7. Evidence submitted by Avon, Somerset
and Wiltshire area PPI Forums (PPI 89)
INTRODUCTION
1. This response to the Health Select Committee
Inquiry into future patient and public involvement arrangements
is submitted on behalf of around seventy members drawn from PPI
Forums operating in Bath and North East Somerset, Bristol, Gloucestershire,
North Somerset, South Gloucestershire, Swindon and Wiltshire.
2. This report is the feedback of discussion
groups considering future public involvement issues that took
place at a Members' Conference in Warminster, Wiltshire on 1 December
2006. Details of the inquiry terms of reference were not known
at the time that the Conference agenda was planned—so the
feedback is either directly attributed to relevant questions posed
by the Committee or included as additional comments.
3. The report has been compiled by staff
of the Health Advocacy Partnership, a not-for-profit Forum Support
Organisation operating in Avon, Gloucestershire, Somerset and
Wiltshire.
4. The views reported as bullet points to
each question are as agreed by the members participating in the
Conference and are submitted without amplification.
QUESTIONS POSED
BY THE
SELECT COMMITTEE
5. What is the purpose of patient and public
involvement?
— to become a national / local body
and voice of the public;
— to be the eyes and ears of the public
(not the NHS)
6. What form of patient and public involvement
is desirable, practical and offers good value for money?
— to contribute a public perspective
to the Healthcare Commission's Annual Health Checks;
— to carry out and report on health
related activities, visits, and surveys;
— to respond with a public view to
crisis's as they arise;
7. Why are existing systems for patient and
public involvement being reformed after only 3 years?
No specific view expressed—apart from
the general conclusion that there is a risk of losing experience
and expertise—and it seemed to be a bit of a waste of money.
8. How should links be designed, including
8.1 Remit and level of independence
— make patient's voice heard and be
the eyes and ears of the public—not the NHS;
— there is a need to retain independence
from PCT and other provider organisations;
— contribute to Healthcare Commission's
annual Health Check;
— produce Forum Annual Report;
— work with local OSCs and regulatory
bodies;
— clear definition of role and responsibilities;
— respond to crises as they arise;
— listen and monitor your Trust/patient
outcomes; and
— have more statutory powers.
8.2 Membership and appointments
Important to:
— maintain adequate numbers of members
to achieve work plan priorities;
— determine whether existing Forum
members are willing to continue;
— keep members motivated and involved;
— actively recruit for communities,
groups and local people;
— achieve continuity and clear communication;
— have clearer definition of members'
role;
— devote time and resources to team
building;
— set achievable targets in LINk work-plans,
and regularly review;
— prioritise "what" members
do; and
— participation should be recognised
as a public duty—just like jury service.
8.3 Funding and support
Important to:
— provide adequate funding to support
and complete projects;
— avoid time wasting activities;
— reduce number of meetings;
— enable members to allocate resources;
— continual support to complete projects—this
has resource implications; and
— maintain support for hospital visits—and
to other facilities.
Members discussed question: what training should
be provided to help participants participate effectively?
— What will LINks consist of: structure;
support organisation; working arrangements; need to know what
LINks do to define training.
— Training on "what is a LINk".
— Statutory duties and rights.
— Provide information not just training.
— Specific training on the issue in
hand; ask the right questions.
— Relevant communication.
— How to conduct and behave in a meeting
objectively.
— How to communicate with the public.
— Health and social care education.
— To know who runs LINks.
— Leader of each network with a clear
vision and mission.
— Job description for volunteers and
training on this.
— Initial—understanding NHS structure.
— Explaining how LINks will work.
— Clarity on statutory powers.
— Ensuring commitment from a "sense
of belonging".
— Training for specialised areas eg
visiting; PR; checking Trust Literature etc; Public meetings eg
use of microphones.
— Who will decide? Who is trained at
what in which way? government; members of LINks; support organisation.
8.4 Areas of focus:
— Set achievable targets.
— Current PPIF activities that should
carry forward to focusing LINk activities include:
— Treatment for long term conditions.
— Staffing levels.
— Infection control.
— Social Care.
— Maternity Services.
— Dentistry.
— Access and Transport Project.
— Carer's Project.
— Patient Choice.
— Mental Health issues.
— Acute—ongoing project work (eg
delayed discharge; "essence of care").
— Visits—with a purpose and value.
8.5 Statutory powers
Members discussed question: what powers do
you think LINks should have?
— Impossible to say until the actual
structure and membership is made clear, but LINKs need to be represented
on relevant bodies eg NHS Trust Boards, Social Services Committees,
OSC.
— All existing Forum powers should
be retained.
— To have staffed office in each OSC
area.
— Right to access—short notice,
1 hour; right to require information.
— Find out about complete package of
care and monitor.
— Right to verify independently what
is going on.
— Cover social care and health.
— Sit on boards—PCT; hospitals;
social services.
— Right to know how response to complaints
have been carried out.
— Check if individuals (with patient's
consent) care package has been implemented.
— Right to challenge government.
— To require PCTs/Trusts to work with
LINks.
— Right to monitor and report with
recommendations.
— Make visits to NHS and social care
facilities, including:
— including short notice visits; and
— community hospital/centres.
8.6 Relations with local Health Trusts
— Contribute to annual Health Check.
— Right to report on Trust activities
and receive a response.
— forge independence from PCT and other
provider organisations.
8.7 National coordination
— Encourage some projects to be done
nationally.
— Gather information "statistically"
on one subject—at national level with regional breakdowns.
9. How should links relate to and avoid overlap
with
9.1 Local Authority structures including Overview
and Scrutiny Committees
— Contribute to OSC reviews.
— LINks be represented on OSCs.
9.2 Foundation Trust boards and Member Councils
— Share membership—foundation
members can also be members of local LINks.
9.3 Inspectorates including the Healthcare Commission
— Contribute to reviews an reports.
— Suitably trained members to be part
of inspection teams.
9.4 Formal and informal complaints procedures
— Receive regular reports on local
trends.
— Use complaint trend reports as evidence
to support work-plan priorities.
10. 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?
10.1 Not discussed.
11. OTHER ISSUES
The Conference considered a number of other
issues—not directly related to questions posed by the Health
Select Committee. However, members asked that their views be shared
with the Committee as they believe that some of the issues remain
relevant. These are:
11.1 How can individuals participate effectively
in LINks?
— Facilitate communication between
the public and LINks eg walk in centers; letter; third parties.
— Need more information and case studies
before people can work effectively.
— Who will provide the link between
HAP/? and vested interest groups to provide fairness and balance
to ensure generic issues are covered eg hospital cleanliness.
— Existing Forum members could be in
a "pool" to conduct visits etc to hospitals/surgery's
etc—members already have CAB checks and training.
— Join other organisations in strategic
partnership; community's.
— Encourage people to comment and feed
in at "source" of treatment which is then taken forward
to LINks.
— Encourage increased membership to
other organisations and LINks.
— Lay inspectors (volunteers).
— Activate communication to general
public about LINks—and to other organisations eg WI's; Rotary;
Lions.
— Focus groups and public meetings.
— Start working with young people through
citizenship/personal and social education so they become active
citizens for life.
— Provide a real effective host organisation
with contractual remit to involve widest section of community
possible.
11.2 How would you like to see links operate?
— Panel selection—independence;
open application; non-political.
— Core Group—engender continuity,
ideas and sense of membership.
— Change the name to distinguish from
other "LINks".
— Simple access to IT for users and
alternative access link— need IT.
— people in place for people to "use"
to obtain info.
— Need a national/body voice—well
defined structure.
— "Core Group" needs chair/named
contact—defined role of chair/facilitator.
— Involvement—sub groups attracting
interested people.
— Publicity to attract people.
— Link with health/social services;
care groups—many already contacted, need to build on this.
— PPIF Members to be invited to be
"members" of LINks chance to make use of past experience—committed,
continuous membership.
— National and local support organisation.
— "Chief Executive" and admin
support.
— Vetting of voluntary sector organisations.
— Transparent and objective selection
of groups and individuals.
— Inclusion of non-computer experts.
— Support for "Right of Access".
— Leave of absence for employed members
to attend meetings/activities. General consensus to encourage
younger members to join, invariably this can only happen if legislation
allows individuals to take paid leave from their place of employment.
Full support of employers will be needed to make this happen..
— Public need to know that LINks will
be permanent not transient
— Remember that PPI/LINks are voluntary
and independent.
11.3 What can LINks do to engage the public
effectively?
— More planning: learn from mistakes
made when setting up Forums; clear focus and expert delivery;
clear points of contact.
— Promotion exercise: effective marketing;
robust properly funded publicity; resources—major! to ring
fence—no shoe strings allowed; show that LINKs has power;
lack of resources will indicate that government are cheapskates.
— Government need to heed feedback
from Patient Forums and not repeat the same process with LINKs
that they did with PPI.
— Inform public and convince them to
become involved.
— PCTs to be paid on results.
— Build profile to dissolve apathy.
— To be seen to support the public
in their concerns.
— Named permanent contact point.
— Encourage young people and ethnic
minorities to apply.
11.4 What can realistically be achieved for
LINk work plans?
— Depends how hard you work with membership.
— Avoid time wasting activities.
— Do the best we can with resources
we have got.
— Use smaller working groups.
— Produce Annual Report and contribute
to annual Health Check.
— Carry out monitoring visits.
— More work less meetings.
— Guidelines on how to conduct meetings.
— Complete "Must do" items.
— Depends on who is listening to us.
— Forward planning with short term
activities that are achievable.
— Commissioning from PCT's and GP's.
— Treatment for long term conditions.
— Fully understand NHS and PCT provider
issues.
— Access issues—transport and
parking.
— Swiftly identify priorities then
swiftly identify project.
— Patient choice (Swindon and Great
Western Hospital).
12. Conference agreed that these general
points do not preclude other comments being submitted by individual
Forums or members—recognising that the views expressed reflect
the experience of members, which may be different from other areas.
Nick Westbrook
Health Advisory Partnership
10 January 2007
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