6 Conclusions
279. PPI describes a wide range of activities and
has a variety of purposes. Patient involvement and public involvement
are distinct and are achieved in different ways. The conflation
of these distinct terms and the confusion over the purpose of
involvement has led to muddled PPI initiatives and uncertainty
about what should be done to achieve effective PPI. Nevertheless,
PPI has the potential to play a key role in both NHS and social
care services by bringing about service improvement and improving
public confidence.
280. Public trust has to be earned and is easily
broken. In some places, consultations have been a sham, elsewhere
NHS bodies have sought to evade their duty to consult entirely.
The Department needs to take a lead and make it clear that such
behaviour will not be condoned.
281. When undertaking consultations all NHS bodies
must follow the best practice that already exists in parts of
the NHS; in particular, they must be clear about what can be changed,
ensure that they consult early enough in the process that plans
can be changed and recognise that even the best designed and run
consultation will not result in public agreement. Consultations
where huge percentages of the public reject plans which go ahead
anyway must not continue to happen.
282. We fear that the Bill will weaken Section 11.
The change of definition it proposes may lead to confusion and
could lead to more court cases when the Act is tested. We are
not convinced that this change is needed.
283. The Secretary of State's interventions in consultations,
especially when done at a late stage in the process, both threaten
to undermine public confidence and lead to illogical decisions.
Before intervening the Secretary of State should refer cases to
the Independent Reconfiguration Panel.
284. The establishment of LINks provides an opportunity
to improve and strengthen the PPI system. However, we do not see
why PPIfs could not have been allowed to evolve. The abolition
of PPIfs seems to have been driven by the need to abolish CPPIH
rather than a real need to start again. Merging the existing PPIfs
to form LINks would have been much less disruptive for volunteers
and would have reduced the risk of significant numbers of them
leaving. As most Forum Support Organisations already support several
forums they could have been allowed to evolve into Hosts, keeping
their experienced staff. Once again the Department has embarked
on structural reform with inadequate consideration of the disruption
it causes.
285. Nevertheless properly designed and resourced
LINks provide an opportunity to improve the quality of PPI and
allow people to have a much bigger input into services in their
area. In order to achieve this, it is crucial that LINks use their
funds in the most effective way. LINks need clarity about what
they should focus on and what work they should produce. This will
provide clarity for volunteers, allow LINks to start up quickly,
and avoid duplicating the work of other bodies.
286. There need to be clear lines of accountability
for LINks as well as for Hosts. Hosts needs to be carefully managed
to ensure there is not the inconsistency found in FSOs.
287. Organisations like LINks, PPIFs, PALS, ICAS
along with formal processes like Section 11 and Section 7 are
not the most crucial aspects of PPI. Indeed the existence of separate
structures for PPI has tended to reinforce the NHS's tokenistic
approach to PPI. Effective PPI is about changing outcomes, about
the NHS and social care providers putting patients and the public
at the heart of what they do.
288. The Department needs to recognise that the work
of LINks will be hard to evaluate and measure. If the NHS does
not listen, LINks, however well designed and run, will fail as
volunteers see that their work is not having an effect.
289. If NHS bodies are to involve the public effectively,
they need to do so at an early stage and before any options are
drawn up or decisions are made. This means it may be difficult
to determine exactly what changes their involvement has brought.
290. Many NHS and social care organisations have
done PPI well. As Candy Morris said "NHS is a real mosaic
of good and less good practice".[264]
The existence of good practice shows that there is no reason why
the NHS and social care providers cannot all effectively involve
patients and the public. NHS providers and commissioners must
not assume that they know what people want. They should go out
and ask them.
264 Q 369 Back
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