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Minutes
of the Patients Forum AGM held on Thursday September 4, 2003 at Friends
House, Euston Road, London
Attendance: Jonathan Ellis – Chair (Help the Aged); Gerda Loosemore-Reppen (Sign); Paula Lloyd-Codner – Heart of Birmingham Teaching Primary Care Trust; Marianne Rigge (College of Health); Malcolm Alexander (ACHCEW); Bill Marks (City and Hackney CHC); Elizabeth Manero (London Health Link); Jayne Tumbelty (Contact a Family); Toto Gronlund (NHS Information Authority); Wendy Garlick (Consumers Association); Liza da Silva (Doctor Patient Partnership); Matt Townsend (The Disabilities Trust); Roger Battye (NAPP); Mike Took (Rethink); Eileen Neilson (Royal Pharmaceutical Society); Samantha Sharp (Alzheimer’s Society); Peter Bainbridge (The Stroke Association); Karen Thomson (Diabetes UK); Sally Gordon-Boyd (Royal Society of Medicine); Jackie Glatter (Consumers’ Association), Geraldine Amos (Home from Hospital Care). In attendance: Diana Basterfield (Patients Forum) Apologies:
Jane Belman (LVSC); Alison Morris (MND Association);
Julia Hookway (NPSA); Chris Jones (MS Trust); David Ellis (CLIC); Sally
Carr (CAIT); Roger Steel (Involve); Gerry Mahaffey (PRT); Barbara Anne
Walker –Self-Help Nottingham; Nikki
Joule (Neurological Alliance); David Pickersgill (BMA); Beverley
Lawrence Beech (AIMS); Jonathan Coe (POPAN); Rachel Childs (POPAN)’; Len
Tyler (RCPCH); Ruth Taylor (Haemophilia Society); Arlene Spiers (Ulster
Cancer Foundation); Carol Hemphill (Surrey Ambulance Service); Janice
& Bill Kent (reMEmber); Judith Wardle (Continence Foundation);
Sheila Dane (LMCA); Janis Hickey (British Thyroid Foundation); Fiona
Robertson (Hearing Concern); Bob Sang (CAIT); Roz Rosenblatz (Speakability);
Judy Walker (Help for Health Trust); Angeline Burke (National Midwifery
Council).
Minutes of the last Annual General meetingThe Minutes of the AGM held on 5th September 2002 were agreed. Matters arisingNone. Presentation
of the Annual Report
Jonathan Ellis reported: “Looking back over the Annual Report and thinking about what we have done over the last twelve months, it is incredible the number of areas of policy development and implementation where we have played a significant and instrumental part in developing, monitoring, commenting on, making sure that the patient voice, the consumer voice, is heard at the earliest possible stage throughout the process of policy development, delivery, refinement and implementation. I was at a seminar a couple of days ago that was an opportunity to look back over things that have happened in the last twelve months and to look forward to things that are coming up (perhaps in some case with some trepidation). It started me thinking on the kinds of things we’ve been looking at in the Patients Forum. We have had the NHS Reform and Healthcare Professions Act, the devolved powers to PCTs, the formal structures for patient and public involvement - this finally reached the statute book within the last twelve months. We’ve had the development of local authority scrutiny powers which we talking about very recently at a meeting, the opportunities and challenges to introduce this new local accountability within the health service. We’ve had, of course, ministerial changes – a whole new ministerial team, bar one, and at the same time massive reform refocusing and restructuring within the Department to mirror the devolution within the Health Service, which itself poses challenges. I think it also poses challenges to us as the Patients Forum operating at a national level. More recently we have the latest Health and Social Care Bill, which we were talking about earlier this morning, with Foundation Trusts, the new regulatory bodies, the changes to dentistry etc. Again, we have played a significant part, a key role in supporting, advising and commenting on the Bill through its development stages and as it progressed through its Commons stages. It is now waiting for its second reading in the Lords as we speak. We have covered a huge range of topics and, as ever, the quality of the debate and the discussion that we have had has been high and I think we continue to be valued by policy makers, civil servants, other health related organisations that have come, I think, to somewhat rely on us as providing this safe environment, this constructive platform to unpick some of the very complex areas of policy development and implementation that we have an interest in. It is essential that we fulfil our role in making sure that the patient voice is heard at the heart of that work. This year we have also had our seminar programme which, from my perspective, has been incredibly successful in providing even more space, even more thinking time for us to work with some of the key policy makers and policy developments to make sure that they are working as effectively for patients as they should be. I have been really pleased with how those have developed and again, the range of issues that we’ve been able to address. This has effectively meant that we have doubled our normal scrutiny of issues over the last twelve months and that is a very good thing. In relation to the Patients Forum itself, we have continued over the last year to welcome many new members from a range of different perspectives to our fold and you have a list of the new full Members and Associate Members who have joined us over the last year. I think that is testimony to the value that these organisations see in coming together with the Patients Forum to have that opportunity to think about and influence policy. In relation to the Associate Members, the way in which it has become much more mainstream over the last couple of years to find very simple and effective ways of working with patient groups, patient organisations and for the patient voice to become much more mainstream into policy and practice development. This year has also been a period of a lot of activity about securing the future of the Patients Forum. We have been very lucky in having the support of the Department of Health again, financially and a lot of work has been carried out by the Management Committee to identify new ways of securing funding for the long-term future of the Forum and work continues on that front. I am confident that because of the value and the strength that we have as a diverse group of patient organisations coming together to debate and discuss policy, that there is a very obvious role and a very attractive role that will help us to achieve that. At the same time we have been pursuing our application for registered charity status. It is disappointing – I had hoped that by now we would have been able to report on the outcome of that decision. But we are sadly still waiting for the decision of the Charity Commission. We will continue to keep you posted, of course, Looking forward, and AGM’s are always a good time to look forward as well, we are in for another busy twelve months inevitably as we move into what will probably be the final twelve months of large amounts of activity within Government in the run up to the next General Election. We will see the establishment of Foundations Trusts over the next twelve months; a reform of the commissioning arrangements; the implementation of payment by results; the new systems we were talking about earlier with Hilary around NHS complaints and medical negligence – also the subject of the next in our series of seminars; the Children’s NSF will be published; the modernisation of pharmaceutical services; the establishment of the Patient and Public Involvement Forums will be beginning in the next few months as well as the continuing questions and concerns around the development of Diagnostic and Treatment Centres; there will also be the new Consultants’ contract and the implementation of Agenda for Change. The list goes on and on. In relation to our role as the Patients Forum I think it has never been more important to make sure that the patient voice and the patient perspective is an integral part of all of this activity at all of these different levels. Whether it is at the high level of policy development and the big vision within Government and the Department o f Health, right down to the implementation and delivery of some of these very important and constructive developments in policy. Patient and public involvement as it rolls out over the next twelve months is almost certainly going to be one of the key issues that the Patients Forum will have an interest in and a desire to watch closely and to be involved in, either as the Forum itself or in supporting new members to play your part in taking that forward. Of course, recently, many of you will have picked up the very intensive discussions within the Department of Health and more broadly about the extension of patient choice within health and also, it seems within care services more generally. That, too, is an issue that we have looked at initially with the Department and have some thoughts in place to take that forward to make sure that the extension of choice is a genuine extension of genuine choice and not just lip service to meet what could be seen as political ends. I think it is important for us to recognise that the Patients Forum continues to play a very unique and vital role in all of this work. The strength of the Patients Forum is in you, the members. The Forum is here to serve you and we will continue to serve your needs and your interests as the year progresses. To wrap up on this item, as always thanks must go to Diana over the last twelve months for keeping us on the straight and narrow and holding the whole show on the road, not always an easy task. Thanks also must go to the members of the Management committee for their guidance and support in taking forward a lot of this very complex work, particularly securing the future of the Patients Forum, over the last twelve months. And of course, thanks to all of you, the Members and Associate Members of the Patients forum for making our debates, our discussions, our thought processes so valuable, so constructive and so important to the way that we operate and the way that policy is developed and implemented. We have had a very exciting year, we have had a very challenging year and it looks set to stay that way for the year to come. Thank you all. Presentation of the accountsThe
accounts were presented by Clara Mackay – in the absence of a
Treasurer - and agreed. Election
of Management Committee The
rules stipulate that one-third of the committee stands down – and are
eligible for re-election. The
Chair reported resignations from Imelda Redmond (Carers UK), Mike Rich
(Action on Pre-Eclampsia); Brian
McGinnis (L’Arche) and Gerda Loosemore Reppen (Sign). Imelda and Mike
would not not be seeking re-election,
The Chair formally recorded his thanks from this year’s the
Committee To Imelda and Mike for their hard work and their input over
the last twelve months.
Brian and Gerda would be happy to be nominated for re-election to
the Committee. There
were also expressions of interest from three members of the Patients
Forum who would be co-opted onto the Committee: Bill Marks (City and
Hackney CHC), Paula Lloyd-Codner (Heart of Birmingham Teaching PCT) and
Sally Gordon-Boyd (Royal Society of Medicine).
Two vacancies needed to be filled. The
result of the election of the Management Committee (and the subsequent
election of officers from within the Management Committee) was :
Chair:
Jonathan Ellis (Help
the Aged) Joint
Vice-Chairs:
Karen Thomson (Diabetes UK)
Elizabeth Manero (London
Health Link) Geraldine
Amos
(Home from Hospital Care) Paula
Lloyd Codner
(Heart of Birmingham Teaching PCT) Sally
Gordon-Boyd
(Royal Society of Medicine) The Chair thanked everyone for attending and closed the meeting. AppendixNHS complaints reformsSpeaker:
Hilary Scott, Department of Health Hilary Scott began by
thanking the Patients Forum for the opportunity to talk to a large
number of patient based organisations all at one time. She continued:
“My job title is Programme Manager – Complaints and Clinical
Negligence Reform at the Department of Health.
My job, which I began in January this year, is to manage a
programme of work to bring about reform to both the complaints and the
clinical negligence procedures in the National Health Service. Both of
these processes have been subject to lengthy consultation and
discussion. In March this year the
Department published “Making
Things Right” – its intention to reform the complaints procedure so
that it would be accessible, more responsive, and in lots of ways more
independent and more like a process of dealing with things that go wrong
in health care in the new millennium rather than the last. On the 30th
of June the Department published the recommendations of the Chief
Medical Officer, Sir Liam Donaldson,
“Making Amends.” That document is presently up for formal consultation that
will close on 17th October.
It deals with reforming the way in which claims can be made or
redress can be offered to people who are injured as a result of their
health care. I say this by way of
preamble because my appointment to run a programme of work about
complaints and clinical negligence wasn’t an accident.
The plan – the long-term view - is that we should be aiming for
a set of processes that start when something goes wrong and that stop
when it is put right again. At
the moment we have two completely separate streams, both initiated by
complainants, by patients. It
relies on somebody making a claim or making a complaint for redress to
flow. I hope in the
long-term we may stop talking about complaints and claims separately;
whether we start to talk about redress, which I find a rather lawyerly
word, I’m not sure, but actually thinking about it in a much more
complete way. At the moment we are
flip-flapping between talking about a single process and principles to
apply to both complainants and complaints and having to think about them
separately because, of course, we’re not there yet by any stretch of
the imagination. The new
complaint system, as I am sure you will know, is being debated in the
House of Lords and will go back to the Commons shortly. The new clinical negligence procedure is not exactly at
the starting blocks because there is “Making Amends “ but we are not
close to legislation yet. What I am hoping to do
this morning is to say a few words about the way in which we hope the
new systems that we are designing will indeed be accessible, responsive
from the outset, independent and a system for complaints and claims that
is not incidental to the business of Improving services and improving
safety but actually very much part of it.
Quite a different political shift, in my experience, on the part
of the Department. Amongst the reasons why
the Department has embarked on this programme of reform is because of
these figures. “Making Amends” was based on a number of consultations
but also on some research. This
research, which shows that people want explanations and an apology when
something goes wrong with their care; they want a proper and robust
enquiry into the causes that led to the harm happening in the first
place; they want support in dealing with the consequences; they want
financial compensation; they want disciplinary action or some form of
response to individuals who treat them poorly.
My guess is that most people want all of these things and
that’s what we are trying to do, to create a system where all these
possibilities are available in some form or another and demonstrably so. We are looking for
reforms that will improve accessibility at the beginning and we are
working with NHS organisations and with policy teams in the Department
to try and make sure that people’s access to the procedure is as it
should be. There are
three main thrusts to this:
Accessibility is very
important and so is support for complainants and for those who are
complained about as well. Being
complained about can, as you know, go to the heart of people, and making
sure organisations have the right systems in place – and it begins, I
have to say again, with induction and personal education – so that a
complaint is not taken personally as it is meant to be but taken on
well. This all means, in my
view, that organisations have the right approach to complaints. I think that some of you will have heard me mention a tale of
two trusts, one that won’t entertain a complaint from a man and his
wife whose son died in an accident department because their
daughter-in-law was so distraught by their son’s death that she does
not want to pursue a complaint.
They are not the next-of-kin the trust said – we cannot take a
complaint. This was wrong.
Why do people behave like that, it’s beyond me.
If something like that happened I would want it investigated
because I would want to find out what might have been different, what I
might make different for patients in the future.
By comparison with another trust who when approached instantly
said that on initial investigation they thought there might be a
problem, were getting independent advice that said there had been a
problem which, had it been discovered at the time, would have made no
difference to the outcome for the patient but would have made a big
difference to his family because he died unexpectedly.
They offered unreserved apologies and actually offered a sum of
money. What the woman told
me was that she asked for the money to go to a charity of her choice but
she said the fact that the trust responded so quickly and so positively
and had made it clear to her that it wasn’t her fault, that there had
been a problem actually restored her confidence in the service and in
the organisation. I don’t
think you can buy that sort of thing.
Restoring confidence in the service means that if she or her
family are unwell again they will, with confidence, present themselves
for treatment and a good thing too, rather than not. Accessibility is extremely important but we also want, once there has been a complaint, is a response from the outset. When something goes wrong, (whether or not it is a patient who mentions this in the first place, it may be a relative, it may be a carer, it may be a member of staff, it may be the woman in the next bed, as in “She’s be pressing her bell all night and nobody has come.” – that sort of thing) there is a process in the organisation for identifying what it is and assessing what to do about it. Something that goes wrong can be something quite simple to resolve or it may be something that may be a big thing and very serious indeed. The nature of the job, and I think some of you will know that I am a former Trust Chief Executive, is that when something goes wrong you look at it with a cold fish eye and think “is this something the ward can sort out or do I have to phone the police.” There’s a spectrum here and one needs to have a senior member of staff there at the outset being able to help people to assess what processes and procedures will be used. The response needs to be full and comprehensive and based on a proper investigation. The National Patient Safety Agency are doing sterling work, I think, in training people to investigate adverse incidents properly. We have also recently had validated an education programme for people who investigate complaints, which is being offered nationally. This helps people learn about collecting and testing evidence so that they can rely on the results of their investigation. It also helps people investigate complaints who may not be of very great seniority in an organisation. It helps them understand how they can go about influencing change in the organisation as a result of what they found out from that investigation. It is very important
too, and this is part of the CMO’s recommendations, and I think
happens already but needs to be more consistent, is that when people
suffer harm as a result of something going wrong with their healthcare,
that the first thing to do is to make sure that whatever can be done is
done to restore their health – if that’s possible – or to provide
care for them immediately and in the longer term.
I hope that part of the immediate responsiveness to things that
go wrong not only involves explanations and apologies, not only involves
care but if the recommendations the CMO has made are accepted and
implemented, then financial compensation could be available up to a
certain level where care has been seriously substandard and has caused
harm. This would be without
the need to go to Court. I think that would be quite a significant
difference and you can see that this does not rely completely on
patients saying “I have a complaint to make” or “Something has
gone wrong” actually it is part of a system and based on legislation. A quick word,
specifically, about the CMOs recommendations.
He is proposing an NHS redress scheme, something that means that
people will still, indeed, have to go to Court when the injury is
serious and the claim for recompense has to be at a high level but
again, relies on a rigorous investigation, a full explanation and a
remedial package so what is put together is an agreed and lifelong, if
necessary, do-able package of care for people to help them achieve the
best function they possibly can if they have been injured as a result of
their health care. There is
a separate component to the redress scheme for children injured at birth
and suffer cerebral palsy. This,
again, does not deny people the right to sue if that is what they want
to do and if that is appropriate but actually says that this is
initiated by the service from the outset rather than relying on what can
be extremely lengthy and very distressing proceedings for families and,
indeed, delays in securing the care that is needed by people and
children who are injured. If that level of
responsiveness is to be achieved, what do we have to do?
I’ve mentioned training and education for all staff but we are
presently drafting together the regulations for the new complaints
procedure that will include co-operation between NHS and indeed other
organisations to provide a single response to a complaint.
Very often patients are not very tidy and tend to roam around the
service and go to different bits of it and, heaven to Betsy, they have
social care needs as well! Sometimes when something goes wrong it involves the GP,
Out Patients, the specialist centre, the surgery etc, etc., and we seem
to expect patients to run up several poles at the same time and hope
that the flag of response will unfurl all at one time.
Well it rarely does. We
hope, and we intend to at least try to regulate a set of circumstances
where there will be a duty on an organisation’s senior complaint to
ensure that a unified response is made to a complainant on all aspects
of care. The regulations also
identify a complaints manager with seniority commensurate with the level
and responsibility that goes with the work and a Board level sponsor,
that is a non-executive director, who assumes responsibility on behalf
of the Board for making sure that complaints are managed well in the
organisation and action emerging is actually acted upon.
There will be a reporting requirement on organisations to make
sure that is the case. That includes Foundation Trusts. What it means
All accountability
exercised in full will, I hope, be processed and followed up by
Strategic Health Authorities in their performance management role. We
are in detailed discussions about the way in which effective handling of
complaints figures in a more intellectually robust way than it does at
the moment in things like star ratings where it is responding in two
days and then twenty days which actually gets you the points as opposed
to anything else. Independence
The Bill going through
the House presently places the second stage of the complaints procedure
not any longer with NHS organisations but with CHAI as an independent
organisation. CHAI
will be consulting on the process that they plan to use for receiving
complaints from people and, again, possible constraints on the
regulations may be to do with time limits and the suggestion that if a
complaint has not completed its course locally within six months, and
the complainant is not satisfied with the explanations given by the
organisations for not making progress, then they may go to CHAI
directly. That is yet to be completed but the general plan is that
people going to CHAI because they have not been satisfied with the
outcome of the complaint dealt with locally will be to have officers who
investigate thoroughly and present information to a panel of lay people,
organised and managed by CHAI, to help achieve a resolution, either at
national level or, hopefully, make a better fist of achieving resolution
at local level. When it comes to the
redress scheme, independence is important there too.
People have said to me that if the NHS is going to have a redress
scheme and money all comes from the same place, it is all part of the
NHS so where is the independence? A
very good point. Two or
three comments here. Firstly,
the right to go to Court will still always be there.
It would be a sad day for the successor to the NHSLA if every
offer they made was rejected and exceeded when it went to Court.
Secondly, we’ll be looking at the governance of the
organisation. The
NHSLA is a special health authority and there is a strong possibility
that it won’t be a health body at all but an independent body – and
we are asking lawyers about the pros and cons of doing all that this
very afternoon. People who
are discussing financial compensation, particularly when they have
suffered injury at the hands of the health service, will still be able
to seek legal advice, a significant portion of which will be funded by
the NHS. This is
quite separate and of their own choosing.
I think it is worth saying that I am very conscious of the very
significant efforts that convenors, lay chairs etc have gone to in many
parts of the country to press home the notion that they are trying to be
as objective as they can. They accept that it was always a but of a rum do anyway but
they also agree, and also my colleagues in the CHAI Transition Team
agree, that the fact of being an independent body does not necessarily
make for independence. What
they do will have to be the same as what they say.
I am going to have to work very hard to make sure that the
processes that CHAI uses will be felt to be operating in an independent
way when they get themselves started in the course of next year. The last thing I want
to say about the framework for the reforms, and the thing I am most
seized by, is that if we can get the front end right, that is,
satisfactory for patients, then the other prize is making what we find
out about services because of what we have investigated count for
service improvement. I have
certainly written into the instructions something about a regulation
which requires Boards to make the necessary link between its complaints
sponsor and its clinical governance lead so that what happens at the end
of investigating a complaint ends up with the clinical governance set up
too. Obviously,
working with vigour with the National Patients Safety Agency and the
instant reporting system also, just flagging up the possibility of there
being a Duty of Candour placed on NHS organisations – it is already
there for professionals – that says when something goes wrong and the
patient doesn’t know, then the first person you tell is the patient.
So there is a duty not just of disclosure but actually of being
straightforward from the outset and trying to find ways of making that
work well. I have in here a note
about reporting to Overview and Scrutiny Committees simply because I
know OSCs will be interested in how organisations handle complaints.
There is some nervousness that OSCs will get themselves involved
in the detail of individual complaints but I think, actually, that worry
is beginning to recede somewhat.
But it has to be right that organisations tell the people they
are accountable in all sorts of different ways what they do as a result
of what they find out when things go wrong and that has got to be right.
I am hoping that this business about exchanging information about
what goes wrong locally, inside the organisation, on a wider basis in
the health economy (pesky patients move around) having a sense of the
whole service available to people rather than the little bit you are
involved in is important. Timetable
Since April we have
been working with all sorts of people on the detail of how to make the
complaints procedure work. We
have been listening very hard to things like time limits, not only a
limit on time for making a complaint but also on getting a response.
We have been working hard on things like the completeness of
responses, the co-ordination between organisations to do with responses,
the sort of things that people said really needed fixing locally.
As it says, I hope draft regulations will see light in the next
month or so and be properly consulted upon because not only does this
affect the health service but – and there is a read across to our
social care colleagues – making sure that as far as possible the
health and social care complaints processes, for now, run alongside each
other with the ultimate aim of having unified process.
The Health and Social Care Bill is due to complete its course in
April 2004. I am not able to put my hand on my heart and say
that everything will start off the blocks on that date. Certainly with the passage the Bill has had, most of the
discussion has been on foundation trusts and that has slowed down its
progress. We are not
entirely certain about the timetable but I hope to be ready by then. On the clinical
negligence front, we are in the process of formal consultation at the
moment. I’ve got a multi
strand programme of consultations, research and pilot work to do between
now and, probably January/February time. The plan is that we should have a full policy statement
towards the spring of next year that would allow us to consider
legislation for the following year. We want the complaints
and the claims procedure to satisfy patients who are concerned to talk
about their care, have a complaint to make about their care, have been
harmed by their care, that NHS organisations take seriously the issues
that arise when something goes wrong and will respond to them well.
We know that a lot of people want to be sure that what happens to
them doesn’t happen to anyone else.
I think that the best chance of doing that is if performance and
learning get linked through clinical governance arrangements in NHS
organisations and that patients and carers and managers are there at the
clinical governance table. More
than that, when a complaints manager (and let us say, for example the
person running the R & D
programme) recognise that they are in the same business and that is
about improving services. R
&ID has a very long stretch to it and responding well to a complaint
is a much shorter stretch. Actually
it is the same responsibility. I
think also that an example has to be set and I want to be working with
all these sorts of organisations setting an example.
In effect saying actually we are all in the same business and it
is improving health services and public services in general and if we
don’t work together we are going to be in some serious difficulty. Finally, there are a number of people around the table with whom I have either spoken or corresponded. I hope you will see your footprints on the draft instructions when they come out because I have been extremely grateful for the focused and specific recommendations that you have made based on your experience with people who use the service. People have come to me at short notice, they have provided material, they have done all sorts of things that the Department of Health does not seem able to organise in a measured way and thank you so much. I hope you will see the fruits of that effort in the next couple of months.”
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| Last updated 7/10/2004 | © The Patients Forum 2004 |