Select Committee on Health Minutes of Evidence


Memorandum by Terrence Higgins Trust (HA 14)

1.  TERRENCE HIGGINS TRUST

  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 HIV.

  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? THT/BHIVA/PACT, 2005).

2.  CONSEQUENCES OF THE NEW AND PROPOSED CHANGES IN CHARGES FOR OVERSEAS PATIENTS

  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 here.

  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 exemptions.

  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 areas—the 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 targeting them.

  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 cunning—and the most honest—are 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 concerns:

  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 HIV clinicians.

  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, HIV.

  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.

3.  IMPLEMENTATION OF THE SEXUAL HEALTH & 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 as GPs.

  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 so desire.

December 2004





 
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