Examination of Witnesses (Questions 340
- 359)
WEDNESDAY 26 MAY 2004
MISS MELANIE
JOHNSON MP AND
DR STEPHEN
LADYMAN MP
Q340 Mr Burstow: I can understand
and appreciate that, and that patchy nature is obviously an issue
in terms of ensuring equity of access which we were talking about
earlier on. That would imply that that is building up to a level
that would enable us to have a system providing primarily palliative
care still for the 95% of people with the cancers—25% of
people who have cancer—but what I am interested in finding
out is whether or not the Department has a programme of work that
will enable it to make an informed assessment of the cost of rolling
out services beyond cancer to other groups and over what sort
of timescale, given workforce constraints, that would be achievable.
Miss Johnson: We are setting standards
through the National Service Frameworks and through NICE in terms
of standards. We will be looking to make sure obviously that those
are being implemented at a local level. Until we have all of those
in place and until we have a better understanding of exactly what
the baseline is, the overall financial implications clearly cannot
be detailed, but clearly record amounts are going in by way of
annual growth into the NHS. Most of that money is going directly
to the PCTs to use for local purchasing, as you know, and we would
expect quite a lot of that to come out of the growth that is already
predicted and promised to the service in terms of increased funding.
Q341 Mr Burstow: Setting new standards
is, if you like, stage one. Maybe we should begin to work out
what the additional workforce implications of those standards
would be. What I am not clear about at the moment from the answers
I have heard is whether or not there is a programme that goes
beyond the standards to pricing up the consequences in terms of
expansion of training places, recruitment of additional staff
and the other costs associated with providing your ambition of
a palliative care service that goes beyond just providing for
cancer.
Miss Johnson: What we have done
in various areas is clearly already to put funding in to increase
the skills and training of the workforce. The £12 million
that was announced in December might not sound a huge amount of
money but when that is all being used on training it is a very
extensive amount of money to provide additional training across
the workforce, to provide a greater range of skills in our existing
workforce and to make sure that those skills are deployed to the
advantage of patients. What we are looking for in the future is
to make sure that patients are receiving the level of service
which is in line with the standards that we will be setting. We
do not have a set of figures, which is what I think you are looking
for, which say this amount will be X amount; that amount will
be Y amount.
Q342 Mr Burstow: I am more interested
in whether there is a sense of a programme of work within the
Department that ultimately would inform the Department about the
cost consequences of those standards.
Miss Johnson: There is a programme
of work obviously to achieve the improved standards and that programme
of work focuses on things like making sure that, where we identify
things like, for example, skills mix gaps or opportunities to
broaden the skills in a way which will help to support the service,
we are putting the funding in. Altogether, across palliative care,
together with the NOF funding, £119 million extra has gone
in which is a huge amount of extra gone in over the last few years
to support palliative care in its various manifestations. That
work is going on. I am sure it will continue to go on. Also, we
must recognise that a lot of the funding is at PCT level and it
will be through skilful and effective use of those funds in line
with the national standards and national guidelines that will
get the achievements that we are all looking for.
Q343 John Austin: Can I come to the
issue of equity? We have had evidence that the majority of ethnic
groups are under-represented amongst the persons receiving support
in hospices and in palliative care generally in the community.
With the hospices, there are some clearly explainable reasons
for that. Many of the hospices represent a particular cultural,
religious or faith ethos which might be not appropriate or relevant.
Is there anything which you can do through your funding mechanism
to ensure that palliative care services generally are accessible
to all members of the community?
Miss Johnson: One of the things
we want to do is to increase access generally to services. One
of those things is to recognise that some groups find it more
difficult to access services than others. We cannot assume that
it is equally easy for all groups to access a service in a particular
way. I think increasingly that has been recognised and taken up
in the diversity of the way in which services are being provided.
Increasingly, we try to make services available at as local a
level as possible with as much integration as the various parts
of provision. A good example just recently, on a tiny scale, is
the fact that there are integrated equipment stores, for example.
This might sound like something trivial but it is something major
in terms of the impact of getting equipment out to patients or
people in their own homes, for example, to support them being
there quickly and easily by a number of different professionals
working to support them. The whole integration of things, things
being more local to people wherever that is possible, and focused
on what they would like to receive by way of support or care in
the way in which they would like to provide it is the vision which
we are trying to implement as fully as we can in what we are doing.
Q344 John Austin: Hopefully consultation
is going on at a local level with black and minority ethnic communities.
Is the Department itself engaged in that kind of consultation
at a national level?
Miss Johnson: There are specific
things like extra funding that have gone into certain groups to
do some of the work that I think you are talking about. Also,
I know from a lot of the work that I have done on health inequalities
that there is a lot of work going on at a local level with particular
communities who have particular health needs, often led by those
within the communities or working very closely with those within
those communities on getting the provision right. There are particular
needs on things like coronary heart disease, diabetes and other
chronic conditions. That work is going on on a local basis often
within the national standards and frameworks. I think that is
probably the best way for most of it to go on but we will and
are increasingly checking on the progress on things like health
inequalities at a PCT level. That will pick up a lot of the issues
over the next few years about what progress is being made on this
particular aspect of health inequalities as well as on a wider
platform of health inequalities.
Dr Ladyman: Shifting the balance
of power is only a few years old as a policy. Empowering local
areas to make local decisions has not been in place for that long.
PCTs have a clear responsibility to reflect the needs of their
local communities, including the black, minority, ethnic communities,
but much of the infrastructure that the Committee is talking about
at the moment was planned and built well before shifting the balance
of power came along. Over a period of time, we would expect to
see the strategies being put in place, whether it is for adult
palliative care or for children's palliative care, to reflect
the needs of local communities much more clearly as a result of
the decisions being made locally. So far as black, minority, ethnic
issues are concerned generally, the permanent secretary, the chief
executive of the NHS, Sir Nigel Crisp, has recently announced
that the equality for black and minority ethnic communities within
NHS services is going to be one of the priorities across the piece,
not just the palliative care, but looking at all the ways services
across the board are being delivered.
Miss Johnson: Not only have the
PCTs only been in place for a little time but I think we have
to recognise that there is a huge potential value in allowing
them to develop and mature and do the sorts of things that can
really only be done on the basis of local knowledge and understanding.
We are making rapid progress along that path, considering that
they are very young organisations. The danger is that people wish
to have a simple, national answer to things which cuts across
the thrust of that and does not allow the value of that development
to really develop and show its true mettle. I think it does have
huge potential. We must not be cowardly in giving it a little
bit of time to make sure that those developments really can show
the outcomes for people on a local basis that I think they really
can.
Q345 John Austin: I think that is
absolutely right. They have to be locally designed and owned.
There is not one, simple solution for every community and area,
but there are things that we can learn from those who have gone
through that process. I wonder if you can point the Committee
in the direction of any PCTs or areas where you think there is
some very good work being done, pioneering work, in rolling out
the services to black, minority, ethnic communities.
Miss Johnson: I mentioned packages
of equipment. The Beds and Luton Community Equipment Service,
for example, is doing a fantastic job on delivering within four
hours if necessary a package of equipment to enable somebody to
return home from hospital if they wish and, when it is no longer
necessary, they will take the equipment away in a careful, sensitive
way. Those are the sorts of developments that are making a huge
difference. When we think that we have, for example, from the
work that has gone on on delayed discharge improvements, the equivalent
of eight extra hospitals freed up by that work in terms of the
numbers of beds available extra per year, that is eight extra
hospitals as it were out of that. I think we can see there is
a huge potential for a better use of some of the money by working
on some of these really quite simple things that might appear
to be not rocket science but have never somehow happened in the
past, but which are now happening, and which will not only lead
to better outcomes for patients but a much more effective use
of the money that we are putting into the health service as well.
Q346 Mr Amess: There can be little
doubt that when someone has cancer diagnosed it can be traumatic
for the person concerned and obviously their relatives. When treatment
is delivered, that can be very stressful. I suppose not only the
patient but their loved ones are looking for some sort of reassurance
and communication is absolutely fundamental. We were given a memorandum
from the Health Service Commissioner for England and she suggested
that the lack of effective communication "is the most common
cause of concern among patients and can have a devastating effect."
What steps are the government taking at the moment to be more
responsive to the views of carers and patients on this specific
issue of communication?
Miss Johnson: I am not sure whether
you mean communication about things as things go on or communication
about the initial diagnosis.
Chairman: As things go on.
Q347 Mr Amess: As the disease progresses,
what treatment is available and the anxiety if the pain is not
controlled in the wee hours of the morning. If somebody says,
"Help", what can be done?
Miss Johnson: I think that is
where this much greater spread of skills and a different mix of
people available to support people, for example, in their own
homes is absolutely crucial. In a way, what you are talking about
there is not really particularly, with respect, about communication.
It is about responsiveness to what could be a rapidly developing
and difficult situation.
Q348 Mr Amess: When the relatives
might have a meeting with whoever is charged with looking after
the patient, there does not seem to always be preparation of what
will follow. For instance, hair will fall out. You will lose appetite.
I mean communication in that sense as well.
Miss Johnson: In some areas we
have this very well done and in other areas I am sure there is
progress to be made. I would not wish to pretend again that we
have perfection across the board but in many areas, particularly
in relation to cancer again, which I appreciate is not the only
issue by any means in this inquiry, we are doing very well in
some areas, absolutely excellently indeed in some areas of cancer,
rather than some geographical areas. We are trying to get to the
same position for all cancers including some of the less glamorous,
less commonly occurring ones too. The support is there in many
areas but there is an increasing focus on communications training
work as well with doctors, with those who are working in the community
and in terms of general support, for example, in care homes as
well. Macmillan, supported by the Department of Health, have recently
issued a "Foundation in Palliative Care", a programme
of facilitated learning for care home staff. There are a number
of initiatives going on across the piece. That piece involves
principles that would be most beneficial to care home staff like
communication, pain and symptom management, which you also mentioned,
bereavement care and reinforcing the principle that dying people's
wishes must be valued and respected. That can be applied across
the piece, whether it is focused initially on cancer patients
or not. Obviously, that is Macmillan's broad focus but it will,
in a care home setting, apply potentially to any resident that
the care home staff are supporting. We do recognise that more
advanced communication skills are needed. Doctors have increasingly
recognised that communication skills are a crucial part of their
job and need to be developed. A lot of the good practice that
exists in the area of cancer again needs to be spread more widely,
both across the remaining areas of cancer provision and much more
widely into some of the other services. If you talk to people
who are providing, for example, specialist nursing for some of
the chronic conditions, there are a lot of people now trained
who are providing, sometimes through the voluntary sector and
through some of the national organisations supporting people,
absolutely excellent standards of support for patients. I think
it is those models that we need to make sure are main streamed
across the NHS.
Dr Ladyman: It is about identifying
best practice and making sure that everybody is following it,
especially with children, and realising that we need to learn
to communicate with children better. Clearly, you will often be
communicating with parents or guardians in this regard, remembering
that, with the initial communication, they will probably be shell
shocked. They will not take it in. Best practice is about making
sure that there is somebody for you to go back to when you have
had a chance to absorb the message and to go through all those
things that you need to be aware of and to spend some quality
time. That almost certainly will not be the doctor, after that
point. It will probably be a specialist nurse or a counsellor,
somebody with the time to go through these issues with you, making
sure that there are other opportunities. NHS directives seem to
be increasingly popular with people who just have an immediate
question in the middle of the night about something that is happening
and want that little bit of advice and reassurance. It is about
identifying best practice and making sure everybody is following
it. Increasingly, in terms of children's care, it is happening
but you can always do more.
Q349 Mr Amess: If you cannot respond
to this first question, perhaps you might write to the Committee.
Last year, a briefing paper was published by the Association of
Palliative Medicine and the National Council for Hospice Specialist
Palliative Care Services. In it, it said, "The law in its
present form needs no change for comprehensive and effective management
of distress and agitation." I am now talking about when the
relatives become agitated because their loved one seems to be
in pain. "This includes high doses of analgesia and sedation
at any stage of disease which is safe and effective if given by
personnel properly trained in specialist palliative care. Otherwise,
it is misleading and mischievous." These are the critical
moments when the patient is in pain. It is absolutely essential
that the medication that is administered is in complete accordance
with the guidance. I do not know if the Department has had a chance
to look at this and whether you could comment.
Miss Johnson: I am sure the Department
has but I certainly have not had a chance to look at it. I would
be very happy to send you a comment.
Dr Ladyman: The Expert Patient
Programme is something that would be of importance there. We are
increasingly looking at what opportunities there are for self-medication,
but it has to be done in accordance with the medication programme.
There are other schemes as well. One was piloted, off the top
of my head, I think it was in the Portsmouth area—certainly
in that part of the country somewhere—where a home care
company was commissioned to deliver a lot of this medicine for
people at home, as a way of providing an extra tool in the armoury
for people providing palliative care.
Q350 Mr Amess: The doctor/patient
relationship, when it is not good—and this does happen—is
most frequently strained when the patient has limited confidence
in their doctor's skills or motivations. Interestingly, this mistrust
is a common complaint of those seeking euthanasia and includes
poor care, inadequate diagnosis of treatment and poor skills in
symptom control. How is the government working with the palliative
care sector to counter this unfortunate mistrust that happens
on occasions?
Miss Johnson: Euthanasia is not
legal in the UK, so far as I am aware. This is not a subject that
has come across my desk.
Q351 Mr Amess: It is something that
bubbles up in the House of Lords from time to time and never reaches
the air.
Dr Ladyman: In terms of the training
of doctors, you will need to take evidence from the royal colleges
but I can tell you that a huge, significant part of the training
of doctors is about communication techniques. Clearly, it goes
wrong from time to time. We all know how conversations can go
wrong because they are bipartite. There is somebody talking and
somebody listening. If you are not in the right mood to listen
and you do not like what the other person is saying, the conversations
frequently go wrong. That is an issue which no amount of training
can deal with completely. All we can do as a Department is make
sure that we are working with the royal colleges and others to
make sure that everybody is being properly trained, that everybody
understands what best practice is, that if people go away from
conversations unsatisfied they have another opportunity to go
back to either a different person or a different structure or
the same person and get another bite of the cherry until they
understand it. Let us not kid ourselves that it is ever going
to be 100% right, especially when people are seeking a procedure
which, as Melanie says, is illegal and which the doctor is not
in a position to grant, even if he or she wanted to.
Miss Johnson: On the subject of
communication and skills in our doctor community, not in relation
to euthanasia issues but in relation more generally, there is
a discussion that it would be useful to have possibly with those
who are responsible for postgraduate and doctor training. Talking
to them might be an avenue in which some of these issues could
be explored. The Committee will be aware that the Department does
not set the content down. It is set down by the royal colleges
and by those responsible for the postgraduate training arrangements
as well. There is an increasing recognition that palliative care
is important in all of this. Could I make one brief point that
relates to the question of inequalities and also the communication
things which I should have made earlier? Cancer BACUP last year
launched a cancer in your language service which offers 12 additional,
national, free phone help lines specifically for speakers with
the most common ethnic minority languages. That gives you an interpreter
for the language who can link up with a cancer BACUP nurse and
they are able to answer questions on any of the cancers for example.
That is a sort of development again which is very positive in
providing a lot of extra support.
Q352 Chairman: One of the issues
where this Committee has been consistent over two separate Parliaments
and two separate memberships, except for two or three of us, is
the need for integrated health and social care in the system.
You have heard me talk about it previously. What has come across
very strongly in this inquiry is the real frustration when you
have somebody who may be returning home to die and there is, in
the last few days of life, an argument between health and social
care as to who is responsible for providing a service to care
for that person and to support their carers in the process of
them dying. I think it is frankly inexcusable that we cannot,
when a person is dying, offer a service that does not have these
boundary disputes. I do not know what we will recommend but I
have a good idea. You have a good idea but is it not about time
we buried the hatchet and had a proper, integrated system where
there is not an argument between suits on both sides of the fence
as to who is going to pay for this and not an argument about whether
the service is means tested or not or whether they are health
or nursing care? It is ludicrous, particularly when a person is
dying.
Dr Ladyman: You are absolutely
right and that is exactly why we have started the process of writing
a new vision for adult social care. I hope the Committee will
have some comments that will feed into that. You need to produce
your comments very quickly to get into the first draft of it.
One of the things I have made absolutely clear in setting out
my ideas about what needs to be in that vision is this issue of
seamless services. The person receiving services does not give
a hoot whether they are being delivered by the local council or
by the NHS. They just want their services and they want them delivered
efficiently with high quality.
Q353 John Austin: They do care if
they are charged for the service.
Dr Ladyman: They do care if they
are charged for the services and that is why it is important that
we deal with the issues around NHS continuing care, get the criteria
sorted out and get the assessments carried out properly. That
is why we have introduced the single assessment process to make
sure that everybody is automatically assessed now for NHS continuing
care before we determine that they have social care. There is
a whole range of issues there that the vision has to take into
account. I absolutely agree with you but do not, on the other
hand, just think that there is a magic wand that you can wave
to sort this out, because there is a part of the United Kingdom
where health and social care still are in one structure and that
is Northern Ireland. When I speak to people from Northern Ireland
who do all this work there, I am told it is even worse there than
it is in England. What it comes down to in many cases is the way
individuals are working, the way individual teams are working,
the way people's attitudes are to partnership working, what people's
motivations are in delivering services. It is not entirely about
structures. One of the things that we are going to have to address
is: is the Northern Ireland model the right model? Is the care
trust model the right model? Are Health Act flexibilities the
right model? Is there some other model that we have not explored
yet that is more appropriate. Those are the things that I very
much want the vision document to address and encourage anybody
individually or as a Committee to contribute to that consultation.
Q354 Chairman: Perhaps you would
be good enough to look at two previous reports that we have produced
which recommended to government an integrated health and social
care system. The real worry is that, when you are dealing with
a dying person, you cannot differentiate where the nursing care
stops and social care begins and people are having to do that.
I would challenge you to tell me what is the division.
Dr Ladyman: With the greatest
respect, if somebody is dying in that way they are eligible for
NHS continuing care and social services are not in the picture.
The NHS will pay the bills and do all the work.
Q355 Chairman: Perhaps the message
needs to be put across because certainly we have had examples
of witnesses sat at the table saying that these boundaries are
still happening and, to me, it is long overdue that we fundamentally
change our approach because I think it is inexcusable.
Dr Ladyman: I would welcome evidence
as opposed to anecdotal evidence that it is still happening because
it does need to be rooted out. That is why we are going through
the process, following on from the Coughlin judgment, of making
sure criteria are reviewed.
Chairman: It might be helpful for you
to study the record of our witnesses because the evidence came
from them.
Q356 Mr Burstow: The Coughlin judgment
is a good point to come on to because one of the things we have
had in evidence on this inquiry has been about the way in which
the eligibility criteria and the assessment tools that are being
used up and down the country are inconsistent, one with another,
to the extent that it means that in one part of the country may
be eligible for NHS continuing care at an earlier stage in the
trajectory of their condition compared to another part of the
country. Is this something the Department is alive to? What work
is the Department doing to ensure consistency of NHS criteria
for access to NHS funding?
Dr Ladyman: It is absolutely something
that we are focused on. It is something that we are looking at
very closely. With the greatest of respect to the witnesses who
told you that, they may be talking about historical problems but
they have no way of knowing whether the work done since the Coughlin
judgment has fixed the problems yet, because nobody has done that
work. The eligibility criteria in the different strategic health
authority areas has only just been reviewed. They have only just
been pulled together. They are now going through the process,
as you are aware, of assessing people against those criteria.
Until we have carried out an analysis of how that is working,
none of us will know whether it is consistent across the piece.
Q357 Mr Burstow: Are you saying the
Department is undertaking its own evaluation of both the criteria
and the assessment tools that are being used?
Miss Johnson: Strategic health
authorities have recently reviewed the criteria and they are checking
that with their advisers.
Q358 Mr Burstow: I know that is happening
and it is very useful to be aware of that but what I wanted to
clarify was whether or not the Department was in turn looking
at and comparing SHAs' criteria and the assessment tools that
PCTs are using to translate those criteria into meaningful terms.
Dr Ladyman: There are two pieces
of work, in my view, that have to be done. First of all, we have
to look at the criteria. Each of those strategic health authority
produced criteria is based on guidance from the centre as to what
they are supposed to look at. They ought not to be diverging too
greatly. We need to look at that to see whether they are diverging.
I have asked officials to start doing that analysis. That is underway
at the moment. Secondly, we have to ask ourselves how those criteria
are then being interpreted locally and whether that is creating
any divergence. Of course, the best way to do that would be to
look at the assessments that are being made as a result of those
people who have asked for a fresh assessment as a result of the
Coughlin judgment. That is still ongoing and, yes, we will be
looking at that. We will be looking at those figures as well and
coming up with a view as to whether we are getting consistent
answers everywhere. That work is not completed yet.
Q359 Chairman: To come back to the
answer to me earlier on about the agreement that the NHS will
fund somebody's care who is dying at home, information passed
to me is that in practical terms, in a part of west London that
we were aware of, merely dying does not qualify necessarily for
NHS continuing care. You have to be dying fast enough—in
other words, within two weeks. This is the policy since April
adopted in that part of west London. That, to me, does not address
the point that I was making earlier on. How do you determine whether
a person is going to die in two weeks?
Dr Ladyman: First of all, you
bring that evidence out. I am not going to comment on the specific
example because I do not know whether that is accurate or not.
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