Examination of Witnesses (Question Numbers
600-619)
MR ANDREW
HARROP, MR
STEPHEN BURKE
AND MR
ANDREW CHIDGEY
26 NOVEMBER 2009
Q600 Sandra Gidley: Interesting point.
Andrew, anything to add?
Mr Harrop: Yes, I want to comment
on personalisation in care homes particularly, because when you
look at Putting People First as an agenda, it does not equate
personalisation with personal budgets, but that is the way it
is often being seen on the ground. The philosophy of personalisation
is just as relevant to care homes as it is to people living in
the community. All the things that Stephen talked about is actually
about rethinking how services are delivered, thinking about the
dignity and independence of a service user, as much as it is about
extra money. I am not saying that care homes are not underfunded,
they are, but there is a lot that can be done in terms of better
staff training and motivation, so that they feel like they have
a real mission to support independent lives, even for very vulnerable
people in institutions.
Q601 Sandra Gidley: So it is not
just about money, it is about the whole attitude?
Mr Harrop: It is about ethos,
a sense of empowerment and dignity for all service users.
Mr Chidgey: If I can give you
a couple of examples that we are currently seeing in relation
to the experience of people with dementia and their families,
I am sure you have many in your constituencies, but I think a
typical example is a lady I was talking to last week, who said
as a family, we are trying to support our mother, my mother, who
is living 15 miles away, someone from the family drops in every
day. She is now developing into the middle stages of dementia.
We think she is able to cope well on her own, and she desperately
wants to stay in her own home, in her own community, and we think
that with a little bit of help, apart from what the family can
provide, through some reminder services, some help to get her
up in the morning, and make sure that she has had some breakfast
and is ready for the day, that she could continue to live independently.
Unfortunately, the response from the services that are available
seems to be that they can only go in at specific times of day.
So the daughter was saying, well, you know, they go in at 10.30,
and she has already gone out for the day, she has not been washed,
she has not had anything to eat, and what happens is we will get
a call from someone to say she has been found somewhere upset,
disorientated, dehydrated. I think there are lots of cases where
you cannot always resolve all of these problems, and you just
have to make do as best you can, and they are looking at whether
they can get personal budgets, but I think there is still a lack
of ability to respond to the very good policy direction that is
set, and there is the big glaring funding gap problem. I think
one of the things that is missing in all of the proposals for
the Green Paper, actually whichever political party you look at,
I think is a clear explanation about how we are going to develop
a workforce to support people, which is actually equipped to do
that, and is actually remunerated in a way which recognises the
skill that is required. I am going to stop because I do not want
to go on too much, but I think we are going to continue papering
over the cracks if we just think that personalisation is going
to resolve everything, because clearly it is not, is it?
Q602 Sandra Gidley: So you would
agree with the previous witness, who said that announcing policy
is the easy bit, I am paraphrasing slightly, but that delivery
is not on the same level.
Mr Chidgey: I think it would be
unfair to say that announcing policy is the easy bit, because
it takes a long time to get there and a lot of agreements to get
there, does it not, but I would agree that the delivery is the
very difficult thing. I am sure we will come on to funding, but
what the new proposals are suggesting is getting some additional
money from people themselves, moving benefits around, but is not
explaining clearly whether there is going to be enough funding
per individual over their lifetime of care needs to provide the
type of support we think there should be.
Q603 Mr Bone: Is there age discrimination
in social care?
Mr Harrop: There certainly is,
and it is now well documented in very robust academic studies,
rather than just being anecdotal. Some of the age discrimination
in the system is `designed in', it is part of the system. The
obvious examples are disability benefits, where you get more if
you claim before your 65th birthday, because you get a mobility
component, and also the independent living fund, which tops up
councils in terms of the care packages they pay, which means that
councils give you larger packages. There is a very interesting
case going through the courts—the McDonald case—which
demonstrates this point; a service user who was 64 was assessed
for a package of around £700 per week including ILF support;
for various administrative reasons, the application fell and was
remade after her 65th birthday; she was turned down for independent
living fund, and then the council said, "We will not give
you that package we assessed you for; we will not give you attendance
at night, and instead we will make you wear incontinence pads
all night rather than help you go to the toilet, even though you
are not incontinent". That is a shocking example of age discrimination
in practice. It really shows that it is also about assumptions,
the outcomes people expect for different age groups are really
different; and that feeds through into how assessments are made,
and also, in the world of personal budgets, the resource allocation
for those budgets. There is now growing evidence that people with
the same levels of needs are getting different levels of personal
budgets just because of their age.
Q604 Mr Bone: Very interesting that
there is now actual evidence, because it has tended to be stories
in the past, but now there is hard evidence.
Mr Harrop: The Department of Health
put a number on this 18 months ago, they said to move from today's
system to a completely age equal system could imply around £2
billion of extra spending.
Q605 Mr Bone: So you could argue
that older people are losing out to the tune of £2 billion
per year?
Mr Harrop: You certainly could.
Q606 Mr Bone: Is it just the budgets?
We now have clear evidence, but is there something more to this
age discrimination, are people being treated differently because
they are older?
Mr Harrop: I think there is a
set of assumptions about older people and their expectations around
independence in their own home, and about the sorts of social
activities that they will want to participate in. With younger
disabled people in the care system—and this has moved a
huge amount in the last 20 years—there is a real ethos of
trying to give people as normal a life as possible; of seeing
things like work, leisure activities and social opportunities
as really being a core part of what the care system is there to
do. That just is not true for older people. The ethos sadly is
much more about health and safety; ensuring harm does not come
the way of an older person, rather than trying to help them live
their life to the full.
Q607 Mr Bone: It is more like getting
them up in the morning, washing them, feeding them, sitting them
in front of the television set and putting them back to bed again?
Mr Harrop: Stephen talked about
15 minute visits once or twice a day, unfortunately that is all
too common.
Mr Bone: I know that from personal experience.
Thank you, Chairman.
Q608 Mr Scott: What do you make of
the policy set out in the Queen's Speech providing free personal
care at home for those with the greatest need? What level do you
think that need should be provided for, and can you see some unintended
consequences of it?
Mr Burke: Certainly there are
merits in the proposal, in the sense that it highlights that care
is a major priority for the Government, and improving care is
a major priority for the Government. Also, it is about trying
to tackle some of the postcode lottery that we talked about earlier,
and ensure that wherever you live, you will be entitled to free
personal care if you have high needs. It also raises the issue
about how we fund care in the future. This demonstrates that taxation
might be part of the response, but, and there is a big but, the
question is where are we heading generally, because we are obviously
halfway through a Green Paper consultation on the future of care
which is talking about system-wide reform, and that is what we
need, we need to reform across the whole system. So a piecemeal
change is not necessarily the best way to approach this. As you
suggest, it may have unintended consequences, so hard-pressed
local authorities being expected to find quite a lot of extra
money to fund this might instead cut services to people with lower
levels of needs, or they might try and place people in residential
care rather than supporting them in their own home.
Mr Harrop: It is a really welcome
move forward, but we need to see it as a stepping stone to `whole
system' reform, rather than being something that will work in
the long run on its own. I think there is quite a lot of uncertainty
in how the policy is going to play out. Firstly, we really do
not know how many people are going to be eligible for this extra
support, partly because of the people who are not covered because
of means testing today; people who are above the threshold or
just do not come forward to ask for help. So people will come
out of the woodwork. But also we do not know quite where the level
of eligibility will be drawn. From what we saw just yesterday,
when the Department published its consultation, you really will
need to be very, very disabled and in need to get this free offer.
I will not go into the detail of the assessment process, but basically
there is this level of need called `critical needs' that you will
need to meet, and you will also need to have four `activities
of daily living' that you cannot do—that is things like
being able to wash yourself or dress yourself. So the people who
are going to be supported by this actually could be relatively
few in number. For example, that story I told you about in the
McDonald case—the woman with a £700 per week package
of care—she was not actually assessed as being in `critical
need', she was assessed as being in `substantial need'. So there
you have an example of someone who clearly has huge care needs
and a huge package of support which she was assessed as needing.
She would not necessarily be covered if we just transplanted today's
system into the future with this new piece of legislation. There
is complexity in how the policy is going to be implemented locally.
Q609 Mr Scott: Can I just add one
extra part for yourself: do you have any particular concerns about
the possible impact for people with dementia?
Mr Chidgey: Yes, in terms of the
proposal that is on the table, I think what would be very good
is if you could see some of that money supporting people who have
perhaps very low level needs, rather than just trying to concentrate
all the funding on people at the severe and the substantial end.
I think if we are going to begin moving towards the policy direction
set out, I think we need to try and in some way make sure that
there is that low level support available, and if providing some
free support to do that can move us in that direction, I think
it would be a good thing. In terms of people with dementia, I
think what we currently see now is—we have moved to a very
different place in the last 20 years, in terms of the types of
people who are now going into long-term residential care. I mean,
there were studies back in the 1980s showing that probably perhaps
20-30% of people in care homes had a cognitive impairment; it
is now well over two thirds, and in many cases 70-80% of people
with a cognitive impairment. So long-term care is now much more
about specialist dementia care, and in terms of this discussion
about free personal care at home, of course what we need to try
and do, as far as possible, is yes, support more people with dementia
to live independently in the community with their families hopefully,
where possible, but I think we need to make sure that where long-term
care is necessary and actually is the best option to promote the
well-being of the person with dementia, and perhaps their family
as well, that is an option that is available. So I think the worry
for me is: does the policy create perverse incentives to either
admit people to long-term care too early, because perhaps there
is a local authority incentive, or does it incentivise people
to keep the person with dementia at home far longer when actually
it is not good for that person's quality of life or for the family's
quality of life? So I think there are some serious worries. I
think the big question overhanging all of this though is that
at the moment, when we talk to—we have talked to thousands
of people with dementia and carers over the last two years about
the ways you can change care and the funding of it, and the big
worry for people is not of course just about where is the money
coming from, it is what you are going to get. So I think although
it is good to see proposals about free care and changing the system
of charging, the big worry for people is there is nothing in the
proposals that they think very clearly describes: what are you
going to get? Are you going to be able to get some respite care
except in an emergency, which is often the case at the moment,
some planned respite? Are you going to be able to get a little
bit of help to get someone out of bed, and to involve them in
some meaningful activity? So I think quality is one of the big
gaps.
Q610 Chairman: Could I just ask you,
Andrew Harrop, you mentioned the consultation document, the written
Ministerial statement that followed it talked about that people
who currently have free care will have their savings protected
from future charges, and also others will get free care for the
first time. I wonder if you are doing submissions for that, I
suspect you and many other organisations will be, if you could
share that with the Committee. Sadly, it is a 12-week timetable
which may go beyond our remit of taking evidence here, but as
soon as that is available, if you could share it with us, I think
we would appreciate it.
Mr Harrop: We can send you a supplementary
note.
Q611 Dr Taylor: Could I just ask
if any of you agree with the Labour Peer who said last week, "This
is the first example of an Admiral firing an Exocet into his own
flagship"?
Mr Harrop: I do not agree. Lord
Lipsey was obviously heavily involved in the Royal Commission
a decade ago.
Q612 Stephen Hesford: Richard, I
do not understand the quote.
Mr Harrop: Can I just explain
why I do not agree?
Q613 Chairman: We can have that debate
later, let us see what the witnesses want to say about it.
Mr Harrop: There is a perfectly
good debate to have, about whether you should provide the entire
costs of care to everyone living in a home, or perhaps ask for
a co-payment, which is what Wanless suggested. But the reason
I do not agree with Lord Lipsey is this policy is for very, very
disabled people only. Most of the costs of care are actually care
homes rather than personal care, so it is a relatively small part
of the budget. It is also reasonably well targeted, because most
of those people who currently are not eligible are actually on
quite modest incomes compared to the whole population, simply
because older people's average incomes are relatively low. The
regulatory impact assessment published yesterday says that most
of the beneficiaries will be in the third income quintile of the
whole population, they are not super-rich beneficiaries.
Q614 Dr Stoate: I want to stick with
Alzheimer's or dementia in general for the moment, and I am particularly
interested in the interface between health and social care, something
this Committee has looked at in the past. We were at that time
struck by the force of the Berlin Wall that existed between the
two. Has that improved? Particularly in relation to dementia,
is there still that division between health and social care, or
are they blurring a bit?
Mr Chidgey: I think in some cases
it has improved. I think where you have formal structures and
individuals in place who have specific responsibility for ensuring
that there is joint commissioning, I think you are seeing some
benefit, because it is their responsibility to make sure that
services are working together effectively. For someone with dementia,
it can mean that, for example, when someone goes into a care home,
if they have had an adequate diagnosis, that actually, it is effectively
recorded in their notes that there is sufficient information passed
on to the staff team, or indeed if they are going into a hospital
that happens as well. So I think the sharing of that information
can significantly improve the quality of experience for someone
with dementia, wherever they are. But, of course, there is still
a very big battleground around NHS continuing care, and significant
arguments that still go on where people feel that actually, they
are in the middle of a tussle between two services who are trying
to disown them. We are still hearing about examples where people's
continuing care funding is no longer available because they have
been judged as not meeting the criteria, and yet there is not
a care package effectively being brought into place to help people.
So I think there is still a big Berlin Wall, and I think in relation
to the proposals that the Committee has been discussing, I think
there is the serious question about if you have a national health
service and a national care service, how are you going to make
sure that the integration is effective?
Q615 Dr Stoate: That is interesting.
So what do we know at the moment; for example, what happens when
a person with dementia goes into hospital, do we know much about
what happens to them?
Mr Chidgey: Yes, we know more
than we have done before. There have been a number of studies
published in fact in the last couple of months that have shown
what the experience is. So for example, we know that about a quarter
of all people in hospitals at any one time are people with dementia.
In fact, there was a very good study done by a researcher called
Liz Sampson that showed that half of all people over 80 in hospitals
have a form of dementia, so we are knowing more and more about
the fact there are significant numbers of people. We also know
that they are staying significant amounts of time, much longer
than other people who go in for the same treatments or procedures.
So if you go in for treatment for a urinary tract infection, for
example, whereas the median length of stay might be, for example,
a week, for someone with dementia, it could be three weeks, four
weeks—
Q616 Dr Stoate: But how much of that
is due to their medical condition and how much of that is due
to the poor interface between health and social care?
Mr Chidgey: I think there is a
general problem across both health and social care about lack
of knowledge and skill in relation to supporting people with dementia,
but I think that actually, if you, for example—I think that
probably it is inadequate discharge planning where the biggest
problem happens.
Q617 Dr Stoate: There is still the
problem, in other words, with getting people better in hospital,
and then what to do with them afterwards.
Mr Chidgey: Yes, making sure they
can be effectively rehabilitated in their own homes, or that they
are found a supportive environment in a care home.
Q618 Dr Stoate: We have already heard
this morning that a huge burden of social care is to do with people
with dementia related illnesses. Are there any breakthroughs that
you know of coming up in the future that might change the whole
equation in the coming years?
Mr Chidgey: When you talk to the
dementia research community, what they will say is there is not
likely to be a cure on the horizon in the next 15 years; however,
what they do say is that they are quietly confident that we may
see some disease modifying treatments, so that is to say although
people may continue to develop diseases in the brain that cause
dementia, we may be able to significantly modify the progression
of the disease which will mean we may be able to keep people earlier
in the condition with less significant symptoms than we are at
the moment. Because at the moment, you can have a very different
journey through dementia, as you will know, where you might start
developing symptoms and die within four or five years, or you
may die within 10 or 15 years, by which time you will be having
significant care needs. If we can delay the onset of progression
of dementia, then I think that is probably where the most significant
opportunity lies.
Q619 Charlotte Atkins: I would like
to ask about Attendance Allowance. What information do we have
on who claims it, and what it is spent on?
Mr Harrop: I think that other
submissions have provided you detailed modelling on the different
income groups who are claiming it. There does seem to be evidence
that it is a reasonably well targeted benefit, in terms of which
income groups receive it and what their incomes would be without
it, taking into account the cost of their disability. We did our
own research about 18 months ago looking at people who had newly
claimed Attendance Allowance, having been through an Age Concern
advice service. Over half said that they used the money for help
around the home or with the garden; a quarter said they used it
to get help with care; and around 20% said they got health-related
equipment and adaptations or other household equipment or household
repairs. Those all seem to be eminently sensible things to be
spending their Attendance Allowance on, and very much fit with
its description as a resource to help with the extra costs of
disability.
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