Memorandum by Terrence Higgins Trust (HA
1. TERRENCE HIGGINS
1.1 Terrence Higgins Trust (THT) is the
leading national HIV and sexual health charity for England and
Wales. We undertake HIV prevention, health promotions and social
care for people with HIV and other STIs and for populations at
particular risk; gay men, African people, people living with HIV
and young people. We also undertake policy initiatives based upon
our service experience and the needs and concerns of people with
1.2 THT would welcome the opportunity to
present evidence in person to the Committee; in particular on
the consequences of changes in charging for overseas patients
and on the evidence for the current state of sexual health services
and commissioning within our forthcoming survey (Clinical Trials?
2.1 THT is the largest provider of HIV-related
services to people who are recent migrants to the UK (of whatever
legal status) and to African people living in the UK. Through
our regional offices, we support many people who are unsure of
their entitlement to services in the UK, and some whose entitlement
has decreased due to recent Government initiatives. Additionally,
with George House Trust (GHT) we are the publishers of the only
research into recent migrants with HIV in England which establishes
their motivation for testing and timescale of diagnosis. We therefore
have considerable experience in the practical implications of
recent and proposed changes. These have led us, along with a number
of other HIV and sexual health organisations, to found a campaign
to change the current regulations which include HIV in those NHS
services for which charges can be levied.
2.2 Prior to April 2004, all NHS treatment
was available free of charge to anyone who had been in the UK
for more than 12 months. It was also available free to those applying
for asylum or for leave to remain. This situation, while not ideal,
ensured that anyone who was clearly a long stay resident of the
UK would receive the health treatment they needed. The Regulations
governing NHS charging, and a number of key exemptions to them,
were enshrined in the NHS Act 1977 and the NHS (Charges to Overseas
Visitors) Regulations 1989. The exemptions ensured free treatment
for a range of conditions on public health grounds, including
TB and all sexually transmitted infections except for HIV. For
HIV, there was a theoretical 12 month wait to access free NHS
services, but many HIV clinicians were willing to treat people
who had been in the UK for shorter periods yet were clearly settling
2.3 New restrictions were imposed on all
hospital services from April 2004, in response to fears that people
were flying in to the UK for the sole purpose of accessing NHS
services. These mean that long stay visitors, anyone in the UK
without documentation, and anyone refused asylum or leave to remain,
but not removed from the UK (a not infrequent occurrence, in our
experience) are liable to be charged for any NHS services other
than those provided in an emergency or those outlined in the 1989
2.4 Although HIV was repeatedly named in
the media as an example of treatment tourism, the only piece of
extant research (THT/GHT 2003) indicated that the reverse was
true. Most migrants were unlikely to be aware of their status
until they had been in the UK for more than nine months. THT has
subsequently become aware (see below) of the impact of these changes
on some of the people using our and other services, and of their
long term impact on the public health and the public purse.
2.5 As of December 2004, we are also awaiting
the outcome of a related consultation by the Government on reducing
eligibility to primary care services. If the outcome of this consultation
parallels that for the acute sector, anyone excluded from free
NHS services would be unable to access primary care for an initial
assessment of their health needs to determine whether they are
in emergency need. We believe that, in the case of HIV and probably
in many others, this would further damage individual and public
health and lead to a reversal of the recent reduction of waiting
times and improved conditions in Accident & Emergency Departments.
2.6 It is clear (as of December 2004) that
these changes to the regulations are already causing hardship.
It is also clear in the case of HIV that, while they may result
in a small short term cost reduction to local NHS budgets, in
the longer term they are highly likely to have a negative effect
in all three major areasthe public purse, the public health
and individual health. From cases already seen by THT, or referred
to us for support, the following concerns have arisen:
2.6.1 Individuals coinfected with TB and
HIV (a relatively common combination for African people) have
been told that, while TB treatment is free, the HIV treatment
necessary to ensure that their TB treatment is effective will
be charged for. This has resulted in at least two cases known
to us where patients have left hospital before the end of their
TB treatment, risking the development of multi-drug resistant
tuberculosis (which is transmissible) and returning to the community
still able to transmit TB, as well as HIV.
2.6.2 At least two pregnant women have been
told they will be charged (and thus effectively refused) for temporary
HIV treatment to prevent transmission of HIV to their unborn child.
This is particularly cruel and short-sighted, since such treatment
is relatively inexpensive, highly efficacious, and prevents the
child becoming a burden on the state in future years. A number
of hospitals have chosen to interpret antenatal treatment and
"emergency" or "prevention" treatment, but
this is in all probability outside the strict interpretation of
the new guidelines.
2.6.3 Patients taken to hospital as emergencies
have not been informed of charges, usually several thousand pounds,
until their discharge from hospital. In one case, they were subsequently
refused access to their medical records (needed to apply for leave
to remain) unless they paid their (very large) large bill first.
Since the patient in question had been admitted in a coma and
treated for several days in intensive care, it is difficult to
see how this could be interpreted as anything but an emergency,
nor how the patient in the coma could have been expected to refuse
treatment if they could not afford the charges.
2.6.4 People from one of the communities
of highest prevalence for HIV in the UK have begun to ask why
they should test for HIV if they may not be able to obtain treatment
for it. While we believe there is almost always good reason to
know one's diagnosis and thus be able to make informed decisions
about both health and sexual behaviour, this view is gaining currency
amongst migrant communities and is impacting on testing campaigns
2.6.5 There have been several cases known
to us of misinterpretation of the new regulations to refuse treatment
to those entitled. This included a pregnant woman, refused antenatal
checks despite entitlement, who without skilled outreach work
would have been lost to both antenatal and HIV services. There
have been other cases where the manner of questioning has discouraged
people entitled to services from reattending for them.
2.6.6 NHS staff have said to THT that "people
may be charged but if they can't pay, we won't stop treating them".
However, there have already been examples of debts of this kind
being handed over to debt collection companies for pursuance.
Where people have no legal means of employment and are effectively
destitute, this is not only a waste of time and money but an enormous
stress upon the already unwell individuals pursued.
2.6.7 Although many HIV clinicians are currently
refusing to implement the changed regulations, this opens them
up to disciplinary proceedings by their Trust employers. It also
means that, although in many hospitals recent migrants without
entitlement are still newly accessing HIV services, when they
require other services within the hospital they are being identified
and charged. Thus, their HIV treatment may be less effective.
The wide variety in practice between different hospitals and different
HIV clinics on this means that there is a "lottery"
in accessing treatment, where the least skilled and least cunningand
the most honestare most likely to lose out.
2.6.8 It has come to our attention that
a number of NHS commissioners of HIV and sexual health services
across England have made deliberate decisions to co-operate with
their local clinics in not charging people who are clearly long
stay residents of the UK, even if undocumented, for HIV services
on the human, public health and financial grounds outlined here.
However, as in 2.6.7, as soon as the patient in question requires
other services within the hospital (as many people with HIV disease
may do, especially if diagnosed late or pregnant), this decision
is challenged and they are again subject to charges for all treatment
which they cannot meet.
2.7 In the longer term, THT has the following
2.7.1 It is unlikely that charging for treatment
(and thus effectively refusal of it) will encourage people refused
asylum or undocumented migrants to return to countries they have
been determined to leave, many of which have even less health
infrastructure and free treatment than they would receive on emergency
grounds in the UK.
2.7.2 People with HIV unable to access antiretroviral
treatment and associated services will remain in the community
and will be more infectious than if in treatment. HIV treatment
contributes to decreased infectivity of an individual. Failure
to treat will also mean that people who would otherwise encounter
a range of services in a clinical setting will be lost to interventions,
such as counselling and group work, designed to support people
in maintaining safer sex and preventing behaviour likely to contribute
to onward transmission.
2.7.3 Community discussion of charging regulations
will discourage people, including some entitled to free NHS services,
from coming forward to any kind of support services for fear of
possible punitive financial or legal consequences.
2.7.4 People with progressive HIV-related
immune deterioration will access emergency services multiple times,
with increasing frequency and severity of need, resulting in many
cases in far higher incident costs than a simple ongoing prescription
for antiretrovirals. The annual cost of first-line combination
therapy is now under £10,000; one week's stay in intensive
care can cost almost as much, and this could be repeated many
times, given the high standard of emergency medical care in the
UK. This is not only the view of THT, but also of highly experienced
2.7.5 People coinfected with HIV and other
STIs will be able to access free treatment for gonorrhoea or chlamydia,
but not for HIV, which is the more serious condition transmissible
by the same route. It is a strange logic which enables people
to access free treatment for gonorrhoea on the grounds of public
health, but not for the potentially fatal, and equally transmissible,
2.8 For all the reasons and experiences
stated above, THT believes that there is an urgent need to amend
current NHS Regulations so that HIV treatment is included, alongside
treatment for TB and for all other STIs, in those conditions exempted
from charging on grounds of public health. This amendment is not
only humane and a vital adjunct to the newly published White Paper
on Public Health and the Government's recently published Plan
for TB, it is also cost effective. The campaign to amend the regulations
founded by THT, the National AIDS Trust, the African HIV Policy
Network, the All Party Parliamentary Group on AIDS and the UK
Coalition of People With HIV has, in its first week, attracted
support from seventeen major national and regional care organisations.
These include Citizens Advice, the Joint Council for the Welfare
of Immigrants, the Medical Foundation for Care for the Victims
of Torture and Providers of AIDS Care & Treatment (PACT),
a body representing HIV clinical services.
& HIV STRATEGY
3.1 Despite commitment from Department of
Health officials and from charities and clinician groups, it has
proved difficult to get sexual health prioritised at a local level
since the publication of the last Health Select Committee report.
Without clear standards and targets against which performance
will be judged, and without performance management, there is little
external motivation for local Trusts to prioritise sexual health.
3.2 Consequently, since the report was published:
3.2.1 A survey of Strategic Health Authority
reports, undertaken by THT, fpa, Brook, NAT and MedFASH showed
that the majority had not included any mention of sexual health
in their Local Delivery Plans, without which any prioritisation
was highly unlikely.
3.2.2 New diagnoses of HIV have continued
at a high rate across the country.
3.2.3 Reported diagnoses of chlamydia and
syphilis have continued to increase and, while those for gonorrhoea
have officially gone down, laboratory reports of the condition
have increased, suggesting that people are seeking treatment through
routes which do not tend to make official notifications, such
3.2.4 Waiting times at GUM departments have
not improved nationally and continue to be a major cause of the
high level of onward infection, since many people do not cease
sexual activity while waiting weeks for their appointment.
3.3 THT, in collaboration with the British
HIV Association and Providers of AIDS Care & Treatment, recently
completed our third annual survey of HIV and sexual health PCT
leads and clinicians. The survey shows that many services continue
to flounder, with two thirds of GUM respondents admitting that
they had to turn away people seeking services, and one third stating
that they did so on a regular basis. However, a number of respondents
clearly indicated that, where service redesign was being undertaken
and where funds had been made available for new initiatives such
as a young people's clinic or nurse practitioners, some relief
from the pressure of need had occurred and matters were capable
of improvement. THT would be happy to provide the Health Select
Committee with a copy of the full findings, which will be published
in early January.
3.4 The Choosing Health White Paper, recently
published, provides a very important opportunity to rectify and
improve the overall situation. It makes a strong commitment to
improve sexual health and access to services. This is backed up
by specific targets for Primary Care Trusts (PCTs) to achieve
48 hour access to GUM services and to reduce diagnoses of chlamydia
and gonorrhoea. There is also a very welcome commitment to invest
an extra £300 million over the period up to 2007-08.
3.5 This demonstrates strong governmental
leadership in the field of sexual health and is to be very much
welcomed. In order to ensure that the NHS can live up to this
leadership commitment it will be important to:
3.5.1 Ensure that PCTs oversee the redesign
of local services to improve access and offer a genuine choice
of improved NHS funded statutory and charitable services to users.
There are a range of pilot projects across England which could
inform service redesign.
3.5.2 Ensure that PCTs use the additional
investment which they receive to facilitate service redesign and
expansion of capacity. There has been recent evidence from the
British Association for Sexual Health that funding designated
for modernisation and support of GUM services has been used elsewhere
by hard-pressed Trusts.
3.5.3 Ensure that DH maintains a strong
commitment to the commissioning of nationally delivered and funded
sexual health promotion and information programmes.
3.5.4 Ensure that, in parallel with the
commitments in the White Paper, work is undertaken to reduce the
levels of undiagnosed HIV. This will involve resourcing both the
costs of expanding HIV testing and the costs of providing HIV
treatment to many of those diagnosed as a result.
3.6 Finally, THT has published "Blueprint
for the Future: developing sexual health and HIV services"
which has been widely welcomed by a range of Government and clinical
leaders as a useful tool in service restructuring. We would be
glad to provide the Committee with copies of this, should they