Examination of Witnesses (Questions 660-679)
THURSDAY 12 DECEMBER 2002
DR SIMON
BARTON, MR
SIMON COLLINS,
MS RUTH
LOWBURY, DR
ADE FAKOYA,
MS CHRISSIE
GREEN AND
MS HEATHER
WILSON
660. Is there any suggestion that people come
later to seek your help because they are frightened that if they
get diagnosed as being HIV positive or with AIDS something might
happen to them. People are often confused about what the authorities'
powers are and what they can do.
(Dr Fakoya) Absolutely. One of the biggest barriers
to people accessing services is the fear of immigration officials
and what they are going to do. We have heard today talk of mandatory
testing of asylum seekers. People's fear of what they feel is
going to happen to them if they come forward actually prevents
them coming forward until they are really sick.
661. Would you say that does happen?
(Dr Fakoya) Absolutely.
Siobhain McDonagh
662. Between 60 and 70% of my case work is on
immigration and it is mainly people who are overstayers, who have
been here for a very long time, who came in on tourist visas,
visitors' visas and have stayed here for years. The people I meet
who are infected with HIV and AIDS are those people rather than
the new asylum seekers. It might just be the demographic profile
of my constituency, but for them I suppose putting their head
above the parapet and going to a clinic when they have no status
and technically they should not be here because they should have
gone some time ago is the group I meet and it is often men.
(Dr Fakoya) Clearly there will be geographical variations.
In terms of the Public Health Laboratory figures, in terms of
the heterosexual African epidemic, it is a ratio of 2:1 to women;
the majority of them are women.
Julia Drown
663. Is there any justification for just looking
at asylum seekers? Should it not be people going on holiday to
the African continent as well, people making visits, people who
have lived there for a while and then are returning to the UK?
Would there be any justification for separating out just asylum
seekers? If there were going to be mandatory testing, would it
not be logical to test everybody entering, be it Ministers, be
it anyone who has been to Africa?
(Dr Barton) The practical problem to that is what
test you use if somebody has nipped out of the country for two
weeks. Are you looking for evidence of viraemia, in which case
daily viral load tests at expense, and keeping them three months?
664. That applies as much whoever you are testing.
(Dr Barton) Of course and that is the practical issue
of why it is very, very difficult to implement. The model for
that was Cuba in the late 1980s, early 1990s which did have a
system whereby anybody entering the country and the whole country
was screened for HIV and it is well written up by WHO and in a
Lancet article.[3]
The impact and cost of keeping people contained while you waited
for their results to come back after a contact was enormous in
terms of keeping them away from the general population. There
is a well described method of how they did it. It is one way of
running a public health system, but it is not something which
fulfils the sexual health and HIV strategy's view of trying to
reduce stigma.
(Dr Fakoya) It really goes back to what
you want to achieve. If you are doing it as a public health measure,
then that clearly does not work. If you are doing it because you
wanted to detect people earlier then there are various other strategies
which we know work. They would involve multi-disciplinary working
in clinics and communities which we could put in place which would
be better.
665. Are the people you see who have been infected
through an African context only asylum seekers or are there others?
(Dr Fakoya) No, not only asylum seekers.
666. So there would be no logic to restricting
it to asylum seekers only.
(Dr Fakoya) No.
(Dr Barton) Many of the people whom we see, whether
they appear asymptomatic and have a test or come ill into our
clinics, make contact with us and test HIV positive, often seem
to get more support from not just our staff but from social services,
from organisations like the Terence Higgins Trust (THT) than if
they were not HIV positive. Many of the services are immediately
geared up, they then have supportive doctors writing letters saying
they need treatment, writing to their solicitors, giving them
support for not returning home where they would certainly die
without antiretroviral treatment. So the service we are offering
brings us very much into line with the same objectives they have
for seeking asylum and it is an increasing amount of our workload.
After every clinic we are writing two or three letters at least
to solicitors or in support of individuals around an unsocial
issue.
John Austin
667. Although I share some of the experience
of Siobhain McDonagh, not with overstayers but with asylum seekers
who are awaiting determination of their application or indeed
persons who have been given limited leave to remain, therefore
people who are lawfully here, who may be reluctant to make demands
on services because of the fear of the consequences for their
application which is awaiting determination, do you feel that
is a barrier to people coming forward and seeking services generally?
Secondly, not just asylum seekers but minority ethnic groups generally,
do they feel they have adequate access to services which are available?
Are there barriers?
(Dr Fakoya) There are undoubtedly barriers to access
to services for black and ethnic minority groups, not just in
HIV but across the board in other health issues such as diabetes
and hypertension. The data shows us that people from black and
ethnic minorities, whether asylum seekers or here legally for
many years, access health services late. There are several issues
as to why that is. If they are asylum seekers there are issues
to do with immigration. If they are not asylum seekers there are
issues about health advocacy and understanding the health system
and how it works, the doctor/patient relationship and being able
to negotiate that. All those issues impinge on people's ability
to access health care in this country.
(Ms Lowbury) One of the issues which has come up in
the project we have worked on in relation to the provision of
services around the country for HIV is that there are arguments
about whether all the services should be concentrated in a few
specialist centres or whether they should be available more widely.
For minority ethnic groups and deprived communities generally,
where they may not have many resources, it may be difficult for
them to travel, they may not have either the financial means or
the skills to travel, it is very important that services be available
for them locally and that is one of the arguments, not for providing
the complete gamut of specialist care through GPs, but involving
primary care more in accessing HIV treatments and all the surrounding
support which people on HIV treatment need: access to social care,
access to mental health care services. I would say, above all,
access to diagnosis. In all our communities there is a stigma
about HIV and minority ethnic communities are no exception. Many
people will feel quite nervous or reluctant to go and seek HIV
testing in a centre which can be identified as a centre for sexually
transmitted infections. It is very important that services for
testing are accessible in a range of settings, including primary
care and perhaps more community based organisations as well.
Dr Taylor
668. May I go back to treatment? From every
witness in every session we have heard of the tremendous load
on the GUM services throughout the country. I was a general physician
in the early days before the services were really worked out and
we used to dread getting somebody in with AIDS and an opportunistic
infection because of the workload it put on all the staff. Has
that improved? Could you give the Committee an idea of the workload
from one single patient who comes into hospital with AIDS and
opportunistic problems?
(Dr Barton) The biggest problems are in the late presenters,
the individual who comes in through A&E previously undiagnosed.
There you have a person accessing an A&E unit with a problem,
a cough or a fever. Their ability to recognise that may be HIV
related is an important part of all the training we do for all
the A&E staff at our hospital and across London. Once they
are then in, sure, it is a big team approach. Patients have multi-disciplinary
needs. Once they are diagnosed positive whilst they are acutely
unwell, the shock is compounded by being terribly unwell; trying
to deal with finding out you are HIV positive when you are lying
on a bed with life-threatening pneumonia or meningitis is an impossible
thing for anyone to deal with. Therefore individuals need a lot
of input, a lot of time. They can recover because we do have good
management protocols once people are diagnosed, but we do know
that the major problem is when an individual presents somewhere
which does not have an HIV unit constantly telling them what to
look out for and what to do, reminding them that 50% of heterosexual
men in this country with HIV have not been diagnosed yet, reminding
them of that. If you do not keep saying that to staff at the front
line they will begin not to recognise the diagnosis. Every year
there is a lesson for the week or a story we hear of someone who
spends a month in hospital before somebody thinks of HIV. That
happens in all the units because it is sometimes a difficult condition
to diagnose and people sometimes do not want to go to HIV because
they do not think the person would cope or "It couldn't be
them, could it?". That still happens today and better training
of medical staff across the whole work force is essential to prevent
that. Yes, we coped well with the inpatient workload. It is a
multi-disciplinary team event. We are hopefully going to come
onto commissioning later, but there is the issue that as the drugs
budgets go up, putting pressure on trying to keep the bed numbers
and the bed occupancy down, that is a tension which you cannot
let go because you will still have people presenting late unfortunately.
(Dr Fakoya) Two things are going on. On the one hand
we have patients who are diagnosed relatively early who go on
antiretroviral therapy. They also still have needs, psycho-social
support needs, the other needs and also the needs which arise
because of the side effects of the drugs for various individuals.
In addition to that we still have individuals who are presenting
late. One of the things you are taught at medical school is to
try to find one unifying diagnosis for a patient in that they
only have one diagnosis. With HIV you often have three or four
or five things going wrong with them. Just because you have found
one you still have to continue to look and you will often find
more. The average stay in our hospital for somebody who is HIV
positive was about five times the average for a general medical
patient when we did an audit. All those issues impact on our workload.
669. So there is a tremendous inpatient workload
to cope with.
(Dr Fakoya) Our unit has a constant inpatient workload
from ante-natal testing in women, managing pregnancy, to people
who come via casualty and also people we know about who have complications,
either before their treatment or because of the disease itself.
There is an ongoing inpatient need which often gets forgotten
because people now think HIV has become manageable.
(Dr Barton) There are issues around that. Yes, the
inpatient need is less than it was eight years ago and we halved
our beds in 1997 once antiretroviral therapy became effective
and we started not having so many immuno-suppressed individuals.
On the other hand, people at that time were predicting they would
be able to get rid of all the beds in many centres because people
would be living well and will not have opportunistic infections
and tumours. Most of us thought that would not happen, because
people will present late and because treatment is not effective
in everybody and therefore there will always be people who become
severely immuno-suppressed. The other factor is that obviously
back in the early 1990s there were many opportunistic infections
which people were learning on. There was a whole cohort of physicians
who learned in the late 1980s, early 1990s to manage those conditions.
Because they are much rarer, and some are very rare outside specialist
centres with a number of beds and a big catchment area, keeping
the message that HIV needs to be considered in the diagnosis of
somebody who goes into a district general hospital with a fever
and pneumonia is an essential message which we need to keep getting
across. Because only one a year may turn up there it is still
something you cannot afford to miss because the outcome will be
that much worse. That is why we need better networks of care where
every unit, wherever people are, is linked in to obtain specialist
access, information and help, even for a general physician who
might be faced with a problem.
Julia Drown
670. I should like to move on to funding and
commissioning. We have had evidence to the Committee from people
raising concerns over the ending of ring-fencing on HIV funding.
I wondered whether any of our witnesses might be able to tell
the Committee about their view on what impact that might have
on patients.
(Dr Barton) May I offer to table something which I
mentioned and I will tell you about it, if I may? The effect of
commissioning has been surveyed by the Terence Higgins Trust along
with PACT and Beaver in something which has just come out called
Disturbing Symptoms. THT sent me a number of copies, which
I should like to distribute. To summarise, essentially it was
a survey done of about 20% of primary care trusts (PCTs) in the
late summer this year: over half of the PCTs surveyed did not
have an agreed process for implementing the national strategy;
about two thirds did not have an up to date assessment of local
sexual health and HIV needs; more than one in four had not included
it in their SAF at all; one in five did not have a lead named
person. From our perspective that completely backs up everything
we have experienced in London with regard to the shifting the
balance effect coming at the same time as implementing the strategy
need. Where individuals within a health authority had developed
a special expertise and understanding of the issues, both amongst
users and amongst clinicians and health care workers in the service,
who had specialist commissioning knowledge, many of those people
appear to have either `evaporated', moved on to other jobs or
been lost, or are not in the right place because of the way PCTs
have been organised. From the Chelsea and Westminster point of
view, even though we feel relatively lucky in having some continuity
with people who did work in the old health authority, it is those
people, who were the old health authority people, with whom we
have maintained contact, wherever they have gone in the PCTs.
Also there has been a dispersal of the way in which you can be
reactive in that one of the problems is wanting to talk to somebody
about the expected increase in patients, wanting to talk to somebody
about the expected increase in drug costs. At the moment there
appears to be no lead person either within the PCT or indeed within
London who is taking responsibility for that. Many people have
an interest in specialist commissioning or in a consortium arrangement
but finding someone, whether it be a chief executive or a commissioner
who can take responsibility and say yes, I am the person to tell
about this problem, is proving very difficult.
Chairman
671. I am very struck by what you have said.
When we were in Manchester we were very concerned that the picture
they portrayed there was one of some degree of confusion as to
who was doing what in relation to commissioning services. Another
surprising element of this inquiry has been the very limited evidence
we have had formally from public health specialists. Are you uneasy
about the placement of the wider public health function within
PCTs? Are we looking at something broader than purely and simply
the issue of sexual health?
(Dr Barton) Our lead PCT in the North West sector
is Hammersmith and Fulham and we are fortunate that the chief
executive is an ex public health doctor, Dr Hargreaves. Although
she is very well aware of and understands the problems, I would
be aware that for the PCT, it is not a priority and public sexual
health is not a priority, and that the NSFs and targets which
confer priorities to chief executives, in vulnerable jobs, across
acute trusts and across PCTs. Not having that, and that was a
specific in the implementation plan for the sexual health and
HIV strategy, one of the responses said that many people were
concerned there was no NSF. It answered it in a way by saying
that only a limited number of priorities can be set and basically
saying no, sexual health and HIV do not merit that level of priority.
In the new system, as fragmented as it is, it is inevitably then
going to fall down the list of priorities, for people to say you
are now responsible for working to make sure that within our area
we offer a decent quality of service. That is a problem: however
hard working and however well meaning people are it is difficult
to get it on a priority list.
(Ms Lowbury) Your question was about the effect of
mainstreaming. One of the things which a lot of people are concerned
about at the moment is that there has been a kind of double whammy.
On the one hand the traditional ring-fencing and funding of HIV
for treatment and prevention has been removed and at almost the
same time there has been a complete restructuring of the NHS in
terms of commissioning arrangements. The people who understood
what was being done with the ring-fenced money are no longer necessarily
there, at the same time as the ring fencing has been removed.
That is why a lot of people perceive it in particular as a threat
because a lot of expertise has been lost, the understanding has
been lost and that is compounded by what Dr Barton has been describing
in terms of the lack of prioritisation for HIV and sexual health.
I am certainly very concerned about that and without saying if
you accept it you cannot go back to the situation you had before,
then at the very least I would argue that there has to be something
which will encourage PCTs, commissioners within PCTs, to take
on HIV and sexual health, to recognise it as a priority. One mechanism
may be for individual PCTs not to commission the services themselves
but to work in consortia and, as Dr Barton has just described
in his area, for one PCT to take the lead among a number of PCTs.
At least then there can be a little more accumulation of expertise
and services can be commissioned across an area which may be roughly
equivalent to what the service network would cover and there can
be a rational approach to the services which are needed for a
population of the sort of size which it is appropriate to look
at for a disease like HIV. Even with that, there is still a worry
and unless HIV and sexual health start to appear, if not as an
NSF then in the planning and priorities framework for the NHS
and in performance indicators, then it is going to be very, very
difficult for people who are newly coming into HIV commissioning
to take the steps needed and to counteract the damage which might
be done by the mainstreaming of the previously ring-fenced budgets.
Julia Drown
672. At this stage it is not even clear in many
parts of the country where the commissioning is going to take
place whether it is going to be in consortia or whether it is
being done individually, let alone the fact of trying to get a
lead person.
(Dr Barton) Yes. This concern is not new. Some of
us sat on the ministerial stocktake in 1998. The effect of residence-based
funding and how you would ensure that people continued to have
freedom of choice to go to the treatment and care centre that
they wished was discussed then and how you would ensure the movement
of money to follow the patient. Then with mainstreaming and then
with shifting the balance, there is now concern about who is responsible.
We were told that specialised commissioning, regional specialist
commissioning groups would be the key. These would be individuals
who would be able to move across and move the PCTs to keep going
with something which was more important than their local health
economy. Within London I went to a meeting last month where it
is clear there is that tension between the freedom of the PCTs
to choose whether to pay for something or not and something which
is perceived, along with a lot of other specialist areas, as having
a specialised commissioning priority. From our perception—I
guess we would say that—we would argue that specialist commissioning
was put there in order to protect something from a system which
is there for individual health care; but that public health care
has to come from looking at a broader population need and the
needs of running a service across networks where people are free
to move from one place to another. At the moment there does not
appear to be the central lead about HIV and sexual health. There
has been a review of specialised commissioning which should have
been published some time ago and, I understand has not been published.
I know what is concerning a lot of the specialist commissioners
in London, particularly as they try to relate to PCTs outside
London for those patients who travel into London for their treatment
and care, is whether or not agreement can be reached with London,
when you are talking about ten patients coming from, for instance,
Norfolk, and how commissioning can work unless there are some
clear guidelines about ensuring the money follows the choice of
the patients as to where they are properly treated.
673. Would I be right in thinking that what
I am hearing is that the concern is really over commissioning
arrangements, about trying to establish those important relationships,
rather than the ending of the HIV ring-fencing?
(Dr Barton) Yes. Mainstreaming happened slowly. People
kept saying ring-fencing has gone and argued it should be there
and suddenly a bit of money would come back from somewhere. We
all accepted that the rules in the system were there to maintain
the freedom of choice for the patients as to where they are treated,
to support the quality of the service and develop networks. Then
mainstreaming the money is fine. It would work, as long as it
is on a priority which gives the public health need into those
people who are then making the final decision of who pays the
bills. Left with the lack of priority and the uncertainty and
the lack of individuals to act as advocates within the system,
the acute trusts are potentially going to face a shortfall in
money coming to support patients they are treating; even though
within the implementation plan this is a steady state year, there
are arguments happening about not paying as much because of cost
pressures elsewhere. What then happens when the money runs out
in our trust because it has not come in? That is a local PCT problem.
Where is the instruction from the centre that it has to be paid,
that patients have to be treated?
674. What we do have are the national standards
for HIV treatment and support and social care. From what you are
saying, we as a committee cannot be very optimistic that that
is being taken up by PCTs and being implemented. Do any of our
witnesses have any views on how that should happen? How we as
a committee might recommend it could happen?
(Ms Lowbury) We have been developing the standards
and they are actually still in draft and not out there officially.
However, we have been sharing them quite widely in consultation
and I know some people have already started to look at how they
can use them. What the standards are designed to do are to describe
a level of care which anybody with HIV should be able to expect
wherever they live in the country, whether they are in London
and accessing Chelsea and Westminster, or whether they are in
Cumbria. The structure of the services may differ but the general
level of care should be the same. I have been told that some commissioners
are using them in quite a constructive way. Somebody told me she
had done a summary framework for her area following a care pathway.
It goes back to what I was saying before, that if this area is
not seen as a priority, then standards may sit in the bottom drawer.
If the standards are not used in terms of commissioning to ensure
that the services commissioned are designed to reach that equitable
level of care and if they are not used in performance management
by strategic health authorities and if they are not used in clinical
governance within trusts or in audit, then their usefulness will
inevitably be limited. They need a push, they need something.
675. When we put that to Ministers, I know what
Ministers will respond. They will say the whole of the health
service is saying we are giving them too many targets, too many
things to deliver on.
(Mr Collins) HIV is not a static disease. It is the
focus of probably more research as a disease area than practically
anything else in the bigger picture. Within the UK you have arrived
at a situation where you have a really high level of expertise
which is concentrated largely in research centres and you have
the prospect of that expertise being lost. It is not just the
implications for the standards of care now, but the implications
for the standard of care as that changes. The standard of care
and treatment will be different in six months and will be different
in two years and the drugs will be different and the diagnostic
tools which are used to optimise patient management will all change
very rapidly. I guess the one clear thing which does come from
cost economic studies and research is that treating a well patient
is far cheaper than treating someone who has already become ill.
The prospect of having to educate 300-odd PCTs in whether they
should use a more sensitive viral load test from a patient perspective—and
we are an activist group which tries to raise that level of awareness
as research changes—is a nightmare unless you have a centralised
pool which is then recognised and resourced. If you have a centralised
PCT which carries the weight for the standard of care within the
UK and then that is resourced adequately so it says that in providing
treatment without adherence support you are throwing half your
money away, then you have to recognise that needs resourcing within
PCTs. The main concern of mainstreaming is that that safety for
that level of care has just been removed. We know management are
concerned that it will be maintained at the current level.
(Ms Lowbury) I think you were asking in a way whether
it was wrong to say that HIV and sexual health are not a priority,
whether we accept that is what has been said. Talking about the
mainstreaming issue again, in the early days of HIV, a ring-fence
was put around the budget because at that time HIV was perceived
to be a very serious threat to the public health of this country.
Perhaps over the years, as the numbers did not increase as fast
as we expected and with the effectiveness of new treatments, that
feeling relaxed, HIV slipped off the agenda and it is now not
being accepted as a priority. However, we have just heard that
the Public Health Laboratory Service predicts a 50% increase over
the next three years and I should say it is very dangerous to
assume that it should not be a priority; it really should. It
is a communicable disease. It is increasing at a rate which is
nothing like the rate of the other priorities in the health service.
I would say that it should be one.
John Austin
676. In Manchester, although it had been agreed
that a single PCT would commission for several PCTs, they had
not kept sexual health within one area: one PCT was commissioning
one aspect of sexual health services and another PCT was doing
something else. Do you think that is wise, or do you think it
should be a single commissioner for the whole of the sexual health
area? With that, what do you think the role of the strategic health
authority is?
(Dr Barton) What we should like is for commissioning
to be more than just arguing about money. It has to be a discussion
about the service which is offered to patients. All too often
any discussion you finally get, as with the old style purchasers,
the health authorities and now the commissioners, is about your
drugs budget, whether your drugs budget is likely to be overspent;
it is going to be a cost pressure. It obsesses commissioners in
their role. You have to begin looking at the service you are providing
both for those people who are diagnosed and efforts to diagnose
people who have not yet been diagnosed. That needs sexual health
and HIV to be brought together. There was a certain amount of
divvying up in sectors where there were several PCTs, "You
do this. We'll do that. You do the other", without logic,
without a plan, just to share the workload because they knew they
were going to be overstretched and there were limited resources
and also the political tensions around one PCT becoming the lead
and that has been to an extent the case in London. What then happens
when you have a lead PCT? Can they make decisions? Can those decisions
be strategic about the way they are going to model services? In
our area, how do they relate to the whole of London? Unless you
draw the whole of London together, with a senior level of clinicians
and commissioners working together, the problem is that you do
not actually get a coherent plan. You just end up arguing about
drugs budgets and writing letters about risk sharing of monies
and overspending.
Chairman
677. May I raise a wider concern in respect
of the role of PCTs, which in a way underpins all we have been
talking about in this inquiry? This is a grossly neglected area
of health provision and one of the reasons why it is a grossly
neglected area, whether it is PCTs or whatever, is because people,
the public, those who will be users of the service, are not in
a position to campaign openly and argue for improvements to what
frankly in some parts of the country is quite disgraceful provision,
appalling provision. We have picked that up and received evidence.
I made the point a few weeks ago that I do not recall in nearly
16 years as a MP receiving one letter from anybody saying that
they went to the local GUM clinic and the service they received
was poor. That simply will not happen. We all know that. How do
we get an awareness of the importance of this whole area into
the political mainstream and an awareness of the fact that frankly
this whole strategy is shambolic? You can go away and think about
that if you want.
(Dr Barton) We can encourage those users of our service
to write to you.
678. The point I am making is that we are concerned
here about how to ensure that PCTs reflect the genuine concern
about this area. I am not optimistic. Within the climate of the
users, the patients, the people accessing the services, being
unwilling to speak out, although there are campaign groups and
individuals, in terms of pressure on MPs, there is none. It is
a non issue. Look at the press benches. Nobody is here. That is
very interesting. Nobody here.
(Dr Barton) In response to that you could take the
cup half full view and say HIV treatment and care in this country
has been a fantastic success. Nobody in this country since about
1996 has been refused access to any drug which is going to help
them. We have some of the best units in Europe. Wherever you are
in the country, if you can get into a GU clinic with all their
current pressures, you will access somebody who is a well trained
professional; we have high standards of training. You can look
at all those good things and the way all the bases are currently
loaded for it all to go horribly wrong and nobody seems to be
taking notice. But it is not big news. Nobody has been turned
away from an HIV unit and told they cannot have treatment today
or they are going on a waiting list for treatment. The bases are
loaded because the money is not where it needs to be, it is not
following the patient, the people with the money down at PCT level
do not see this as a priority. So at the moment this is so timely
because we are looking, as you are, at this vision of it all going
wrong, but actually because of the incredible hard work in pulling
it together by people on the front line it is hanging in there.
We are going on spending money on drugs whether we have it or
not.
Dr Naysmith
679. That may be true for HIV, but it is not
necessarily true for some of the other sexually transmitted diseases.
(Dr Barton) No.
3 The Lancet, Aug 30 1997, 350, p 647 Back
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