Examination of Witnesses (Questions 30
- 39)
THURSDAY 25 MARCH 2004
PROFESSOR MIKE
RICHARDS, PROFESSOR
STUART TANNER,
MRS JANE
SCOTT AND
MS SUE
HAWKETT
Q20 Mr Jones: How do these outcomes
reflect the wishes of the patients themselves? Where do they want
to go?
Professor Richards: That is a
very individual matter, obviously, and in some cases, if they
have established a very good relationship with the staff in a
hospital, that may be the place where they choose to stay because
that maybe is where they feel most comfortable, but that will
vary. Equally, I think some can be managed then in care homes,
provided that the care home staff have had adequate training in
this area, and that is something that we know needs more work
and that is part of what this End of Life Care initiative is about.
Q21 Mr Jones: Obviously, it is an
individual choice, but my question is, on balance, or generally,
are these individual choices, whether to hospitals, hospices or
care homes, being met, or are the patients going to where the
system finds it most convenient to put them, irrespective of what
their choices are?
Professor Richards: As I have
said, I cannot quantify it for you, but I am quite sure that there
are some people who are not being cared for where they would choose
to be cared for and who could be if we could skill up the staff
in those other areas to be able to look after them.
Q22 Mr Jones: Do you think it would
be desirable to be able to quantify this, that it would be a reasonable
measure of satisfaction and outcome if we were asking people what
they wanted and making a note of it, even if we could not provide
it?
Professor Richards: One of the
things that we are working on is a tool which measures people's
preferred place of care, and there is quite a lot of work being
done on this, for example, in Lancashire and Cumbria and by others
as well. That is a tool which helps clinicians to discuss with
patients what they would most like, in terms of their care over
their final weeks and months. Equally, this is something which
is a central part of the Evercare programme which is going on
in the community, where they are training up advanced practice
nurses. One of the elements of training is about advance care
planning and enabling the nurses to seek the views of patients
in a way which is sensitive to the patients' needs and so that
we can get those answers. I think we will be much better placed,
when we have got that tool to help us, to measure where people
really want to spend their time.
Q23 Mr Jones: The next question I
am meant to ask you is how the relatives feel about this, but
obviously you do not know how the patients feel about this so
presumably you do not know how the relatives feel about it either?
Professor Richards: Certainly
I cannot quantify it. I know that a lot of patients, and I think
the surveys which have been done show that there are a lot of
people who would like to be able to die at home if they could
be supported adequately, and that is why we are working hard to
provide that support.
Q24 John Austin: Can I go back to
something you said earlier about district nurses and the problems
there, because one of your professor colleagues from Sheffield,
in written evidence, said GPs rarely provide the early reference
to palliative care that is beneficial to patients. The District
Nursing Association, in their evidence to us, pointed out that
most district nurses are trained or have some degree of training
in palliative care but that GPs generally do not. Do you think
it would be advisable if GPs generally did have training in palliative
care?
Professor Richards: I think it
would be beneficial for all health and social care staff to have
better training in palliative care. In terms of district nurses,
of course, there has been a major change in the number who have
had training in this area over the past three years, as part of
the training programmes which are just coming to fruition now,
which were part of the Cancer Plan, and we had a £6 million
investment in that area, and we know that those have proved to
be very effective. In terms of GPs, yes, again, I think it needs
to be part of their continuing professional development. The number
of patients which GPs look after currently who are dying at home
is really very small, in any one year. GPs do see this as an important
part of their work and there is research evidence to indicate
that, but obviously it is only one small part of all that a GP
does.
Q25 John Austin: Very often they
would be the key gatekeeper to early reference to palliative care,
would they?
Professor Richards: I think even
that is changing. As we move into a situation where more people
undergo proper assessment, and that assessment can be started
by nursing staff or social care staff, yes, there is a medical
aspect to that assessment but it does not then have to be the
GP necessarily who is the gatekeeper, in terms of referral to
specialist palliative care. Certainly for cancer patients, of
course a lot of the referrals come from the hospital specialist
team, where often it is the cancer team in the hospital which
will engage the hospital specialist palliative care team and the
specialist palliative care team in a hospital will engage the
community teams or the hospices.
Q26 Mr Burstow: I want to come back
to one of the issues which Professor Tanner mentioned earlier
on as one of the challenges, about commissioning, because I think
it links up with what we have just been discussing. I wonder,
Professor, if you might be able to amplify and say in what way
you see commissioning as a challenge? For example, is it an area
where really there would be more merit in joint commissioning
between health and social care services, particularly in respect
of the End of Life initiatives we have just been hearing about?
Are there any particular initiatives currently in the pipeline
or being rolled out which would have an impact upon commissioning
intentions, within both the NHS and social services departments,
around the development of palliative services?
Professor Tanner: I think that
the commissioning arrangements have the same intrinsic problems
as other tertiary paediatric specialties, but the numbers of cases
in any PCT are very small and so arrangements such as joint commissioning,
for example by NORCOM in Derbyshire, work very well. The links
between health, social services and education and other agencies
are very much at the core of the Green Paper "Every Child
Matters" and I would anticipate that, as the children's
Pathfinder sites are evaluated, and there are approximately 35
of those, we would look to see how that is working in practice.
Q27 Mr Burstow: Just on that point
about the Pathfinders, we know all of them are covering a whole
range of health and social care, and some of them are very specific,
do you think there will be sufficient learning coming out of those
two to draw any conclusions around this area?
Professor Tanner: It may not achieve
statistical significance, but I think some of their work models
will be valuable.
Q28 Mr Burstow: Can I move on to
the adult services. I think it will be useful to hear from the
commissioning point of view?
Professor Richards: I think there
are several elements to commissioning. The first key set is assessing
the needs of the population, then you need to plan the services,
then you need to do the detailed contracting for services. The
needs assessment, I think we have moved on considerably there,
again, in many ways, thanks to work which has been done by the
National Council for Hospices in developing a needs assessment
tool, and we are working at the level of the network. Typically,
a network covers a population of around one to two million people.
That may have five or six Primary Care Trusts, a number of hospitals,
maybe five or six hospices in that patch, and we are getting them
to work together. We have been working closely on this with the
National Council for Hospices to skill up those networks in looking
at the needs of their populations and planning services, and this
was one of the things which came about through the £50 million
which was allocated. Because people had to apply for that funding,
it did get them together to think about their commissioning in
a much more progressive way.
Q29 Mr Burstow: The network you have
just described did not mention social care at all. How are they
being built into those networks?
Professor Richards: I think that
is a weakness at the moment that we need to build on, I will acknowledge
that. There is the freedom at the local level to pool budgets
between health and social care and we know that is happening in
some places. I am told that there are 255 different projects on
that which have been reported to the Department of Health, with
the pooled budget, amounting in total to £2.5 billion. In
the cancer world from which I have come, I do not think we have
done enough to engage with social care at the moment and I think
our networks really do need to extend to incorporate social care,
particularly when it comes to palliative care.
Q30 Dr Naysmith: Talking about the
commissioning process, how are you going to ensure that funding
is distributed on the basis of need and not simply just geographically,
on the basis of a head count?
Professor Richards: The lesson
of the needs assessment planning tool is that it takes into account
not just the population size but also, for example, in relation
to cancer, the number of cancer deaths that are occurring, the
age and the structure of the population. It takes a number of
different factors into account, it is not simply based just on
population.
Q31 Dr Naysmith: Surely, provision,
if it is based on voluntary provision, is going to be much more
available in affluent areas than it is in less affluent areas.
Is that a factor you are prepared to take account of in deciding
where the extra money is going to go?
Professor Richards: Historically,
I think that has been the case. That is where hospices have tended
to be established. This new model of working within networks is
about saying, "Let's assess the needs of the whole population,
for hospice care, for home care, for care in hospitals, for care
in care homes, all of those aspects, so that we can plan for the
population as a whole."
Q32 Dr Naysmith: It is going to depend
on how big the networks are and whether they are comprehensive
enough, is that right? If they are too big the same thing will
happen in lots of areas.
Professor Richards: I think you
are right. At the moment we have 34 networks covering the country
and, as I said, serving populations of one to two million. Those
are valuable for a lot of purposes in planning across the whole
sector. For example, that network is likely to have one major
cancer centre in it, but there are other issues which need more
locally-based planning, and that is happening as well where the
PCTs and the local hospice particularly in the locality are looking
at what they need in that specific locality.
Q33 Mr Bradley: Just picking up on
the children's services side of the cancer network, as you say,
smaller numbers can often cover a much wider area outside of one
particular network. Are the mechanisms in place to ensure there
is co-ordination of services to a children's hospice from that
much wider population base that would feed into it, because one
of the problems seems to be the certainty of funding from that
wider population base that they are looking at and currently serve?
Professor Tanner: I think that,in
children's cancer, there has been a very pleasing growth of paediatric
oncology outreach nurses, some funded, of course, by Macmillan
and Marie Curie, others funded from the NHS, they have led the
way I think. I note in her submission Janet Vickers draws attention
to the discrepancy between the service for cancer and the service
for some other conditions. They would provide the bridge to the
hospital as well. I do not know whether my colleague would like
to say anything more about that aspect of care.
Mrs Scott: I think one of the
issues, you are quite right, is that obviously a children's hospice
covers potentially a much wider area, and in fact often they are
not attracting so many clients from the local catchment, they
may be from much further away. The very, very key thing is for
the PCTs to work in consortia, and obviously, with the advent
of Children's Trusts, where there will be a pooling of budgets,
again, for them to work in consortia, so we are looking at wider
areas, assessing the need and looking at the potential volumes.
As Professor Tanner was saying, these children, we know about
them for quite a long time in advance, they could be diagnosed
at birth but not die until their teens, so by looking at the numbers
we can begin to evolve such a strategy in our planning and our
use. It has to be said, it is an issue, and PCTs and the new Children's
Trusts do need to work through how they work together more efficiently
to plan and deliver those services.
Q34 Mr Bradley: What mechanisms are
you putting in place to try to achieve that, because relating
it to this Trust, again, those are small areas and PCTs may work
in an even bigger strategic health authority? I have got a children's
hospice in my area which covers the whole of the North West. Are
the mechanisms in place to work together collectively and across
that much broader area?
Mrs Scott: I think the mechanisms
are developing, and obviously PCTs are quite new organisations,
a lot of them, and they have had a steep learning curve in commissioning
generally. What we hope to do, through the Green Paper and the
National Service Framework, is promote this sort of consortia
coming together in particular areas, and so I hope those two documents
will be able to be drawn on by PCTs and the new Children's Trusts.
I think the key is around needs assessment and working with your
neighbouring PCT and tertiary centres and local hospitals. Also
very, very key, and I cannot stress it enough, is the local authority,
because often these children are disabled and known to social
services and education as children with special needs, maybe before
they are seen as children with palliative care needs. Again, it
is that planning and that working together which I think is essential.
Q35 Mr Burstow: In the memorandum
which you submitted you acknowledge that probably the greatest
inequity which exists at the moment, in respect of palliative
care, is its very considerable focus around cancer, really to
the exclusion of other life-threatening conditions. What plans
do you have around addressing that imbalance? Taking that on a
stage further to those conditions which are not life-threatening
but are lifelong or degenerative, what plans are there to expand
the concept of palliative care perhaps to include them? In that
respect, does the NSF for long-term medical conditions address
palliative care, or is that being considered actively in that
process? If all of these unmet needs are to be met, what assessment
have you made of the resource implications of doing so?
Professor Richards: If I start
off on that one and then maybe, on the lifelong and degenerative
cases, my colleagues will take it on from there. I think, cancer
versus non-cancer, we do know that people dying of heart failure,
chronic lung disease and other conditions have a multitude of
different symptoms, which actually are broadly quite similar to
those experienced by cancer patients. Certainly we believe they
are not always met and the research evidence supports that. I
think one of the key differences though is the trajectories that
these patients have. In very simplistic terms, usually cancer
patients are relatively well for quite a long time and the time
when they need special care is relatively short. For other patients
it may be a slower decline with dips and rises in-between and
so the services they may need may not be identical to those for
cancer, but that they need care I think there is no doubt at all.
I think there are a number of ways in which we can improve the
care. The first is, I say it again, working alongside the generalists
and skilling them up and making sure that, whether that is GPs,
care of the elderly staff, a whole range of different groups,
chest physicians, cardiologists, etc., they have all got the skills
they need. Part of that may be encouraging specialists in palliative
care to work alongside those people, perhaps in the hospital setting.
I think also the specialists in palliative care in the past have
dealt mainly with cancer and a narrow range of other conditions,
some neurological diseases, HIV/AIDS, etc., but actually they
may not have the skills when it comes to heart failure, lung disease,
etc. We may need to get more of those specialists in palliative
care working alongside each other so that they can jointly skill
each other. Specialists in palliative care can learn about heart
failure management and vice versa and the cardiologists, for example,
can learn about palliative care. I think that is one model we
ought to be doing more of, and, equally, I think the second one
is making sure that the totality of health and social care staff
are better skilled.
Q36 Mr Burstow: Then on the long-term
conditions?
Professor Tanner: Can I comment
about particular ones, first of all, and can I come back to cystic
fibrosis, which now, as I say, is a real challenge for the adult
cystic fibrosis team. At a centre like Manchester, for example,
Professor Kevin Webb there reports that approximately seven to
ten patients with cystic fibrosis will be dying in their twenties
in that large centre, and I think that is mirrored across the
country. Their ethos is very much treat actively almost to the
last, because care delivered to improve or maintain lung function
is also care which is helping symptoms, and many of these patients
are buoyed with the hope, sometimes realised, of transplantation.
For that particular disease Professor Webb reports that his team,
which is multidisciplinary, has the skills to provide support
to the last. The situation is a little different, I think, with
muscle disorders, for example, where what has made the difference
is night-time non- ventilation and there is a particular, different
set of skills needed for that. One of the real challenges, I think,
for us, and which is being met in different ways in different
places, is the transition from childhood to adult care. For many
of these youngsters and their families who have been used to a
paediatric team, to change to an adult one is a very traumatic
process, potentially, so a lot of effort is put into thinking
about that process and easing it. I think errors have been made
either way. For example, patients were being kept in a paediatric
environment for too long when the skills of the adult palliative
care specialist were needed.
Q37 Mr Burstow: I want to clarify
precisely where the Department is currently, in terms of this
thinking about whether or not palliative care as a whole is something
which should be applied not just to those who have life-threatening
conditions but also to those who may well be spending a large
part of their adult life possibly with a neurological condition,
where palliative care will have a part to play. Is that something
which is being considered actively and worked on?
Professor Richards: Quite definitely,
yes, and that is why we asked the National Institute for Clinical
Excellence to develop guidelines on Supportive and Palliative
Care, because, although that relates specifically to people with
cancer, that is recognising that people have physical, psychological,
social and spiritual needs throughout their care pathway. We believe
that guidance, which was published early this week, will be of
great value to areas outside cancer. I think a lot of the principles
will be the same. We started by developing it for cancer as part
of the Cancer Plan Supportive Care Strategy, but I am sure it
will move further on from that, that is a starting-point. Yes,
we are committed to care throughout the illness. We do need to
define the service models which are going to be best for diseases
other than cancer. I think the work that we are undertaking both
with the Chronic Care Management programme and the other care
pilots and the End of Life Care initiative will teach us a lot
about what the care models need to be, the service models. You
asked also about resources. The issue there is to what extent
resources can be released from the hospital sector to go into
other sectors. There was some work, which was done on behalf of
Marie Curie Cancer Care, which indicated that at least it was
possible that if we could reduce the number of people dying in
hospital, and maybe if they had a fortnight in hospital at the
end of their life, the amount of money that could be released
by shifting that into the community might pay for itself. I think
now we need to find out whether that is the case in practice,
but I think programmes like the Evercare programme and the Integrated
Cancer Care pilots that we are doing will help us to know whether
that is a reality.
Q38 Mr Burstow: Over what timescale?
Professor Richards: The Integrated
Cancer Care pilots are due to start shortly and are over the next
two years. The Evercare pilots, which relate to elderly care more
generally outside cancer, are already well underway, and I think
the assessment of that is due out by the end of this year.
Ms Hawkett: Those in the Department
developing the National Service Framework for long-term conditions
are looking actively at the whole area of palliative care for
these patients and are taking into consideration the NICE guidance
which has just been published to inform their thinking.
Q39 John Austin: Could I raise briefly
the issue of renal services. The evidence we have had from the
Department of Health is that only one in five of the renal units
in the country have support from a palliative care team, and yet
in examples where palliative care has been provided there has
been an increase in the number of patients choosing either not
to start or not to continue with dialysis and exercising a real
choice. We are expecting a National Service Framework on renal
services at some stage in the near future. What input has there
been to that, in terms of end of life care?
Professor Richards: There are
a couple of things to say. In our planning of the End of Life
Care initiative, the renal team from the Department of Health
are engaged fully with us on that. I think the models that we
have got already, you mentioned the one in five renal units where
there is specialist palliative care involvement, those are models
which now we need to build on and say, "Right, how does that
work? Let's look at the experience there, let's look at how then
we can get more support into renal units, if that is what's working."
Equally, I know that there are a number of renal units which have
been implementing the Liverpool Care Pathway for the Dying, which
again was developed originally for cancer patients but now is
being used beyond cancer in a number of different settings, including
renal medicine.
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