House of Commons - Health

Select Committee on Health Third Report

6 TREATMENT AND SERVICE PROVISION

HIV/AIDS services

130. The development of new and improved treatments both for the underlying HIV infection and the opportunistic infections has significantly altered the way in which HIV and AIDS affects a person's health and lifestyle. Since 1995, substantial reductions in death rates among HIV-positive people have been reported in many industrialised countries where infected people have access to the latest therapies. Early use of a combination of therapies (such as the triple combination or triple cocktail which makes it more difficult for resistance to develop), before HIV-related symptoms develop, may reduce an individual's risk of developing an AIDS-defining illness. Furthermore, many people with very advanced disease, including those with a prior AIDS diagnosis, have experienced remarkable recoveries in physical health.

131. It has been said that in some cases the latest combination therapy, Highly Active Antiretroviral Treatment (HAART), can be so powerful as to transform AIDS from an invariably fatal illness into a chronic condition. However, a 95% adherence rate to a drug regimen is required for HAART to have optimum effect.[120] Poor adherence can lead to the development and transmission of resistant strains of HIV and about 25% of new HIV cases are now found to be resistant to one or more of the treatment agents. As Ruth Lowbury, Director of the Medical Foundation for AIDS and Sexual Health (MEDFASH) told us:

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SERVICES

132. As the main provider of HIV diagnosis and treatment, genito-urinary medicine services are integral to HIV care, and several witnesses told us of the need for a comprehensive sexual health service which catered to the various prevention, health promotion and care needs of individual patients. According to Dr Simon Barton, issues such as co-infection:

raise a lot of questions about how we link together the sexual health and HIV care of individuals. Many of us feel that people with HIV are a target group for better sexual health management and prevention ... in our own and many other units, people are working to provide regular sexual health screening of people attending for their HIV treatment follow-up. So they do not have to go to queue separately and make an appointment a week hence at their local sexual health clinic.[122]

133. The Royal College of Physicians, in conjunction with specialists and specialty committees, has set out its views of the conditions necessary for effective safe delivery of HIV/AIDS services.[123] Recommended conditions of service for HIV infection include:

a patient newly diagnosed with HIV infection should have an appointment for initial assessment within a week
at the first visit a full history should be taken, physical examination performed, and an STI screen should be offered if not previously done
dietitians, physiotherapists and pharmacists should take part in all aspects of care, and patients should have access to community services and patient support groups
regular outpatient follow-up with monitoring of immunological and virological parameters
when complications occur patients should receive care in dedicated beds staffed by specially trained nurses
longer appointment times are required for these patients than those with STI.

134. The RCP directs that consultants seeing HIV infected patients require the support of junior medical staff who need additional training and that there should also be receptionists, nurses and health advisers. Ideally, where dedicated HIV clinics are held, the RCP states that other healthcare professionals should be available including pharmacists, dieticians and clinical psychologists. In the view of the RCP, HIV clinic nurses are also key members of the clinical team. They develop specialised skills in assessing the wide range of clinical and other problems that patients experience, and may be trained to assist with or to undertake a wide range of medical procedures. They may also help patients by providing a link between services in the hospital and in the community.[124]

135. The RCP recommends that all clinics should have one or more health advisers on duty throughout all clinic sessions. Health advisers help patients to change risk-taking behaviour and to adhere to their treatment. They assist patients with partner notification, provide ongoing support and monitor patients' response to treatment. In doing this work, they help to prevent onward transmission of drug-resistant strains of HIV. It was suggested to us that health advisers could play a particularly important role in supporting those with HIV. Consultants who provide HIV treatment and care for patients may find it difficult to discuss risk-taking behaviour and STIs. Dr Barton told us:

it can be difficult when you have known people for a long time to raise the whole issue of sex and potentially having unsafe sex in a consultation where you have been talking about HIV … this is the reason for the multi-disciplinary team, having health advisers, counsellors, nurses, all working together.[125]

136. However, some HIV clinics do not have access to any support services at all. In Cornwall, HIV services are centralised in Truro where no dedicated nursing time is allocated to them. Repeated attempts by consultants to obtain basic dedicated support services such as dietetics and pharmacy for HIV patients have foundered and there is no community liaison nurse for such patients. Service providers in Cornwall pointed out that while they struggled to fund basic support services the drug budget for HIV treatment "continues to rise inexorably".[126]

137. Much of the evidence we have received strongly suggests that a great many clinics would struggle to meet even a few of the conditions of service set down by the RCP because there are now so many patients to be tested, diagnosed and treated. For example, it is recommended that a consultant should see five to nine patients in a three hour session but we heard from Dr Ade Fakoya who saw on average 15 patients per clinic and from Dr Simon Barton who reported that he usually saw 18 to 20 patients.[127]

138. Dr Paul Lister, Network Lead Clinician of South West London HIV & GUM Clinical Services Network, told us that between 1996 and 2000 South West London Clinics experienced an increase of over 75% in the number of HIV positive patients under care.[128] Royal Liverpool and Broadgreen University Hospitals reported that during 2001-02 the GUM department had witnessed a continued increase in the number of patients with HIV infection, the highest increase arising from patients from ethnic minority groups and asylum seekers or refugees who often needed costly translation services. There had been no corresponding increase in funding for HIV care and management, except in terms of an attempt to meet spiralling drug costs.[129]

139. Evidence from Homerton University NHS Trust in Hackney testified to the fact that some patients wanting to access HIV services were now being turned away owing to increased disease-prevalence and demand. Dr Mayura Nathan from that trust told us that targeted research was needed into the patterns of transmission of HIV and other STIs, to detect new waves of transmission at a local level. However, given the discrepancy between the disproportionate burden of HIV and STIs which affects East London and the resources available for services, the potential for any kind of research or monitoring work (beyond the requirements of the AIDS Control Act 1987 which requires some data collection) is limited.[130]

140. Dr Alan Tang of Royal Berkshire Hospital, Reading (Royal Berkshire & Battle Hospitals NHS Trust) told us that "new cases of HIV arrive at the rate of one a week", that the HIV caseload at his clinic had nearly doubled in two years and that it was projected to expand by another 60% by 2005. Dr Tang reported that such new cases arose almost exclusively from patients of African descent, including refugees and asylum seekers, and that the cost of HIV treatment for an (already overspending) trust had risen accordingly.[131]

141. Language barriers and cultural differences can make counselling and treatment difficult. Given the massive benefits to health and lifestyle of early diagnosis and treatment, it can be demoralising and distressing for service providers to see patients presenting in the advanced stages of disease. Discussing the growing number of asylum seekers presenting with HIV positive status, Dr T R Moss of Doncaster and Bassetlaw Hospitals, told us:

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142. The marked rise in the number of infections found in people arriving from abroad, and the consequential impact on access to services, is a major cause for concern. We note that this concern has in some cases taken the form of calls for mandatory testing of groups such as refugees and asylum seekers entering the country.[133] We sought the views of service providers on the issue of mandatory testing. We heard of their concern for people whose HIV goes undiagnosed, and for those people who might become infected as a consequence of this; and of their commitment to treat and care for each individual who presents at their clinics. Dr Ade Fakoya told us:

134

143. Dr Fakoya's view was that mandatory testing would drive the HIV epidemic underground by generating stigma and fear, leading to a decline rather than an increase in rates of diagnosis. Dr Barton told us that anyone who is to have an HIV test should be able to give informed consent, as part of the necessary preparation for a diagnosis.

144. We are concerned by the trends in HIV and support the Government in its aim to reduce the prevalence of undiagnosed HIV and in turn to safeguard public health. Early diagnosis of HIV not only reduces the chances of it spreading within the community but it also greatly improves outcomes for those infected. On the basis of the evidence we have heard, however, we do not believe mandatory testing of asylum seekers, refugees, immigrants, visitors newly arrived in this country, and returning residents, to be an effective way of achieving the Government's aim. We recommend that HIV testing for newly arrived people should be voluntary, but should have as its clear objective the promotion of full disclosure of any relevant medical history and should also aim to facilitate appropriate and culturally-sensitive counselling before and after testing for HIV.

145. We welcome the Government's commitment to an expansion of the roles played by nurses and by health advisers in caring for HIV patients. However, unless resources are also allocated to increasing the capacity of HIV clinics and care teams in general, HIV patients will have to wait longer for shorter consultations.

FUNDING TREATMENT AND SERVICE PROVISION FOR HIV AND AIDS

146. According to the National Association of NHS Providers of AIDS Care and Treatment (PACT), the cost of managing a patient with HIV in the UK is £15,000 per patient per annum. The total cost of treatment and care in 2002-03 will be £345 million, with the expectation of further diagnoses at an additional cost of £30 million. The Medical Foundation for AIDS and Sexual Health (MEDFASH) cited estimates suggesting that by 2007 the cumulative lifetime treatment costs for those known to be infected with HIV will exceed £5 billion. MEDFASH set this figure alongside the Strategy's assessment of the cost/benefit of preventing a single case of HIV at £0.5 million, and concluded that preventing half the current annual new infections would provide a cost/benefit of £1 billion.[135]

147. Some £165 million was allocated for treatment and care in 2001-02 and current estimates are that providers are under-funded by around £3,000-5,000 per patient per year after their patients have been diagnosed.[136] This situation is likely to be exacerbated by the 6,500 newly diagnosed HIV cases in 2002. HIV drug therapy is the biggest cost pressure on budget allocation for treatment and care. Persistent under-funding, combined with spiralling drug costs and the emergence of many new drugs on to the market, means that clinicians struggle to prescribe the appropriate therapies for their patients and that funds needed for other sexual health services may be diverted to pay for HIV drugs. Dr Barton told us that:

137

148. We recognise that the field of HIV therapy is one which develops quickly and we appreciate that any guidelines on the use of HIV drugs might require frequent revision. However, we recommend that the National Institute for Clinical Excellence (NICE) should undertake an appraisal of treatments for HIV patients so that service providers and commissioners can collaborate and plan to make available the most effective treatment.

149. We asked the Public Health Minister whether, in light of increasing costs, prescription of HIV drugs would be rationed. She told us that "there are no plans to ration access to clinical treatment."[138] We are reassured by the Minister's statement but we remain concerned that a shortfall with regard to monies for HIV drugs will divert funds from other areas of HIV and GUM treatment and care. Adequate funding for HIV drug therapy constitutes the only means of ensuring that HIV patients have access to the most appropriate drugs and that the other aspects of the sexual health service can be maintained and developed according to patients' needs.

150. Until recently, funding for HIV services was 'ring-fenced' from the rest of a health authority's budget. The Department has provided steady-state funding for specialised services for 2002-03 and PCTs have been obliged to honour the service agreements of their parent local health authorities, but as PCTs gain financial independence they will be able to allocate funding according to their own priorities and HIV monies will be mainstreamed. PCTs are now expected to fund services for HIV patients through mainstream allocations.

151. Those involved in providing HIV services have had to respond to NHS-wide reform and to the end of ring-fenced funding for HIV treatment and care. Ruth Lowbury for MEDFASH told us of the concerns held by many health professionals with regard to the place of HIV in the mainstream and in the priorities of PCTs:

139

152. PACT told us that London was "not ready for the transition to PCT-funded HIV services", and identified a general problem with the new commissioning structure in that much commissioning expertise is concentrated in Strategic Health Authorities which do not have financial responsibility.[140]

153. The Department has acknowledged the concern that the end of ring-fenced funding for HIV treatment and prevention would be detrimental to HIV/AIDS service provision and we were assured that investment in HIV treatment and prevention would be monitored through performance management mechanisms and through the Service and Financial Framework (SAF) which requires PCTs to make statements on their expenditure and investment plans. According to the Department, the evidence suggests that investment levels have been maintained, if not increased.[141]

154. However, as Mr. Nick Partridge of Terrence Higgins Trust told us, concerns remain about funding for HIV/AIDS services as sexual health is not on the list of twenty 'must dos' in the SAF round. Without this status, and without a National Service Framework "HIV and sexual health ... has very little to encourage chief executives of primary care trusts to ensure that sexual health and HIV need is met and that good competent people are placed to work collaboratively."[142]

155. The Planning and Priorities Framework replaces the Service and Financial Framework. As part of the new Framework, PCTs are required to produce Local Delivery Plans detailing how local organisations will meet local and national priorities and targets within available resources over three years. The Planning and Priorities Framework sets out 13 areas to be included in Local Delivery Plans. Sexual health is not named as one of these 13 areas.

156. The Public Health Minister sought to reassure us that sexual health and HIV would be regarded as a priority area, despite their omission from Local Delivery Plans. She told us that sexual health would feature in areas such as 'Reducing Health Inequalities':

143

157. This, the Minister told us, was "one of a number of levers in place to make sure that sexual health services become a more important issue at local level through PCTs."[144] She added that the requirements of the AIDS (Control) Act 1987, which directs health authorities to make annual reports about HIV/AIDS, was to be revised to accommodate a "monitoring system". This would "give us more detail about where the money is actually being spent, and more importantly, rather than just the money, we will be concentrating on the outcomes to see what difference it has made to patients and to communities."[145]

158. Now that funding for HIV services has been mainstreamed, and that commissioning is PCT-led, sexual health and HIV should be a priority at local level on grounds of public health. However, sexual health and HIV service providers have told us that they need help to persuade commissioners to allocate resources to an area which remains stigmatised, particularly in rural areas where prevalence of HIV is low. We are not convinced that the current arrangements will ensure that sexual health will be treated as a sufficiently urgent priority. Given that sexual health has no National Service Framework, and until NICE guidelines are introduced, we recommend that sexual health and HIV be included in Local Delivery Plans.

THE STRATEGY AND HIV SERVICES

159. The Strategy aims to reduce undiagnosed HIV and to improve health and social care for people living with HIV by developing managed networks for HIV and sexual health services, and by shaping services around patients, their families and their carers.[146] These managed networks would provide a range of open access services with clear referral pathways, staffed by professionals who would themselves have access to support, training, and opportunities for continuing professional development.[147] The Implementation Action Plan states that the Department has prioritised the training and development needs of the sexual health workforce.[148]

160. The Strategy set targets for reducing undiagnosed HIV:

by the end of 2004, all GUM clinic attendees should be offered an HIV test on their first screening for sexually transmitted infections (and subsequently according to risk) with a view to:

increasing the uptake of the test by those offered it to 40% by the end of 2004 and to 60% by the end of 2007
reducing by 50% by the end of 2007 the number of previously undiagnosed HIV infected people attending GUM clinics who remain unaware of their infection after their visit.

161. As part of the Strategy the Department undertook to:

develop the role, and increase numbers of, health advisers
establish service networks for HIV, backed up by standards and guidelines
set standards to promote good practice, including improving information and access to services
set broad standards for the delivery of social care and support for people living with and affected by HIV.

CONTRIBUTION OF PRIMARY CARE

162. With regard to HIV and sexual health services, under the new three-level model of working for sexual health service provision, General Practice should offer discussion of sexual history and risk assessment, and HIV testing and counselling. The Commissioning Toolkit states:

Training to support these components will be part of existing training structures such as undergraduate and basic professional training and will be expected to be present in the majority of services to which patients may self refer, such as primary care services and self-referral sexual health services (contraception and GUM).[

149

163. Some of the evidence we received highlighted the potential for wider access to HIV testing through making it available in the primary care setting. Ruth Lowbury told us that:

150

164. With enhanced awareness of the signs and symptoms of HIV on the part of primary care service providers, more of the thousands of people who remain unaware of their HIV status could be tested and diagnosed. Ruth Lowbury went on to outline an enhanced role for GPs:

151

165. However, a number of those submitting evidence told us that the majority of people with HIV/AIDS did not use their GP but instead visited specialist centres for a full range of primary medical care. They worried that GP services were already stretched beyond capacity and also that some family doctors might have limited experience of people with HIV/AIDS. As the Medical Foundation for AIDS and Sexual Health (MEDFASH) told us:

152

166. The Terrence Higgins Trust and PatientView conducted a survey which found that GPs were reporting problems collaborating with specialist HIV services and also understanding the complex issues around confidentiality and HIV.[153] The Commissioning Toolkit acknowledges that "primary care practices will need to negotiate a pace of change with PCTs to aim towards providing the full range of Level 1 elements."[154]

167. We recognise that GPs and other primary care providers have an important role to play in the diagnosis and support of people with HIV as well as in their general medical treatment. HIV is a chronic condition. Dealing with chronic conditions is traditionally an area of strength for primary care. We therefore welcome moves to give primary care more of a role in the management of HIV/AIDS. However we are not convinced that the rebalancing of care provision is being sufficiently well supported. Accordingly, we recommend that these service providers be supported through training and through involvement in service networks. We also believe that it is crucial that the expertise currently residing within GUM is not diluted as a consequence of any move to primary care. So we would encourage any measures which promote close interaction between the expertise now found in secondary and tertiary services and that in primary care.

CONTRIBUTION OF SOCIAL CARE

168. The Association of Directors of Social Services (ADSS) argued that "Discharging patients with an AIDS diagnosis without the right support structures in place defeats the objectives of responding to the crisis in waiting lists in the NHS, and of good patient care."[155] The health visitors and social workers who provide support structures for people who have been diagnosed with HIV/AIDS are integral to the success and cost-effectiveness of HIV treatment. However, we have heard that support for people with HIV from the social services is not what it once was. As Ms Heather Wilson, Senior Health Adviser at Barnet General Hospital told us:

156

169. The ADSS attributed some of the £200 million overspend in social services to a rise in the numbers of children affected by HIV/AIDS coming into care and we heard evidence from a clinical specialist nurse in HIV that some social work teams might be ill-equipped to manage care for children affected by HIV:

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170. The AIDS Support Grant was introduced in 1989-90 to encourage the development of strategic plans within local authorities to respond to HIV infection and of operational plans for the provision of services for people living with and affected by HIV and AIDS. Since 1994-95 funding has been allocated on the basis of live AIDS cases resident in each local authority area receiving HIV treatment in NHS facilities but the Department has begun a review of the AIDS Support Grant and the allocation formula:

158

171. This statement seems to endorse the view of the British Association of Social Workers that here was still need for a "central drive" on HIV/AIDS.[159]

172. We recommend that the Government should support the co-ordination of training for all social workers who have contact with those living with and affected by HIV, and also support the creation of posts for specialist social workers, who we believe could play an important role in developing and maintaining HIV service networks in high- and low-prevalence areas.

CONTRIBUTION OF VOLUNTARY CARE

173. The Department recognises the vital role played by the voluntary sector in working with people affected by HIV/AIDS to providing care and support. It looks to the voluntary sector as a model for innovative and flexible service provision and has undertaken to develop "better strategic arrangements for commissioning voluntary sector services".[160]

174. The Public Health Minister told us:

161

175. We heard from Mr Simon Collins, who has worked in the voluntary sector for five years. His voluntary organisation, HIV i-base provides publications to healthcare professionals, a monthly bulletin for doctors, and a range of patient guides; as well as a treatment support telephone line for patients and links to European treatment networks for patient access. We asked Mr Collins about funding for this work:

162

176. The Terrence Higgins Trust reported that voluntary sector HIV services were "struggling to meet client need" and that uptake of its own services had increased by up to 500% in some areas.[163] Mr. Nick Partridge of the Trust warned us of potential risks to voluntary organisations providing HIV/AIDS services posed by the restructuring of health authorities into PCTs. He compared the restructuring to the disaggregation of county councils and as an example of the potential effect on voluntary HIV/AIDS services, told us that when Avon County Council disaggregated into three unitary councils, one of the new councils decided that it did not wish to allocate monies to Terrence Higgins Trust West and so funding for that unit was cut by 25%.[164]

177. Evidence from Mr Collins and Ms Lowbury reinforced our worries about the risks to voluntary sector services posed by the end of ring-fencing and by the devolution of commissioning powers to PCTs:

165

And: -

166

178. We welcome the Government's acknowledgement of the voluntary sector contribution to HIV services. We have received a great deal of evidence to suggest that the voluntary sector can reach many HIV-positive people who will not access statutory services. We recommend that the Government reciprocate the support it receives from voluntary groups in terms of practical work and policy guidance by supporting voluntary work at both national and local level. It would be counter-productive if the Strategy led to any diminution in the funding given to these bodies. Some HIV services (such as targeted prevention work) can only be provided by organisations which are very closely in touch with their communities and these services must be adequately resourced.

120 Ev 323 (Glaxo Smith Kline) Back

121 Q 681 Back

122 Qq 653-54 Back

123 RCP, Consultant Physicians Working for Patients, 2nd ed. 2001, pp 130-40. Back

124 Ibid. Back

125 Q 654 Back

126 Ev 318 (Dr Frances Keane) Back

127 Q 699 Back

128 Ev 378 Back

129 Ev 368 Back

130 Ev 350-51 Back

131 Ev 398 Back