Examination of Witnesses (Questions 280
- 298)
THURSDAY 2 FEBRUARY 2006
MR PETER
CARDY, MR
ROBERT MEADOWCROFT,
MRS ROSIE
BARNES, MS
LYNSEY BESWICK
AND DR
MOIRA FRASER
Q280 Mr Campbell: So those who cannot
afford to pay further down the line may cost the National Health
Service more money?
Dr Fraser: That person then has
to choose. They can either wait in the hope that they might get
on the waiting list or they can pay privately or not have anything
at all. For some people not having anything at all is not really
an option because in order to continue to function and keep their
job and do all the things we do in life, bring up your kids, they
have to function so they make really difficult choices about what
to pay for. We did a survey two years ago on what people were
paying for and we found that 45% of the group said they were paying
for some aspect of their care and treatment and of those more
than 20%, so in total more than 10% of the group, were paying
for talking treatments which their doctor had recommended but
were not accessible through the NHS. Given that the NICE guidelines
say that for mild to moderate depression/anxiety talking treatments
should be the first line it is fairly shocking that those are
not available and people have to pay for those.
Q281 Mr Campbell: It is costing more
at the end of the day.
Dr Fraser: Absolutely. If people
do not get the help they need at primary care level we will end
up with people much further down the line needing much greater
intervention.
Q282 Mr Campbell: Do you have any
figures of such patients that you could give to the Committee,
a rundown of how many patients fall under this net?
Dr Fraser: I can give you copies
of the research we did. I am not sure we have anything on how
many people could have been helped at primary care level and ended
up in secondary care because that is probably everybody. Everybody
in secondary care could probably have had more help in primary
care and it might have helped. For some people it might not have
helped, it is very hard to tell. We are told very, very frequently,
"I asked for help early, I was given nothing". What
happens is that people are given nothing and they end up going
off sick at work and from there on it is a vicious circle and
after you are off work for more than six months there is a very
small chance of ever being back in permanent work. The trick is
to provide support at primary care level so that people can be
supported and get the help that they need then before they get
into the situation of needing to be off work, having problems
with money, et cetera, et cetera. There just is not the resource
there to provide the talking treatments that people need and it
is one of the things where we really need much more investment
in resource.
Mr Campbell: That is certainly a point
that needs taking up. Thank you very much.
Q283 Chairman: Moira, can I ask you
one brief question. You have talked about people in the primary
sector having to go to the acute sector, or avoiding it. Give
us your view on what is happening now on the non-residential treatment
orders where people will be asked (a) to stay in the community
under certain orders and (b) directed to take prescriptions and
will have to pay for them. What do you think about that? Presumably
if it was residential it would be free.
Dr Fraser: Yes. It is something
which has been indicated in the draft Mental Health Bill that
that is what the Government's intention is. We have yet to see
what that would look like. Mind is opposed to non-resident treatment
orders entirely, full stop. However, if they were introduced it
seems to me completely counter to natural justice that you should
require someone to pay for something on which their freedom depends.
We have no indication of how the system would work. We have no
indication of whether it would only be certain drugs that would
be laid out by the Mental Health Tribunal that would be exempt
because it is the Mental Health Tribunal who will set the care
plan for that person. Would the Tribunal say, "These particular
drugs at these particular dosages are the ones that are to be
exempt"? That is all very well but medication changes very
frequently and you are not going to be able to go back to the
Tribunal. How are we to know which are to be exempt? As I said
before, people have physical health problems as well, so are we
to be in a situation where some drugs are exempt and some are
not? In that situation, if it were to come in, which I hope it
does not, the only thing would be to make those people exempt
from all prescription charges because by nature they are a very
vulnerable group and their health is compromised as it is so it
would seem to be sensible to make them completely exempt.
Chairman: Thank you for that.
Q284 Dr Taylor: Mr Cardy, in your
written evidence in the summary you have got this sentence: "The
Disability Living Allowance and Attendance Allowance hospital
down-rating rules should be relaxed in recognition of the additional
costs, including phone and TV charges incurred by hospital inpatients".
Can you expand on that and explain that a little bit more to us?
Mr Cardy: I am not an expert on
the benefit system but let me do my best. The down-rating rule
means that people who spend 28 days in hospital, either as a single
period or over a period, will have their benefit withdrawn. We
think this is quite wrong because costs do not cease, the costs
of being in hospital continue, and we draw particular attention
to telephone costs and so forth. We have given you evidence in
our submission of the sort of scale of those costs. People in
effect suffer double jeopardy. The onus of having a series of
visits to hospital to report that they have had 28 days in hospital
falls upon the patient and their benefit will be stopped and an
overpayment will be reclaimed if they are discovered to have inadvertently
not let them know.
Q285 Dr Taylor: It is cumulative,
is it, if you spend four separate weeks?
Mr Cardy: If you spend 28 days,
each of which is not separated by more than 28 days from the next
then it mounts up. It may be over a short period with several
long spells in hospital, it may be over a long period with many
short spells in hospital.
Q286 Dr Taylor: Have you any idea
how many people are affected?
Mr Cardy: In the sense of?
Q287 Dr Taylor: In that they are
caught in this trap.
Mr Cardy: I do not think we can
tell you the answer to what. What we are clear about is that Disability
Living Allowance and Attendance Allowance are critical benefits
for people with cancer who very frequently develop disabilities
that make them eligible for these benefits which are compensation
for some of the costs of disability.
Q288 Dr Taylor: So how should we
deal with the problem?
Mr Cardy: Quite simply by removing
the down-rating requirement. It works very, very adversely to
people with cancer in particular who have these patterns of treatment.
The down-rating was removed from all other benefits in last March's
Budget and takes effect this April. I am sure somebody knows why
it has not been applied to DLA and AA but it seems frankly bizarre
to us.
Dr Taylor: Another peculiarity. Thank
you very much.
Q289 Dr Naysmith: I have got a couple
of slightly unrelated points to make and questions to ask from
them. How do you see this situation developing in the future and
are there new problems which might emerge with charges which can
impact on patients? Moira has just referred to one under the Mental
Health Act that might come in and produce a new situation. I wonder
if I could ask Rosie first of all. The last time we met was when
you were at the official opening of the cystic fibrosis unit at
BRI in Bristol and we are very grateful to the Cystic Fibrosis
Trust for all that happened there. Do you see anything happening
in the future?
Mrs Barnes: A bit like cancer,
cystic fibrosis is a victim of its own success in its ability
to treat patients at home. Because those with cystic fibrosis
are primarily children, adolescents and young adults there did
not seem any point in the extensive treatment regimes to keep
them alive if they had to be in hospital all that time. We have
worked very hard to ensure that with very expert support patients
can stay at home most of the time. They will do their own physiotherapy,
they will take their own nebulisers, and they will do their own
intravenous antibiotics. We do suffer from a situation where what
people get depends on where they live in terms of extra support.
We do see that the treatment regime we have introduced which is
keeping them alive will continue and will continue to make improvements
until such time as we find a cure. The problem we have is that,
as Lynsey has explained, it is a costly disease to live with.
They have to eat a lot of food, they need a lot of transport help.
Unless some of the hidden costs as well as the direct costs of
prescription charges are dealt with people will not take the treatment
that they need and it will shorten their length of life and reduce
their quality of life.
Q290 Dr Naysmith: Anybody else?
Mr Cardy: Yes. In our submission
we indicated that the demography and epidemiology of cancer has
changed and the patterns of treatment have changed very much.
Four out of five people now receive radiotherapy as outpatients
rather than as inpatients, similarly with chemotherapy. The five
year survival rates—five years is normally regarded as the
test for survival of cancer—have risen considerably, happily,
so 80% of women who develop breast cancer can now expect to live
five years or more whereas 30 years ago it was only 50%. These
trends are going to continue. This is all very good news. The
effect of the way in which costs are incurred mean that these
are being transferred, so patients have to incur large and increasing
costs in order to undertake life saving treatment, which to us
seems morally wrong that that should be the case.
Mr Meadowcroft: I think in the
future much the same will apply to Parkinson's disease. We are
looking at new drug therapies coming on stream to deal with the
symptoms today. There is a huge research push for breakthrough
therapies. There is cell therapy, stem cell research at places
like Frenchay and other places, or in neuro protection, trying
to identify those most at risk and to find a medication that will
stop the disease progressing. There are real problems today living
with the condition below the age of 60 but longer term the new
treatments, and there will be breakthroughs, will have a cost
to them as well, inevitably so.
Q291 Dr Naysmith: The other point
I want to check on is we will obviously be looking at the list
of conditions where there will be exemptions because of the fact
that it is a bit of a muddle at the moment. We want to get an
idea of what the likely costs of any changes would be. Can you
estimate what it might cost the NHS to add the conditions that
your organisations deal with in these four rather diverse areas
of disability and disease? What would the costs be if you came
along and said, "We want exemptions for some of our people"
and how many people would be involved now?
Mr Meadowcroft: I cannot give
you a precise figure but I can give you a ballpark figure. There
are around 8,000 people with Parkinson's disease below the age
of 60 affected by this, some would have an exemption anyway if
they receive Income Support. If we take the assumption that most
of those would benefit, we would have a figure of around £1
million a year. That is the best figure I can give you. It is
not robust but it is about £1 million a year, I think.
Mrs Barnes: For cystic fibrosis
not much over £100,000 calculating it at the annual rate
which people are paying currently if they are on the annual rate.
It seems ludicrous to have caused so much ill-feeling for a cost
of around £100,000 on a drug budget which is over £6
billion. It seems ludicrous that the exempt list has not been
reviewed. I think the Cystic Fibrosis Trust and those affected
by cystic fibrosis would accept the situation if it was decided
to abolish the exempt list and treat the whole situation differently,
but if there is going to be an exempt list based on severity of
condition and need for medication there is absolutely no reason
for cystic fibrosis not to be on it. As you will have gathered,
the only reason it is not on it is that when it was drawn up most
people with cystic fibrosis did not live until adulthood so they
were covered by the fact that they were a child. The considerable
ill-feeling that those with cystic fibrosis bear on this matter
is the fact that they were promised that this would be reviewed—it
was cited as an example—and it seems a huge injustice compared
with the conditions that are on the list.
Q292 Dr Naysmith: Have you put it
to the Government and asked them why it is not on the list?
Mrs Barnes: Repeatedly.
Q293 Dr Naysmith: I have done it
as well and I get the same answer. They are constantly reviewing
it.
Mrs Barnes: I have asked them
have they ever been given any medical evidence by any authoritative
body which says that cystic fibrosis does not meet the criteria
to go on the exempt list and they have not answered that question.
Q294 Jim Dowd: I am sure it is here
somewhere, but has the list changed much over time?
Mrs Barnes: It has not changed.
Q295 Jim Dowd: At all?
Mrs Barnes: They have not reviewed
it.
Q296 Jim Dowd: Since?
Mrs Barnes: 1968. The only reason
I can possibly put forward as to why it has not been changed is
that there are conditions on it which perhaps affect a great many
more people than cystic fibrosis who should no longer be on it
and they would all be terribly aggrieved if they were taken off.
If you opened the list there would be a queue of conditions wanting
to go on it and there may be some that were eligible in 1968 but
for which treatment has improved so dramatically they no longer
need to be on it. Of course, once you are on it you get everything
free, it does not matter whether you have got bunions, the flu
or whatever it is, whereas cystic fibrosis patients, who have
to have this huge quantity of daily medication, are not on the
list. It does cause them a disproportionate amount of anger. They
are always sending me petitions and writing letters and wanting
to come and march on Downing Street.
Q297 Jim Dowd: Let us ask Lynsey
what she thinks about it.
Ms Beswick: There are other illnesses
that are related to cystic fibrosis. For instance, I suffer from
arthritis which is related to my cystic fibrosis and that
requires extra medication and extra hospitalisation time due to
my cystic fibrosis and that is an extra cost caused by cystic
fibrosis that I have to pick up the tab for. I do think it is
a crying shame that we cannot get our prescriptions free when
we are having all this medication every day. We do not want to
take it, we did not ask to be born with cystic fibrosis. I think
it should be reviewed, it is ludicrous that it has not been before
now.
Mrs Barnes: As well, 15% of adults
with cystic fibrosis develop diabetes which is another sting in
the tail and another horrible thing to have to deal with, but
that is on the list. The minute they get diabetes they then get
all the rest of their cystic fibrosis drugs free. The doctor breaking
the news says, "You have now got cystic fibrosis related
diabetes. That is the bad news. The good news is you do not have
to pay for your prescriptions any more". Some nurses and
doctors who are a bit more imaginative tell them to tick the box
to say they have got a fistula. There are people here who probably
know better than I do what a medical fistula is. Many people with
cystic fibrosis have something called a portacath which is a device
implanted into the chest to access the veins more easily for intravenous
antibiotics or they will have PEG feeding whereby they have a
permanent tube fixed into their stomach so they can be fed overnight
to maintain a more reasonable bodyweight. The more imaginative
nurses will say, "As far as I am concerned that is a fistula".
I do not think it is actually but the pharmacists do not get into
the nitty-gritty. The doctors and nurses do try and help them
because they are so young and they know there is a danger to them
if they do not take what they are prescribed.
Dr Fraser: In terms of the cost,
obviously mental health is of a different scale from the two kinds
of conditions you have heard about. One in four of the population
experience mental distress at some point in their lives. Not all
of those end up being a diagnosable mental health problem that
is ongoing. You are talking about a significant number of people.
I think we have got to look at it in the round. What is it that
we are trying to achieve with the National Health Service? Are
we just patching people up who have got to a critical stage in
their lives, who have got to the point of being on a low income
or are chronically unwell, or are we trying to support people's
health and wellbeing and support people who are potentially very
vulnerable to stop them from getting more unwell in the future?
I know it does not come from the same budget and it is not easy
to count but the costs of prevention far outweigh the costs of
things like hospitalisation later on. Whilst the cost in terms
of revenue that is not clawed back from people may be relatively
high, the saved cost is much, much higher, not only in terms of
hospitalisation but in terms of benefit levels, in terms of contribution
to the community and all the other factors that we know about.
Mr Cardy: As far as prescription
charges for people with cancer are concerned, the DH tells us
that it does not keep that data but it has recently estimated
that exempting terminally ill people from prescription charges
would cost about £2 million which in terms of the overall
cost of cancer treatment and care is a very modest amount indeed.
Perhaps I could just allude to a couple of things that we have
not mentioned yet. One is the cost of car parking. We have the
strange situation where this is one of the freedoms that hospital
trusts have to fix car parking charges and some of them use it
as an important revenue stream at the expense of patients and,
as we point out, at the considerable expense of cancer patients.
The other is the Hospital Travel Costs Scheme. The cost of parking
is very often well publicised in hospitals but the existence of
the Hospital Travel Costs Scheme is not. In many hospitals there
is no enthusiasm for making people aware that the scheme is available
and it is very, very tightly means-tested. Our view is that eligibility
for the scheme should be liberalised and that it should be much
more widely available to people affected by cancer.
Q298 Charlotte Atkins: You have all
argued for exemptions in various forms, how would you raise money
without charges?
Mr Cardy: Perhaps I could respond
to that by saying that I think the decision making is not joined-up.
With the change in the pattern of cancer treatment that I have
described, that others have related to the conditions with which
they are concerned too, it is clear that it is part of the policy
and practice of hospital trusts to save money by delivering treatment
outpatient rather than inpatient. There is really no connection
made between that saving and the cost that is transferred to patients.
I do not believe in the end that there is any other place to go
other than general taxation, except I would say this: in the course
of last year Macmillan Cancer Relief put about £70 million
into the development of NHS cancer services, so we do feel that
we have made a contribution.
Mr Meadowcroft: I think I would
make the same case too from the Parkinson's Disease Society's
point of view. We have funded nurse specialists in Parkinson's
to the tune of £4.5 million over five years, so we do input.
In terms of an equitable approach I think it should be through
general taxation that would avoid means-testing and it would reach
more people. We would support that.
Mrs Barnes: The Cystic Fibrosis
Trust has not argued for prescription charges to be abolished
altogether simply based on our own experience. We provide a lot
of free services for those with cystic fibrosis, including conferences.
If we have a conference and we ask people if they would like to
come, we might get a list of 300 or 400 and we organise the day
and pay for their food for the day and only 200 turn up perhaps
and we have paid for 300 lunches and people have not come. If
we charge them £5, which is only a token amount, we get a
much more realistic list. We have viewed prescription charges
in very much the same way. For routine and occasional matters
people should be able to pay and it makes sense in feeling you
are getting something of value, you are not taking it frivolously,
you are taking it seriously. In terms of reducing the costs for
those with cystic fibrosis, if they were exempt from prescription
charges it would probably have the effect of keeping many of them
out of hospital for longer because those with cystic fibrosis
get very ill, they throw themselves on the mercy of their CF team
who immediately admit them for a week or two to look after them
properly and that will mean giving them all the drugs and medication
they need, giving them in-hospital physiotherapy twice a day and
ensuring that they get a high calorie diet. Many hospitals go
to a lot of trouble to make sure that those with CF can eat properly.
They tend to eat later in the day than most people, partly reflecting
the fact that they are so young but partly reflecting their condition.
For example, in the Bristol Royal Infirmary all cystic fibrosis
patients are allowed to go to the doctors and nurses' dining room
if they want to during the night to eat. There is never many of
them but it gives them an opportunity to be fed. If you think
of hospitals taking patients in for a week or two at considerable
cost, £1,000 for the hotel and catering aspect of it never
mind for the drugs, to look after them better at home would save
the NHS money in the fullness of time.
Dr Fraser: One of the things we
can do is look better at the pre-payment system. We would argue
for free prescriptions for all but in the absence of that, as
we have heard from other people today, the amount that people
are required to come up with to get that Pre-payment Certificate
is prohibitive. A scheme which would make that easier would help.
There is an example I know of, somebody pays £2 a week to
a local Mind group and at the end of the year they give them a
cheque to pay for their annual Pre-payment Certificate. £2
a week might be manageable but even £10 a month might be
too much to come up with at once. If you are on a very low income
these are considerable amounts of money. I think we need a tapered
approach so it is not all or nothing. At the moment we have got
a "you are either in or you are out" approach and for
those people who are on the margins that is very inequitable.
Having some kind of tapered approach where you can pay a little
bit but not the full lot might be better than the system that
we have now.
Chairman: Could I thank you all very
much indeed and apologise for the lateness of the ending of this
session. It has been a very good session. Thank you for bringing
your experience to us, I hope it will be well-used in the next
few weeks. Thank you.
| 
