Examination of Witnesses (Questions 240
- 259)
THURSDAY 6 MAY 2004
MS LIZZIE
CHAMBERS, MR
GURCH RANDHAWA,
MS TRICIA
HOLMES, MS
JOANNE RULE
AND MR
PHILIP HURST
Q240 Mr Burns: Would it be too simplistic
though to say that the way to get round this problem is basically
to merge social services and health services into one, instead
of two bits?
Ms Holmes: I think it would make
a lot of difference.
Q241 Mr Burns: For the better?
Ms Holmes: For the better. I realise
that social services have a very broad remit, which is over, above
and beyond health care. If we have social workers working directly
with Health, with very strong liaison and communication between
the two, there is a lot we can do to build on good practice. There
is good practice around, and that is the other thing, the lack
of knowledge about where the good practice is.
Q242 Jim Dowd: I did not realise
until seeing your written submission just how aggressive Motor
Neurone Disease is. You mentioned in your response and to Dr Taylor
that the average length from diagnosis to death is 14 months.
Is that because of lack of any known treatment, is it because
the diagnostic techniques are just not adequate, or is it just
the aggressive nature of the disease itself? I know you say there
is no known cure, but would you like to say anything about research
into it?
Ms Holmes: In terms of the time
of diagnosis, there are several problems. Effectively, if you
have weakness in one hand and start tripping up, you might not
think that is a serious problem. Some of the delay in getting
a diagnosis is obviously the time it takes for any of us as individuals
to think, "this is odd; I really ought to be seeing a doctor".
When you get to the GP, what we would really like to see is that
when somebody presents with X number of symptoms, it is recognised
as soon as possible—not that the GP should recognise it
is Motor Neurone Disease but that it is recognised as soon as
possible that this combination of symptoms is saying it is potentially
neurological, not that it is orthopaedic or rheumatological, or
you need to go and see the ear, nose and throat consultant if
you have got problems swallowing or with speech. It needs to be
recognised sooner so that people get into the hands of the right
people. One of the other difficulties is that there is no one
definitive test for Motor Neurone Disease. You might present with
weakness in one hand but is it multiple sclerosis, is it Parkinson's
or any number of things; is it an orthopaedic problem, that you
have a trapped nerve? We need to speed that process up as well.
You have to differentiate between conditions. You can imagine
that if you go to several consultants and keep going back to the
terminus, back to the GP, they say "we will try something
else"—so by the time you have your diagnosis, you have
lived longer, and by then your disease will be well advanced because
it will be clinically possible to say that it is now Motor Neurone
Disease. We need to work with GPs to speed that process up, and
also develop guidelines so that we can educate and inform people
more about the situation. In terms of research, the Association
funds research, looking at the possible causes, firstly understanding
what goes wrong with the motor neurones in the first place, and
also what might well trigger the problem. Is it an environmental
toxin that triggers it? Is it genetic based? What is behind the
disease? World-wide, as an association we encourage discussion
between researchers internationally and we run an international
event. There is other funding going into research than from the
Association, from the Medical Research Council and the Wellcome
Foundation. It is still an enigma.
Q243 Mr Amess: Mr Hurst, Age Concern
said in their written evidence that elderly people are less likely
to receive specialist support when they come to the end of their
lives. The area that I represent is full of elderly people, and
all the time I get representations from families about perhaps
a bit of disappointment about lack of support, and I can empathise
with that. Why do you think this is?
Mr Hurst: The biggest thing is
age discrimination. We live in an ageist society so in a way it
would be surprising if that did not spread itself into the way
people act with services, particularly in this area, because we
all acknowledge there is a complete mismatch between the need
for services and current supply. There is some form of rationing
of access to services going on, albeit not very explicit, and
probably not conscious, but given the people within that have
an ageist attitude about what they think older people will think
about end of life, then the likelihood of referral to some of
those services decreases. We also have the historical pattern
of services that have developed, and we originally targeted relatively
younger cancer sufferers and probably have not kept pace with
the need, or have not been able to keep pace with the expanding
need. We also have more age-related conditions like heart failure
or respiratory problems, and those palliative care services are
just not in place; older people are more likely to be nearer the
point of death, and palliative care is just not available for
anyone, but older people are disproportionately affected by that.
I think that because the referral route into palliative care services
is often through specialist cancer services at the moment and
older people may not have been referred into specialist cancer
services, either appropriately or inappropriately, or through
choice, then because they have not gone through the specialist
cancer service they still do not get into the palliative care
service either. Finally, there is the issue of older people themselves
and what their expectations are, so there is probably a real issue
about what older people expect their death to be like, particularly
after a diagnosis of cancer, where they may have lived in an age
where diagnosis of cancer was not to be talked about, or as the
very end of the line. I think that will change over time, but
at the moment older people themselves may have a particular view
about what that means to them, and therefore their wish to access
services.
Q244 Mr Amess: I think you must have
seen my script because you have already answered my second question
perfectly! You are saying that in an ageing population age is
not of equal value, if you take my point, and this is something
we have to address. Do you think there is a need to change perceptions
amongst clinicians and carers, or do you see there should be some
sort of structural change?
Mr Hurst: I am not sure there
is a need for structural change because that is usually a diversion
from the real issues. In terms of management arrangements, there
may be structural changes that would help the process, particularly
the explicit uncoupling of palliative care from cancer services
may help. Clearly, there should be formal links, but that may
help—explaining palliative care to other services. Most
of the issue is about attitudes and beliefs, which is the hardest
thing to tackle but comes back to training, education and development,
and enabling particularly professionals to challenge their own
beliefs about ageing, and to view their own lives in that context
as well, because actually it is a real success rather than a problem.
Q245 Chairman: You do not necessarily
share Ms Holmes's comments on the issue of the chasm between health
and social care and the need for structural solutions to that,
which might address some of the difficulties being faced in palliative
care.
Mr Hurst: Probably not a structural
solution because we just know that would take a very long time
and be very distracting; but there does remain the very significant
key issue that health services are free and personal care services
are not.
Q246 Chairman: If that was addressed
you would—
Mr Hurst: I think that would go
a long way to enabling you to sort out the problems when they
need to sort them out quickly. Palliative care has got caught
up in a lot of the confusion around continuing healthcare, where
there is less clarity now about responsibilities than there was
before there was an attempt to try and clarify it.
Q247 Chairman: Ms Rule, do you share
Mr Hurst's views on the working of health and social care, from
your perspective?
Ms Rule: From our perspective,
we literally get thousands of calls from people after discharge,
who genuinely do not know where to go. That is really heartbreaking
because in some cases they are spending the last several weeks
of their lives, or the life of the person they are caring for,
trying to find out what is available from social services, what
aids there are, where they go if things get worse. That experience
is something we have evidence of. Part of that could be put right,
not by massive structural changes, but by something simple and
not resource intensive—even if everybody is given an information
pack about where to go, how to get things—because you do
not know what you do not know. The Committee has looked at the
choice issue. For many people, choice of dying at home—if
you do not know what might be available, how can you make that
choice? It feels like something that is so obvious and perhaps
so small it is not worth drawing attention to, but it would make
a dramatic difference if there was more systematic provision of
information at the point of discharge. There is a real information
deficit there.
Q248 Chairman: Who would you see
being responsible for that primarily?
Ms Rule: I think it involves people
working together. It has to involve health and social services
working together, but logically it needs to happen at the point
of discharge. I have only gap-searched here, but there is another
information point I would like to make, around the black and minority
ethnic issue. People from BME communities are often invisible
in terms of palliative care, and they are not getting access.
There is an information point here, because we have talked about
the difference between cancer and other illnesses, but not everybody
with cancer is getting good services. People from BME communities
are often not accessing cancer services. We do not yet collect
data in cancer registries about people's ethnicity. There is no
data. More generally, and not just for cancer, they do not systematically
monitor ethnic background at primary care trusts. There is a real
basic information deficit that is both cancer-specific and general
to health that makes a significant difference. We cannot begin
to hope to get the BME issue right until we do that. I am sorry
to have gap-searched but I really wanted to take the opportunity
to make that point.
Q249 Mr Bradley: Can I return to
children's services and strategic planning? In your submission,
Ms Chambers, you say: "Many Primary Care Trusts and Strategic
Health Authorities do not fully support the case for developing
integrated children's palliative care services." Equally,
NICE guidelines and NSFs are not even covering children's palliative
care. Do you think that is an issue because of the small numbers
within any PCT area that there are of children needing such services?
If that is the case, how do we address that and what other issues
arise from that problem?
Ms Chambers: I think there is
a general unawareness of what children's palliative care is. That
has probably to do with the lower numbers of children affected.
This was highlighted when the NOF funding was announced. When
many agencies put their bids in, they found their strategic health
authority would not fund beyond the three years of the NOF funding.
So, the areas which were worst served got less money. ACT is working
hard to campaign for children's palliative care and is producing
a "care pathway" for children with life-limiting conditions
this summer, which we are hoping to promote to strategic health
authorities really to tell them what the elements of a palliative
care service should be for children and to bring together all
the different agencies from health, social services, the voluntary
sector, commissioners and providers, to tell them what it is all
about.
Q250 Mr Bradley: Clearly you see
SHAs as a critical body within that because presumably within
the number of PCTs with the smaller numbers they are trying to
cater for this needs to be brought together at a strategic level?
Ms Chambers: Yes. Although I should
stress that there are an estimated 18,000 children in the UK with
a life-limited condition.
Q251 Mr Bradley: Could I also raise
this issue that you mentioned earlier about the transition from
children to adolescence to adulthood and the poor provision of
services or recognition of that issue? Again, how would you see
that being effectively addressed?
Ms Chambers: There are some good
models already. There are some children's hospices that have developed
separate units for adolescents and young people and similarly
some adults hospices have units for young people. So there are
good models. But there needs to be more care in the community
for this group of people. Often they are reaching early adulthood
at a point when they are degenerating in health and it is a very
difficult time for them. We would normally suggest that the transition
planning starts when the child is about 14 because it takes four
or five years to get the care plan in place.
Q252 Jim Dowd: Ms Rule, you touched
on this point, in response to care just now, about the discharge
planning. In your submissions you suggest there should be a discharge
pack. Should not this already be in being under the discharge
planning as it is?
Ms Rule: It is not already being
done. As ever, there are examples of good practice but the evidence
that we pick up, and we talk to 60,000 people every year, is that
probably about 10% of those are actually in that phase of scurrying
around—"I do not know where to go, what do I do if
. . . ." So I think we have real evidence of the lack of
this provision.
Q253 Jim Dowd: Are you either calling
for everybody to pay more attention to this or are you calling
for a national framework, not an MSF—and I get your point—or
a national pattern for all authorities to follow whether they
be health care or social services?
Ms Rule: I think our starting
point—and I mentioned earlier the NICE support and palliative
care guidance for cancer—is that that has information provision
in it. If all of those recommendations were implemented, it would
make a big difference. Actually, also all of those recommendations
could be relevant to other conditions and diseases. So I think,
yes, we are calling for that. We are actually saying that it is
a simple idea that there should be a clear recommendation that
said "You should not actually be discharged without that
as a minimum", because a discharge pack is not just a bit
of cardboard with some paper in it; it means, going back to the
Chairman's point, that all the people concerned have actually
to have had some discussion to know what to do if this happens.
Very often a pack which is a simple, easy idea, could actually
be a shorthand way of checking that this liaison and working together
actually happens. So, yes, we are calling for that.
Q254 Jim Dowd: Effectively, you want
the NICE guidelines to be made mandatory?
Ms Rule: Yes, we clearly do. In
terms of the specific recommendations of this Committee's deliberations,
were there to be an emphasis on a simple, bold idea of a national
discharge pack, it would force a lot of joined-up working.
Q255 Jim Dowd: The Department of
Health issued a guide of good practice last year.
Ms Rule: That was on discharge
planning. It is still the case that there is good guidance on
discharge planning. That is already the case.
Q256 Jim Dowd: But nobody is taking
any notice of it?
Ms Rule: I am pausing to think
how best how to phrase this.
Q257 Jim Dowd: If all else fails,
tell the truth.
Ms Rule: Every week scores of
people phone us up who have been discharged and who simply do
not know where to go. As you do not know what you do not know,
they have not even been given the questions to ask. Or they are
phoning up and they have a piece of paper with numbers on it.
They will phone us up because we are one of the numbers on it.
They will actually say, "Are you the people who will come
out?" I think you cannot underestimate, and this is something
very much in Ms Holmes's area of work as well, that this needs
more emphasis. From that point of view, a pack does not feel like
it even touches the surface. Even if that were done across the
piece, it would be a step forward.
Ms Holmes: The other point is
that often people are at the very beginning of this journey in
a state of shock. They were not anticipating necessarily what
they were going to be told. They were not anticipating that their
life was threatened. They may well have had an idea but you can
deny that until somebody is telling you. If you are not supported
at that time, it can be weeks before you have really assimilated
what has happened. You may not have had an opportunity to go back
and ask questions that are important to you and your family, and
you have to take on "my goodness, I have got to find my way
around the health service, social services and any other service
I may think I might need at any time". People are in shock.
I think if the beginning of the journey goes wrong, often it seems
to go wrong the whole way along. If it goes right at the beginning,
we can rectify quite a lot of the issues that people face.
Q258 Jim Dowd: Is that because in
your estimation, and it is only a guess, obviously, the clinicians
do not look at the whole person; they just look at the condition?
Ms Holmes: Training for clinicians
in breaking bad news I think is far more advanced in the world
of oncology than it is in the world of neurology. Yes, I think
there is a problem sometimes of just seeing the condition and
not the impact that it is going to make on you, your spouse or
partner and your wider family and network of friends. It goes
beyond the practical; it is the whole cycle of social, emotional
and spiritual. It is the whole range.
Ms Rule: There are also benefits
and financial advice. We have held focus groups of people on these
issues. They say, "They are treating the tumour and not me".
Q259 Jim Dowd: Who then within our
current health care structures is responsible for doing that or
should be?
Ms Holmes: I think it comes back
to having this single point of contact, that we cannot anticipate
individually how everyone is going to cope with any crisis. We
are all different. We need information at different times in different
ways and so on. If you know there is this contact person, you
know there is somebody out there who can support you, then that
can make a real difference, but even within the Association, we
provide a lot of information when people are first diagnosed and
we have realised that even we have to make our information more
comprehensive in terms of: what are your rights, what are the
responsibilities, how do you go about getting benefits, and also
linking them to the right association. We cannot become every
organisation for every person with motor neurone disease. We need
to have much better knowledge about the facilities that are available
to support people, whatever their condition. Having a single point
of contact on diagnosis is a major step forward.
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