64. Evidence submitted by the NHS Alliance
(PPI 81)
1. What is the
purpose of patient and public involvement?
1.1 If harnessed correctly, properly resourced
and implemented effectively, PPI could change the face of the
NHS. It has significant vote-winning potential. When local people
are meaningfully involved in the running of their local heath
services with positive change as a consequence, a virtuous circle
of development can follow. The purposes of PPI are:
— At a community level: to ensure
that local people are involved in the planning, the monitoring
of new services and the improvement of existing ones.
— At an organisational level (practice/hospital):
to ensure accountability for practice development and practice
services.
— At an individual level: to ensure
shared decision-making to the extent that the patient wants it,
offering the informational support that the patient needs.
1.2 In addition, if community development
is used as a key approach to PPI, an additional important outcome
is significant health gain through the fostering of social networks.
And greater self-care.
2. What form of patient and public involvement
is desirable, practical and offers good value for money?
2.1 LINKs could offer excellent PPI if given
the correct support and organisational frameworks (see later).
We know from MORI studies that people want services to be:
— Representative but also local.
— Accessible with a wider range
of people to be involved.
— Change needs to happen as a result
of PPI.
— There needs to be a democratic
process underpinning PPI.
2.2 We know, from the same source, that
people want to influence:
— The development of new services.
— The improvement of existing
services.
— The monitoring of quality.
— The minimising of waste.
2.3 The approach that will work best, in
the view of the NHS Alliance, has to have the following characteristics:
— Creates engagement without exhaustion
for clinicians, the patient and publics. Brief liaisons are OK.
— Is flexible, drawing in a range
of people in different ways and in different places.
— Challenges but can also co-operate
with the establishment.
— Obtains rich ideas and recommendations.
2.4 We think that community development
is the key. Community Development (CD) is a process that mobilises
communities to become participants in both defining problems and
developing solutions to health and health service issues, and
that reaches out to those most likely to be excluded.
— CD works with individuals and
communities.
— It promotes health by bringing
people together in social networks.
— Its raison d'etre is
to get local voices heard and to support change.
— Interdisciplinary because it
listens to what local people say—links regeneration and
health.
— Light on practices, patient
and publics.
2.5 There are a number of examples of good
practice, where CD is linked to the workings of the PCT and the
local authority. I can offer more details on these.
2.6 We also think that PPI needs to be promoted
in practice-based commissioning (PBC). At the moment, despite
exhortation, PPI is poorly represented in PBC. Local people should
be involved in defining PBC cluster priorities, improving pathways,
spending savings, monitoring quality. I can offer more details
on this.
2.7 The NHS Alliance recommends that LINKS
should bring existing groups together, should harness the CD activity
that is already happening in their area and should be represented
on all key groups in the PCT and in PBC clusters.
2.8 Patient access to the full GP record
is essential to ensure PPI at the individual level of shared decision-making.
Tailored information provision is the key, so long as the data
is linked to good accredited health information that makes sense
of what the patient is seeing. This is available now and promises
to revolutionize care. Full record access has been shown to:
— Increase trust in clinicians.
— Improve relationships with their
practice.
— Improve compliance in medicine-taking.
— Encourage preventative health
behaviour.
— Enable patients to obtain their
own health information without needing to contact the practice
(allergies, immunisations).
— Empower patients to care for
themselves more effectively.
— Use consultations with their
clinicians more effectively.
— Save time for themselves and
the practice.
— Correct errors in the record.
2.9 These are significant benefits and are
summarised on the ICMCC website http://recordaccess.icmcc.org
By designing appropriate and additional functionality, benefits
can be enhanced further.
2.10 There are real advantages to the patient
(quite apart from ethical considerations) in enabling access to
the full record. This goes beyond current plans for HealthSpace
and the Committee should support this development. I can offer
more details on this.
3. Why are existing systems for patient and
public involvement being reformed after only three years?
3.1 Although the NHS has got much better
in the last 10 years at listening to what local people recommend,
there is little evidence that the recommendations have led to
much change.
3.2 The key limiting factor is that NHS
organisations are not flexible and they remain unaccountable.
There is no overriding reason why they should listen to local
people. This is why the system is felt to need changing.
3.3 A serious worry in the current incarnation
is that there still remains no guarantee that a PCT or a PBC cluster
will HAVE to listen and HAVE to respond to its population. The
Committee should insist on process that goes beyond Section 11:
this demands that NHS organisations listen, but does not actually
insist that they respond to local recommendations. The original
suggestion was that new legislation would be developed that insisted
that NHS organisations responded to local recommendations. This
has got stuck, as I understand it, and is in danger of disappearing—the
Committee needs to pursue it.
3.4 In addition, in order to keep PPI high
on the agenda for NHS organisations, the HealthCare Commission
needs to ensure that its developmental standards are rigorous
and stretching for Trusts and that the PPI elements from a significant
part of the scrutiny.
3.5 In our view, tipping the scales with
petitions is not the way to go. They do not allow for planning
and they can be hijacked by special interests.
3.6 Another reason that reform has been
called for is that CPPIH's recruitment process was complex and
excluded many people—as a result PPI Forums were less inclusive
and effective than they could have been.
4. How should LINks be designed, including
4.1 Remit and level of independence:
they should be as independent as possible, both from the NHS and
from the LA. The LA's supervisory role may cause problems here.
The remit needs to be as broad as the three
points at the beginning of this submission. LINKs should see themselves
as umbrella organisations that harness the energy and experience
of grass-roots organisations in the area. They should see themselves
as focusing that heat and light on getting patient-centred change.
4.2 Membership and appointments:
for maximum efficiency, LINKs should draw on as many local voluntary
agencies as possible, all of whom should have a stake in the LINK.
Any individual who want s to be part of the process should be
able to join. The prime approach should be to have as open an
organisation and process as possible.
4.3 Funding is essential for:
— Contributors' time—there
are now many effective schemes for paying local people for this
kind of work.
4.4 Support will be needed for:
— Ensuring the right approach
is taken—non-deferential and intent on securing the best
arrangements for patients.
— Maximising the use of community
development.
— Understanding how patient record
access can make a real difference to care.
— Understanding aspects of the
new NHS, including practice-based commissioning.
— Understanding how ot use the
powers LINKS will have.
The Centre for Public Involvement at Warwick
University will be an excellent institution to support LINKs.
4.5 Areas of focus: the agenda should
be set by local people. However, linking with PCT and Trust priorities
will need to part of the mix. Again, LINKs should be seeing themselves
as umbrella groups coordinating grass-roots work. They need to
be on all key Trust committees which means they will need a lot
of people.
It will also be helpful if they encourage/cajole/insist
on good PPI practices in their Trust(s). PPI process should be
embedded in all aspects of the organisation(s). This is currently
rarely the case.
4.6 Statutory powers: LINKs need
to be able to inspect wherever and whenever they want. If they
are backed up by Section 11 and any new legislation, they will
have a solid basis for intervening when needed. Training will
be needed to emphasise this.
4.7 Relations with local health Trusts:
if relations are poor, little will be achieved. An aggressive
approach will not work. PPI services should support clinicians.
They should be, if possible, not confrontational, facilitating
patient panels and PPGs, helping practices respond to the wider
determinants of health. They should foster an approach that says:
"we are in this together, trying to improve care for patients."
If all that fails, they will invoke the law.
4.8 Relations with OSCs: I add this item. I
am concerned that OSCs will not have the capacity to deal with
the volume of activity that is likely to be generated by an efficiently
working LINK organisation. Short of increasing their workforce,
I cannot see a way round this.
5. How should LINks relate to and avoid overlap
with
5.1 Local Authority structures including
Overview and Scrutiny Committees: I understand that the LA
will usually host the LINKs and will offer support and research/audit.
Funds will also flow through the LA. The LA will not have any
regulatory function with regard to LINKs.
As suggested above, LINKs need to be as independent
of the LA as possible. This may need emphasising given the closeness
of working. If lINKs see themselves as umbrella agencies, they
are less likely to duplicate work with the LA. Close working will
make the use of community development more likely, as the LA will
be the most ready source of CD expertise and activity.
5.1.1 A good relationship with the OSCs
is essential. OSCs will be able to more in depth work on specific
issues than LINKs. So long as coordination is maintained, overlap
should not be a problem.
5.2 Foundation Trust boards and Members
Councils:
5.3 Inspectorates including the Healthcare
Commission (HCC): as mentioned above, the HCC needs to develop
a robust PPI agenda and developmental standards. The LINKs can
harness the findings of the HCC, for instance to bolster its own
work. It may be able to call on the HCC to investigate specific
issues. The HCC should be able to use the LINKs' investigations
and conclusions for its own reports. In summary, there are mutual
interests, on the whole.
5.4 Formal and informal complaints procedures:
LINKs should be in touch with PALS which accumulate data on complaints.
The LINKs should not transgress on PALS's territory and should
not receive complaints directly. LINKs should be working with
PALS to remedy the causes of the complaints.
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 It depends what you mean. The job of
the LINKs is to develop processes that seamlessly and painlessly
enable informal public consultation all the time under Section
11. If the system is working well, it would be easy for a PCT
to find out what local people feel about their cardiac services
and what recommendations for change they may have. It should also
be easy for local people to generate an agenda for change in,
say, sexual health services if that is seen by them as a priority.
6.2 Formal consultation needs to be instituted
when:
— A significant change is being
proposed.
— A petition with enough names
on it is submitted (if this approach is continued).
7. In summary
7.1
— PPI can be seen as occurring
at three levels.
— LINKs should be umbrella organisations
which flexibly "harvest" local views. They will enable
local people to dip in and out of engagement when they want. They
will also enable clinicians to dip in and out, so that no-one
gets exhausted.
— Community development is a vital
approach to ensure good engagement of local people, effective
outcomes and health gain.
— PPI must get changes made.
— Patient access to their full
electronic GP record is essential for effective shared decision-making
at the consultation.
— The NHS must ensure that organisations
have to be made and/or incentivised to respond to local recommendations.
— LINKs should be as independent
as possible, setting the agenda from local people's views.
— LINKs need to work cooperatively
with local health organisations so far as possible.
— Petitions are not recommended
as a viable way forward.
Brian Fisher, GP
PPI Lead for the NHS Alliance
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