Examination of Witnesses (Questions 120
- 139)
THURSDAY 22 APRIL 2004
DAME GILL
OLIVER, MS
CHRISTINE SHAW,
MR PETER
TEBBIT, DR
JOHN WILES
AND MR
TOM HUGHES-HALLETT
Q120 Mr Burstow: I just want to pick
up one of the threads we are exploring, which is the NICE guidance,
which Dame Gill was talking about, and a thread we had earlier
on, which is this issue of the gap and the failure perhaps to
integrate health and social care. As I understand it, the NICE
guidance does not really speak directly to the role of social
care and does not really set out concrete standards at all. Could
you perhaps amplify that and, as it is something you cover in
your evidence, what you would like to see being specifically addressed
to social care to make sure that it really is integrated properly
with the health aspects?
Dame Gill Oliver: The first thing
to say is that it is essential to have a joined-up approach. We
have heard already about single assessment. In thinking about
joint budgets and joint planning, that is going to be essential.
The NICE guidance is a really good start to that and points the
way. It will be important for people affected by cancer, people
who are requiring palliative care and for professionals as well
to understand what that guidance is saying. That is why Macmillan
has produced a user-friendly leaflet, which gives the NICE guidance
in a different type of language but with the same content. To
answer your question, what we need to do is something that has
been touched on already, to look locally at how the various agencies
can work seamlessly together, not just the fact that they all
sit around a table at a meeting, but that they agree that there
will be a single point of entry. If a person is wanting to die
at home or requires palliative care and has a particular need,
then anybody in that grouping, whether it is social care or health
care, will be able to access that and will be able to fund that.
Somebody affected by cancer, someone requiring palliative care,
does not need to think, "Do I have to go to a health care
person or to a social care person?" They go to their contact
and the rest will happen. It is going through one door, and that
is the ideal that we will be working towards.
Q121 Mr Burstow: Clearly, in respect
of older people with a similar assessment, there is an opportunity
for that now to become reality but for many other age groups that
is not the case. Whilst the objective of seamless services is
a very worthy one, one that we would want to see achieved, are
there specific tangible standards that ought to be being set out,
maybe in the National Service Framework or in some other way,
that would enable both health and social care in their commissioning,
because they are still separately commissioned services, to be
synchronising what you are doing?
Dame Gill Oliver: The answer is
"yes", so that any barriers to a joined-up service are
removed. The identification of quality measures, of standards,
whatever you call them, is one way to ensure that that will happen.
Q122 Dr Naysmith: This is a question
for Dr Wiles, but others may wish to comment as well. The submission
from the Association of Palliative Medicine made it quite clear
that you felt there were problems of a lack of facilities for
adolescents and for the very elderly and suggested there might
have to be different models developed to deal with these two sectors
of the population. First of all, why do you think this has happened;
what do you think we can do about it; and what would the models
look like?
Dr Wiles: I think the problem
is that some fatal diseases that affected children and led to
them dying as children are now producing increased survival. With
childhood diseases like cystic fibrosis, children were dying as
teenagers; they are now living into their thirties, so we have
a disease that was a childhood disease becoming an adolescent
and young adult disease. I think the services were focused on
these remaining children's diseases. This is just to highlight
the pattern of disease changing and we need to respond to that.
I do think that there is a difficulty in providing what we are
talking about and following the NICE guidelines. It is a very
worthy vision of where we would like to be but we are raising
expectations of the population when we are not sure that we have
the resources to meet that. That is the real problem, particularly
in my specialty of palliative medicine, which underpins a lot
of what we offer to patients, and changes in primary care have
an impact. We are talking about people wishing to stay at home
but sometimes they end up in hospital. The out-of-hours primary
care service was the trigger that put them back into hospital
because they were seen by somebody who did not know them and did
not have enough information. I think we have to have better information
that stops some of the triggers that put people back into hospital.
We do need manpower. We are training people in palliative medicine
to support palliative care but we are not training enough people.
It is a unique speciality, just to touch on the medical side of
it, inasmuch as so much of the training occurs outside the NHS.
What we are being offered are training slots but no funding. We
have not got the volume in the charities that the NHS has to move
money to support unfunded posts.
Q123 Dr Naysmith: Is it just a question
of funding or is there a need to re-think this? I heard someone
refer the other day to the fact that cancer is now a chronic disease
and can be treated as a chronic disease.
Dr Wiles: Part of it is funding.
We certainly need more people to look at how we train. We have
to look at how best we use the people we have in the system at
the moment. We may have to reconfigure. I think we do need a different
model of care for different diseases, particularly if we move
from cancer into non-cancer. We may need a different model in
different communities. What works in Surrey with its hospice beds
may not work in a rural area. We have to recognise the flexibility
of the model and take staff and resources we have and use them
better. The standard of patient care should be what we make equitable.
Mr Hughes-Hallett: I support what
has been said there, that it is not just about money. We must
turn that round the other way. Marie Curie was delighted when
the Health Secretary pledged in December that everyone should
have the same access to a high quality of palliative care so that
they can choose if they wish to die at home. The challenge that
we all face now is turning that very laudable commitment into
reality. My fear is that government may be thinking: good, the
charity sector will do this now. Let us just take education. We
established an education service in palliative care ranging right
the way through from basic modules to a masters degree for our
staff. Now more than 80% of the students on the course are NHS
professionals. We are delighted about that. We think it is part
of our charitable object to share our knowledge with other people,
but there is a limit to what we can do with our precious resources.
Almost every single nurse in this country in a surgery doing screening
work for breast cancer is trained by Marie Curie, not by the NHS.
I think charities are being asked to do, frankly, simply too much.
There is an inequity. It is bizarre to me that during the day
one of our patients may be looked after by an excellent service
from Crossroads, fully funded by Social Services, and at 7 o'clock
that person will hand over to the Marie Curie nurse who is 30%
funded by a different agency of government. I do not think we
can get away from the fact that we are not going to double the
number of people who die at home, which is what we believe must
be achieved, without more financial commitment from the government.
I am sorry to say that but I do not think we can, however hard
we all try. Hospices and care standards all need money for nursing
services and information ultimately. I think the Government is
going to have to look at that very carefully.
Q124 Jim Dowd: Dr Wiles mentioned
St Christopher's in passing. That is actually in my constituency
and I know Dame Cicely pretty well. My understanding is that that
is a completely non-religious institution. I think they chose
the title "St Christopher's", although it does have
religious overtones, as the patron saint of travellers.
Dr Wiles: You may need to be a
Christian to recognise that.
Q125 Jim Dowd: Yes. Can I move on
to have a look at the commissioning? Mr Hughes-Hallett mentioned
earlier a difference between North Yorkshire and West Yorkshire.
Obviously there are substantial social differences there anyway,
but there is immense disparity which you outlined. Is there any
national practice for commissioning? The PCTs can answer this
as they may understand the question. Is it completely capricious
from one PCT to another? What are they actually commissioning?
What services are they actually buying and how do they unify that?
Mr Tebbit: It has certainly been
variable, if not capricious, but, now that we have the NICE guidance,
there is a very clear exposition of what core services should
be provided for any given population. Since you were raising the
question about the Marie Curie nursing service, there are, for
the first time, and it is important it should not be underestimated,
in the NICE guidance recommendations that say that intensive support
at home should be provided and that that can be provided by a
range of services: social care, Marie Curie nursing; the specialist
community palliative care team, et cetera. What one would expect
in the future is for PCTs as commissioners to commission services
in accordance with the NICE guidance.
Mr Hughes-Hallett: That is what
you would expect but, sadly, if you live in Stockport today there
is now no longer a Marie Curie nursing service in a major area
of population because they have just cancelled our service level
agreement. They do not want our registered nurses and they are
simply going to go to health care assistants now and manage it
themselves. It is quite extraordinary. Is there a national guideline?
There may be NICE guidance but, sure as hell, it is not compulsory.
So you are still getting strange things in different PCTs and,
frankly very often I do not think people think it through. It
is often quite a junior commissioner with a very tight budget
who has got to save £30,000 somewhere who says, "Oh,
Marie Curie nursing services, £30,000", and off it goes.
Q126 Jim Dowd: You mentioned NICE
guidance and we have looked at that in other areas. There is confusion
as to whether that should be compulsory or whether it is just
a guideline. If it is just a guideline, people can take it or
leave it.
Dame Gill Oliver: This goes back
to the point I tried to make before. It is guidance but it will
only have teeth if it is translated into standards or quality
measures that can then be used to assess services that are delivered.
That is where the guidance will be and that is going to require
support and funding.
Q127 Jim Dowd: Is there any comprehensible
formula or rationale between PCTs and the way they buy palliative
care services, or is it just that they have X amount left and
they say, "We will have that"?
Mr Tebbit: There are no norms
of provision, if you like, that somebody might think should be
applied across the country. I do not believe there ever will be
and I do not believe they are desirable because the needs of different
populations vary so much. Indeed, if we take up the point that
the service model, although it may comprise certain core services,
needs overall to be flexible, if you like, in terms of the proportion
of each service in the mix, I would say the norms of provision
are a pipedream. What we must try to do is actually demonstrate,
and this is where the cancer network is going to be so important
and the palliative care networks within that. The palliative care
networks really should be the sole source of advice to the Cancer
Network Board on palliative care, its co-ordination and service
configuration, all of that. I think that is were we have to concentrate.
Q128 Jim Dowd: I stay with you, Mr
Tebbit, because you highlight the fact that only 1 per cent of
those with a non-cancer diagnosis have access to specialist community
teams. Then you state: "It is therefore highly probable that
such access needs to be considerably increased". I am not
quite sure of your use of the term "probable" there.
Do you mean desirable?
Mr Tebbit: I am the master of
understatement.
Q129 Jim Dowd: Beyond that, if I
can take that at face value, that presages an enormous increase
in resources, does it not?
Mr Tebbit: Yes, it does. I think
elsewhere in the evidence that we put to you we have made a suggestion
that we really need to pick up the NICE guidance, which is for
people with cancer, and say to all of those who have been developing
national service frameworks for other diseases and patient groups
that we have got this. In all probability, 90 odd per cent of
it will be absolutely applicable to your client patient group,
and so let us look at it; develop those elements of advice and
guidance that need to be additional to that; and cost it all for
your disease and patient group. We also suggest that, in order
to kick start the development of any services that would be applicable
to those different diseases and patient groups, the Department
of Health really has to find the same order of financial support
as it did with the extra £50 million for palliative care,
largely for cancer services.
Ms Shaw: I very much echo what
Peter Tebbit has been saying. I think in our evidence we ask for
a similar thing in different words. We couch this in terms of
a national development fund to extend the very relevant knowledge,
skills and expertise. It does need translating into different
diseases for different patient groups but there is a wealth of
knowledge and experience there. We would really be daft not to
learn from that and to try to extend it to people who have very
similar needs. Some of these needs are very similar: if you have
heart disease, you do not have one set of needs and a completely
different set if you have cancer or another illness. Lots of things
are held in common. We have to roll out that experience and those
skills and make them much more freely available to people. Help
the Hospices has a funding programme that is going to be made
available to hospices to help them develop projects in this area,
but that is only a start. A lot of good work is happening on the
ground. Hospices are increasingly making services available to
different disease groups: for example, Trinity Hospice here in
London has two specialist palliative care nurses that they fund
and who work in the local cardiac unit. The expertise is already
being exported and transported into another setting. Lots of work
needs to be done to think through how this would work in practice:
do the models need to be the same or do they need to be different?
All of that needs funding. Again, coming back to my familiar point,
it is all part of needing a national strategy. It also needs to
address how you make hospice and palliative care available to
people with all diseases and illnesses.
Q130 Mr Burstow: Mr Tebbit, you were
referring earlier to the role of cancer networks and the role
of the palliative care networks that are embedded within those
cancer networks. Would it be fair to say, if we are to move beyond
providing primarily palliative care for people with cancers, that
eventually one of the goals might be to see the palliative care
networks outgrow the cancer networks and in fact become separate
entities in their own right because they are covering many other
diseases?
Mr Tebbit: I think that may very
well be a longer term outcome but, for the moment, I would suggest
to you that, given the resources that there are available to cancer
networks, the managers and the structure, it is important that
the palliative care networks feed from that.
Q131 Mr Burstow: Let me pose it as
a devil's advocate question to you. Is there not a risk with that
that in fact what will happen is that we will continue to have
a situation where the focus remains on cancer services and there
will always be something more to be done in terms of delivering
services for cancer patients and never an opportunity to move
on to provide for other disease groups?
Mr Tebbit: I recognise that that
is a legitimate concern but one of my roles is to help support
palliative care networks across the county and I am involved in
providing support to about half of the 34 cancer networks at the
moment. One of the prime activities is to support them in their
role of doing population-based needs assessments. I have been
gratified to find that there is as much interest in doing an assessment
of the needs of people with non-cancer as with cancer. That is
a growing feature. Certainly, for our part on the National Council,
we want to promote that. We also want to identify where the palliative
care networks are making contacts and relationships with other
managed clinical networks for other disease and patient groups,
to identify that, to see how it works and to promote it if indeed
it is good practice and is producing good results. I am relatively
optimistic about it.
Q132 Dr Naysmith: Can I ask if it
has ever happened that someone with a terminal illness which is
not cancer is turned away because their diagnosis is not cancer?
Dr Wiles: No, I do not think so.
I think it is very important to recognise that different diseases
mean that patients have different needs. I think it is very important
we do not step outside our area of expertise. One of the commonest
non-cancer diseases the hospices became involved with was motor
neurone disease. That came from a study in Yorkshire, which demonstrated
that the skills needed to treat the symptoms that those patients
had matched what cancer patients had.
Q133 Dr Naysmith: I think it is clear
that some illnesses very closely mirror cancer type terminal illnesses.
Dr Wiles: They do. If hospices,
nursing and medical teams have the skills, I do not think they
would turn a patient away on the basis of diagnosis. They would
look at need. Some patients end up being cared for in a different
sector, not because the hospices do not want to take them but
because their needs can only be met in an acute medical environment,
and so it is patient need that dictates what they get and not
the diagnostic label.
Dame Gill Oliver: On this point
about sharing information and influencing others, Macmillan nurses
may be perceived as delivering care solely to cancer patients
but, in the survey that we did of our 2,000 plus Macmillan nurses,
between 10 and 30% of their case load is to non-cancer patients.
They are delivering that palliative and supportive care to people
who do not have a cancer diagnosis. With the education that has
been provided through additional money to district nurses, for
example, in palliative care, they will be looking after people
with all diagnoses, and so skilling up generalists—a point
made earlier on—is going to be really important, too.
Mr Hughes-Hallett: It is about
information too because in our 10 hospices we are allowed, under
our articles, to treat up to 10% of our patients in total who
do not have cancer. We have never got that and we would never
turn anyone away. It is quite interesting that, although you might
think we would be flooded with people with other diseases, it
is mainly CJD, renal and motor neurones that come to us, but very
rarely do we deal with people with heart problems. I think it
is about information. I think it is awareness of palliative care
being available that may be the issue here.
Q134 Dr Taylor: Quickly on that point,
do hospices, by and large, have a life expectancy limit as they
used to?
Ms Shaw: No. The average length
of stay is about 13 days. That is not to say that you can only
come here in the last week or the last day or the last hour, or
anything like that. There are no limited or restrictions in that
way.
Q135 Dr Taylor: I want to move on
to communication. We were horrified to read in I think it was
the Marie Curie evidence that one collector of doctors had seen
97 doctors during the course of his illness and that the average
is 32. Dr Wiles mentioned the difficulty with out-of-hours GPs
being brought in. What is communication like, communication between
the hospital and the Macmillan nurses, the hospital and the hospice?
Dame Gill Oliver: To give you
an example, yes, in some cases it is poor and patient care falls
down the middle because the information does not follow the patient.
I can give you an example from something that Macmillan has done.
We have a programme of rolling out what we call the Gold Standards
Framework, which is a toolkit for helping to support people to
stay at home at the end of their life. That means having joint
communications through out-of-hours doctors' co-operatives, GPs,
district nurses, social workers, whoever is involved with the
care of that patient. It is based on very simple things. It is
not rocket science. It is just having a register in a GP's practice
of everybody who has cancer of the spine at home, having a handover
sheet in the house so that the on-call doctor can go in and find
out exactly what drugs the patient is on, having the availability
of drugs, opiates for example, out of hours, and everybody in
the team knowing where they are. There is lots more information
if anybody wants it on the Gold Standards Framework. That is a
way of keeping the whole team together so that the knowledge is
inside everybody's head and the needs and wants of the person
who is dying at home are met.
Q136 Dr Taylor: Is the handover sheet
in the house common practice now?
Dame Gill Oliver: It is in the
Gold Standards Framework. Ideally it would be common practice
anywhere but we are rolling this out. This Gold Standards Framework
will be in over 1,000 GP practices by the end of the year.
Q137 Chairman: Can I take up an area
on which you have touched on several occasions, which is the relationship
between health and social care? If you have done your homework,
you will have realised that this Committee over the last two parliaments
has recommended an integrated health and social care system on
two occasions. There may be a difference with the current membership
but I think that fairly consistent theme has come over. I am interested
to explore in particular what evidence you have that differing
interpretations of continuing care criteria and protocols link
to confusion and delay in providing a holistic care service, and
also the issue of delayed discharge legislation, the way in which
palliative care is not covered.
Ms Shaw: On the second point first,
we did ask that hospice patients would be included within the
first raft of regulations under the Delayed Discharges Act, and
that in fact has not happened. We are doing a piece of work that
hopefully will throw some proper light on this. We are working
with a number of hospice services to record the point at which
patients are ready for discharge and then any delays in the process
and the reasons behind that. Unfortunately, I do not think we
will have the results of that during the timeframe of the Committee.
If we have early results, then of course we will make those available
to you. Anecdotally what we are hearing is that, rather as we
feared, the priority does seem to be going on discharging people
from acute hospitals because of their inclusion in the Delayed
Discharges Act. Of course there is the fear and the worry that
that means for hospice patients, for whom time is definitely not
on their side and who want to go home and be cared for at home
and die at home, that has to be arranged in very short order quite
often. We still have our original concern that, as long as hospice
patients are excluded from that piece of legislation, that discrepancy
will continue and the possibility of hospice patients being disadvantaged
in the discharge process will continue. If I could just say a
word or two about continuing care, we have done some work on this
area and we are collecting the current continuing care criteria.
That is a piece of work in progress. What we do hear is that some
strategic health authority criteria do have things in them that
make it more difficult to make these arrangements. The strongest
example is stringent limits of life expectancy. National guidance
says that should not happen but in practice it does still seem
to happen. This process cannot be activated unless you are within
the last six weeks of life or eight weeks or 11 weeks, or whatever
it might be. Although national guidance is indicating that should
not happen, it does still seem to be happening on the ground.
Therefore, that is a barrier to some effective discharges.
Q138 Chairman: It is worth making
the point that we are going to do a separate inquiry into continuing
care in the very near future. You may want to contribute to that.
Can I pin you down on the issue of health and social care? If
we had an integrated commissioner commissioning health and social
care, what difference would it make?
Ms Shaw: I think it would make
the whole process much more streamlined. It is something we certainly
would support. As we have said earlier in the session today, that
integration, that co-ordination, is fundamental, and that is what
we are all looking for. It is about what works best for the individual
patient and how is that care best co-ordinated. It seems to me
that idea of integrating health and social care commissioning
certainly would be a very valuable way forward.
Q139 Chairman: Would you feel it
might be a way of addressing the financial implications? People
seem to be on both sides of the fence arguing with each other.
One person would just get on with the job. I have never understood
quite why such an obvious policy development has been resisted
by successive governments. Have you any thoughts on that?
Mr Hughes-Hallett: I share your
views, Chairman.
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