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MINUTES
OF THE PATIENTS FORUM MEETING HELD ON THURSDAY 23RD MAY 2002
AT THE CONSUMERS’ ASSOCIATION
Present:
Clara Mackay – Chair (Breast Cancer Care);
Marlene Winfield (NHS Information Authority); Judith
Wardle (Continence Foundation); Micky
Willmott (Age Concern England); James Appleyard (BMA);
Janice Kent (reMEmber); Bill
Kent (reMEmember); Geraldine
Amos (Home from Hospital Care); Glynn
McDonald (MS Society); Karen Thomson (Diabetes UK);
Helen Sheldon (College of Health);
Alison Morris (MND Association); Emily Holtshausen (Carers UK);
Ray Appleby (ACHCEW); Frances Blunden (Consumers’ Association);
Judy Wilson (NeLH); Sally Carr (CAIT)
Apologies:
Francine Bates (Contact a Family);
Barbara Meredith (Age Concern London);
Wendy Garlick (Consumers’ Association); Jackie Glatter
(Consumers’ Association); Eileen
Neilson (Royal Pharmaceutical Society GB);
Sheila Dane (Stroke Association);
Mike Took (Rethink); Brian
McGinnis (Mencap); Roger
Steel (Consumers in NHS Research Support Unit);
Geoff Braterman (Homeopathic Society); Ruth Taylor (Haemophilia
Society)
Speaker:
Stephen Bruster, Picker Institute Europe – “Seriously
Surveying Patients” See appendix 1
Minutes of the last meeting
The minutes of the
meeting held on 23rd May were agreed.
Matters Arising
There were no matters
arising not on the agenda
Chair’s report
It was reported that
the Patients Forum had received confirmation from the Department of
Health of funding for the fourth and final year to end March 2003.The
Chair reported that the level of funding is substantially reduced and as
a result a number of planned projects have been put on hold. The Chair
said that the Patients Forum Management Committee are considering other
funding opportunities and would consider issues around the future of the
Patients Forum at an away day in June. Members were encouraged to
feed in any views on the future of the Patients Forum and funding
opportunities. It was confirmed that an application for funding for the
following year to the PPP Foundation had been submitted.
The Chair also reported
that the Department of Health had appointed Harry Cayton as Director of
Patient Experience and Public Involvement in the Department of Health
and that HC had agreed to attend the next Patients Forum meeting to
discuss the new role.
Update on the Health
Bill – Ray Appleby (ACHCEW)
Ray Appleby reported
that the Commons passed a number of motions to replace the previous
Lords amendment including a number of alternative proposals around
PCT Patients' Forums. It was explained that under the new amendments,
PCT Patients’ Forums will be different from other Patients’ Forums,
for example, by holding a wider remit than monitoring services,
including being able to commission advocacy services, to advise health
bodies and also make reports and recommendations. It was reported that
under the new amendment PCT Patients’ Forums will provide the base for
staff employed by the Commission for Patient and Public Involvement in
Health (CPPIH) at a national level. It was also reported that the
membership of PCT Patients’ Forums will take account of the fact that
they have this more overarching remit and will include representation
from the other Patients’ Forums in their area.
Ray Appleby reported
that ACHCEW still had a number of remaining and not insignificant
concerns but also recognised that a number of key principles advocated
by ACHCEW had been incorporated into the new amendments. Ray Appleby
also reported that ACHCEW are pleased that the government have accepted
that the CPPIH should have a role in relation to policy issues affecting
health. RA reported that Peter Walsh would like to formally convey
thanks to all those other organisations that supported the ACHCEW’s
concerns.
Ray Appleby summarised the outstanding issues related to the
practicalities and the mechanisms of the new proposals. He pointed out
that it would have been more sensible for the government to accept the
earlier proposal for Patients’ Councils. Ray Appleby confirmed that
the now that the House of Commons has now overturned the House of Lords
amendments it will go back to the House of Lords. It was reported
that this could be on 20 June 2002. RA circulated written
briefings from ACHEW on the amendments to the Patients Forum.
Transition Advisory Board update
Sally Carr reported
that the work of the TAB was ongoing and that a number of stakeholder
days were being organised to feedback on progress, She reported that her
key concern continued to be to ensure a proper and effective advocacy
function without the new arrangements.
Date of next meeting
AGM of the Patients
Forum - Thursday, 5th September
The next regular
meeting will be on Wednesday 13th November
________________________________________________________________________________
Appendix 1
Seriously surveying patients – Stephen
Bruster, Picker Institute Europe
“The
history of Picker is that Picker used to make X-Ray machines and you can
occasionally see them in dusty corridors of hospitals. This was in
America. About twenty years ago they sold out the business. Following
the sale of the business Mrs Picker became seriously ill and quite
shortly after that died. The experience of the family was that Mrs
Picker received terrible, inhumane treatment. Mr Picker decided to
invest some of the family wealth into looking into patient-centred care,
as they saw it, and started working with Harvard Medical School on new
ways of finding out what patients were actually experiencing.
This has been going for about fifteen years now. Picker has been
set up in the UK now for about four years.
In the UK, the main
part of our work is in doing surveys of patients.
In the US we have surveyed about 450,000 patients and in Europe
about 300,000. One of the big projects we have been involved with in
this country is the National Survey of NHS Patients. This is the biggest
survey that has even been carried out in the NHS. There has been a huge
general practice survey – 61,500 patients; heart disease, 81,500
patients; (that’s all
been published). Shortly to be published is a survey of cancer patients
– 61,500 patients.
Up until this year it
has been national surveys but this year the Department of Health has
required every single NHS Acute Trust in England to do their own survey
so it is now compulsory and this is now going to feed into this year’s
performance indicators. Every
trust, with the exception of a couple that have just been very slow,
have actually done a survey since Christmas and they have surveyed about
850 patients who were discharged late last year. Trusts have to do this
and they can choose to do it themselves if they want; there is some
guidance, or they can choose an approved provider, of which there are
eight – Picker is one of them.
There is quite a lot of
work going on out there at this moment.
We have done surveys in various areas: in-patients, out-patients,
heart disease, paediatrics, maternity, and primary care.
We have also done some staff surveys, nursing in particular, and
we are doing some more work in cancer, A & E and mental health.
We have done work at 193 trusts – a heart disease study – and
173 for the cancer survey and right now we are working with 78 trusts to
do the survey requested by the government, including Guys in London, St.
Mary’s, and various quite well known trusts.
In addition to surveys we do a lot of qualitative work as well
with focus groups and in depth face-to-face interviews and there is a
list of groups we have worked with in the UK.
I think the most
important thing, and it sounds simple but it is often overlooked, is to
ask patients about what is important to them.
What you quite often find is that surveys have been designed by
clinicians, managers, nurses, or researchers, without any reference to
patients at all. This is really fundamental to what we do and it is
common sense to be honest. In
all the work we have done in the USA and Europe, including the UK, we
have identified eight key dimensions of care of patients:
·
Access, getting into the system at a convenient time
·
Respect for privacy and dignity – patients say these things are
important
·
Co-ordination of care – having the care log co-ordinated,
seeing a pathway
through the system
·
Information – I think this is probably the most important thing
when you speak
to patients, there is a great thirst
for information and communication; the
information is there but they are just not getting it
·
Physical comfort – patients want to be comfortable, pain-free
in hospital or
the healthcare system, that’s often a problem
·
Emotional support from staff, most do, not everybody
·
Family and friends to be involved, most want this, not all
·
Transition and continuity discharge planning, they want their
discharge to be
planned; they are in hospital, lots of people fussing around,
then they leave and
what happens next
These eight dimensions
we find everywhere that we have done our survey work.
In the UK there is one more that we don’t find elsewhere and
that is the hospital environment. When
you speak to patients here there are big issues about mixed sex wards,
about cleanliness, having to move between wards three or four
times during a hospital stay, privacy, people being on large wards, etc. We don’t ask about these when we are doing work
elsewhere.”
Question about
qualitative and quantitative approach used.
Reply:
“Most of the time we used qualitative methods in developing
questionnaires. I think these give us a very good understanding of what
the issues are for a group of patients.
So for in patients we can understand, across the board, what are
the kinds of issues patients’ experience?
But from the qualitative work we’ve got no idea how common
these issues are amongst the whole population so we then use the
questionnaires to measure that in a much more scientific manner.
Occasionally we do specific qualitative work and that is on
occasions when we really want to understand a complex issue in much more
detail.
I have some examples
here from work we did in America and it tries to highlight why we
don’t, for example, ask doctors to say what is important to patients.
We asked patients what was important to them and we asked doctors
what they thought was important to patients and we did a ranking.
What was shown is that there is agreement on the fact that
doctors should be skilful, thorough, truthful, take the patients
seriously and build trust. As
you might expect, there was some disagreement.
For patients the sixth most important thing was that the risks
and benefits of their treatment was explained to them.
Doctors ranked that the eighth most important – there is a big
mismatch there.
Answering questions, something as simple as that.
Doctors ranked that as possibly the 40th most
important; for patients it was in the top ten. Similarly with explaining
medications and something as simple as the diagnosis making sense.
Patients would rate something much less important than doctors
thought they would, (this is for the USA it may be different here e.g.
that information is explained privately. In the USA there are few issues
about privacy as patients tend to have private wards.
That the doctor doesn’t embarrass the patient – this is less
important for patients; that staff are polite – doctors thought that
was important but patients less so.
At the heart of what we
do – this is different to what is done elsewhere – we don’t ask
about satisfaction. If you ask patients to rate their satisfaction you tend to
get very positive responses despite the fact that you know things
aren’t perfect. We ask
them “what happened?”
In our original survey we asked a general satisfaction question:
“Overall how do you rate your care – excellent, very good,
good, fair, poor?” We
asked that question in England, Canada and the USA, very different
healthcare systems, very different cultures.
The results were very similar in all three countries.
This kind of result does not provide enough specific information
in order to resolve problems.
The same patients who rated the standard of their care as 94%
excellent, very good or good when given a different set of questions
showed that 10% had their admission cancelled, 46% were unclear about
the daily routine in the hospital, 9% didn’t have enough privacy,
patients were in pain, weren’t told test results, had their operation
cancelled, didn’t have the risks and benefits of the operation
explained to them. You
wouldn’t even imagine these were the same patients.
When specific questions
were asked across different countries, there is quite a lot of catching
up needing to be done in the UK.
Questionnaires can be designed to give the result wanted. The
main lesson we have learnt is that you want to find out what is
happening to people you don’t ask satisfaction questions. The only purpose I have found in asking that sort of question
is that it boosts staff morale. It
gives me a way, if I am making a presentation to a hospital, of saying
“here’s a bit of good news.”
The question is, what does it mean?
What we know is that the response to that sort of question is
very largely affected by what people think of the NHS, possibly how they
are feeling today, the fact that they have a free service and the fact
that they got out OK – alive, feeling quite well.
We know it is affected by age; younger people are much more
critical on that sort of question than older people; its affected a bit
by gender. We are not sure
how reliable it is.
This is how we do
surveys. We have
self-completion surveys; they tend to be tick box although there is room
for people to write comments as well.
We send these out ideally 2 – 4 weeks after people have had the
experience so they are well enough but can still remember what happened.
We send two reminders and these get us from about 40% to 70-80%
response rate.
A question about how
the information Picker gathers is used.
Reply: “It varies
somewhat from Trust to Trust. I’ve
worked at Trusts where senior managers, CEs, Director level staff have
been involved in taking forward the results in a high profile way.
Results have gone into the local press, they have been
distributed to staff and they have set up working groups to deal with
specific problems, pain management, discharge planning, surgery etc.
This has made a difference, there is no doubt about it.
Other Trusts do this sort of thing because they think they should
and there are no real plans to take it forward.
In terms of the national surveys upon which millions of pounds
were spent, I don’t these made a single iota of difference because of
the methodological problems of the data.
With these surveys I think things may well start to change now
because this is going to be leading into the annual performance
indicators. If Trusts are
bad on the patient experience side of things that might take them to
being a zero star Trust and that will have a big impact and the CE will
be under fire, there is no question about it. For the first time, I
think, they are going to have to concentrate on these things.
Into the performance indicators will go pain management,
discharge planning, communication etc so I am hopeful that this is
really a big opportunity for patients to see improvement.
The Picker Institute
website is: www.pickereurope.orgtoe
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