122. Evidence submitted by Trevor Gash
(PPI 146)
I am submitting this response as an individual,
but notify you that I am Chairman of the PPI Forum for the Luton
and Dunstable Hospital.
An issue, which is not offered for consideration
is the proposed title for the new organisations. At a recent "Getting
ready for LINks" event I tested the matter with various Local
authority, FSO, NHS, voluntary organisation and Forum colleagues
and received a unanimous agreement that it follows the pattern
of both preceding organisations in conveying little or nothing
of the role or purpose to the public.
1. What is the purpose of patient and public
involvement?
1.1 It should provide an effective replacement
in public services of the customer power exercised through purchasing
choice in a free market.
1.2 It should represent, as far as practically
possible, the balanced view of the population within an area and
not an assembly of the views of special interest groups.
1.3 It should be a voice for patients in
all matters of concern other than issues of individual complaint.
2. What form of patient and public involvement
is desirable, practical and offers good value for money?
2.1 Volunteers recruited after widespread,
clear and honest publicity working within a professionally managed
organisation under uniform systems and codes of practice.
2.2 Organisations with which commissioners
and providers are obliged to engage in a meaningful way in clearly
understood areas of involvement.
3. Why are existing systems for patient and
public involvement being reformed after only three years?
3.1 Because of substantial mismanagement
by Government/Department of Health from the outset evidenced by
decision to abolish Commission just five months after setup of
Forums and inability of DoH to understand frontline reality, most
clearly indicated by John Reid statement relating to MRSA policy.
3.2 Absence of material and productive input
from the Director of Patient and Public Involvement in Health.
3.3 Absence of compulsion [on a level of
importance equivalent to targeted functions] on NHS Units to fully
and actively engage with Forums.
3.4 Confusion with regard to the roles of
other organisations in the matter of representation.
4. How should LINks be designed, including
Remit and level of independence
4.1.1 If the declared aim of an integrated
approach is to be achieved, then remit should include all areas
of healthcare and healthcare related social care, even if, direct
involvement is proscribed as is claimed to be for valid reasons
in regard to Children's Trusts, so as to avoid failures at margins
or interfaces.
4.1.2 Whatever associations Members have,
LINks should be totally independent of NHS, local authorities,
voluntary organisations and special interest groups.
Membership and appointments
4.2.2 Membership should be confined to individuals,
it is totally unacceptable for organisations to be members.
4.2.3 The matter of CRB checking in relation
to the very necessary right of entry and possible contact with
vulnerable individuals, suggests that two classes of membership
should be available so that those who chose not to be involved
in "monitoring" are able to do so, but clearly identified.
Funding and support
4.3.1 Funding must be on a uniform basis,
achieved by whatever bureaucratic, but transparent process is
available, but a review should be undertaken to establish the
appropriateness of adjusting local funding within a national framework
to account for matters such as the additional costs involved in
translation work in areas of high ethnic diversity/recent immigration.
4.3.2 Support organisations should have
to demonstrate a sound basic understanding of the structures,
systems etc with which members have to engage.
Areas of focus
4.4 No comment
Statutory powers
4.5.1 The right of entry has apparently
been accepted. It is essential.
4.5.2 All commissioners and providers should
be compelled to operate under an obligation of ongoing informal
consultation as well as substantial change and major public consultation
rules.
4.5.3 Guidance/rules should make it clear
that normal route of referral to DoH or Monitor should be via
Overview and Scrutiny, but option should be available for time
critical issues to be referred directly.
Relations with local health Trusts
4.6.1 Obligations to achieve a "social
contract" with Trusts should be incorporated, forcing Trusts
to fully engage with LINks and obliging LINks to behave considerately,
constructively and consistently with Trusts.
4.6.2 The Health Select Committee should
review the DoH policy in this area. Inverted logic seems to be
applied in regard to the impact of "Choice". Specialist
Hospitals with national catchments and Ambulance and Mental Health
Trusts with catchments crossing local authority boundaries seem
ill-served.
National coordination
4.7.1 Unlike a number of Forum Members,
I do not perceive a need for a significant organisation, but a
small secretariat able to collate input, identify nationally shared
significant concerns, facilitate liaison and report to DoH or
Monitor or issue Press Releases on a national basis on such issues
could be valuable.
4.7.2 KMS has been a cumbersome disaster,
but a national website within which individual LINks would have
pages reached via a search on the homepage or direct keying [eg
links.org/luton] plus a site purely accessible to LINks for seeking
those with similar experience for example administered by the
Resource Centre would be very valuable.
5. 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
5.1.1 The roles appear distinct:
| OSCreview of substantial changes
Trust Boards & Members Councilsservice delivery
Inspectoratesachievement of professional standards
Local authorities & PCTsadequate provision of care
LINksrepresentation of public interests/concerns
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So long as each is charged with recognising and respecting
the roles of the others and obliged to work cooperatively the
matter should be clear.
5.1.2 There is no mention here or in the "stronger
local voice" procedure of the patient focus/representative
etc. groups established by GP practices and Hospitals. Since these
are not independent they should be seen as valuable assistance
to the provider and not adequate discharge of PPI responsibilities.
They have been a good option for those not wishing to take on
the more arduous responsibilities of Forums and may offer recruitment
opportunities as indicated in 4.2.3. It is their role that needs
definition in NHS guidance or in legislation.
Formal and informal complaints procedures
5.2.1 The starting point should be the NHS complaints
procedure, which fails patients in a significant way. Patients
should be able and encouraged to make "comments" about
matters good and bad. The system should make it easy for this
to be done at the time of treatment/care or later. Where individual
case facts are not relevant matters should be pursued on anonymous
basis. Patients should be made aware of LINks and given the opportunity
to pass details [anonymously if required] for the possible future
benefit of others.
Internally, adverse comments should be given equal status
for statistical and review purposes as complaints. Formal complaints
should be distinguished only for procedural purposes. All "complaints"
should be reported anonymously in a statistical analysis that
is adequate enough to give a reasonable picture of area and type
of complaint and response time. The report should be made regularly
to the appropriate LINk.
6. 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?
6.1.1 The matter of significant or substantial is well
understood at the highest level in the NHS, but not apparently
in some areas, if proper dissemination of the principle takes
place, the first question is answered. The form should always
befor engagement at the earliest practical opportunity,
with communication in plain English in as brief a manner as reasonably
describes the issues. At that time or shortly thereafter, supporting
facts, opinions, statistics etc. should be provided. Where it
is evident that consensus exists opportunities to curtail procedures
should be available. All authorities should be encouraged to explore
more enterprising ways of notifying the public.
Trevor Gash
Chair, Luton and Dunstable Hospital PPI Forum (comments are made
as an individual)
January 2006
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