the past few years, there has been an excessive amount
of duplication, which in itself causes disruption to the organisations
being monitored, reviewed or inspected.
Key point:
— It is to be expected that inspectorates
will promote best practice in relation to user and public involvement
by making full use of LINks by involving them in assessment processes.
Formal and informal complaints procedures
Users often find the NHS complaints procedure
convoluted, extended and not infrequently come out at the end
of the process still dissatisfied. The system has been the subject
of research and reform on a number of occasions over the years,
the latest addition to the process being the NHS Redress Bill
published in November 2006.
The successful introduction of the Patient Advice
and Liaison Service (PALS) into NHS trusts providing informal
access to users with concerns about healthcare is recognised and
the PALS department within our PCT has been a very useful first-line
contact for raising issues of concern to the PPIF. Due to their
success the PALS departments of trusts are now becoming somewhat
overstretched but it is envisaged that LINks will find it appropriate
and productive to build an effective dialogue with local PALS
departments. It is not considered appropriate that LINks should
get involved with individual complaints, either the informal concerns
voiced through PALS or the formal written complaints taken forward
through the NHS complaints procedure. However, it will be appropriate
and necessary as part of the LINk information and monitoring role
that providers of health and social care services automatically
provide LINks with copies of the routine complaints and adverse
incident reports that are required to be produced routinely for
reporting and learning purposes. These reports and other reports
that LINks will receive from organisations and individuals will
enable LINKs to monitor general trends and follow-up specific
issues where it appears the issue may indicate a wider area of
concern.
Key point:
— Links should receive copies of the
routine reports on complaints and adverse incidents that are compiled
as a reporting requirement by health and social care providers.
2.5 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?
The current legislation on health service consultation
places a duty on all NHS organisations to make arrangements to
involve and consult patients and the public in the development,
planning and operation of services and particularly in the event
of a significant change to an existing service. The current consultation
requirements are probably sufficient in breadth but not effectively
implemented and we strongly support the view that the legislation
on consultation is to be strengthened. Trusts are not sufficiently
aware of their responsibilities or, perhaps because of practical
pressures attempt to avoid or minimise the process. Whilst it
is recognised that consultation exercises divert the energy and
time of the personnel involved and are therefore a resource issue
for the organisations involved, it is essential that that the
current legislation is strengthened and that very clear guidance
is issued as to when public consultation exercises must be carried
out.
PPIFs have sometimes lacked the capacity to
be effectively involved in public consultation processes due to
the low number of members of the average PPIF (there is a minimum
requirement of seven members). However, the development of LINks
with a much wider network will provide an opportunity for much
more effective communication with, and involvement of users and
the public in consultations. LINks will have the ability to connect
with their member organisations and receive member views and responses
to the consultation. During the consultation period, HOSCs will
be able to enhance their response to the consultation process
through information provided to them by the LINk. However, the
capacity of LINks to engage with users will be dependent on the
administrative resources made available to them via the support
organisation.
Key point:
— It is essential that that the legislation
is strengthened and that very clear guidance is issued as to when
public consultation exercises must be carried out.
Margaret Dangoor
Vice Chair
Richmond and Twickenham PCT Patient and Public Involvement
Forum
January 2007
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