“No decisions about us without us”? Individual healthcare rationing in a fiscal ice age

As someone who has been a lay member of an IFR panel for 5-6 years
[one of a very small band apparently] I'd like to offer some observations
on that part of the June 13th article in the BMJ [BMJ 2011; 342:d3279]
dealing with lay representation.

I joined the PCT as someone with no scientific/medical knowledge and
with no background in the NHS but with experience of other public sector
activities - housing, planning environment, regeneration. The first thing
that struck me was that the NHS generally seemed to have failed almost
completely to absorb any of the experiences gained elsewhere in public
services, over the past 50 years, as to how to engage the public in
decision making [generally, if not completely, I'd absolve the PCT I
joined of this criticism]. It is much closer to the clientalist than the
consumerist model of service delivery, it often sees the limit of public
involvement as 'giving information' [witness the 'Nine principles'
published a couple of years back], and on occasions exhibits an antipathy
to the very idea of public involvement. Attitude and culture facilitate or
limit lay contributions, and therefore any benefits that can be gained, so
in my view change is necessary in these areas. Participation is a two-way
street, in the sense that not only do lay members have to add to their
knowledge to effectively engage in decision-making processes, but the
'professionals' have to make an effort to see things from a lay
perspective; most importantly, they have to come to terms with the idea
that giving lay people a role means that they are giving away some of
their power, something that is usually done with reluctance and
trepidation.

With this general perspective in mind I'd like to consider the
questions raised in the last paragraph of the "Should IFR panels include
lay people" section of the article.

* The question of "Who do they represent and for whom do they speak" has
the danger of leading to a blind alley - a line of thinking that asks how
can lay participants achieve legitimacy if they do not properly
'represent' a constituency, which is unachievable in any practical sense
if all different interests are to be covered. I see my role as simply
being 'outside' rather than 'inside', representing a lay interest in the
sense that I'm seeking to ensure that the technical content of decisions
doesn't lead to a technocratic approach, and that this status also adds an
extra element of accountability. Of course, this also means that I should
make sure I 'move on' before I lose my value through a process of
incorporation.

* Asking about the value of "common sense" can lead to a limited view of
potential contributions. As I've said above, the NHS seems to be
peculiarly [or maybe wilfully] ignorant of lessons learned elsewhere, so
raising awareness of these lessons is a contribution of some value.
Secondly, medicine is like any other profession in that it is inclined to
exist in a silo and thus slip into accepted ways of doing things. In
moving between different professional environments I have found that, out
of unfamiliarity, I often ask stupid questions but from time to time I get
stupid answers: this happens at the PCT and then I feel I have
demonstrated my value.

* Asking the question about "coping with complexity" suggests an
unawareness of participation as a two-way street. As we are dealing with
'exceptional cases' at an IFR panel, it is often the case that the
problems or solutions under consideration are unknown to the clinicians
around the table, never mind the lay/non-medical members, so it has to be
explained in a way that everyone can understand. In many other areas of
public activity where lay involvement is sought, such an approach would be
axiomatic. While I can't claim to have mastered either the language or the
science, I feel the quality of explanation available at the panel enables
me to make a contribution, particularly as the robustness or fairness of a
decision is as much determined by the process as by the detail. What is
sometimes a difficulty for me is the desire to use hard evidence, even
when it isn't in my eyes appropriate - for example, when we are dealing
with cases involving mental health/psychological issues: it is also hard
to locate in many of the other cases we consider, a product of the very
fact that they are "exceptional". The reluctance to use a more rounded
form of consideration - to which I think a lay member could contribute -
may have increased of late, as public sector management, including in the
NHS, has become more risk averse and consequently more systems focused.

* As with any evaluation, assessing lay member impact can only be done
against a clear statement of objectives for what they are to contribute,
and I'm far from sure we have that. It will also be the case that lay
members can only make an impact if they are given a proper role to perform
so an external evaluation that was fully prepared to adopt a critical
approach, to both the lay members' activities and to their working
context, would be desirable.

As a final element of reflection, compared with other activities I
have done [being on the boards of various organisations], being on an IFR
panel:

* Involves a greater workload - more, and more difficult, papers to read -
so demands a greater commitment of time;

* Seems to require attendance during the working day, which might be
barrier to participation for many people;

* Feels to bring a greater weight of responsibility - there are 'life and
death' issues, as well as a great deal of public money involved.

These are not the types of obligations that every member of the public
would be willing or able to accept.

Trevor Hart