Examination of Witnesses (Questions 260
- 270)
THURSDAY 6 MAY 2004
MS LIZZIE
CHAMBERS, MR
GURCH RANDHAWA,
MS TRICIA
HOLMES, MS
JOANNE RULE
AND MR
PHILIP HURST
Q260 Chairman: Can I come back to
the Chairman's brief? We have talked about the NICE guidelines
and the fact that they do not cover children, as I understand
it. What are you expecting, therefore, from the National Service
Framework? Have you been involved at all in its development?
Ms Chambers: We have been involved
in NSF on children; in fact an ACT trustee chaired the working
group. There is a section on palliative care, which we are hoping
will be mandatory. It is not a very big section, I must say. ACT
is hoping that the "care pathway" that we are developing
will build on what the NSF is saying and that it would provide
the basis of a national strategy for children's palliative care.
Q261 Chairman: So you have not got
any great hopes in that respect?
Ms Chambers: We have hopes that
it will bring about good, generic standards for children's palliative
care and we are pleased that children with life-limiting conditions
have been recognised as a distinct group . It is a good generic
starting point.
Q262 Dr Taylor: Going back to the
National Service Framework on long-term conditions, how hopeful
are you that this is going to address the gap we have discovered
in palliative care for the non-cancer conditions?
Ms Holmes: I would like to travel
optimistically but, given that it has now disappeared to the Department
of Health, we are not sure what might happen when it comes out
and whether it will look the same. We have been very keen to have
a standard specifically about people with rapidly progressive
neural degenerating conditions. It may well be that there is an
element relative to neurone degenerative conditions within each
standard. If there are not going to be specific targets, if there
is not going to be any funding, then what priority will that take
in terms of implementation? That would be our worry.
Mr Hurst: The trouble is that
each of the service framework conditions, especially for the elderly,
has something in it about palliative care; it tends to get lost
within that overall standards. What we actually need is something
specifically about palliative care standards across the board
rather than having them lost within the individual standards.
Q263 Dr Taylor: We had that with
the obesity inquiry; obesity is lost in heart disease and lost
in diabetes.
Ms Rule: I would agree with that.
I specifically want to say I do not think we can tick the box
and say that cancer is done. In the NAO Report there are all those
variations and the significant under-use of cancer services by
black and ethnic minority communities. There is regional variation
and there are real equity issues. Do not tick the box to say that
cancer is done. I am afraid it really is not.
Q264 Chairman: Can I end with a broad
general question we picked up on in the last session last week,
which is how we influence our societal attitudes to death and
dying, which clearly, as far as all of us are concerned on this
Committee, must have a bearing on how we develop policy in this
area. Do you have any thoughts on how we may change our views
and perhaps be more open about the discussion of death and dying?
I am particularly thinking about the role of skill teams. That
came out in the last session, as you probably heard, that teachers
often have no preparation for handling with students the question
about death and dying. How might we address that?
Ms Chambers: ACT would support
the idea of death education within the national curriculum.
Q265 Chairman: Have you thought about
that in any detail?
Ms Chambers: No, not really.
Q266 Chairman: It would be helpful
if you could get back to us with any thoughts on that. Clearly
it is an issue that you feel quite strongly about.
Ms Chambers: Yes.
Mr Randhawa: Currently we are
doing other work on increasing organ donors amongst the black
and ethnic minority communities. A lot of that work is around
death rituals and cultural issues about how the body needs to
be set out at the time of death and all the rituals involved with
that and actually getting communities to think about the positives
around death and the positives around organ donation or transplantation.
I have submitted that work as evidence to the renal NSF. If there
are any cross-linkages, you may find that useful.
Q267 Chairman: Are there any lessons
that you have picked up in your work with different communities
and do you feel certain communities have been more open, that
they have a healthier attitude and discuss it more openly? Some
do more than others. Have you picked up any evidence at all of
that?
Mr Randhawa: It goes back to my
earlier point. People are happy to talk about things but, unless
you communicate with them and ask them their viewpoint, they do
not have that opportunity to articulate their views. I think the
challenge is to communicate with the different groups and give
them the opportunity and the platform to share their ideas. We
have found, especially with BME groups, that the evidence not
just in the UK but across the world is that they are better at
providing solutions for their own communities than are practitioners.
Mr Hurst: Many older people are
ready and want to talk about death and dying and they find that
people are not ready to engage with them, or feel uncomfortable
about it. There is something to learn from older people themselves
about how they feel and talk about those issues. There is obviously
also an education and training issue for professionals that engage
with them both talking about the issues. The other key part of
communication skills is about listening to older people, to what
their views are and responding to those rather than thinking it
is all about imparting the message.
Q268 Chairman: Does your organisation
have any connection formally with schools in any areas where older
people are going in and talking about some of these issues?
Mr Hurst: Yes, there are lots
of projects around the country that already have older people
going into schools.
Q269 Chairman: Do they talk about
death and dying?
Mr Hurst: Yes, sometimes they
do. They talk about a range of issues around that. I guess it
would not be specifically about death and dying but if they are
able to bring that into the normal conversation, that would be
helpful. The other issue is that if we manage to shift the place
of death significantly back to the home, then it becomes much
more part of people's experience rather than something that happens
out of sight. It goes back to one's experience.
Ms Rule: May I add one brief point
about the significance of communication programmes that are now
beginning to happen across the health service, such as about breaking
bad news, so that all those really important issues of work like
pain relief, fatigue and all those things matter as much and there
is not that kind of, "Oh, gosh, we have failed", the
heroic model of medical intervention, if you like.
Jim Dowd: There is one point that has
come up time and time again with the witnesses we have had and
not just this week but previously. There seems to be a ready acceptance
by all that dying at home is the best model. Is that right? We
also had evidence from others saying that some people actively
resist it and other family members actively resist it. Are you
saying that death at home is the most desirable set of circumstances?
Chairman: He says that it could be.
Q270 Jim Dowd: No, it goes beyond
that. This has not been put to us as an option but as an ideal.
Ms Rule: Surely it is a choice
issue. You will have heard from Marie Curie when they did that
survey, which showed that so many people did want the choice,
and then they said, "We did not know we could", which
I thought was profoundly interesting—"we did not know
we could".
Mr Hurst: We know there is a complete
mismatch at the moment between where people would prefer to die
and where they do die. Some people would prefer to die in hospital.
We respect that is their wish. Other people have expressed a preference
about what actually happens to them and it can only be distressing
if, in their own minds, they wanted to have that and did not get
it and, equally, they have not even had the discussion about why
that may or may not be possible. It is about enabling that discussion
to happen and about being clear that it should happen.
Ms Rule: It is about planning.
Ms Chambers: There should be a
death plan really.
Ms Rule: Absolutely.
Chairman: Can I thank you all for your
contributions. We are most grateful.
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