Examination of Witnesses (Questions 100
- 119)
THURSDAY 22 APRIL 2004
DAME GILL
OLIVER, MS
CHRISTINE SHAW,
MR PETER
TEBBIT, DR
JOHN WILES
AND MR
TOM HUGHES-HALLETT
Q100 Mr Amess: Mr Tebbit and Dr Wiles,
as you answer this, could you also touch on how you see recruitment
being achieved in terms of this new service that we have? Do you
think you will be able to get the extra staff that we will need,
or do you think the staff is already there?
Mr Tebbit: Responding firstly
to the central question, firstly the National Council would support
absolutely the approach that Marie Curie is making, but I would
suggest to you that in the end it is going to be a question of
resources and it will require, it seems to me, a shift of resources
from hospital acute care into the community. It is really only
PCTs as commissioners who will be able to effect that particular
change and I would suggest that that is quite a challenge for
PCTs. With respect to the question about recruitment, provided
that these extra services for people in the home are supervised
appropriately, we are not talking in the main about highly specialised
members of staff. The Hospice at Home scheme is a beautiful example
which is professionally supervised but many of these schemes have
trained volunteers who go into the home, so I would not see it
necessarily as a problem.
Dr Wiles: Firstly, the medical
component of palliative care can be delivered in any care setting,
so whether the patient is at home or not does not have a major
impact on the skills that can be delivered to patient. I think
we can deliver good medical practice in the home , in hospital,
hospice or nursing home. So the setting does not determine the
skill. The problem of recruitment and manpower is a problem in
palliative medicine. We have a limited number of people who are
stretched to meet a cancer-focused palliative care agenda, and
yet there is an expectation to widen that to non cancer, cardiac
disease, respiratory disease, and neurological disease. I am not
sure we have not got the manpower to say we can easily do that,
so I think we would have to restructure and look at the model
and the way we work if we are going to achieve good palliative
care across a much wider spectrum. Historically palliative care
has been cancer-focused. There is no particular reason for that
but that is the model that started, and much of it is delivered
in the independent charitable sector through independent hospices
which are set up by the enthusiasm of individuals. I helped establish
a hospice in the north of England and it is still there, and it
was there because I was there and not for any other reason, but
I think that history makes co-ordinating care across the country
very difficult, because on the historical basis there is no logic
of where hospices are.We are going to have to look at how we redistribute
the care to meet the needs of patients when we have a completely
random historical basis of where services have been established.
Q101 Mr Bradley: Could I go back
very briefly on the research you have done on the comparative
costs between dying at home and dying in hospital? I have not
seen the report so, again, we need to look at that more carefully
but are you saying that you are comparing the costs and saying
how much it costs in a hospital as opposed to at home, or are
you saying that those costs could be transferred between a hospital
and at home? From my limited knowledge of this, I see many people
in my local hospital dying on acute wards and it may be less costly
for them to be cared for at home but it does not stop the costs
of the provision within that acute ward—the nurses, the
beds, the infrastructure—because those beds are filled again
with acute patients. So could I be clear about where the costs
and savings come from?
Mr Hughes-Hallett: Sadly I do
not think we are talking about a direct saving because health
is now provided very locally, decisions are taken very locally,
so waving the magic wand and transferring the money from the acute
hospital into the PCT and community care is too much to hope for.
So what we are really saying is, through an investment of slightly
less than £100 million a year in the community in PCTs, £200
million will be released in the hospital system for hips and so
on. It is a creation of additional investment, in other words,
inside a hospital setting. I will certainly provide you with the
copies of the report.
Q102 Chairman: Could I press you
further on one issue arising from your survey and the assumptions
based on your survey? I think we all accept that the direction
you are proposing makes sense but if you are moving in that direction,
was any assumption made, any estimate, of the cost savings arising
as a consequence of unpaid carers' efforts, usually unpaid female
carers' efforts? I can recall seeing various suggestions as to
what the unpaid carers at home were saving the state. Was that
factored in at all?
Mr Hughes-Hallett: Specifically
not. One of the inequities we believe is that it should be factored
in but at the moment there is no legislation to provide for that,
and it seems bizarre to me that when one of our staff in Newcastle
recently had to go off and support his mother, he had to report
long-term sick himself ,which is a scandal—ridiculous. That
support for carers in legislation is not there at the moment and
it needs to be.
Q103 Chairman: Just taking that a
stage further, obviously a carer is entitled to a carers' statutory
assessment of their own circumstances. Does this happen in a palliative
care situation, and if not, why not? If you have somebody who
has been in a hospice where the decision is made for that person
to go home, they know they are going to die at some point, it
could be within a month, six weeks—whatever, is there ever
a formal assessment of that carer's capabilities in such circumstances?
Dame Gill Oliver: You are absolutely
right, the needs and wants of carers have been sadly neglected
and they mirror to a large extent the needs and wants of the patients
themselves. We know they do provide a huge amount of unrecognised
care very often, but you mention particularly access to benefits.
There is a wide range of benefits available but people do not
know how to access them. It is a very convoluted and complex exercise
and certainly within Macmillan we are looking to launch a campaign
on the cost of cancer which will help to signpost people towards
benefits so that they can find their way through the maze of statutory
benefits but see what they may be entitled to, and a number of
carers are entitled to benefits they know nothing about. As well
as needing benefits carers will have the same needs and wants
as the people they are looking after at home.
Ms Shaw: I would like to draw
the Committee's attention to our written evidence where you will
see examples of experience on this question and others in Canada.
One of the things we were very impressed by, introduced I believe
just at the beginning of this year, is compassionate leave for
carers, and we would urge the Committee to pay attention to that
and see whether that is something that might have implications
here in the United Kingdom. This works in a very flexible way,
for a period of six weeks, it does not have to be the same person;
a range of family members or friends can have paid leave from
work in order to be able to care for people at the end of life,
and I think some of these benefits in Canada have come about through
having a national strategy, which we also urge you to consider,
and having the political support at a high level to allow the
joined-up care that we have been talking about already but also
to address these wider issues that are not simply about provision
of what you might call directly palliative care to people, whether
at home or in a care home or in hospital, but across a wide range
of needs that people face as they enter the last period of their
lives.
Mr Tebbit: One thing that is required
in order to make sure that patients and their families have good
palliative care is for the generalists, ie not the specialists
in palliative care, to be able to assess the patient's and carer's
needs over the full range of potential domain of need, so it is
not just physical, it is psychological, it is social—which
is what we are touching on here—and it is also spiritual.
I would suggest to you that most professionals are pretty good
at the physical, less good at psychological, and the social often
does not enter into it perhaps also because the patient themselves
does not feel that it is something that they can legitimately
discuss with their principal medical carer, so there are possibly
two ways of dealing with this. One is if we had a common assessment
tool that could be used right across the country, and people are
inventing these all over the place, it would save a lot of time
and energy if we had one model which could be adapted for local
use, and the second point is that we are very good at mapping
out patient pathways but we do not map out carer pathways and
if we did that, if we had a carer pathway that alerted an individual
practitioner to the needs of carers at particular key points,
like the point of diagnosis and like the point when perhaps it
is judged that there is no cure, those two would be extraordinarily
helpful.
Dr Wiles: It is very important
to recognise that the timeframe in which some of these things
have to happen impacts on patient care, and although we have a
system that occasionally works extremely well,the delays are sometimes
in getting people to make the assessment in the timeframe the
patient has. If the patient wants to get home from hospital to
die and that is their choice then quite often the process of supporting
them in doing that slows the whole thing down and then the patient
is too ill to move. So I think sometimes when the patient wants
to go, and it could be achieved, the process is not responsive
enough.
Q104 Chairman: Just generally, picking
up David's theme, and I raised this I think in the first session
we had a few weeks ago, what is your view of where we are at as
a society on the issue of addressing death in the home? Certainly
as a kid growing up in the 1950s we were more open about death
and dying than we are now—and everyone is nodding so presumably
people agree with that. How do we get back to that more open attitude
and a greater acceptance of death tied in with the philosophy
of moving more towards dying at home?
Dame Gill Oliver: You are right,
and it is important that we build on the change that is beginning
to enable people to talk more openly about death. It is not a
dinner table conversation. If you start talking about death or
dying at home people will tend to stop talking. We need to support
and help professionals to engage in those sort of conversations
and it may mean professionals need to work in a different way.
We need to look at the training and support we can provide for
professionals, and how they can work in greater partnership with
families and people affected by cancer. We are increasingly hearing
about increased user involvement—we would like to say that
that is increased user and carer involvement—in discussions
about death and dying, and some of the trickier ethical and moral
issues about withdrawing treatment or making decisions about advanced
directives or living wills, for example, are topics that professionals
find it very difficult to engage in discussion about with families,
so training and support and help will be really important for
them.
Ms Shaw: I absolutely agree with
the point you are making, and from the nods round the table one
can tell there is a wide acceptance of that. It is really important.
One of the fundamental challenges, and what we are asking for
in an end-of-life strategy, is this public education question;
that we move from the position we are now in to one in which it
is much more acceptable to talk about death and dying. None of
us goes through life without encountering death and loss and yet
that is hidden in people's lives and it is not acceptable to talk
about it. Some of the public education tools and methods that
are present in other sectors could be useful to us. If you look
at the Stop Smoking campaign for example, clearly that is a question
of large resources to make people aware of the issues and to take
them forward and have a way of changing the climate of debate,
but examples like that we could perhaps learn from and use in
this sector. It has to be both locally in communities and more
broadly in the public arena. Many hospices are good vehicles for
this too because, alongside the great care they provide, they
are a way of communities looking at death and loss and bereavement
and it happens a lot informally. So we need to capitalise on that
great resource as well.
Q105 Chairman: Do you have any views
on the role of the education system here, because in schools not
a great deal is said about death and how we view it, it seems
to me.
Ms Shaw: We have just produced
a pack for hospices to use in schools as part of the national
curriculum, particularly aimed at 11-14 year olds, looking at
what hospice care is, what it can provide, what happens when somebody
dies, and what the whole process of bereavement is like,.That
is only a small step and I am not making great claims for that
but that is the kind of thing we need to do more widely. Clearly
it is sensitive and both staff and pupils need to be supported
through that process. It is not very easy and so more needs to
be done.
Mr Hughes-Hallett: I always think
role models are very important for this, and you may think this
is trite but I think if something like an episode of Casualty
had in it someone dying well at home it would have an extraordinary
effect. Websites, leaflets, etc, are a help but they tend not
to get to people who currently are facing difficulty. What we
need to do is get across to people that it is okay to die at home.
We come across this in our work over and over again where we go
into people's homes with our nurses right at the end of their
life and they say, "If only we had known earlier in the journey
that we could have achieved this death, the journey itself would
have been so much better". It is partly information, partly
knowledge and partly public awareness at every level of death
at home being very dignified and okay.
Dame Gill Oliver: Going back to
education, getting information and education to children is really
important and from a very young age they can take on certain concepts
and principles, and Macmillan has a project called Cancer Talk
which is in thousands of schools doing just that. I think that
is important. Secondly, people and children do not just learn
in schools. There are other areas; it is wherever they go that
that information needs to be and if children and young people
are in youth clubs or wherever, that is where we need to get the
message.
Q106 Chairman: But are teachers prepared
for talking about this? I have a vivid memory which is that probably
when I was about nine, you remember at school on a Monday you
had to give your news from the weekend, and my news was that I
had been to a great aunt's funeral, and I had seen this dead body
and heard this conversation between the undertaker and my mother
about the difficulties getting her teeth in! The teacher just
dried up—she could not handle it—and I thought what
had I done? So are teachers prepared?
Dame Gill Oliver: No, they are
not, and that is what we have to do in terms of the projects that
we produce. We need to involve teachers, and it is about teaching
teachers first and then looking at how those subjects can be brought
up in the classroom. But the situation you describe is absolutely
right. We are afraid of almost trivialising death. You made almost
a joke about death and that is not really very acceptable, but
should it not be, if that is a way in and if that is a way to
help people understand that everybody is going to die and it is
a part of living but today, in the 21st century, people could
get to the age of 50 and may not have experienced death at all,
whereas back in Victorian times death was familiar to everybody.
If Grandma died she was in the front parlour and everybody came
to see her, but that does not happen any more. Death is hidden;
not talked about, and we have to somehow change that. I am not
suggesting we ought to go back to Victorian times but we need
to make it a topic of conversation so people feel comfortable
with it.
Q107 Jim Dowd: In the hedonistic
world we live in death is so unfashionable. I wanted to examine,
emphasising the issue of death at home, what your estimation is,
and it can only be that, of the reaction to family members to
death at home? Is that a disincentive? We have looked at the figures
which say that 56% of people want to die at home but only 25%
do, and we are trying to examine why there is this discrepancy,
and I was trying to examine the attitude of family members to
having somebody die at home rather than the individual. The principal
decision ought to be with the individual but clearly there is
pressure from carers and loved ones to be brought into the equation.
Is there a resistance among them which depresses that figure?
Mr Hughes-Hallett: I think it
would be lying to say that there is not sometimes resistance.
Chris in her hospice organisation and we in our hospices do everything
we can to support the carers in making that key decision of allowing
their loved one to leave the hospice and get them home, and part
of our role is to get relatives to understand that it is going
to be all right and that it is not going to be frightening, because
I do not think we can get away from this fear of death. The thought
of taking Mum home and not really knowing what is going to happen
is rather frightening, but that fear is greatly exacerbated if
the independent hospice, the Macmillan nurse or the Marie Curie
hospice cannot say to you "There will definitely be support
there when you get home." Sadly, I would love to say that
there was always a Marie Curie nurse or Macmillan nurse available
to support someone when they go home but it is not the case because
of the extraordinary inequities that exist within the United Kingdom
and in England in terms of different levels of service level agreement
between one county and the next. I have got them all here in front
of me. You just better make sure you live in the right part of
Yorkshire if you want to die at home because if you live in the
north west you are not going to make it. I can give you statistics
later, but North Yorkshire has a population of 886,000 people
and we were asked to provide 20,500 nursing hours last year. West
Yorkshire has a population of 2.3 million and we were asked to
provide 11,000 nursing hours. You are not going to take your mum
home if there is no support, so you have to get commissioners
to recognise that death is just as important as birth and health,
and until that is done none of this is going to happen.
Dr Wiles: That is a key point.
We talk about the patient's wishes to go home but it is the carer
that needs to have the capacity to understand why that is important,
and have the capacity to do it. Some relatives can deal with it
with support or without; others occasionally cannot at all and
there are two different agendas. The first request is what does
the patient wish and the second is whether there is a capacity
to deliver it both from the professional support point of view,
which is vital, and to reassure people that the patient will be
pain free, will get good care, nursing and medical, but also whether
the relative has still got the capacity even when that occurs
to deal with it emotionally. Some people have not, and that has
the potential for people to die in hospital, go back into hospital,
or into a hospice bed because the relative is saying "I cannot
deal with this emotionally". One relative said "If he
dies at home I will not ever be able to go in that room again".
If that is the price it is too high and we have to give that patient
good care in another setting.
Q108 Dr Naysmith: So who takes that
decision and what is the best practice on it? What tends to happen
now?
Dr Wiles: Presumably if the patient
wishes to be at home and you are going to say that is not achievable
you need to be talking to the patient about what their expectation
is and say, "But have you ever thought your wife or son or
daughter is saying they cannot do that for you? Can we compromise
on your wish and their ability? Or can we give them more support
so they compromise and say `Well, I will give it a try'?"
There is always a balance and it is not right for the carer to
dictate alone nor the patient.
Dame Gill Oliver: That is absolutely
right. What you said was would somebody be scared and, yes, they
can be and we know that from talking to large numbers available,
but the important thing is that it is a team approach. It is carers,
patients and professionals, and there is a degree of need for
education of carers as well. There are self-help and support groups
for carers just as there are for patients and learning from other
people, so there are learning needs around for discussing openly
with the team of people who are involved so they can come to a
common solution, but the care and support that carers need, in
that instance and making that decision, is crucial.
Q109 Jim Dowd: Has not the traditional
pattern when people have encountered this been that they get intensive
care at home to make their time at home as helpful as possible
but in extremis they are then admitted to the hospice, effectively
to die?
Dame Gill Oliver: That does happen
but if the team is in possession of all the facts, everybody is
open and all the information is shared, then you should be thinking
ahead all the time so that the plan is made, and hopefully, if
everything works and if all the care and support is in place,
then there should not be a need for a crisis admission right at
the end of life.
Mr Hughes-Hallett: Can I simplify
this because I think very often when we talk in structural terms
we lose the human sense of this and how simple it can be. I would
like to tell you about someone I met yesterday, who I will just
call Bill for these purposes, in a hospice in the Midlands. He
is single man, an ex football referee, the most lovely man, in
an advanced stage of cancer. The only person who matters in his
life is George, and George happens to be an Irish setter. His
best friend is his ballroom dancing partner. Bill will either
die in our hospice or at home. We are working our butts off to
get him home on Friday. If he gets home he will see George ; if
he does not, we will bring George into the hospice to meet him.
The important thing is he may get home and then be re-admitted
to the hospice, but that would be a fine death. He knows the hospice,
he knows home. The one thing that must not happen to Frank is
that he gets home and there is not sufficient support at home
so that at the 11th hour he ends up in the A&E admissions
unit of the local hospital. That is the one thing that must not
happen. In the time that we are talking here today, 41 of your
constituents will die of cancer in hospital, half of whom wanted
to die at home. This is so pressing that my worry is that, coming
out of this Committee is all the emphasis that is going on at
the moment with a lot more thinking and a lot more planning, but
you only get one crack at dying and it has to be good, which is
why we recommend so strongly to you that we really want to see
pilots now being developed, and the Marie Curie Centre has identified
five nationally that we would like to work on, with Help the Hospices,
Macmillan, the Department of Health and everybody else, to try
out some of these ways of helping carers, providing better information
and being a bit radical—because we cannot wait. These people
are dying all the time.
Ms Shaw: I wanted to add a different
dimension to this as well. It is a very important personal point
about the balance of patients and carers' wishes but just think
for a moment about the case of children and palliative care, which
we have not touched on yet. For many children the absolute choice
for them and their parents and families is to die at home, and
in a large number of circumstances that is what is possible. It
is made possible by precisely the kind of things that Gill has
been talking about where you can orchestrate the care, provide
it in the person's own home, and with support and respite provided
from a children's hospice very often. It is very important that
in thinking about this we think about adults and children too.
Also, clearly, it is very important the support is there for carers
but very often what you hear when you speak to carers is yes,
it is tremendously demanding, but this is probably the most important
thing they might ever do. It is not all negative and for some
people it is a great hallmark in their lives, a very important
stage in life, a very important thing they have done, and they
would not have been without the experience, and if you can make
it possible then all those things that happen in relationships
and families towards the end of life can still happen at home—for
instance, reconciliation of things that have not been quite right,
or a chance to talk differently when you know time is short. All
those things are very familiar in a hospice setting and in many
others too, but they can also be made to happen at home and perhaps
more easily and more crucially because that is where everybody
is for the majority of time.
Mr Hughes-Hallett: May I give
you one more very brief anecdote, which is my absolute favourite?
We have just looked after a young man who has just died who in
his bedroom had the words "Waiting room", to give the
message to his friends and family that he was going to die and
he was in the waiting room, and you cannot do that in hospital
but it just made all the difference to him. Also, just down the
road in Bristol we have just looked after a young lady in her
late 20s whose ultimate wish was to be on Changing Rooms,
and so what we arranged was that she would be at home and every
evening her young friends came round and redecorated her house
around her, and she died with a brand new, freshly painted house
and, to pick up on Chris's point, I cannot tell you what pleasure
that gave her friends.
Q110 Dr Taylor: Can I move to what
I think is a really basic problem that you have all been alluding
to? We are all very much in favour of the government's laudable
aims of devolution and power and decision-making to local bodies,
but this mitigates against you. Mr Tebbit, I think you talked
about a common assessment tool; others have raised common strategies.
You talked, Dr Wiles, about equity of provision, and we all know
that provision is not equitable at all at the moment. David suggested
most of us had probably got hospices. I have a hospice at home
which is not a residential one and the distribution is awful.
However do we square the desperate need for equitable development
across the country with devolution and the fact that PCTs are
desperate to make ends meet, to meet targets, and you are nowhere
near those sorts of levels?
Mr Tebbit: That is an extremely
good and broad question but I think the point at which one has
to start is encouraging cancer networks in this particular case
to undertake comprehensive, population-based, needs assessments.
The National Council has developed a methodology for doing that
and that is shortly to be published and it is being tested in
a number of cancer networks at the moment. I believe it is very
important because it will demonstrate for the first time what
the needs of this population are as compared with that population,
and if you put against those assessments of need the actual provision
that you have then that is an extremely powerful tool for trying
to persuade, for example, areas like yours that are devoid of
certain kinds of resource that they really need to provide them.
I will give you one or two examples. We have developed a comparative
index of need for cancer networks. The Northern Cancer Network
comprising Newcastle and Northumbria comes out at about 30 per
cent higher palliative care need than the average, yet the number
of beds it has is about half of the average for the whole country.
If we move down to my colleague's patch here in Surrey, which
on the basis of the index of need has 20% less per average, they
have one of the highest complements of beds to population across
the country. One of the things that has to be done, therefore,
is to bring up those areas of the country which are devoid of
services, or comparatively so, against the average, which will
require a number of things. Firstly, certainly more investment
in services and, secondly, making much better use of the resources
that are already there. One of the things we find when looking
within cancer networks is that the access to the services that
are there often bear an inverse relationship to the need of those
populations. In North London, for example, I can tell you that
Barnet and Enfield have the greatest need for palliative care
services in that network yet they have the least access to services,
whereas at the other end of the network, Islington Camden and
Haringey have most access when they need it least compared with
the others. So we need to get an understanding about that, not
only in the minds of cancer networks but in commissioners and,
also of course, the providers themselves.
Q111 Dr Taylor: There is no relationship
between cancer networks and PCTs, obviously. Is there any between
cancer networks and strategic health authorities?
Mr Tebbit: Yes, and, if cancer
networks are functioning as they should, then PCTs should be members
of the cancer network and they should also be members of the palliative
care networks that sit within the cancer networks. In most cases
I think you will find they are.
Q112 Chairman: Can I ask you a question—which
could get me into hot water, if I am not careful! I can recall
being a member of a health authority at the time the hospice in
my constituency was being mooted, and I was having difficulties
politically—not party politically but generally—because
I expressed some reservations as to whether that was necessarily
the right way of addressing what I accepted to be a problem locally
in relation to lack of proper, good quality, palliative care.
What you have said and certainly the figures that you gave in
terms of Yorkshire, and I know Yorkshire pretty well, illustrates
perhaps thirty years on why I had reservations, because we have
an unplanned system arising from good people who wanted to have
these hospices, and anybody like me who was stupid enough to raise
some questions was shot down as being basically evil. "Why
are you against this good idea?" But it goes back to understanding
why we have a Health Service in the first place—because
we needed that planning. The voluntary system did not work. How
do you square what you are doing now, therefore, with in a sense
being responsible for the fact that we have these major discrepancies
in areas like Yorkshire, and I am not personally blaming you,
Mr Tebbit!
Mr Tebbit: I am extraordinarily
grateful to you for that!
Dr Wiles: With due respect, having
founded a hospice in the north of England in much the way you
describe, the way to overcome the problem of putting them in the
wrong place was for somebody to offer a better alternative. That
was what was lacking. Nobody came up and said, "That's the
wrong thing to do; we will offer you something better". They
said, "That's the wrong thing to do and we are not offering
you anything". That is why it happened.
Mr Tebbit: One of the key differences
now is that if go back ten, fifteen years, palliative care was
an optional, add-on extra to NHS services. Over the last five
years in particular, it has now become acknowledged by the Department
of Health and by the NHS as a whole as part of mainstream NHS
care which, therefore, should be available to everybody who needs
it, and that changes the whole climate and the whole context of
planning.
Q113 Chairman: Being devil's advocate,
could it not be said that the hospice movement has therefore served
its purpose, and do we need it in future? I am not saying we do
not.
Mr Tebbit: I am sure we need it
in the future and we have certainly needed it in the past. We
would not be having this discussion today without what the voluntary
hospice movement has done and, indeed, the pioneers in the NHS
services as well. Do we need it in the future? Yes, I am sure
we do. What we must make sure of in the future is that when hospices
provide services for NHS patients, they receive an appropriate
payment for doing that. We must get away from the current irrational
system which is really not much different from patting you on
the head, saying "You are doing a wonderful job and we will
cover 20% of your costs". We have to have a more rational
system than that and there are all sorts of opportunities for
doing that.
Q114 Dr Naysmith: A number of the
written submissions put into us made it clear that religious and
usually Christian values have underpinned a lot of the development
of hospices, and that is linked to what we have been discussing.
Does the Christian/religious bit still play a part?
Ms Shaw: Quite rightly, you are
highlighting the foundation of some voluntary hospices. Today,
all hospices, almost without exception, operate on a multifaith
or a secular basis, so the aim is to meet all the spiritual needs
of the patients for whom care is provided. Whatever their faith,
or with no faith, care will be provided to address those issues
and the spiritual questions and the existential questions that
people very often have towards the end of life. A lot of work
is going on in many hospice services. For example, there is a
real outreach programme to make sure the service is pertinent,
relevant, available, to members of all communities and members
of all faiths or no faith, so I think a lot of good work is going
on in that direction. If I may, I want to come back to the point
about whether we will need hospices in the future because it relates
to what you are saying. I agree absolutely with Peter—we
absolutely will need hospices in the future—
Q115 Chairman: I think perhaps my
question was not put as well as it might have been. What I was
trying to say was do we still need the way we fund raise because
that inevitably will result in the differences that we have in
Yorkshire between a wealthy area and a poor area and the ability
to raise money. That is where I was coming from.
Ms Shaw: The historic pattern
is not the pattern we will see in the future; that is without
doubt. Clearly we need proper responsible sustainable statutory
funding for voluntary hospices providing care. Nevertheless we
should not run away with the idea that it would be best if all
hospice and palliative care were to be provided in the NHS. There
are clear, tangible, added-value benefits in providing hospice
care in the voluntary sector, not least the time and commitment
of 90,000 hospice volunteers, for example, with an estimated economic
value of £133 million a year. Those things are very tangible,
but lots of others are not. The advantages of being in the voluntary
sector with hospice care are all those things like community engagement
and involvement. They are not only demonstrated through fund raising,
although that is clearly very important, but demonstrated through
volunteering and by the sense of ownership that lots of communities
have about "their hospice". Yes, there can be limitations
to that, and there are lots of issues with that.
Q116 Chairman: What I am getting
at really is can we square up the philosophy of the hospice movement
with addressing the difficulty you have in areas such as Yorkshire
and the equity question?
Mr Hughes-Hallett: Yes, Chairman.
I believe we can.
Ms Shaw: That is why we are recommending
a national strategy which precisely addresses that issue. Where
are the needs? What is the necessary funding? Let us map what
is out there at the moment, and join up government thinking about
this whole question, not have different strands of government
policy potentially pulling in different directions. Let us bring
this all together, have a strategic look at what we need for hospice
and palliative care now and in the future, and give it real political
weight and clout to make sure parties do work together and that
we do have a more continuous joined-up process for individuals
and in a policy sense as well.
Dame Gill Oliver: You are right
that one size does not fit all, so there will need to be a whole
range of providers across the country so that people who need
palliative care can have it delivered in the way that is right
for them at the time that is right for them. That is a given.
However, a short time ago the National Institute for Clinical
Excellence published the guidance on support and palliative care
which was a combination of a huge amount of work by a vast number
of people, and that guidance was given to a large extent of experience
by people who had experience of cancer and of receiving palliative
care. There is an urgent need now to translate that guidance into
standards and quality measures and that work is under way, and
at all stages the involvement of users and carers has to be a
given, a must, so that the services and standards that are developed
do meet their needs. In addition, those standards need to be used
as part of a peer review with the new Health Care Commission,
for example, so that standards of care that are delivered can
be mapped against those explicit quality measures, and this will
not happen unless there is funding to implement those recommendations.
This Committee clearly is a powerful group and we would ask that
government is asked to explain explicitly how those recommendations
will be funded. The recommendations cover all of the topics that
we have discussed this morning—joined-up health and social
care, voluntary charitable organisations working together, hospice
care, generalist and specialist palliative care, education and
training for professionals, and partnerships between professionals
and service users.
Q117 Dr Naysmith: I want just to
throw this in for you to answer. We were struck all of us by how
often Christian associations were mentioned in the submissions,
obviously for historical reasons. Does that have any kind of negative
effect now, and what are the positive effects of organisations?
Finally, related to that, are there any unmet needs of particular
religious or ethnic minorities that you feel are not being met
currently, even by the multicultural attitude which has developed
within Christian organisations?
Dr Wiles: Having worked in St
Joseph's, St Catherine's and St Christopher's, there are connotations
with religion and hospice work. To be fair I do not think it has
impacted on what the patients received. I worked in St Joseph's
which is a Catholic founded organisation, and I think the patients
were offered the same regardless of their faith, but I am sure
that their perception is that it is different and you have to
comply or conform, and we have not reached out to the non religious,
the atheists or other religions. I think the perception is different
from the reality but certainly you only have to look in the hospice
directory at the names of saints to see the association of Hospice
and religious names.
Q118 Dr Naysmith: And, of course,
that relates to the kind of patchiness you were talking about
earlier because there are particular orders who are more inclined—
Dr Wiles: Absolutely. If you want
to get rid of the patchiness, though, and the historical inequalities
that have arisen, I would not criticise the people who provided
the first hospices. Somebody has to start paying the real rate
for what is needed because if you do not pay for core essential
care at an agreed level for every patient in the country, somebody
will step up and bridge the gap in an unco-ordinated, personally-driven
way, and that is what we have. The only answer is why do the government
not start paying for what patients need?
Mr Hughes-Hallett: I am really
anxious that the Committee does not take away from this that hospices
are a collection of bodies full of very well-meaning and excellent
nuns. Marie Curie is the largest provider of hospices in the country.
None of our hospices are called "Saint". Our newest
hospice is in Bradford, where 75% of live births this year will
be from the Asian community, recently lost a patient. Normally
we have a family room for people to come and grieve together,
and I think recently 250 people came to grieve for an Asian person.
Q119 Dr Naysmith: Do you think there
are any ways in which there is an unmet need perhaps in other
parts of the country for the kind of care you are offering to
the population of Bradford? That is really the question.
Mr Hughes-Hallett: In fact Macmillan
and Marie Curie have established a joint post in Bradford to pilot
this and think together about how we can address some of these
issues of ethnicity and some of the fears that may exist about
will the doctor be the same sex, a different sex, and again help
local ethnic populations realise that very often the traditional
way of death has been first that death is good. Very often the
Asian community are better at dealing with death than the middle-class,
white, European community and death is something actually to be
looked forward to. There are all sorts of spiritual tensions there
that we can address together. If I can applaud the hospice movement,
I think the hospice movement has addressed this with a high degree
of modernism. A lot of these were founded in the 1980s and 1990s,
and thank goodness they were.
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