Examination of Witnesses (Questions 215
- 219)
THURSDAY 6 MAY 2004
MS LIZZIE
CHAMBERS, MR
GURCH RANDHAWA,
MS TRICIA
HOLMES, MS
JOANNE RULE
AND MR
PHILIP HURST
Q215 Chairman: You have been here
for the first session. One of the issues I initially asked about
was the merits of a national strategy, which appears to be the
case in Canada, of palliative care. My opening question to those
who want to respond to it is this: if we had a national structure,
what would you identify as being the key components of that national
strategy?
Mr Hurst: In the same way as we
have the National Service Framework, I would see it very much
in line with that. Then there would be a key set of standards
that people could expect for whatever diagnosis, for palliative
care purposes in terms of planning their care, access to care
and support for relatives, both during and at the time of death,
and after death as well. The other key thing that would need to
be in there is standards of training, both for specialists in
palliative care and generalists but also for informed carers.
Ms Rule: To pick up on that, we
have recently had the publication of the National Institute of
Clinical Excellence guidelines on supportive and palliative care
for people with cancer, and I think that much of that is not cancer-specific.
Certainly the focus on seeing palliative care in terms of definition
of supportive care across the journey, which is in that document,
could be unrolled more broadly, and then a real emphasis on access
to information and signposting to information. Then it would be
possible to set out what should be in such a standard.
Ms Holmes: I think it should be
measurable standards that we know will be audited, and that situations
will be reviewed and that there is a constant renewal and improvement;
and opportunities to enhance services are also very important.
The information is absolutely crucial because if people are enabled
to make informed choices, then they have to have access to information
so that they know what opportunities are open to them, and then
they can be able to plan their care.
Mr Randhawa: One of the key issues
from our research is that we need to treat all sections of the
population in a mainstream fashion, especially the minority ethnic
groups and new communities moving into this country. We are still
very much treating them as an add-on to the palliative care services.
There is a need for respecting everybody's needs and consulting
with those communities and enabling practitioners to understand
who the communities are. All of these practices should be part
of the mainstream delivery of palliative care services.
Ms Chambers: Children should be
included in the strategy. For children one of the big issues is
planning for transitions such as from children's to adult services
and between hospital, hospice and home.
Q216 John Austin: That leads into
what I was going to ask. In the earlier session we talked about
the need for a range of provisions from hospice to community care,
but looking at hospices, the role of the hospice for children
seems to be qualitatively different from the hospice for adults.
Basically, adult hospices are caring for people in the last weeks
of their terminal illness, but for many children a hospice is
for respite care, and they may not be in the last stages of a
terminal illness.
Ms Chambers: It is a reflection
of the nature of lots of children's conditions. They last longer.
For children, the hospice is more a source of support, almost
a place to go for quality time. It is a support for the whole
family as well—siblings and parents, as well as the sick
child
Q217 John Austin: When we did our
children's inquiry we said that in terms of health, children are
not small adults, but they are children.
Ms Chambers: They are developing
children with their own particular needs.
Q218 John Austin: Clearly, the palliative
care for children is a different service requiring different skills
and expertise. What are the implications for the service generally?
Ms Chambers: I think children's
palliative care has many differences. Children are developing
and need access to education, play and leisure. This is not an
aspect that is present in adult palliative care. It also affects
the whole family. Parents are the chief carers of children. So
support packages need to include the whole family, in particular
sibling support has been identified. It is a much more holistic
package of care for children that is needed.
Q219 Dr Naysmith: Ms Chambers, this
question arises out of your submission, which emphasises the importance
of remembering that your service users are first and foremost
children, and you have re-asserted that. The Department of Health
has also said that children are asked what they want and they
always say they want to lead as normal a life as possible. This
suggests the best model for the kind of care provided is that
it should be provided at home much better than in a hospice. Is
that something you would agree with?
Ms Chambers: Yes. The majority
of families would want to care for their child at home, and to
do that they need support in the home, nursing and social support.
They also need a menu of options. But they also need to have a
children's hospice so that there is somewhere to go for a week's
break, and often it is a break for the child to spend time with
their friends in the hospice. It is all about choice. Some families
are uncomfortable letting their child have respite away from home,
but the choice needs to be there.
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