Examination of Witnesses (Questions 90-99)
10 MARCH 20005
MS PAULINE
THOMPSON, MS
JULIA CREAM,
MR JOHN
WHEATLEY AND
MS ANNE
WILLIAMS
Q90 Chairman: Welcome to our witnesses.
We are very grateful for your participation. I am sorry we are
slightly delayed on bringing you on, but I am sure you will agree,
because you have all been present, that it was a very useful session.
Can you briefly introduce yourselves to the Committee?
Ms Pointon: I am Barbara Pointon.
I am a carer of someone who is in the very last stages of dementia.
We have been on the sharp end of the continuing care system.
Ms Cream: I am Julia Cream, Head
of Public Affairs for the Alzheimer's Society.
Ms Williams: I am Anne Williams,
the North West Regional ICAS Co-ordinator for Citizens' Advice
Bureau. We help people through the NHS complaints procedure.
Mr Wheatley: I am John Wheatley
from Citizens' Advice.
Ms Thompson: I am Pauline Thompson,
Policy Advisor for Age Concern on care finance.
Q91 Chairman: Can I begin by asking you
a broad opening question. You have heard the arguments and concerns
that have been put to us, and I am sure you are aware of some
of the evidence we have received, and most of you have submitted
evidence to us. What would be the easiest means of resolving the
current difficulties within continuing care?
Ms Cream: My top three suggestions
for improving would be national criteria, national assessment
tools and much better training for people doing assessments. We
have additional concerns around the emphasis on physical health
needs as opposed to mental health needs, and an issue that is
coming up more recently is the difficulty of continuity of the
care package when people move from social care to NHS continuing
care.
Q92 Chairman: What can be done about
that?
Ms Cream: Better joint working.
Ms Pointon: Extend direct payments
to NHS continuing care.
Q93 Chairman: Say a bit more about that,
Ms Pointed; and if you want to talk about your experiences in
relation to your own circumstances—which is why you are
here—how might that possibly help you?
Ms Pointon: Direct payments I
think are the best thing since sliced bread. They give a choice
as to who works in our own home. I am going to talk mainly about
caring for someone at home, because what is worrying me is the
institutional mindset that is often brought to a lot of the criteria
and the assessment processes. To pick up Julia's last point, Malcolm
was on direct payments funded by social services. He moved to
continuing care, and then there is the notion of the NHS being
unable to directly fund those; and so we are under threat of having
our care package upset. This is about the last thing that either
the carer or the patient wants. I would like to know why the NHS
cannot take over the care package as is, and simply fund it as
is.
Q94 Chairman: You make a very bold point
about the way in which we view things through institutional care,
which is something that one or two of us have argued for a long
time. Do you feel you are speaking on behalf of other people who
are caring for someone in the community, in reflecting that thought?
Ms Pointon: I do, because I speak
at a lot of conferences and seminars and people come up to me
at the end and say, "your experience is my experience",
so I think I am not a lone voice. Malcolm was assessed three times
for continuing care, and one of the criteria that was being used
was that it was not nursing care because I was not a nurse, so
the care was being defined by who gives it, which is fine in an
institutional setting but does not work if you are working at
home because you do not have a nurse on tap. Secondly, somehow
the notion that you are caring in a home does need a different
approach, for example live-in care is essential in the late stages
of some illnesses, and that is an area in which the NHS has very
little experience of commissioning.
Ms Thompson: There is a real problem
about people who get care at home and who are in residential care.
There seems to be a mindset that you can only get fully-funded
NHS care in a nursing home, whereas it is quite clear in the guidance
that you can get it anywhere. It is whether or not that personal
care is paid for at home, because obviously it is a combined package
of care, but if somebody's primary needs are health needs, then
the whole lot is the responsibility of the NHS. Only last week,
I had somebody who rang me up who was told that if they went into
a nursing home, they would have the care package fully funded
by the NHS, but if he went home the personal care would have to
be funded by social services; therefore he would have to pay.
I am thinking that this does not match up at all. The other real
issue that needs to be addressed if we are going to get anything
like a sensible view of continuing NHS care is that we have to
sort out the registered nursing care contribution. The very fact
that the highest band is described in the way it is, which by
anybody's standards their primary need must be healthcare, yet
you only get £125; and even the £75 band has some difficulties,
so unless that gets sorted we are always going to have this problem
that you have to be worse in order to get continuing care.
Mr Wheatley: We would certainly
support the call for a single set of national eligibility criteria
within the consistent national approach and better training for
professionals involved in the continuing care process. It is clear
to us also that people do not get enough clear information about
what the process is, what their rights are for reviews, and how
the review processes are carried out; but there does also need
to be an information strategy for people. There should be better
record-keeping, clear requirements for record-keeping so that
we do not see the experience of trying to review cases where there
are simply no contemporaneous records. A lot of the cases we see
are about reviews, so measures to improve timeliness of reviews
would also help, and the problem of making decisions binding where
people can be dealing with a strategic health authority, a PCT
and in some cases the Ombudsman—but in none of these cases
is the ultimate decision binding on the person responsible for
paying.
Ms Williams: I would like to add
to the wish-list that we would like to have some independence.
The line of questioning in the earlier session was indicating
that the fact that money is involved and that the PCT staff are
under some pressure and that there is a limited budget as to where
this money will come from. The people who are doing the assessment
are quite people who are doing the review of their own assessment,
and there needs to be a level of independence somewhere. As John
said, we have had one case that has gone through numerous reviews
at PCT level, gone to the strategic health authority level; and
the strategic health authority found in favour of our client,
and the PCT will not honour it; and there is nothing anybody can
do.
Q95 Chairman: You cannot go to the Ombudsman.
Ms Williams: We can, but if they
decide to go against the Ombudsman it is not binding. They can
make recommendations. Even to get to the Ombudsman stage to look
at it and get a result, currently it is taking 55 weeks. It will
be over another year before that family will know what is happening,
so there needs to be a more timely review. We did hear the problems
about no records, and that is undoubtedly a problem, but when
we have suggested that there must be other medical records around—the
health service keep records for seven or eight years, and there
must be GP records and incidents when they have had interaction
in the hospitals. They will not use them in some instances; they
will only use the nursing home records. In many cases in some
areas that nursing home no longer exists, and then it just sits
on a desk and it is very difficult to get it moved forward.
Q96 Chairman: Looking at information
back some time, where you cannot get information from the records
of the home—either they are not there or they are inadequate—you
have difficulty accessing alternative means of working out this
person's circumstances.
Ms Williams: It is some of the
review panels—whether they will accept that evidence; and
quite often the carer's evidence is not considered; it is only
the written contemporaneous records of the nursing care that was
given at that time.
Q97 Chairman: They might not accept the
GP's records that could affirm the nature of the care that was
needed—
Ms Williams: That is the argument
we use to say they should be considering it, but we have to push
that. My concern is that we deal with a very few number of the
cases. As was pointed out earlier on, a lot of the people who
perhaps are not as articulate do not know—and do not all
belong to working men's social clubs—that there are schemes
available and that they would be entitled to them.
Ms Pointon: I would like to suggest
that in the criteria a professional is designated whose responsibility
it is to tell all families about the existence of continuing care.
It is self-funders who get the very thin end of the wedge because
they do not have the social worker to their elbow. If you could
say it is the GP's responsibility—it is something everybody
has got, and the only answer there is a GP; it is their responsibility
to tell the family about the existence of continuing care. I went
for five years without knowing it existed. If you do not know
it exists, then you cannot apply for it.
Ms Cream: I think if carers felt
they were going to be automatically offered NHS continuing care
when the person they were caring for was eligible, it would dramatically
change the system. At the moment my overwhelming impression is
that they fight tooth and nail to get it, and it is a battle,
which creates a very adversarial culture.
Q98 Dr Taylor: We heard in the first
session that PCT and SHA representatives are working for fair
and consistent application of the criteria. Talking first to Age
Concern, how do you think the assessment process and the application
of it is working?
Ms Thompson: You must remember
that we only ever get the complaints. I know that there are some
people where it has all happened magically, and they do not ring
us up to tell us that. Certainly from the calls that we have had,
I would say with a huge amount of difficulty. If you ask for continuing
care, we find that people are put off right from the very beginning—"oh,
nobody gets it in this area; you have to be nearly dead to get
it". So right from the start you are working from a system
whereby you might find that in that case you will not bother.
It is an attitude. I suspect the staff that are working at the
higher level are all working very hard to get it even across the
board, but then you have lots and lots of front-end staff who
may or may not be too aware of changing criteria attitude, so
it is a mindset at the moment within the NHS that they are there
to deal with acute services, and continuing care is something
else really. There is a problem there. We certainly find there
are people that come to us who have had an assessment tool and
have to meet a number of the criteria at a certain level, and
in some cases it seems to be very, very rigidly applied. I think
it would be pretty hard for Pamela Coughlan to get continuing
NHS care based on some of the criteria we have seen.
Q99 Dr Taylor: You have been very fair
and said you really only get complaints, but you must have some
idea from members and supporters that the system as a whole is
working or is full-stop not working.
Ms Thompson: I would say it is
full-stop not working.
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