Examination of Witnesses (Questions 180
- 199)
THURSDAY 6 MAY 2004
DR KERI
THOMAS, MS
CORINNE LOWE,
MRS ROWENA
DEAN AND
MS SUZY
CROFT
Q180 John Austin: You mentioned some
conditions, but could I mention kidneys and renal failure. Certainly
in evidence we received earlier it suggested that people in the
final stages of renal failure are rarely offered a good palliative
care service and if they were offered that service some of them
might exercise different choices and might decide not to go on
dialysis or to come off dialysis; that in fact the failure to
provide palliative care restricts their choice.
Dr Thomas: I think this applies
also in heart failure patients, for example, in what we have described
as the trajectory of illness, never being quite sure when it is
going to be the last admission, bouncing into hospital again,
you never know when that last stage is. So resourcing someone
early on helps them to cope with end of life issues, maximising
the rest of what life they have and discussing it openly, because
every time it arises or admission to hospital happens it is a
shock and you have the last admission which leads to death and
no one is quite prepared for it. So there are very strong differences
because the cancer trajectory is much more predictable, even though
it varies, but you know when someone is declining and you can
roughly predict. So there are great differences and palliative
care is more challenging for non-cancer patients. But it should
not be that a COPD or a heart failure or renal failure patient
dies badly, or dies unprepared, or has not had a period of time
to come to terms with dying before that. We do not realise it
but I think in this country we are more cancer focused than may
be intended.
Mrs Dean: I just wanted to say
that amongst the membership of my Forum we have all noticed the
numbers of non-cancer diagnosis increasing, and I am sure you
have had evidence from the national bodies to that. I also think
that the other area around integration, which is what I always
come back to, because I believe this is the cornerstone of what
we should be aiming at, is the children's services—there
is even less integration there, I think. We have a Children's
Hospice at Home Service as well and I have noticed in recent years
that there is far less integration there with services working
together. I think there needs to be some sort of impetus there,
if we are talking about borderlines between services. Certainly
our non-cancer diagnosis is increasing at around about 12 to 14%
at the moment, and that is quite common.
Ms Lowe: Up until recently the
Marie Curie Service would only provide night cover for cancer
patients, and it is just not good enough. The carers need relief,
even if it is just two nights a week so that they can go off into
another bedroom or sleep with relatives, or something, to have
a decent night's sleep, because they do not sleep obviously if
there is somebody poorly like that in the house.
Q181 John Austin: It is quite clear,
when we look at specialities other than cancer, that the needs
in some sense may be different. There are long-term disabling
illnesses, whereas hospices have concentrated on caring for people
who have a very short period of time, giving very intensive palliative
care. The hospices have in this country developed an expertise
in palliative care which is perhaps second to none in the world.
How do we actually tap that expertise which is within the hospice
movement and spread that through the community and other areas?
It is not an either/or, is it? There is a resource there and a
skill base.
Dr Thomas: Yes, Integration is
beginning to happen. I work with the Coronary Heart Disease Collaborative
and they have just appointed two national clinical leads for palliative
supportive care, and they are working with the heart failure nurses.
They are giving what you might call a curative care. It is not
really curative care but it is clinical care, specialised symptomatic
relief from cardiological problems, which is quite difficult.
They are working very well with the clinical nurse specialists
around the country and increasing it to give the other aspects
of palliative and supportive care. So I think that just because
it is a slightly different matrix of issues, people will need
good dietetics and good medication and good treatment all the
way along, but they also need the benefit of palliative care.
The resistance does not usually come from the specialist; it is
just sometimes a matter of resources and willingness to integrate.
So there are some really good examples around the country, Bradford
and Birmingham and other areas, where there are lots of good things
already happening. We need to highlight them and spread them out
further.
Mrs Dean: We need to do some sort
of national needs analysis, I think; we still need to do more
work in gap analysis in the meantime. A lot of good work has been
done but this needs to be a national project to take this forward.
Q182 Chairman: Can I just ask Ms
Croft, to go back to John's opening questions about the boundaries
between health and social care, from your Association's knowledge
of the difficulties with the boundaries, do you have any evidence
where you can point to the cost shifting as a consequence? You
mentioned that local authorities may not be prepared to put in
a package of care for somebody who is in a health centre or a
hospice. Do you have evidence that you can provide the Committee
of the cost implications of that for the health centre as opposed
to the social care centre? Obviously it is anecdotal.
Ms Croft: Generally, I think there
are some services where the NHS or health services are beginning
to look at appointing, for example, social workers. Traditionally
I think quite a lot of teams that might have been NHS teams would
not necessarily have, for example, a specialist palliative care
social worker unless they could persuade the local authority to
fund such a post. I can say anecdotally that I started off my
career as a specialist palliative care social worker, working
within an NHS specialist palliative care team funded by one of
the London boroughs, but eventually that post was cut and not
reinstated as part of the cuts within social services. I think
that some NHS teams are now employing social workers again to
direct the work with the teams, so in a sense integrate the work
of the social worker, for example. I think in that sense that
a lot of hospices are directly employing social workers. At the
hospice where I work I am directly employed by the hospice. Therefore,
social services, the local authority, are not putting in any funding,
and I think that would be the case with quite a lot of services,
quite a lot of hospices, quite a lot of specialist palliative
care teams. I am not really sure what, in terms of costs, the
implications would be. I think there is always an incredibly good
argument to say that where you have health and social services
integrated and where you have social workers working with families,
that it can only be cost effective because I think the support
that people receive means that they perhaps do not have to fall
back on other services later on. I was involved in a research
project called the Involve Project, supported by the Centre for
Citizen Participation at Brunel University and the Joseph Rowntree
Foundation, and one of the issues that became absolutely clear
there was that service users of specialist palliative care social
work valued having contact with social workers if possible right
at the point of diagnosis. It seemed that they valued actually
having someone who was alongside them right from the point of
diagnosis sometimes to death and beyond to bereavement. It was
clear that social workers were providing a range of services to
patients and facilities which included benefit advice, help with
housing, support for children, etc. I think that that could only
be cost effective in the sense of actually supporting families
so that maybe they are able to support a terminally ill person
for longer, right up until death in the home, accessing appropriate
benefits, et cetera, avoiding hospital admission and so on. I
do not think that I would have the cost at my fingertips, but
I think that that is probably an absolutely crucial issue. I do
not know how relevant this is to raise but I do know anecdotally
that the Delayed Discharges Bill, as I mentioned in my evidence,
has meant that because local authorities are penalised if they
do not make sure that people are discharged from hospital, that
they have actually cut other services.
Q183 Chairman: We understand your
evidence on that. We are interested in your discussion of the
trend of social workers being employed by the hospices. Some of
us remember when they were taken out prior to 1974.
Ms Croft: Yes.
Q184 Dr Taylor: You are taking us
down really a much wider path than I think probably some of us
expected and we have to get some definite recommendations out
of this. In the CDNA evidence you have, "People in the community
dying from non-malignant diseases can receive to some extent a
secondary service." They are not eligible for many of the
services and palliative care patients should have equality, the
disease is irrelevant. This is very much the way we are gong,
we are getting the message that palliative care for cancer, although
it is by no means perfect, is well developed and the other things
are not. I think you said 68% of the caseload is chronic illness.
Ms Lowe: My caseload, yes.
Q185 Dr Taylor: Marie Curie only
just beginning to cope with non-cancer patients. What about Macmillan
nurses, are they widespread, do they do everything?
Dr Thomas: If it is under 10%,
there is no national policy. It is a cancer-based charity so it
has to be the majority cancer focused still, but many do spill
over to some other areas.
Q186 Dr Taylor: What recommendation
should we be putting in to raise awareness of this tremendous
unmet need? I think you said that we need a needs analysis. Your
68% and 20% is the start of that. Could you expand on the needs
and how we make recommendations?
Mrs Dean: There is definitely
evidence out there of all the services facing this increase in
demand, so if you can build on that and do some sort of national
needs analysis on non-cancer diagnosis requiring palliative care,
this has to be a strong recommendation.
Q187 Dr Taylor: Needs analysis on
non-cancer patients.
Ms Lowe: Chronic illness.
Dr Thomas: Quite a lot of work
has been done already and we have references in books on it and
on the disparity and the need for it. I suppose what we need is
evidence in respect of solutions as well, what is beginning to
work and how do we start it, because we can measure the problem
repeatedly but we also need to look at possible effective solutions.
Q188 Dr Taylor: That would be the
next question: what are the answers?
Dr Thomas: There are some answers.
There is The Gold Standard Framework; there is also a movement
called Continuous Quality Improvement and there is a Body within
the NHS called Pursuing Perfection, part of the Modernisation
Agency, where they are looking at specific problems in a local
area, and picking up and developing some answers. I think what
we have done really is to examine the problems to some extent
and not always had the ability to develop the solutions. So looking
at some of the comparisons—especially with the Institute
of Healthcare Improvement in America—where they have a collaborative
initiative end of life care; in Sweden they have a collaborative
or a movement which develops improvements in end of life care;
we need individual teams to come along to say, "We need to
do this in our area, we need to look at heart failure patients,"
or whatever, "and this is how we are going to do that."
There are some really good examples of that. My view would be
that one of the recommendations should be that we should start
drawing these together in an end of life alliance and a working
party that looks at this. Not just a talking shop but something
that is constructively going to say how do we share examples of
good practice, how do we motivate people and help them to find
their own solutions and sharing good practice.
Q189 Dr Taylor: You have just mentioned
some organisations. I bet we have never heard of Pursuing Perfection?
Dr Thomas: Yes.
Q190 Dr Taylor: What is it ?
Dr Thomas: An American group that
uses a certain methodology of looking at a particular issue, and
they have picked up the issue of end of life care at the moment.
Some of the Three Star Trust, about five communities, are looking
at how to improve end of life care. What I am trying to give you,
Chairman, is an example of its local changes for development and
they use a methodology that they call Pursuing Perfection—which
is one workstream within the NHS Modernisation Agency—related
to the improvement methods used by the NHS and the US.
Q191 Dr Taylor: I do like the emphasis
on generalists because there are never going to be enough specialists.
Can we explore the bias against the non-cancer conditions? Is
it just because death is so much longer and a lingering process
and therefore much more expensive? What are your thoughts on that?
Ms Croft: I think generally some
hospices have been quite afraid of that because of this issue
of resources. Perhaps a fear that if you have someone, say, with
end stage heart disease coming into the hospice that because the
lack of services out in the community, and the family might be
quite desperate, that you will end up having the patient for much,
much longer, whereas someone with cancer may perhaps come in and
die quite quickly, or may come in and then go home again and then
come in and go home again. I think that has been a fear and, as
we said earlier, I think hospices and specialist palliative care
teams are beginning to deal with these issues and recognise that
they have skills that are transferable and people can come in
for short periods of time that we have things to offer and we
can perhaps see people for short periods of time, discharge them
and then they can be re-referred back to the team, the hospice
or whatever. I think there has been that fear, and I think it
is partly a genuine fear because we do have people, as I said,
in the hospice where I work, with other end stage disease and
sometimes it is very difficult. They come in just for respite,
they stay for longer than their planned period of respite because
there are not necessarily the services in the community and it
is quite hard to get them home. Those caring for people ill with
non-cancer conditions may often be at breaking point and know
that the patient may often not be receiving social work support
within the community.
Q192 Dr Taylor: If there was adequate
palliative care for some of these people with long-term neurological
conditions then the desires for accelerated assisted death would
even fade away.
Ms Lowe: We have a service in
the community already, although it be very sparse, able to cope
with this major problem. We are already doing it, as you see by
the percentage on my caseload, and I am just one of thousands
of district nurses. We have the expertise in the community, we
work well with the specialist nurses, we work well with our local
hospices. What we do not know we know is a phone call away, basically.
If we had 24-hour community nursing care that would really break
the back of it, in my opinion, and I am sure my colleagues would
agree.
Q193 Dr Taylor: Thank you, you have
given us quite a lot to think about.
Mrs Dean: I think it is quite
well illustrated in the Children's Hospice at Home Services, where
you do not get the number of cases of cancer that you do in the
adult teams, where the children have life limiting illnesses.
We are facing non-cancer diagnoses and managing them quite well.
I daresay there is an illustration there demonstrating that it
can be done. I also agree that the night care is absolutely essential.
Ms Lowe: Savings, fundings. We
have just joined forces with social services regarding equipment.
We now have joint equipment stores. We will now have 24-hour access
to this joint equipment store. We are being trained as nurses
measuring, for example, walking frames, things like this, but
we can actually acquire pressure relieving equipment for our patients
who are suddenly discharged from hospital with no package of care
set up and no equipment available. Because it is now joined into
one store in each town it has saved resources because they were
all scattered about at that point. So what they have done is actually
invested the money they have saved into the equipment.
Q194 Dr Naysmith: Following up some
of the things that Richard has just been raising about quality
of care and standards, we have had a number of written submissions
suggesting that palliative care for cancer patients, particularly
in rest homes and nursing homes, is often unsatisfactory. Is that
something that you would endorse?
Ms Lowe: Yes.
Q195 Dr Naysmith: If it is true,
what can we do to help staff in nursing homes to reach a higher
standard? What can we do about it?
Dr Thomas: There are a number
of initiatives going on. I am involved in one myself, the use
of the local care pathway for the dying in care homes and I run
the Gold Standards Framework, which is a framework to improve
generalist care in the community, including care homes. I think
so far people have said educate, but it isn't all about education
because staff change and it is not all about throwing facts at
people. People actually want to have a systematic way of organising
things. So we are trying to develop a different way of organising
care within a few care homes. One of the key things is advanced
care planning. There are some good examples in America where they
wanted to increase the number of patients with advanced care planning
so that any patient entering into hospital without an advanced
care plan was a medical error, and they got to that level of 95%.
Just as to what you said about the position of assisted suicide,
in areas like Oregon where they can offer euthanasia, assisted
suicide, there is an imperative to give good palliative care because
otherwise they have no incentive. So we can use these imperatives
to crystallise, but we must be able to offer good care to everyone.
Q196 Dr Naysmith: I know it is difficult,
but how widespread would you think in this country advance care
planning is, in nuts and bolts?
Dr Thomas: Very low.
Q197 Dr Naysmith: Hardly at all?
Dr Thomas: Just beginning, and
it is for many different reasons: because care homes are very
variable, they are privately run, they are a different body. I
am working with the agencies trying to develop some work on care
homes and many people are very concerned about this because as
many people die in care homes as in a hospice. Although they are
doing their best—I think they are doing their best—they
are not well trained, they do not have the systems, they do have
not have access to specialist care, they do not always have access
to district nurses, they do not always have access to equipment.
So in fact perhaps they may be worse off than patients in the
community.
Q198 Dr Naysmith: Presumably if we
had this 24-hour nursing care then they would be able to go in
and out?
Dr Thomas: It does not always
follow in a nursing home.
Q199 Dr Naysmith: It does not always
follow, no, it is presumably something that we could recommend
should happen. Do you all agree?
Ms Lowe: We are going more and
more into nursing homes now. Years ago we did not have to go in
because the nurses that were trained and qualified were putting
forward an excellent standard, but we are finding more and more
of the technical things that we have to do now in the community.
The staff are not trained and they are not being sent on training
either.
Mrs Dean: Many hospices are doing
a lot of work offering training opportunities for our local care
homes and we hold joint education sessions so they can come to
our lunchtime education sessions. So the hospices are doing a
lot of work with the care homes to improve the situation.
Ms Croft: As Rowena said, a lot
of work has been done and we work with nursing homes, and patients
in nursing homes may come to the day centre and we will have our
clinical nurse specialist working in the community and so on,
but I think it is terribly important not to underestimate the
levels of the problems. For example, in the town where my uncle
lives, he had an elderly friend who was discovered to be slowly
starving to death in a nursing home because all the staff in the
nursing home spoke a language other than English and he could
not actually communicate with any of his carers. I do not think
those kind of nursing homes, sadly, are as unusual as they should
be, and I think we have to be aware of the level of the problems
there are.
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