Examination of Witnesses (Questions 40
- 59)
THURSDAY 25 MARCH 2004
PROFESSOR MIKE
RICHARDS, PROFESSOR
STUART TANNER,
MRS JANE
SCOTT AND
MS SUE
HAWKETT
Q40 Mr Burstow: Just to come back
on the process of skilling up the generalists, which you were
describing just now, Professor Richards. It all sounded very good,
but it was not very clear precisely what the mechanisms are to
ensure that the good aspirations you have outlined actually are
translated into practice around the country. Could you say just
a little bit more about what the mechanisms are, what the levers
are that you are able to pull to enable you to see that rolled
out more generally?
Professor Richards: There are
two main tools that I mentioned. The Gold Standards Framework,
which by the end of the year will be in use anyway in about a
thousand practices throughout this country. This is a tool for
skilling up whole general practices, not just the GPs, the GP,
the practice nurse, other staff working in primary care, to help
them identify the patients who have got needs for palliative care,
to assess those needs, to communicate amongst themselves, first
of all, what those needs are, to plan care and then to make sure
that care is delivered. That is one of the tools. The other tool
is the Liverpool Care Pathway for the Dying, which really is about
the final days of life, and this is a tool which can be used in
the hospital setting, in the care home setting, really in any
setting, to make sure that staff, let us say, working in care
homes or staff working on hospital wards really know what they
should be doing when a patient is identified as dying. How we
are going to spread that, the programme that we have got we will
fund at the level of the strategic health authority and we will
be looking for champions within each strategic health authority.
We will be looking for nurse leaders, for specialist palliative
care leaders, for general practitioners leaders and also for those
with experience in modernisation. We will be defining the criteria
for their use of the funding. They will then produce plans and,
in very much the same way as we had for the £50 million for
specialist palliative care, we will assess those plans, and as
long as those plans meet the criteria they will get the funding
to do this over the next three years. Over that time we reckon
that there is a substantial number of hospitals and care homes
and general practices which will benefit from this. I do not say
that this three-year funding will end that programme, I think
it will make a major start on that, and we will be learning as
we go along and making sure the messages are spread across the
country.
Q41 Dr Naysmith: Reading the literature
in this area, there seems to be an indication that there is a
lack of uptake of services by black and minority ethnic users.
Is that something with which you agree?
Professor Richards: Yes, at least
in relation to specialist palliative care services, I believe
that has been the case, probably for a variety of reasons. Historically,
some of the hospices have been seen as being Christian foundations,
although all of them will accept others.
Q42 Dr Naysmith: I was going to go
on and ask you about that, because lack of uptake also can be
lack of access and lack of encouragement to take up, if you see
what I mean. Given the way the area has grown up, I wonder what
we can do to make sure, obviously that institutions keep their
character, and so on, but that they become more open and more
widely accessible?
Professor Richards: I am sure
all hospices are willing to provide access on the basis of need
rather than any other criteria. We have some extremely good examples
of where specialist palliative care services and hospices have
worked with the local community to engage with faith leaders,
to engage with local radio, whatever it may be, and in response
to that they have seen the numbers of people from those minority
ethnic groups rise to what one would expect in relation to the
local population. I think strong local action can make a very
big difference.
Q43 Dr Naysmith: Ms Hawkett was looking
very interested in this particular area, maybe it is time to see
if she wants to answer a question or two. Is there actually work
going on in this area that you know of, positively to try to encourage
change?
Ms Hawkett: I think one of the
most positive recent things is the funding which NOF (New Opportunities
Fund) has invested in this area. They are running two programmes.
One is the Living with Cancer programme, which has invested over
£21 million to provide home care support for carers and information
for black and ethnic minority groups. That programme will be finishing
next year, but there are 90 projects running across the country
and many of those are associated with hospices.
Q44 Dr Naysmith: You are beginning
to get some feedback on what works and what does not work?
Ms Hawkett: Yes. I think one of
the early findings from these projects is the need for them to
engage with local community leaders, and where that has been done
and done successfully there is greater access to these services.
Q45 Dr Naysmith: The same sort of
lack of representation applies to users with complex needs, and
I am thinking here of some of the mental health problems and dementia,
and that sort of thing. Do you think it is likely that they will
be better served in the future, that there will be more attempt
to encourage them to use the services?
Professor Richards: I think, in
terms of that sort of area, the key first step is the single assessment
process, making sure that we have the assessment from both a health
perspective, often carried out by a nurse, and a social care perspective
as well, and now there are new timescales and deadlines by which
those have to be implemented. That is the way in which we will
assess need. Then, in terms of what services those patients will
want, I think we are going to be in a much better position to
say "Now we know the need, what services can meet those needs?"
Q46 Dr Naysmith: Probably, at the
moment, there are unmet needs, and even if we identify them we
will need more resources in order to meet them?
Professor Richards: I am quite
sure that there are unmet needs.
Q47 Mr Bradley: Can I go back briefly
to something Professor Tanner has mentioned already, the boundaries
between children's and adult services, particularly in hospices,
where we have had evidence of difficulties, of cut-off points,
whether it be at 16 or 18, and to remove someone at any particular
point who is already within a hospice setting, obviously, at the
end of their life, can be very difficult, if not cruel. Do you
have any further thought on that? You started to say you were
thinking about this problem, about those boundaries and demarcations
in age, which often for children are not appropriate because of
the conditions from which they may be suffering?
Professor Tanner: I am afraid
I do not have data on the transfer of children from a children's
hospice to an adult one. I will ask Jane, in a moment, if she
has. Within the community paediatric teams, palliative teams,
and hospital services, however, there is a great deal of emphasis
on providing a smooth transfer and a very flexible approach to
age. Our age, as it were, is up to 16, sensibly, but there are
many patients, particularly those with severe cognitive delay,
who may continue to be under the care of a family paediatric team
for some time. Jane, do you have any data on the hospices?
Mrs Scott: I do not have any data
on the transfer from a children's to an adult hospice. I think
that 16 was mentioned, 19 is another figure, because 19, obviously,
is the transfer within the local authority. What we are trying
to encourage is, and certainly the work with children, young people
and families, in getting together an evidence base for the National
Service Framework, has suggested that is a very important area,
that they would like to choose at what age they transfer, within
some sort of limit. The other issue is, of course, that often
a young person might be 18 and still you cannot predict whether
they will still be with us when they are 30 or whether they have
got only a few months to live, so there has to be a decision taken
at some point. The other thing I would like to stress here, and
which I think is another difference with children and young people,
is that there is an age at which young people want to make their
decision themselves, and whatever their cognitive ability that
is the case. There is an issue then, obviously, where the professionals
have to be quite skilled at dealing with parents, who may not
want the young person to have the decision, and that is another
dynamic which comes in, in a big way. I hope that it is done in
an individual way, with obviously some boundaries because of resource
allocation. Certainly, as Professor Tanner said, you have young
people within paediatric units who have chosen to stay there for
their operation, or whatever, because they know that facility,
they know the staff, etc., particularly around congenital cardiac
conditions. A lot of that has been going on following the review
we did a few years ago, back in 2001, to look at how we transfer
young people far more smoothly, rather than you get to a birthday
and have a cut-off, that you begin with them and their parents
making that decision, they could be 14, 15, that could be right
for them. Then moving through, often to different hospitals, so
Great Ormond Street and the Middlesex, for example, where the
same cardiac liaison nurse who is at Great Ormond Street then
goes and does the clinic at the Middlesex, so that they recognise
the same face. That is just one model of good practice which could
be transferred elsewhere.
Q48 Mr Bradley: You would make that
quite clear that is the right approach, because quite often, in
all aspects of care, we hit these sorts of rigid boundaries, and
that sensible, flexible approach is not applied necessarily from
the Department of Health? You would make it quite clear that there
should be that flexibility and individual assessment of particular
needs?
Mrs Scott: What we would say is
that is best practice.
Mr Bradley: That is a slightly different
case.
Q49 John Austin: Can I raise the
general issue of children's hospices. For a variety of reasons,
the number of places required in children's hospices will be many
fewer than for adults, and, as Keith Bradley was saying earlier,
his children's hospice covers the whole of the North West. Two
years ago I was at a children's hospice, Demelza, in Kent, which
serves the whole of Kent, which is a pretty large area, also it
takes children from south-east London, but then it did not appear
to have any contracts with any PCT. Looking at the figures, it
does appear that the proportion of funding which children's hospices
receive from the Department compared with adult hospices is very
much lower. Would you like to make some comment about the need
for children's hospices and the relative disparity in public funding
which is going into children's hospices?
Mrs Scott: Children's hospices
are part of a whole pathway of care for a child and young person.
Often they are used in a very different way from adult hospices,
in the sense that often the child will access the hospice for
respite care through a long number of years, also there may be
periods of therapy provided there which maybe is not provided
locally, sometimes it is hydrotherapy, things like that, they
may access there as well. I think increasingly hospices see themselves
as centres of excellence, where other services can go to receive
training and education and support. It is not necessarily about
bed days. We have a number of hospices which do not have any beds,
it is a virtual reality kind of care, and I think that must be
stressed. Again, I think it is about giving parents choice. Sometimes,
particularly when the children are younger, parents do not want
the children to be away from them, and therefore hospices enable
parents, and sometimes siblings, to stay as well. Often, if a
child is very, very poorly, they need to be in a hospital type
environment where they will receive end of life care, because,
as Professor Tanner was saying, quite often it is up until the
end that you are keeping on treatment, or often the family makes
the decision for the child to die at home. I think there is a
very key need for hospice development, but I think it has to be
part of a needs assessment for a number of areas to assess then
what that hospice should provide. Often there are services being
provided mainstream in the NHS and by the hospice, and I know
a lot of work has gone on recently to make sure that those services
work together, in an integrated way, rather than running in parallel.
Certainly I think Diana, Children' Community Nursing Teams and
again the NOF funding into children's services has helped quite
significantly.
Q50 John Austin: You have explained
why a hospice place may be less appropriate in the case of children
than for adults and, as I said earlier, there is a variety of
reasons why a hospice may not be appropriate. Where it is deemed
appropriate and where it is accepting children as patients either
on a respite basis or for residential care, why is there such
a disparity in funding compared with the adult hospice movement?
Mrs Scott: I think largely it
is to do with numbers, in terms of how they started, how they
grew up as individual organisations relating to, what were then,
health authorities, of course, the health authority on the patch
which was the patch where the hospice stood felt rightly that
they were providing input into a hospice where maybe not many
of their resident population were. I think there are a lot of
historical things that need to be unknitted. The ideal thing is
actually working with a group of PCTs, Children's Trusts, whatever
we have in the future, obviously, to determine what is going to
happen across the boundary. Obviously, some PCTs would prefer
to pay the cost per case, so when they have a child, and some
of these children we are talking about, in both workforce and
equipment terms, are very, very resource heavy for that one PCT,
they would prefer to buy a number of bed days. I quite understand
where the hospices come from, that is not very satisfactory when
you want to maintain and sustain a hospice over a period of time.
We are looking at ways, obviously, within the New Opportunities
Fund as well, whereby they can begin to work out a package of
more effective commissioning.
Q51 John Austin: It has been suggested
that, the fact that they do not receive necessarily statutory
funding and the way in which the services are funded, this has
led to fragmentation, lack of continuity of care and a lack of
planning. Is not this an area which does require some serious
attention in order to co-ordinate the development of services
for children?
Mrs Scott: I cannot stress strongly
enough that hospices need to be seen as part of a package of care
across the board and they are one element of a child's care. If
we think about the place where a child and a young person will
receive the majority of their healthcare, it is often in school,
where school nurse assistants, education assistants, actually
will perform tasks around gastrostomy feeding, etc., etc., with
the child or young person. I do not think we should forget that.
In terms of fragmentation, I think a lot of work has been going
on locally, certainly since early 2000, around looking at how
we can have more integrated pathways of care for children, which
include hospices, but it is a local decision how Primary Care
Trusts spend the funding which has been allocated to them in their
basic budget.
Q52 John Austin: Given that children's
hospices will not be provided locally, immediately locally, they
will serve a much wider area, is there a role for the strategic
health authority, and, if not, whose responsibility is it to see
that there is a proper provision in the area?
Mrs Scott: The role of the strategic
health authority obviously is to performance-manage its Primary
Care Trusts and keep a strategic overview of planning services,
so I think, yes, they do have a role. Obviously they will be supported
by work coming out from the Department, such as in "Every
Child Matters", where we talk very clearly about parents
needing to be supported and about the pooling of budgets and getting
an integrated service. Also, of course, the work we have published
already within the emerging findings and the National Service
Framework and the National Service Framework Hospital Standard,
we are expecting the National Service Framework, the rest of it,
to be published later this year, and I hope the strategic health
authorities will base the implementation of integrated services
on these two documents.
Q53 Mr Bradley: Just so that I can
be absolutely clear, accepting, as we have, that children's hospices
cover a much wider area, accepting that they are only part of
the continuing care, could you write to me perhaps and use just
my region as an example, the North West, and say who is responsible
for co-ordinating all those elements? So that I am clear who and
which organisations are linking together to come up with a plan,
for example, as I say, for the North West, to ensure that each
of those elements is co-ordinated right from the local level but
into that much wider area? I do not get a sense, in my region,
that co-ordination is going on. It may be, between one or two
PCTs, it may be within one or two local authorities, but, because
children's hospices, for example, take them from such a wide area,
who is doing that work actually? Could you write to me on that
point?
Mrs Scott: I am sure we will be
able to do that. I would stress though that one size does not
fit all and what is being done in your area, which may or may
not be effective, probably is being done differently in another
area, and one of the key things is learning across.
Q54 John Austin: Whatever the provision
was, it would still need somebody to do it, to be responsible?
Mrs Scott: What I would not be
giving you necessarily is our best practice, it would be what
is happening to you locally.
Q55 Mr Bradley: It would be an example
and we could judge perhaps whether it was good practice?
Mrs Scott: Yes.
Q56 Jim Dowd: I realise you are not
direct service providers yourselves, but I want to look at just
how the service is received by many people. The Health Service
Commissioner told us and gave us case studies which indicated
that the biggest source of complaints she gets in relation to
palliative care is a lack of communication, communication between
both the care staff, that might be ward-based staff, and, say,
Macmillan nurses, between consultants, between families of the
patients and the patients themselves. I wonder if you could tell
us what view you have on what can be done to improve performance
in this area?
Professor Richards: Yes, certainly.
The communication issue is one which was given very high prominence
in the NICE guidance on Supportive and Palliative Care. There
are two aspects. One is communication between the health professional
and a patient or a family member and also communication between
professionals and the general co-ordination there. Each of those
got prominence in the NICE guidance. On face-to-face communication
with patients, we recognise this is an extremely important aspect
of care, one that patients value highly and one for which, in
the past, I do not think either medical or nursing training has
prepared us adequately. We do have now extremely good research
evidence that training both doctors and nurses in communication
skills improves their performance. We are working now with the
people who have done the research to develop accredited programmes
for communication skills which will be available across the whole
country. We have just been through a year of a pilot programme
for that, which has been very successful. We are working now with
the emerging NHSU, that is the University of the NHS, which is
in embryonic form, to roll this out to cover the whole country.
The reason that is going to take some time is that we need to
train facilitators to run those programmes, but, in essence, what
that does is it allows clinicians to come to those programmes
with their own particular communication problems. It may be that
a doctor or a nurse may say, "I find it difficult to tell
a patient that they are dying." If that is the problem then
within that programme they can learn how to do that better. I
think that is a very important aspect of communication that we
are taking forward. Also, in terms of the general co-ordination
of care, one of the key aspects there is, first of all, working
in teams, and those teams meeting together and discussing patient's
problems and discussing the plan for care, and that is happening
very much more now than it was even a few years ago. Then obviously
between teams you need to make sure there is communication, for
example, between a palliative care team in a hospital and the
primary care team. Again, the guidance gives specific recommendations
on how best that can be done.
Q57 Jim Dowd: How do you address
the conflict which may arise between the preference of a patient
and that of, say, their carer/families? How does this reflect
perhaps, in an earlier question from the Chair, the discrepancy
between the numbers who say they want to die at home, although
that might be just an idealised view of things, we might all say
that many years from what we perceive to be the end, and the less
than half who actually manage to achieve that?
Professor Richards: As a clinician,
one's primary responsibility is to the patient, I think that is
very clear, but within palliative care we do try, wherever possible,
to support carers and families as well. Very often, where there
is no conflict, that is relatively straightforward and the same
clinician can be doing that. There are other occasions when there
is conflict between the patient and family where it may well be
that you need a different member of staff allocated specifically
to deal with the carer's needs, and that can work very effectively.
Certainly, within the palliative care team for which I was responsible
at St Thomas', that was the way we worked it. There is a whole
section again in this NICE guidance on family and carer support,
and I think we are recognising that it is very important that
it goes on during the patient's life and not just in bereavement,
although bereavement care obviously is an important aspect of
care as well. Often, if you can identify the carers who have needs
early enough, you may be able to work with them while the patient
is still alive and support them, and many of them will want to
give support and care for the family, they may just feel that
the burden is too great, but often they can be supported in that,
and that is why we have made that a priority too.
Q58 Jim Dowd: On one particular issue,
DNRs (do not resuscitate), do you believe there is ever a case
for a clinician solely taking that decision without communicating
that either to the patient, if they have facility, or to their
family and carers?
Professor Richards: I think this
is a very difficult one. There are people who are close to death
where we know that resuscitation actually is futile, where we
will not succeed in resuscitating them, and therefore to attempt
to resuscitate is burdensome, frankly. I think, on occasion, that
can be reasonable, for that to be the case and therefore not discussing
it with the patient. I think, in general, we are becoming much
more open in our communication with patients about all aspects
of their care and in terms of advance care planning, and that
should be part of it, it should be discovering what the patient
thinks they will want, although, of course, their minds may change
as the disease goes on. Again, it comes back to communication.
If we have got staff with the communication skills we can discover
then what the patients' wishes for themselves are and we can honour
those wishes.
Q59 Mr Burstow: Earlier on you said
that not enough had been done yet to engage social services, in
terms of commissioning, and so on. One of the concerns I think
we have, from evidence we have seen, is the way in which social
services provision has changed over time, moving increasingly
out of domestic help at home into intensive personal care at home.
In the context of palliative care, particularly end of life care
at home, is it really a choice to have care at home if there is
no domestic support being provided? Is it really a choice when
you are faced with the prospect of living in a home which is becoming
ever more squalid, as part of the dying process?
Professor Richards: I had said
already that I think there are problems in this area. Having said
that, the Department of Health has issued guidance requiring councils
to give the highest priority to patients who have got life-threatening
illnesses. There is also the guidance on continuing care, in terms
of who picks up the funding for care towards the end of life,
and the Department of Health made very clear that should be based
on need, not on a specific time span before death. With the new
programmes that we are running, I think, as we identify patients
who are not being looked after at home because of those factors,
that will actually bring that out into the open and then we will
see what more needs to be done, in terms of the practical support
that you have itemised. I do not think we have got it right yet
but I think, through the various programmes, the Evercare programme,
the Integrated Cancer Care pilots, the End of Life Care initiative,
we will be able to see where the gaps are and then make further
recommendations on what needs to be done.
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