Examination of Witnesses (Questions 140
- 158)
THURSDAY 22 APRIL 2004
DAME GILL
OLIVER, MS
CHRISTINE SHAW,
MR PETER
TEBBIT, DR
JOHN WILES
AND MR
TOM HUGHES-HALLETT
Q140 Chairman: There is a consensus
around the table. I will speak to the Prime Minister about this.
Mr Hughes-Hallett: I do think
it is vital that it is at local level as well as the national
level.
Chairman: Absolutely, and that is what
I am arguing for.
Q141 Mr Burstow: Can we briefly go
back to continuing care? As you said, Chairman, we are going to
have a short separate inquiry. It would be helpful if you could
feed in evidence to that. Going on one step further, as it becomes
more defined what people could expect in terms of palliative care
services and therefore it becomes clearer what should be funded,
what impact do you think that would have on you where you are
operating as charities and the discharge of the Charity Commissioners'
responsibilities in terms of ensuring that you are not undertaking
at charitable cost things that should be funded by the state?
Are you satisfied with the way in which the Charity Commission
is currently discharging that responsibility to ensure that you
are clearly the right side of the boundary?
Ms Shaw: This is a very interesting
topic. Clearly, the whole question of funding and the definition
of what services will be provided that are public services, provided
for NHS patients or on behalf of the NHS, has been taken forward
by the NICE guidance but there is more work to do there also.
I think clearly the Treasury has made a commitment to one hundred
per cent funding for voluntary organisations providing public
services by 2006. That is something that we definitely want to
move towards as swiftly as possible. I think this whole question
is evolving. There is also clearly a lot of work going on about
how hospice services are to be funded in the future. Should there
be a national tariff; should there be an interim tariff before
that can be fully instituted? All those questions are receiving
a lot of attention at the moment within the National Partnership
Group and the Department of Health in general. We look forward
to participating in that and seeing the outcome.
Mr Hughes-Hallett: It has worked
very well in other areas. When we think about it, we look at the
National Children's' Homes and Leonard Cheshire and see organisations
that are closely related to social services and the vast majority
of their income comes from government and a great minority of
their income comes from charity. I always think the easiest analogy
to think of is cream and milk. As long as the government is paying
for the milk, then charity can create more cream and pioneer,
push out and develop new ways of delivering care and help. While
we are constantly bogged down in funding the milk, which is the
situation at the moment, we cannot do what charities are there
to do, which is to push back the envelope to improve things. If
we can get that balance addressed, the Charity Commission, we
and the cancer patients and other patients with palliative care
needs will be very happy.
Mr Tebbit: I chair the group which
is looking at all of these issues for the National Partnership
Group. If we were to look at what the likely outcomes of all that
work are, I would say, first of all, that there will be a funding
mechanism for governing NHS funding flows that is common to both
NHS and voluntary providers. If we put both the voluntary and
the NHS managed serviced on the same level playing field, I think
we will get a nationally agreed range off prices for the supply
of core service. I suppose that means, and this is a large, bitter
pill to swallow for the NHS, that they will need to pay more for
the services they are actually receiving at the moment. I estimate
that that extra bill is certainly going to be in excess of £100
million a year. On the other hand, you have got to put that in
context. The context is that the NHS has been receiving services
from the voluntary sector which probably amounted to £1 billion
or £2 billion over the last 10 or 15 years. One of the other
sides of this is: what are the voluntary hospice going to do with
this extra money? I do believe that that would release an enormous
amount of creative and innovative energy to look perhaps at some
of the needs of people with non-cancer and to do that in association
with their NHS partners and partners in other specialties. How
is all this going to affect the role of voluntary hospices in
the future? Will it affect their independence? I suppose to a
degree it will affect their independence. On the other hand, there
are prizes there. If you like, they are going to have a dual role.
One is that they are going to be providing services for NHS patients
to an NHS specification but they will be perfectly free to enhance
that specification and use charitable funding so to do. They will
also be free to provide services which are not subject to agreements
with the NHS. In that sense, independence is preserved as is their
capacity to innovate.
Q142 Mr Bradley: While you are covering
some of this ground, I sense the tension between the positions
that you are identifying in the independence of the hospice movement,
their ability to fund-raise for their own services and negotiations
with PCTs because PCTs are aware of that flow of money coming
in through that charitable approach. In my own area of South Manchester,
we have both the Francis House Children's Hospice, which has a
huge national, if not international profile, through its fund-raising
activities, and St Anne's Hospice just over the border in Stockport,
again which has a huge profile. They value that independence but
I suspect that because the PCTs and other bodies are aware of
the flow of money on the back of those huge outfits, there a tension
about how much they want to put into the pot. My question is:
are you confident that you can overcome those tensions, that the
timeframe up to 2006 is achievable for that, so that that cake
of money, as opposed to the icing on it, is going to be disbursed
within that timescale? Are you confident that with the independence
of the hospices, because they have grown up with that independence,
there are not going to be disagreements along that route in ensuring
that flow of money is in their best interests?
Mr Tebbit: I am certainly not
confident that we will achieve this by 2005-6. I think 2007-8
would be a more realistic timeframe. The independence of the voluntary
hospices is not only influenced by any change in the mechanism
to provide them with funding; it is also affected by the need
to work with others in both the NHS and indeed in the private
sector in the palliative care networks. To work in true partnership
means giving up a bit of your own organisational independence
to make it all work. There are those other factors as well. If
we go back 10 or 15 years, being totally independent was fine
when the services that they were providing were, as I described
earlier, optional add-ons. Now that they are mainstream, there
is a need to accommodate that and their activities within the
overall framework of health care services for the kind of client
group that we are talking about.
Ms Shaw: I endorse some of the
things Peter Tebbit has been saying. The perspective of any individual
local hospice clearly will differ one from one other. That is
the whole joy and pleasure about the local charitable component.
This whole question of independence is shifting and changing.
Many hospices would regard themselves as interdependent, and that
is the climate that is coming: they need the NHS, the statutory
sector, and the statutory sector needs them. There is interchange,
collaboration and joint working increasingly wherever you look.
I think we will go further down that path in the future. In terms
of the funding, it is very important that by 2005-06 there is
some kind of sustainable framework for funding. It needs to come
sooner than that if possible. We are still seeing hospices struggling
to maintain their existing levels of services sometimes with very
low levels of contribution from the NHS. We reckon that, with
the injection of the £50 million in funding, that percentage
will go up. It is great that that is so, but that still puts it
at around 31 to 34%, and that is for adult services only. For
children's hospice services, we are talking about 5%. Clearly,
you can imagine what that means for a local charitable hospice.
Collectively they are raising over £200 million a year and
that is fundraising from local communities in order just to sustain
the services; that is not necessarily to develop the service,
which is an enormous task. This question does need urgent attention.
We are beginning to hear, very disappointingly, just one or two
anecdotes at the moment, and if this should grow then we would
be very concerned, that some hospice funding is being cut. On
the one hand they are receiving a proportion of the £50 million
and on the other hand some of the normal stream of funding through
the PCTs is being reduced. If that is more than one or two isolated
examples, I think it would be of great concern to us. Clearly,
Peter Tebbit is absolutely right: when we move to a better, more
sustainable basis, then with the funding that is released from
the voluntary hospices it is not going to be a question of stopping
fundraising. Fundraising will always go on, not least because
the community wants to support, but that money would be available
to be used in new and creative ways for rolling out the services
to people who currently do not have their care needs met and also
by doing other things that we have talked about earlier today
in terms of public education, information and support for carers
and so on. There is a whole range of ways in which that money
would be used.
Dame Gill Oliver: May I add a
slightly different dimension to this? Macmillan is not in the
same way a direct provider of services but charities such as Macmillan
bring a huge amount in terms of influence through the concept
of the Macmillan nurses, whom we do not employ but who are pump-primed
and are part of the NHS. Charities in that way have a huge influence
on what happens within cancer and palliative care services, so
it is not a direct service but influence and embedding innovation
and change.
Q143 Siobhain McDonagh: The first
question is to Mr Hughes-Hallett but any of you may answer. You
refer in your written evidence to the lack of integration in the
regulatory framework such that you are subject to four different
inspection regimes, three different sets of national minimum standards
and three different sets of statutory legislation. How does this
impact on you in practice?
Mr Hughes-Hallett: It certainly
impacts on cost because we have to employ the people to help us
make sure that we are properly regulated. I do not want to make
it totally selective. Certainly, I think better regulation leads
to better practice and we do not want to be offensive at all in
that. Having worked for 20 years in an environment where there
was only one regulator, in the financial services industry, with
some exceptions, things went relatively smoothly. Life is just
much easier if you know what your regulator wants you to achieve
and if you can work with him to achieve that rather than having
a number of regulators parachuted in who really do not know you
very well and you have to remind yourself every time they come
in which bit of work they are actually trying to regulate. Some
joined-up handwriting on regulation would work very well.
Ms Shaw: I absolutely endorse
what Tom Hughes-Hallett has said about that. One of the things
which we have suggested in our written evidence to you is developing
the concept of modular standards. There are clearly discrepancies
even between different types of hospice service in the way they
are regulated. For example, your hospice at home team that is
part of the in-patient service will be regulated under a different
framework from a stand-alone hospice-at-home team. For the individual
patient and family that does not deliver perhaps enough of the
right benefits. Can you be sure that these standards are the same?
With the change that has just come into force now with the Health
Care Commission, in a way, that discrepancy is going to get wider
because the in-patient unit will be regulated under the Health
Care Commission and the hospice-at-home stand-alone service comes
under a completely different regulator. The danger is that the
gap will become wider. We are interested in an idea that standards
are built around the needs, so that you have different types of
needs to be assessed. Who regulates, for example, your building?
Who regulates your patient care? Can this be done in a more modular
way so that it is not so dependent on the description of the service?
If you are a hospice, you are trying to provide palliative care
and you are trying to provide that in an in-patient unit or at
home and you are trying to adjust the standards around those questions.
Q144 Mr Burstow: Could you tell us
which regulator deals with hospices at home?
Ms Shaw: It is now (SC) from 1
April. Hospices at Home are regulated as nursing agencies, not
as hospices.
Q145 Siobhain McDonagh: The second
question is for Dame Gill. You comment in your evidence that while
demand for palliative care is growing, the research evidence for
current practice and future policy remains weak, and the research
resources and infrastructure are inadequate to support the generation
of better evidence. Many of these issues are addressed by the
NICE guidance. You suggest that there are particular deficits
in research on capturing patients and carers views on end-of-life
issues. What are the issues that need to be prioritised for research?
Dame Gill Oliver: I think what
we need to do is prioritise the issues that are important to people
affected by cancer. Evidence in the past has relied on randomised
control trials, the hard scientific quantitative evidence that
sways people who hold budgets, for example. I think we need to
look at identifying what is important to patients and carers and
support the production of evidence that is qualitative, holistic
and patient-focused and also try to persuade policy-makers that
quality of life is evidence. If people say that they feel better,
they feel better cared for, they feel more supported in receipt
of certain types of support and treatment, then that should be
good evidence for moving things in that way. A second point to
make is that we need to do much more future gazing. We need to
look at the shape of the cancer environment, the quality care
environment in, say, five to ten years' time. We need to look
at the workforce. We have touched on workforce today. Our workforce
is growing but it is not growing as fast as the need, and so we
need to be innovative about how we use staff. We have heard that
there are not enough palliative care specialists, for example.
You cannot grow them overnight, but we need to look at who does
what. It is a while ago, but the blood pressure machine and the
thermometer were purely the preserve of doctors. That is no longer
the case. There probably need to be some big shifts in looking
at who can do what and what is appropriate.
Q146 Mr Burstow: Can I go back to
the issue about the regulators, which was covered in the evidence
from Mr Hughes-Hallett, and ask whether or not you might be able
to clarify the point about there being a multiplicity of regulators.
Is this more a point about the fact that we have, throughout the
devolution settlement, had Scotland with its own regulators for
care providers and Wales with its own arrangements rather than
it being a point about you being exposed to a whole range of different
regulators within the English context?
Mr Hughes-Hallett: Frankly, it
is both.
Q147 Mr Burstow: In the case of the
English context, could you just expand on which of the regulators
are impinging upon you? It would help us to have that on the record?
Mr Hughes-Hallett: May I come
back to you with written evidence on that?
Q148 Jim Dowd: This is for Mr Tebbit
or Mr Hughes-Hallett. I want to look at management and governance
standards. The brief in front of us uses the words "independent
hospices" and in my estimation they are all independent because
none of them are owned by local authorities or by the state. Marie
Curie is one of the larger groups, and obviously this will feature
as uniformity. You have ten hospices and therefore you have a
uniform management model, I would imagine, across the lot. How
can we influence for the better the small individual rather than
independent hospices and is there a uniformity of management across
them?
Mr Tebbit: I do not know whether
there is uniformity of management but, as far as influence is
concerned, then Help the Hospices plays an important part in that.
It is now a few years ago since Help the Hospices was instrumental
in setting up what is called the Independent Hospice Representative
Committee. That is a forum for the independent hospices, the local
independent hospices, to discuss palliative care issues across
the board, including issues around management and governance.
Christine Shaw might want to add to that.
Ms Shaw: It is a very interesting
point. Help the Hospices has done a lot of work on supporting
governance in local charitable hospices. We have a programme of
work that involves, for example, either external training and
opportunities for chairs of trustees and chief executives to come
together to work in partnership to make sure that their relationship
and the way they work together delivers the best for their service.
We have a programme of in-house consultancy and support as well,
so that we can offer people the opportunity to go into a particular
service and work with the whole trustee board and the management
team to address any issues there or to make sure the whole service
is running smoothly. The critical times for that are changes of
key staff and also, as the service develops and grows, different
things become important during those times. That is a service
we can offer to people. Peter Tebbit is absolutely right; there
is no uniform management. In a way, I am not sure we would want
that because the whole point about the local hospice is that it
is responding to local needs. I am not sure we would want to impose,
even if we could, a management style on to each service, but you
can detect certain trends. For example, previously I think it
would have been quite common for there to be a management structure
in the hospice that was a triumvirate between the medical director,
the nursing director and a general manager or administrator. Increasingly
that is not the case. The pattern now is for there to be a chief
executive of the hospice who has overall responsibility for the
whole delivery of the service and for its management, of course,
working closely with the trustees who have the ultimate governance
responsibility to make sure the charity is doing what it should.
Q149 Jim Dowd: What percentage of
hospices take part in your programmes, given the fact that they
are voluntary?
Ms Shaw: We are not a member organisation.
We provide a number of services and so we have constituents rather
than members. We provide services one way or another to the vast
majority of hospices and our services are open to all hospices.
There are ways in which that varies. We do have a particular focus
on local charitable hospices and so that is the group that we
work with most closely. We have taken on a role and remit to co-ordinate
their views and to make these known where they need to be collectively
known as well.
Q150 Jim Dowd: It is near universal?
No individual stands out apart from the pack?
Ms Shaw: They all stand out as
being apart; that is the whole point!
Q151 Siobhain McDonagh: He is asking
you to name names.
Ms Shaw: I know he is. All the
services are regulated in the same way, not by us. They have access
to the services and support and information and to some extent
the funding that we can provide. There are very different patterns
for running a service. We do not see that as a weakness; we see
that as strength.
Q152 Jim Dowd: What inspection regime,
if any, are hospices subject to?
Ms Shaw: Those are the ones we
have just been talking about through National Care Standards.
Q153 Jim Dowd: Is that the only body
that does it? It is not done through the local authorities?
Ms Shaw: No, that is right, except
for the example I mentioned just now, which is the stand-alone
hospice-at-home service.
Q154 Chairman: To be fair, Jim Dowd
was out of the room when you gave that evidence.
Ms Shaw: For example, services
that are stand-alone hospice-at-home services will be monitored
under the Commission for Social Care.
Q155 Jim Dowd: I do not want to take
you over ground you have already covered. I will look at the transcript
when it is ready.
Ms Shaw: May I just add that,
in addition to those regulatory frameworks, an increasing number
of services also does independent quality assurance programmes,
things that are run by, for example, HQS—Health Quality
Service—and so on. There is an emphasis on continuous improvement
of quality.
Q156 Jim Dowd: If we get an increase
in spending in the NHS one way ot another, either through commissioning
or by direct grant, would you regard the trade-off for that extra
"dosh" to have a specific regulator?
Ms Shaw: There is fairly stringent
regulation already in place. We might argue that regulation is
there without "dosh" already and so the benefits of
additional funding are direct benefits for patients and families.
I do not think people in the hospice movement are afraid of inspection
and insistence on quality. I think they are leaders in the quality
service. We have some concerns about how that might be organised.
I think maybe when you were out of the room we were talking about
wanting to avoid a situation where an individual service has to
jump through, if you like, several regulatory loops. There is
a great and strong interest in joining that up so that the inspection
and regulation come from one source and are unified and cover
all the areas needed for that service.
Q157 Mr Amess: I have two brief questions,
and please give brief answers, to Mr Tebbit and Dr Wiles. It has
been suggested that GPs rarely make reference to palliative care.
They are under enormous pressure. This may be a gap in their training.
When Professor Mike Richards gave evidence, he told us that he
felt training in palliative care needs to be part of a GP's continuing
professional development. Do you believe that it is sufficient
for this training to be part of professional development? Should
such training be mandatory for GPs and an essential prerequisite
for revalidation? Would you like to write to us on that?
Dr Wiles: Yes. I would say from
my experience, I run a community team, I do not have a single
practice in my catchment area that does not refer to my service.
My experience is not that we have pockets of people not doing
it.
Q158 Mr Amess: That is wonderful
but if you do think of anything, just write to us. I missed Dame
Gill Oliver talking about these matters but would you briefly
comment on Agenda for Change?
Dame Gill Oliver: This is clearly
going to be an issue for the independent sector because the pool
of nurses is going to be the same, whether the independent hospices
are employing them or the NHS. If it is not addressed, then there
could be some significant variations. I think it is probably more
appropriate to ask the people who are employed in that.
Ms Shaw: Briefly, the initial
estimate that has been made about this is that for hospice services
the consequences of implementing Agenda for Change could be in
the region of a 10 to 15% increase on costs. There is work going
on within the National Partnership Group to see how those costs
can be met but clearly, as Gill has said, hospices cannot stay
outside this process. The pool of people is the same, and so they
need to be able to compete on an equal footing in this. The cost
implications are very strong.
Mr Hughes-Hallett: We employ 2,000
community nurses as well as our nurses in hospices. One, Agenda
for Change is great news; two, it will impose a financial burden.
Therefore, what we have got to do now is provide much better education
services to attract the health care assistants into the system
and fish, if I may say, in different pools of talent to attract
those health care assistants. For Marie Curie the Agenda for Change
is going to cost one quarter of our nursing budget this year.
It is awesome. We will manage somehow, although we would appreciate
some help.
Chairman: May I express the Committee's
thanks to all of you for an excellent session? We are most grateful
to you. We have learnt a great deal. We have one or two questions
on which we will come back to you. If there are further points
you wish to raise with us, please feel free to write to us. Thank
you very much for your help.
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