Examination of Witnesses (Questions 300
- 319)
WEDNESDAY 26 MAY 2004
MISS MELANIE
JOHNSON MP AND
DR STEPHEN
LADYMAN MP
Q300 Mr Jones: I think that you have
moved away from controversy there.
Dr Ladyman: That is what these
round tables are about: exploring that balance and how we can
change employers' attitudes to allow people to have a caring role.
I have to say that some of the biggest companies—BT, British
Gas—are very focused on the need to involve carers in their
workforce, because they can see the benefits of carers. They realise
that, by providing flexibility for them in the workforce, they
can mix the role of caring and work. I think that is exactly the
same with young parents, especially single parents. Being brought
up in an environment of poverty is the worst possible thing for
a young child. Allowing the parent to work, if you can allow the
mix between their caring role and their work role and get the
balance right—if you can provide the structures to allow
them to do that—then I think that the net benefit is a positive
one. I am not claiming that I have all the answers here by any
means. That is why I pose the question and pose it to all of us.
I suspect that in many cases we have moved hundreds of miles from
our parents.
Q301 Mr Bradley: Would that include
the interrelationship between caring and work and pensions provision?
Dr Ladyman: Yes, that has clearly
got to be a factor in the equation.
Q302 Chairman: Can I take you into
another area? In your evidence you talk about being committed
to an equitable distribution of hospice services. One of the issues
that comes over a key area of concern is that the nature of hospice
provision and the reliance upon voluntary fundraising has resulted
in an inequitable distribution of services. One of the witnesses
from Marie Curie gave an example from my own part of the world,
where he talked about "extraordinary inequities" in
Yorkshire. In the North Yorkshire area, Marie Curie was asked
to provide 20,500 nursing hours to a population of 886,000, whereas
it provided only 11,000 nursing hours to West Yorkshire, which
has a population of 2.3 million. How do you, without destroying
the voluntary ethos of much of the work being done, and rightly
being done, in palliative care, address these inequities and discrepancies?
Miss Johnson: To start with, obviously
the PCTs now have the prime responsibility for local commissioning
of services, and those should be based on the needs of their population.
So a better understanding, a more local understanding, of the
needs of the population ought to help in general. You are talking
about hospices, but I am talking probably more about palliative
care.
Q303 Chairman: The comment here was
about palliative care. It was the Marie Curie home care provision.
Miss Johnson: We are talking more
generally here than, as it were, the buildings and the facilities
provided out of those buildings. In terms of the distribution,
we accept that there are some inequalities, and there are also
some inequalities of provision for certain groups. BME, for example—
Q304 Chairman: I think we will move
on to that later on.
Miss Johnson: . . . is an issue
on which I think more progress needs to be made. We have done
some things on that by, for example, supporting grants to a number
of organisations actually looking at that—including things
like the Policy Research Institute on ageing and ethnicity, Cancer
Equality, Cancer Black Care and the Cancer Resource Centre. So
there are grants going out to try and address some of those issues.
However, I think we have to recognise that there are also social
barriers in place which might affect delivery and that there are
also difficulties in collecting the data. We do not have as good
data as we would like to have. That needs to be sharpened up in
terms of the response of NHS trusts, for example, in the data
that is collected and its accuracy. There are some very good practice
examples amongst specialist palliative care providers, in terms
of BME and working closely with the communities. So there is some
good work to build on. The issue is to mainstream the work that
is going on now, to tackle just the sorts of inequalities and
issues of distribution that you are talking about. One of the
issues that we are looking at now, for example, is also the distribution
of hours of availability of district nursing staff, because that
is another issue in terms of palliative care. In some areas we
know there is 24-hour cover; in other areas it is basically nine
to five. We do not know the details of that. Just to give you
a piece of new information which is not yet available elsewhere,
we are looking for an independent patient-focused study on this,
to determine how all providers are ensuring end-of-life care,
and the quality of that. Terms of reference are being determined
at the moment, and we are looking to commission some work to build
on that over the autumn, in order to get some meaningful data
on which we can base decision-making and also to inform the commissioning
work of the PCTs.
Q305 Chairman: I come back to my
original question, which was about North Yorkshire versus West
Yorkshire, where there are substantially more resources in an
area of less need. With respect, the mechanisms you have described,
where you are relying upon PCTs to determine the level of need
in a particular area, does not address the fact that a wealthy
area appears to have more ability to develop services for a population
with less need than a poor area. I am not sure quite how, within
what you describe, that will be addressed. I am not suggesting
you do this, but would you consider withdrawing support from hospice
funding or palliative care funding in certain areas which appear
to be over-provided compared to others, in the kind of example
I have given?
Miss Johnson: As we get better
information—and we are increasingly getting better information
and taking steps to get even better information—we will
be in a position to make sure that, if money is going out on any
particular projects or in any particularly targeted manner, as
some funds have done in this area, they are going out to better
equip those areas where the provision is less good. As you know,
the funding formula for PCTs does broadly recognise the needs
of a local population in health terms. So the more disadvantaged
communities will be receiving greater funding through their PCTs.
Some of the imbalances which you are talking about, therefore,
have grown up historically, are hopefully now being addressed,
and will be addressed fairly rapidly by the future arrangements.
Q306 Chairman: Does the funding mechanism
of PCTs take account of the ability of certain areas to fundraise
more effectively than others?
Miss Johnson: It takes into account
deprivation and it takes into account need. Often the areas where
there is the greatest deprivation have the worst health and so,
on both deprivation and health need, those areas will come out
to have higher funding than areas which are more affluent and
may traditionally have had better provision. There is not a specific
recognition, as far as I am aware, of a fundraising component,
as it were, to the funding.
Q307 Chairman: You believe that,
over time with the rearranging of the PCT funding formula, the
kind of discrepancy I have described in North Yorkshire and West
Yorkshire is likely to be addressed?
Miss Johnson: Yes. I think that
is why also we have made sure that, where we have handed out money,
we are being very scrupulous and demanding of those who have put
in bids, to make sure—for example, where we are looking
to extend the skills base—that money is going on very good
projects in areas where they certainly need that sort of support.
Dr Ladyman: There is another tool
in respect of children's services you need to be aware of. That
is the National Service Framework for Children, which we hope
to publish in July and which will have a chapter in it about palliative
care for children. We would expect PCTs, in doing their strategic
planning, to be working towards meeting the vision which is in
that document. Over a period of time, therefore, we would expect
all areas to have that type of service. Clearly they will make
local decisions about local priorities and about exactly how they
will deliver it, but they will all work within that same framework.
Q308 Mr Jones: I will come to asking
questions about palliative care for children in a minute, but
perhaps we can get back to the equity of provision of hospices.
Hospices have been set up by voluntary organisations. So how is
it possible to have equity of provision unless there is some national
plan, unless there is a national funding mechanism?
Miss Johnson: This comes back
to the question about whether we are talking about hospices—
Q309 Mr Jones: I am talking about
hospices.
Miss Johnson: . . . or palliative
care. I am more concerned that the overall package of palliative
care is a supportive one. Increasingly, what that does is to enable
people to spend as much time at home as they would like to be
able to do.
Q310 Mr Jones: Yes, I understood
that because you answered the Chairman on those points. What I
am now asking is this. Because hospices are much more likely,
from the evidence we have seen, to be set up in areas which are
better off—because they require voluntary funding—then
there is currently an inequity of distribution. How do you address
that inequity of distribution?
Miss Johnson: I think that depends
on how you see the future development of the services being primarily
focused, and whether in fact actual hospices, as we understand
them now, are needed in all areas where they currently do not
exist—to make sure that the same level of service is provided
to those areas. That is to say, whether you need a lot of extra
beds provided in a hospice setting, or whether you need the resources
that are available: in which case clearly the PCT and local commissioning
can increasingly, with the right range of skills and staff available
and the right sort of work being done, provide a lot of the sorts
of services that are currently being provided out of hospices
for people on a daily basis or—
Q311 Mr Jones: Would you admit that,
if you have a hospice within 20 miles, it is an advantage in providing
palliative care, whereas if the hospice is 100 miles away it is
a disadvantage?
Miss Johnson: That may be so at
the present time. I cannot really comment without looking at the
different packages of care that are available in any different
area. I do not think it is possible to generalise like that. What
is certain is that we need to make sure the overall picture of
care, the overall package that is available for patients and their
families, is the right sort of supportive package. That means
a lot more concentration on people being able to be supported
at home; a lot more availability of all the services that might
be useful for people to stay in their own homes; recognising the
role that hospices will play in that, but also that that expertise
could sometimes be provided within other settings than perhaps
those that are traditionally associated with it.
Q312 Mr Jones: Assuming that hospices
provide any function whatsoever—and I think we agree that
they do and they are a benefit?
Miss Johnson: Yes, of course.
Q313 Mr Jones: Then it must be advantageous
to be near where the benefit is, rather than a long way away from
where the benefit is.
Miss Johnson: It depends on what
the demand is, I suppose. A hundred miles is your example. I am
not sure whether that is a particular example that you have in
mind or just an illustrative example.
Q314 Mr Jones: You are criticising
me for generalising and I am trying not to say that this is just
a problem for one particular area. I am sure that we could come
up with examples of regions in the country where there is no hospice
provision and I am sure that we could provide them to you. However,
I am simply trying to get you to admit that there is a problem,
and then ask you whether you have any intentions to do something
about the problem.
Miss Johnson: What we want to
do overall, as Stephen has said, is to provide standards which
will be and are being set down nationally. Those standards are
to look across the piece. We have guidance from NICE, for example,
on supportive and palliative care, and the services that we expect
PCTs to provide. The palliative care investment plans, at each
network, are looking across the piece at needs and are assessing
those needs. Therefore, what we want to do is not necessarily
to focus on hospices—I do not think the Select Committee,
as I understand it, is focusing particularly on hospices—but
more generally on palliative care.
Q315 Mr Jones: Yes, but these are
the questions I am asking you now. We will move on to palliative
care in a minute.
Miss Johnson: But I do not think,
with respect, that we should take things separately. We should
look at the overall offering that is available to patients and
their families. What that should do is see what the role of hospices
can be within that, where they exist; what the plans are for the
local purchasers to purchase more provision of a bed-based kind,
if that is what is appropriate, and how that should be delivered;
the expertise that undoubtedly, on an outreach and a day basis,
comes from hospices too, which also needs to be provided in some
way or another; and the work that can be done in a community setting,
with or without the hospice base. There is a whole menu of options
there. Different geographical areas may have different needs and
different best ways of providing those. To some degree, that is
one of the good things about the PCT-based arrangements: that,
within the standards which are being set nationally, what we want
to do is to see that the provision meets the need and the best
arrangements for people locally, given the geography of areas
and all the rest of it. I suggest that a single model is probably
never going to be exactly it. What we have to have are demanding
standards; to be clear about what sorts of outcomes we want for
patients; and to make sure that the various resources locally—that
have been there historically or ones that can be put in place—are
the ones that will support those standards and those outcomes
for patients.
Q316 Dr Taylor: I apologise for being
late and if I am asking what has been asked, Chairman, please
rule me out of order. It is really to bring in the state of consultants
starting in palliative care. We went to Edinburgh very recently
and were incredibly impressed by a particular consultant in palliative
care: not only for her personality but because she was one of
six to be providing palliative care services for Lothian alone,
which we believe has a population of something like 400,000 to
500,000. On the figure you give us in your document, the Government's
workforce census shows 155 consultants in September 2002. If you
work that out, it is very many less than six per 400,000. Does
the Government have realistic plans to increase this? The lack
of specialists in palliative care puts the service in particular
areas back by a long way. I think I am right that, in my own area,
there is one for 540,000.
Miss Johnson: We have figures
that have been collated by the Association of Palliative Medicine,
showing a total of 237 palliative care consultants in England
in 2002, with a whole-time equivalent of 169. The total head count
figure projected for 2008 is 358, which is an increase of 51%.
That will equate to a whole-time equivalent of 255. That is an
increase of just over 50%. So there will be both a head count
and a real increase of about 50% over the next few years. Looking
at the 2002 baseline figures that we have, we are looking to 2015—which
I appreciate is a reasonably long time horizon—the overall
view is that the number is likely to double over that period from
2002 to 2015. These increases are very important, because the
consultants in palliative medicine are currently spread across
about 170 hospices. There is also likely to be an increase in
the non-cancer work. I am sure that will also be an issue that
the Select Committee are looking at, namely the current focus
of a lot of palliative care on cancer, when there are obviously
huge demands that go beyond that.
Q317 Dr Taylor: The other amazing
thing in Edinburgh was that the particular hospice we went to
actually had NHS junior doctors on the staff. Is it possible to
find out how many charitably run hospices in England have NHS
junior doctors on their staff?
Miss Johnson: I do not know the
answer to that and we may need to write to you on such an issue.
I am sure that we can supply the Committee with the information
that you have asked for. If we have it available, we will supply
it—put it that way. In response to some of the earlier points
you were making, the end-of-life care initiative is also skilling
up a lot of generalist staff. I mentioned, before you arrived,
things like the district nurse training, the enthusiasm there
has been for that, and the extensive enrolment in training. Obviously
we are looking at the role of GPs and their surgeries generally,
and of course a wider range of hospital staff. From my experience
of the local hospice movement in my own constituency, I have been
aware that people come in to be consultants through many routes,
including general practice.
Q318 Mr Bradley: Perhaps I could
go back briefly to the equity of provision, so that I am absolutely
clear what the Government are saying. If we accept that hospices
are part of palliative care and part of the packages that you
may want to develop, are you saying that in areas where there
is little or no hospice provision, whether for adults or for children,
then there is government support for those to be developed—either
directly through statutory provision or through support for the
voluntary sector—and, equally, continued financial support
for those hospices that are already in existence in areas that
are part of the package of provision for that particular area?
Is the intention to have an equitable distribution of care which
includes the provision of hospice care, whether provided directly
or indirectly?
Miss Johnson: The intention is
to have equitable care, provided by whatever means is the best
way of providing that, given the locality and the needs of the
localities. I think that is an important distinction from the
way you are putting the question to me. I am very happy to support
equitable care. I think that is an absolutely crucial outcome
and one we have to focus on, and keep focused on. As to exactly
how that provision is to be determined—I am not saying that
you are suggesting "one size fits all", but the one-model-fits-all
approach is not necessarily the right way for every area to go.
Therefore, I would not want to legislate for particular formations
of things. What I would want to be sure about, and why we are
setting clear standards and clear demands of the service, is that
they provide certain qualities of outcomes, and a range of options
and choices for patients and their families.
Q319 Dr Taylor: If I put the question
the other way round, where would you see it as not appropriate
to have any hospice provision?
Miss Johnson: I have already said
that I think the measure is looking at what the provision should
be in terms of the outcomes for patients, not in terms of specific
aspects of the service. Traditionally, some areas have historically
focused more on outreach work and less on hospices. I am not judging,
without looking at the detail of those provisions, whether those
are less good or better than the services that have been more
hospice-focused. What I think that we have to do—and I hope
this is one of the things that will come out of the Committee's
inquiry—is to look at the sorts of balances which might
be achieved; what the best available models are; and to look at
how the future provision can build on what there is at the moment.
I entirely accept that what there is at the moment is not a consistent,
level playing field across the country. Obviously we have been
starting from different places in different areas. However, that
is not to say that an area that does not have as many hospices
as another area necessarily has poorer provision nor that it necessarily
has better provision.
Dr Ladyman: I am feeling left
out! Can I have a question?
Chairman: By all means!
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