No vaccine, no cure: HIV and AIDS in the United Kingdom - Select Committee on HIV and AIDs in the United Kingdom Contents

CHAPTER 7: The Right Treatment

216.  Over the last 25 years, the development of antiretroviral therapies has transformed the nature of treatment.[373] This treatment is an integral part of the response to HIV, but it is expensive. Services in England cost £760m in 2009-10[374], with antiretroviral drugs alone estimated to cost around £5,500 per person per year.[375] Furthermore, it is not problem-free. Side-effects can include kidney problems[376], osteoporosis[377] and fat distribution disorders.[378] It is also vital that treatment is adhered to consistently. This keeps viral load controlled. Poor adherence increases the risk of treatment failure and the development of antiretroviral resistance. This must be closely monitored (see para 228).

217.  Given these constraints, we must not simply accept the growing numbers of those becoming infected and moving onto treatment. We must increase the focus on prevention. This means that testing must be more widespread, and preventive interventions across a variety of areas must receive more support at all levels.

218.  Early diagnosis is important to avoid the poorer outcomes of late treatment and to reduce transmission rates. Interaction with specialist services also offers the chance to provide continued advice on behaviour change, reducing risk behaviours. All of this benefits the health of the patient, as well as the public more generally. Consequently, commissioning and delivering accessible, effective and well-tolerated care is of critical importance.[379]

Commissioning effective, efficient treatment

219.  HIV treatment is commissioned at present by Primary Care Trusts. Under proposed reforms, HIV treatment and care will be commissioned at a national level by the NHS Commissioning Board, rather than by local NHS clinical commissioning groups.[380] Owing to the uneven prevalence of HIV infection across the country, the Government believes that there is a need to prevent disproportionate costs falling on particular clinical commissioning groups, and that national commissioning will secure efficiencies from procuring drugs and services at scale.[381]

220.  The London Specialised Commissioning Group, which has worked to pool HIV commissioning across the capital, set out how commissioning on a broader scale has been used to successfully produce efficiencies, economies of scale and uniform standards of treatment access across London.[382] It suggested that this highlighted the potential of commissioning on a greater scale.

221.  National commissioning of HIV treatment has been broadly welcomed. MedFASH suggested that, as a relatively high-cost, low volume service, HIV treatment was more appropriately commissioned at a national level.[383] These views were echoed by a number of other witnesses.[384]

222.  Whilst there was support for HIV commissioning at a national scale, commissioners felt that such services also needed to be responsive to local needs.[385] The need for structures, such as regional networks, to allow for local tailoring and accountability was highlighted by contributors such as MedFASH[386] and NELNET.[387]

223.  HIV treatment and care services should be commissioned at a national level, given their high cost and the variation in HIV prevalence nationwide. To ensure commissioning is responsive to differing patterns of need across the country, regional treatment and prevention service networks, appropriately supported and resourced by the Government, should be established.


224.  It is estimated that around two-thirds of the annual costs of treatment and care comes from the procurement of drug therapies.[388] Securing efficiencies in this area could have a major impact in limiting the overall costs of treating HIV.

225.  Currently, HIV drugs are procured locally rather than nationally.[389] Within London, commissioners took a decision to collectively procure drugs, through the London HIV Consortium, to secure economies of scale.[390] Similar arrangements have emerged in other parts of the country, including Greater Manchester.[391] Simon Williams, Divisional Director of the London Specialised Commissioning Group, stated that: "We have certainly found a benefit from using a pan-London approach for procuring drugs and I think there is a lesson to be had from that."[392] Clinicians at the Chelsea and Westminster hospital suggested that purchasing drugs nationally could secure even greater savings.[393]

226.  When commissioning, it should be borne in mind that drugs need not only be clinically effective; they must also be tolerable to take. As Mary Kerr of ViiV Healthcare made clear, "tolerability is one of the major drivers of adherence ... adherence is one of the major drivers of efficacy".[394] Positively UK was concerned that a short-term pursuit of cost savings could impact upon this through the purchasing of cheaper and less well-tolerated drugs. This, it felt, would be counter-productive, leading to poor adherence and increased costs through expensive inpatient care in the longer-term.[395]

227.  Adherence is vital in managing the HIV epidemic; around 95% adherence is needed for treatment to be effective.[396] Without this, viral resistance can develop and more complex and expensive treatments need to be provided. Recent studies have suggested that up to 19% of new HIV infections in the United Kingdom may show some level of resistance to drug treatments.[397] The possible transmission of drug resistant infections is an emerging problem.

228.  Greater uptake of antiretrovirals, for both treatment and prevention, has the potential to impact on the emergence and transmission of drug resistant forms of HIV. Viral resistance is currently monitored by the UK HIV Drug Resistance Database, funded by a grant from the Medical Research Council. This work is of increasing importance, and must continue to be supported. Alongside such efforts, viral resistance is best managed by commissioning well-tolerated treatments.

229.  Existing procurement arrangements, where antiretroviral drugs are locally procured, mean that drug prices vary across the country. This should be changed. Antiretroviral drug treatments should be procured on a national scale. This offers the potential for significant savings by making use of the purchasing power and economy of scale of the National Health Service, as well as standardising prices nationwide.

230.  The costs of HIV treatment are best managed by purchasing well-tolerated, easily adhered to drug regimens. This reduces the likelihood of incurring the much higher costs of inpatient care which result from poor adherence to treatment. Under national commissioning structures, commissioners must procure drugs that allow clinicians the flexibility to prescribe regimes that best serve this long-term view.

231.  Continued monitoring of viral resistance to drug treatments, currently carried out through the UK HIV Drug Resistance Database, is essential.


232.  Under proposed reforms to the NHS, HIV treatment will be commissioned by the national NHS Commissioning Board, whilst prevention and testing services will be commissioned by local authorities. There are significant concerns about this division in commissioning responsibility. Summit House suggested that the split will present difficulties in getting primary care providers to engage with HIV testing[398], whilst NAHIP noted that commissioning routes for 'treatment as prevention' (see paras 147 to 155) will become confused under the proposed reforms.[399]

233.  The reforms separate responsibility for HIV prevention from responsibility for HIV treatment. Gilead Sciences suggested that this could disincentivise prevention, testing and early diagnosis, as those commissioning such services would not accrue any financial benefit from reduced treatment costs should the number of new infections decline.[400]

234.  The reforms may lead to further divisions in the commissioning of STI services. Local authorities will be responsible for commissioning screening, prevention and treatment services for STIs, through open-access GUM services. The only exception to this will be HIV treatment, which will be commissioned at the national level. Sexual health and HIV services should be integrated; such integration supports effective prevention and treatment, as well as facilitating high-quality research. NHS services in many parts of the country have taken steps in recent years to promote the integration of sexual health and HIV services, Justine Womack, Head of the Office for Sexual Health in the South West[401], noted that the integrated model there supported effective prevention work.[402]

235.  There are therefore concerns about the potential for fragmentation of treatment services under the proposed reforms, which could increase costs and undermine the skill base of staff, jeopardising the holistic approach to treatment pursued in recent years.[403] This is an important issue. HIV transmission is more likely when individuals are suffering from other STIs, and so diagnosing and treating those infections is an important element of HIV prevention work. The diagnosis of another STI is also an indicator of unsafe sexual behaviour, which may lead to a risk of HIV transmission in future. The diagnosis of STIs thus provide a useful opportunity for HIV prevention counselling to be provided. Contributions from BHIVA[404] and the HIV Pharmacy Association[405] highlighted the need for joint working arrangements and strong governance to prevent fragmentation.

236.  We recognise the concerns arising from the proposed split in commissioning responsibility for HIV prevention, treatment and social care services. We recommend that the Department of Health place a duty upon those commissioning HIV services to support the integration of all HIV services in their commissioning decisions.

237.  We also recognise the importance of prevention efforts in relation to other STIs, and the role that they can play in preventing the spread of HIV. The integration of STI and HIV treatment services, therefore, is essential for prevention efforts. We share the concerns of those who suggest that the proposed NHS reforms may increase the fragmentation of services. We recommend that the Department of Health place a duty to promote service integration upon those commissioning sexual health and HIV services.

Delivering treatment and care

238.  Treatment services are delivered via medical specialities such as GUM or Infectious Diseases (ID). GUM services, where a large proportion of outpatient treatment is undertaken, also provide diagnosis, treatment and prevention services for STIs. Care in these settings, involving multiple disciplines, has been very successful. We saw this first-hand in Brighton[406], London[407] and Leeds.[408] Treatment outcomes are widely acknowledged as excellent[409]; in London, 90% of patients had an undetectable viral load within one year of starting therapy.[410] These services therefore have an important role to play in prevention, as well as caring for those infected.

239.  Nevertheless, services are under pressure for a number of reasons. Principally, the patient cohort is outgrowing service capacity, as patient numbers have tripled since 2000 (see para 30).[411] Dr Ian Williams of BHIVA said simply, "I think the model of care at the moment is unsustainable ... There is not the resource capacity within the current system to allow the current model to continue."[412] With increasing life expectancy, HIV is now also a "long-term" condition, requiring decades of care.[413] An ageing cohort brings new clinical challenges.[414] Care must also be responsive to its users; an element which the Metro Centre[415] believed had been "fundamental" to developing trust in services amongst the HIV community in the past.[416]

240.  As the number of those living with HIV continues to increase, problems of capacity and cost can only worsen. Changes must be made to maintain the high standard of services.

Recommended treatment developments


241.  At present, guideline standards for HIV treatment and care are outlined in documents written and published by professional bodies.[417] They are not binding documents, but do identify best practice in order to guide clinicians and influence commissioning practice. Performance against those standards is audited by the same bodies that developed them. The Minister for Public Health noted that they are "widely used ..."[418]

242.  Although existing standards are "internationally recognised"[419], there is a role for broader and more persuasive treatment standards.[420] Under proposals for public health reform, the development of quality standards is expected to be "a significant part" of the role of NICE.[421] Professor Mike Kelly of NICE was convinced that it had the expertise to produce standards for HIV and AIDS if called upon by the Government.[422] He said it was an "anomaly" that NICE had only done work around HIV testing.[423]

243.  Any standards cannot focus solely on medical care needs. There is a disproportionate prevalence of psychological problems, such as depression and anxiety, amongst those with HIV.[424] Mental health services can help patients cope with HIV-related stigma, which without support can cause them to hide their status and mean that they do not keep up with drug regimes.[425] Body and Soul suggested that 17% of service users reported that an inability to disclose their status had been a barrier to adherence.[426] Mental health services can work to boost adherence, better managing viral load and thus reducing onward transmission.[427]

244.  However, such services are often neglected. TCell[428] considered them the "poor relation" of services for those with HIV.[429] In light of this, various professional bodies are putting together psychological care standards for those with HIV.[430] Given the many benefits of keeping patients adhering to therapy, and the individual benefits drawn from improved mental health, it is important that these are not ignored.

245.  Social care needs, which the Association of Directors of Adult Social Services and the Local Government Association called the "critical partner in the care pathway"[431], must also be catered for.[432] We saw in Leeds, during our time with Yorkshire MESMAC and Leeds Skyline, the important role that social care can play for patients.[433]

246.  Given these broad needs, the development of quality standards is a compelling idea. They could provide a clear framework for action, and serve as a valuable source of guidance at a time of considerable change. By encompassing medical, social and psychological care needs, they could help to ensure more integrated treatment and care services for those with HIV, including interventions at an individual level to prevent onward transmission. The Minister for Public Health was not sure that "more is needed from NICE" given the quality of existing guidelines.[434] However, Professor Mike Kelly noted the "fundamentally important catalytic effect" such guidance could have.[435] We agree that NICE guidelines would be more persuasive, and would be a positive step.

247.  HIV treatment and care standards have an important role to play in guiding commissioners and clinicians in a complex area. We recommend that the Government commission NICE to develop treatment and care standards for HIV and AIDS. These should be developed in association with people living with and affected by HIV, along with service providers, drawing upon existing treatment guidelines.

248.  They must take into account psychological and mental health needs, and social care needs more broadly. They should also reflect the value of interventions from healthcare professionals, such as advice on reducing risk behaviours, in preventing onward transmission of the virus. This should happen immediately, as the required expertise is already in place.


249.  NHS services are not provided free of charge to all of those accessing care in England. Those not ordinarily resident in the United Kingdom may incur a charge for their care under the National Health Service (Charges to Overseas Visitors) Regulations 1989. Charges do not apply if a visitor has been "lawfully" resident for one year, or if any specified exemptions apply.[436] These are laid out in the Charging Regulations and guidance on their implementation, and are set out in Box 3.


Exemptions from Charging and Safeguards
The Charging Regulations, and Department of Health guidance on their implementation, include a number of exemptions from charging and safeguards to prevent serious suffering. These include:
  • Access to free NHS treatment for asylum seekers as long as their application and any appeal remain current;
  • Continuation of an existing course of treatment even if the asylum application and any appeal fails, up until a person is deported or leaves the country (so HIV treatment once started by an asylum seeker is never withdrawn). It is for a clinician to determine what constitutes a particular course of treatment;
  • Immediately necessary or other urgent treatment should not be delayed irrespective of a person's inability to pay (although not free, guidance makes clear that treatment should take place even without advance payment), and that decisions on level of urgency are clinical only. HIV treatment must be considered as immediately necessary.[437]

Given the exemptions set out above, charges would usually only apply to HIV treatment for undocumented migrants and failed asylum seekers if HIV was diagnosed once a visa had run out or after all asylum appeals had failed.[438]

There are also specific categories of services exempt from all charges, which are laid out in Regulation 3 and in an annex at Schedule 1. These include infectious diseases such as tuberculosis and measles, but do not include HIV. It is set out that the treatment of STIs is free of charge for all; for HIV, though, this only extends to testing and associated counselling. As a result, HIV treatment must be paid for by overseas visitors not otherwise covered by one of the charging exemptions.

250.  The result of these Regulations and associated guidance is that, for those liable to pay, HIV testing and any related counselling is provided free, but subsequent treatment and care is not.[439] The Government do not collect data on the numbers of people affected, but it is estimated to be between 660 and 1000 people.[440]

Is the policy justifiable?

251.  Professor David Harper of the Department of Health believed that, where people are "in the system", the risk of onward transmission was, "addressed, at least in part, by testing and advice. Then, one would expect these people will be leaving the country".[441] The Department of Health also argued that free treatment could lead to "health tourism"—people coming to the United Kingdom for the purpose of receiving HIV treatment. It stressed that it received regular reports of this happening, though failed to quantify its scale.[442] The Minister for Public Health, however, did not affirm this contention.[443]

252.  There are a number of arguments against the policy. One is that it does not best serve the interests of public health. Dr Ian Williams of BHIVA believed that the public health case against charging was "overwhelming".[444] In the light of evidence that treatment reduced infectivity, the African Health Forum called the policy "absurd".[445] The Minister for Public Health in fact acknowledged that, "we need to bear in mind the public health implications of people not being able to receive treatment who are HIV-positive."[446]

253.  There is also an economic case for offering treatment regardless of immigration status. Deborah Jack of NAT stressed that "the cost of someone getting very sick without treatment is a lot higher than keeping them well on antiretrovirals"[447], for which reason Dr Ian Williams called the policy "madness".[448]

254.  Furthermore, there seems to be little real evidence of "health tourism".[449] Dr Ian Williams stressed that there was "no evidence" of health tourism in a survey of BHIVA's members.[450] Deborah Jack drew attention to the fact that, although treatment was free elsewhere in the United Kingdom, "we don't see big flows of migrants over the borders to Scotland, Wales and Northern Ireland, which if this myth of health tourism were true would happen."[451]

255.  So there are clear ethical and economic objections to the system. But most damningly of all, it does not work in practice. The extent to which charges are pursued is a matter for individual hospitals.[452] Dr Ian Williams outlined that, in reality, this meant that treatment is given, charges are sought (from patients who cannot afford them), before then being written off—"a constant circle of nonsense".[453]

256.  Overall, the policy is unjustifiable. It deters a high-prevalence group from testing, and misses an opportunity to reduce infectivity through treatment, with only anecdotal evidence to support it. Most importantly, it simply does not work. Those tasked with caring for patients are caught up in a fiction that fails all of those involved. This is done for an amount of money that the Government does not even monitor; the Minister noted that, though there are estimates of costs recovered, "I would not even quote them, because I think the truth of the matter is we do not really know".[454]

257.  Charging people for their HIV treatment and care is wrong for public health, practical and ethical reasons. We recommend that HIV should be added to the list of conditions in the National Health Service (Charges to Overseas Visitors) Regulations 1989, for which treatment is provided free of charge to all of those accessing care, regardless of residency status.

Changing the model of care

258.  Clear standards of care, and equitable access to services, are the base for further developments in how services are delivered. Any change must acknowledge the range of needs of HIV patients.[455] Some patients are on stable treatment regimes, without any major complications. Others have more complex issues due to factors such as drug resistance or co-infections. Over time, developments in antiretroviral therapies have led to increasing numbers of stable patients living with HIV free of symptoms, with a significant decline in the number of people whose infection has progressed to AIDS (see para 17).

259.  In developing the model of care, the aim must be to manage stable patients who have a good quality of life in the most efficient way possible, freeing up capacity for those with more complex needs. At a time of stretched resources, any savings that can be made without compromising patient care must also be supported.

260.  In any reformed system, all patients must, of course, maintain regular contact with HIV specialists. From the outset, therefore, we stress that we are firmly in support of specialist treatment services continuing to be the leading location of care for those with HIV. This was a position supported across the evidence base.[456] We were glad that the Minister for Public Health made clear that, "treatment is a specialist area still and will continue to be so ..."[457]


261.  There needs to be fundamental changes to how services are organised. At the same time, there are improvements that can be made within the existing model.

262.  One of the simplest improvements is to offer more flexibility in the opening hours of clinics, to enable service users to get appointments in the evenings and on weekends. Though this would have resource implications, this greater flexibility would encourage access, and support service users to be economically active and in employment.[458]

263.  Another measure is to make more use of the home delivery of drugs. Delivering drugs to patients' homes can be very convenient for patients, whilst saving time for clinic staff.[459] Furthermore, because home deliveries are not subject to VAT (a curious rule), the service can deliver significant savings. In Brighton, home delivery saved around £60,000 per month[460]; in Greater Manchester, it saved £2.5m per year.[461]

264.  The role of 'virtual clinics'—where support is provided for stable patients online or over the phone rather than in person—is another way of freeing up capacity within specialist units and delivering care in a manner more convenient for patients.[462] For example, the CONNECT service offered in the Royal Sussex County Hospital in Brighton uses email and text messages to send test results.[463] Expanding the use of cost-effective nurse-led clinics in the monitoring and assessment of patients is another means by which to reduce pressure on specialist services.[464]

265.  Patient self-management could also be given a more prominent role. Sir Nick Partridge of the Terrence Higgins Trust called for recognition of this "direction of travel".[465] The Royal College of Nursing noted that online support materials, such as the Terrence Higgins Trust MyHIV service, could "empower patients to access services, manage their condition and access peer support".[466] NAM stressed the importance of equipping patients to "navigate the health care system".[467]

266.  All of these measures have clear potential benefits for patients, by delivering care more flexibly and conveniently. Many can also save money, which specialist services can use elsewhere. However, such innovations will not be suitable for all; patient care must be guided by need, and not by resource imperatives. Strong oversight and protocols are essential.[468] Nevertheless, given the increasing proportion of stable patients, these innovations can be applied widely to improve the delivery of treatment.

267.  There are a number of innovative ways of delivering specialist services which should be employed more extensively. These changes benefit patients by delivering treatment more conveniently and closer to home, whilst relieving pressure on specialist clinics and allowing closer working with those in primary care (see para 277). These include:

  • Home delivery of antiretroviral drugs;
  • Flexible evening and weekend access to services;
  • Patient self-management services, including more extensive support materials;
  • Virtual services such as telephone and email clinics for stable patients; and
  • Nurse-led clinics.

268.  Given the increasing proportion of HIV-positive people on stable treatment regimens, commissioners and clinicians (including GPs) should develop, after consultation with patients, guidelines and protocols for the expansion of the above innovations. This can free up human and financial resources for more complex elements of HIV treatment and care. Protocols must, however, provide for specialist consultants to monitor the conditions of all patients at regular intervals.


269.  General practice is a cornerstone of healthcare in the United Kingdom. GPs are routinely involved in managing the health of millions of people across the country. This is not, though, the case for most people with HIV and AIDS. As Dr Ewen Stewart of the RCGP noted, "a lot of patients are not getting their primary care in primary care. They are getting it all at the hospital clinic."[469] This is despite the fact that the HIV cohort is an ageing one; those with HIV need good primary care to manage many of the common conditions experienced by older people.[470] The present situation increases the pressure on already stretched specialist services.

270.  GPs must become more involved in the care of their HIV-positive patients. There is no reason why this should not be standard practice. Many chronic conditions are already dealt with on a routine basis by general practitioners, and this must become the case for HIV. The Minister for Public Health, though supportive of specialist provision (see para 260), agreed. She said that "... there is going to need to be some good integration going back to GPs with managing people who are living for a long time with HIV alongside other long-term conditions."[471] The question is how extensive a role this should be. Patient engagement will be crucial in any scenario; TCell warned against "top down edicts" in this area.[472]

271.  Taking on the primary care responsibilities of a HIV-positive patient, as is the case for all others registered at a practice, is essential. This would make those in primary care more familiar with HIV, the first step on the way to making it a standard part of a GP's role. As Dr Ian Williams of BHIVA noted, this would not reshape the nature of general practice; it would involve "asking GPs … to deliver primary care to their patients, which is what their responsibility is".[473]

272.  The more controversial question is whether GPs should take over elements of HIV care considered 'specialist' at present. Involving GPs in 'routine' aspects of care for stable patients, for example, could reduce pressure on specialist services.[474] Dr Ewen Stewart—who felt such a model had potential in high-prevalence areas—drew parallels with existing practice in rheumatology in this respect.[475]

273.  Some were more hesitant. Dr Bill Beeby, Chairman of the Clinical and Prescribing Committee of the BMA's General Practitioners Committee, believed that a shift would "evolve over a period of time and is not something that is going to be achieved as a sudden step".[476] NAM, though supportive of some devolution, felt that it was "overly simplistic to assume the majority of patients with HIV will eventually be managed through general practice".[477] Dr Christopher Wood[478] went further. Though he believed that GP involvement was feasible in some areas, he felt that, "moving any substantial proportion of HIV care out of specialist centres is not currently viable and would be counterproductive".[479]

274.  Involving GPs in areas traditionally considered 'specialist' is an interesting proposition. It would, however, involve a fundamental shift in service provision. It could only take place over the medium- to long-term. The division and shared nature of responsibility would have to be made very clear; guidelines and protocols would be essential. Effective patient engagement would also be crucial.

275.  Nonetheless, we are supportive of investigating the possibilities. We recommend that greater responsibility for the primary care needs of patients shifts to GPs, as partners alongside specialist services—as is done for many other chronic conditions. This would set in motion a change in culture, with the object of HIV becoming a condition routinely taken on by GPs.

276.  There is no case for a shift in all responsibilities, given the important role that specialist services play. As Dr Keith Radcliffe of BASHH and the Royal College of Physicians made clear, the "option to send them back to the specialist centre if something untoward happens" is essential.[480] In particular, it does not take away the importance of prescribing antiretroviral therapies in specialist settings, given the complexity of that task.[481]

277.  We recommend that the Government work with specialists, GPs and patients to develop a strategy for GPs to take on shared responsibility for the care of HIV-positive patients. This work should include broader consideration of the appropriate boundaries of responsibility between primary care and specialist services. The results should form the basis of longer-term strategies for expanding the role of GPs in the management of HIV-positive patients.

Barriers to involvement

278.  Many patients are concerned about confidentiality in primary care.[482] Dr Ewen Stewart of the RCGP accepted that this perception was a problem, but did not believe that there was any "major failure of confidentiality in general practice".[483] In this respect, both Dr Stewart and Dr Simon Barton, Clinical Director at the Chelsea and Westminster Hospital, noted that GPs are under the same professional obligations in relation to confidentiality as practitioners elsewhere.[484] Nonetheless, Dr Stewart felt it was important for general practice to make clear to patients the importance that practices attached to confidentiality; it was important to "do the PR exercise with the patients but also with the secondary care units and some of the HIV patient organisations ... to reassure them".[485] Dr Philippa Matthews agreed.[486]

279.  There is also a widespread need for GPs to build their confidence and competence in managing those with HIV.[487] Dr Ian Williams said that many GPs felt they lacked "the confidence or skills to deliver primary care ..." for those living with HIV.[488] Training is an essential part of such development, but is often poorly prioritised. For Nathaniel Ault, Chair of the National HIV Nurses Association, competing priorities for the time of GPs meant that "HIV then falls down their priority list on attending training".[489] Dr Stuart Gibson, Chair of the Faculty of Sexual Health and HIV of the British Psychological Society, noted that one HIV and psychological care training session for GPs was cancelled for three consecutive years due to low demand.[490]

280.  Another barrier to involvement comes from poor channels of communication between primary and specialist care.[491] Dr Ewen Stewart felt that there were "significant pockets where communication is not good and where they [specialists] do not seem to want to let the patients go".[492] He felt this affected skill levels. Dr Philippa Matthews believed that such practice was "probably against GMC guidance".[493] Sexual Health in Practice called for communication levels to be audited.[494]

281.  There are, therefore, barriers to overcome amongst both patients and professionals. Patients must be convinced of the confidentiality of primary care through clear communication of confidentiality policies and practices.

282.  For professionals, more training is required to build confidence and competence. A more knowledgeable doctor is a more confident one, and one better able to take on responsibility for managing HIV. Building up confidence can also combat HIV-related stigmatisation.[495]

283.  In addition, secondary care must acknowledge those in primary care as partners in HIV management. Not only does this enable the best delivery of primary care, for example by avoiding drug interactions, but it can also build trust between clinicians, patients and practice staff. This partnership must involve specialists highlighting to patients the levels of confidentiality in primary care and the benefits of their involvement. Partnership must also entail effective communication between services, as recommended in GMC guidance.[496]

284.  Upholding the confidentiality of patients is essential in any medical setting. This is particularly so for a condition as stigmatised as HIV, and in a setting as important as primary care. Confidentiality must be taken seriously, and shown to be taken seriously; general practice staff should make clear to patients the weight they attach to it. This should include clear and easily accessible confidentiality policies, and joint work with specialist HIV clinicians to highlight to patients how important confidentiality is considered within primary care.

285.  For better, more integrated HIV treatment and care, general practices and specialist services should also work in partnership. We recommend that the Government work with professional associations to commission an audit of information-sharing processes and confidentiality policies in place between practices and HIV specialist clinics, to ensure that good practice is widespread.

286.  Furthermore, it is imperative that medical practitioners have the knowledge and skills to manage HIV. Undergraduate teaching and ongoing professional development should, therefore, incorporate sufficient specialist training relating to HIV and AIDS.


287.  A final and more fundamental shift in services involves the development of managed service networks. These networks situate highly specialist care in 'centres of excellence', with satellite units taking on responsibility for less complex care. These are recommended in professionally developed treatment standards.[497] The North and West Yorkshire HIV Network is one example of such a model.[498]

288.  Such networks allow for care to be standardised through the development of care specifications and protocols throughout an area; they can also bring care closer to patients, and facilitate the involvement of primary care.[499] Specialist staff we heard from in Brighton called them "best practice" [500], and they were widely supported in evidence.[501] Nathaniel Ault, of the National HIV Nurses Association, was one of a number of contributors who called for recognition and proper funding of such models to ensure that their benefits could be felt nationwide.[502]

289.  Additionally, the development of service networks could allow for the rationalisation of services in the longer-term. The Terrence Higgins Trust highlighted that there were currently 33 specialist providers in London alone, and that centres of excellence could "concentrate on highly specialist and in-patient HIV care and could be fewer in number."[503] NAM felt there was a "strong case for concentrating specialist care at a smaller number of major centres."[504]

290.  Service networks, with properly outlined pathways of care and responsibility, address a number of issues. They can deal with the issue of capacity at specialist centres. Highly specialist care could be placed into 'centres of excellence', allowing expert clinicians to focus on the most complex cases and develop their expertise on issues such as managing side-effects, treatment failure, drug interactions and comorbidity.[505]

291.  Meanwhile, less complex patients could have their care delivered closer to home without compromising the quality of that care, with responsibility divided between primary care and smaller outpatient units. This supports our stated aim of increasing the involvement of primary care, and better reflects the nature of HIV as a long-term, chronic condition. It also allows for partners from the voluntary sector, along with psychological and mental health services, to be better integrated into the care pathway.

292.  The proposal to commission HIV treatment and care through the national NHS Commissioning Board offers an opportunity in this respect, a point not missed by contributors to our inquiry.[506] Dr Christopher Wood, though, noted that capacity may not exist nationwide for such models, and that roll-out should not be based on "atypical" examples, such as the Chelsea and Westminster hospital, where there were already strong relationships between primary care and specialist clinicians.[507]

293.  Developing these models more widely necessitates a fundamental cultural shift in HIV care. General practice needs to become a more involved partner in caring for those living with HIV, to better establish the foundations for this model more widely. The system will also require carefully developed pathways and protocols, to ensure that patients move effectively and seamlessly between different locations for care as required.

294.  Further research is essential, as is consultation with patients on how they would like the model to be structured. These are crucial first steps ahead of any wider implementation; particularly so if care is to be rationalised into a smaller number of centres. Nevertheless, we see important opportunities in a networked model of care.

295.  Commissioners should support managed service networks where they already exist. This should involve the provision of appropriate financial resources and the use of commissioning frameworks. Commissioners elsewhere should consider whether sufficient capacity is in place to move towards a networked model of care. NICE should consider, as part of its remit in developing treatment and care standards for HIV (see paras 247 to 248), the role of service networks as a means of efficient and integrated care provision for HIV and AIDS.

296.  Research should be funded, either by the Government, National Institute for Health Research, Medical Research Council or other research funders, to examine whether such networks would allow for highly specialist care to be delivered more effectively in fewer centres.

297.  We have made some wide-ranging suggestions for change to better integrate care. This must include personal care to prevent further transmission of the virus. This entails help to ensure high levels of adherence, to prevent transmission and the emergence of resistance; individual behaviour interventions to reduce the risk of passing on infection; and testing and treatment for other STIs. It must also involve a broader reorganisation of services.

298.  These recommendations would better orientate care in line with the long-term nature of HIV; better use the impressive expertise available within all sectors of HIV services; and improve capacity within stretched specialist services. Many of the changes can only come to fruition in the medium- to long-term, but action must begin immediately. We must be ready for major changes in how services are provided, or face insurmountable capacity pressures within a model that does not best serve its users.

373   See, for example, Q 446 (Professor Jonathan Weber). Back

374   HAUK 94 (Department of Health). Back

375   HAUK 97 (Health Protection Agency) Back

376   See Appendix 4, op. citBack

377   Q 539 (Silvia Petretti). Back

378   Q 501 (Simon Barton).  Back

379   Q 404 (Mary Kerr). Back

380   HAUK 19. Back

381   ibid. Back

382   HAUK 51. Back

383   HAUK 63. Back

384   See, for example, HAUK 55 and 73 (British Association for Sexual Health and HIV and the Royal College of Physicians), HAUK 64 (Terrence Higgins Trust), HAUK 47 (National AIDS Trust), HAUK 24 (NAM). Back

385   Q 750 (Justine Womack, Office for Sexual Health South West). Back

386   HAUK 63. Back

387   HAUK 6. NELNET is a North East London commissioning body. Back

388   See, for example, Q 748 (Simon Williams). Back

389   HAUK 94 (Department of Health). Back

390   ibidBack

391   HAUK 82 (Sarah Stephenson, Greater Manchester Sexual Health Network). Back

392   Q 749. Back

393   See Appendix 5, op. cit. Back

394   Q 404. Back

395   HAUK 37. Back

396   D. L. Paterson et al., Adherence to protease inhibitor therapy and outcomes in patients with HIV infection, Annals of Internal Medicine, 2000, pp 21-30. Back

397   Buckton AJ et al., Increased detection of the HIV-1 reverse transcriptase M184V mutation using mutation-specific minority assays in a UK surveillance study suggests evidence of unrecognised transmitted drug resistance. HIV Medicine, advance online publication, 2010. Back

398   HAUK 78. Back

399   HAUK 59. Back

400   HAUK 74. Back

401   An NHS South West sexual health commissioning body. Back

402   Q 741. Back

403   HAUK 47 (National AIDS Trust). Back

404   HAUK 53.  Back

405   HAUK 48. The HIV Pharmacy Association is a professional body for pharmacists and technicians working in HIV-related specialities. Back

406   See Appendix 4, op. cit. Back

407   See Appendix 5, op. cit. Back

408   See Appendix 6, op.cit. Back

409   See, for example, HAUK 55 (British Association for Sexual Health and HIV and the Royal College of Physicians), HAUK 64 (Terrence Higgins Trust), HAUK 53 (British HIV Association), HAUK 51 (London Specialised Commissioning Group), HAUK 47 (National AIDS Trust). Back

410   Health Protection Agency, HIV in the United Kingdom (2010 Report), op.cit. Back

411   ibidBack

412   Q 282. See also HAUK 54 (Royal College of GPs), HAUK 36 (Association of Directors of Public Health), HAUK 64 (Terrence Higgins Trust). Back

413   See, for example, HAUK 64 (Terrence Higgins Trust), HAUK 74 (Gilead Sciences), HAUK 24 (NAM), Q 404 (Lisa Bright).  Back

414   Q 469 (Dr Sheena McCormack), Q 110 (Sir Nick Partridge). Back

415   A gay, lesbian and transgender community sexual health organisation. Back

416   HAUK 21. Back

417   British HIV Association, Standards for HIV Clinical Care, March 2007. Back

418   Q 1113. Back

419   HAUK 53 (British HIV Association). Back

420   HAUK 76 (British Medical Association), HAUK 47 (National AIDS Trust), Q 506 (Dr Simon Barton). Back

421   Q 315 (Professor Mike Kelly). Back

422   Q 340. Back

423   Q 344 Back

424   Q 275 (Dr Ian Williams), Q 486 (Dr Stuart Gibson). Back

425   HAUK 37 (Positively UK). Back

426   HAUK 22. Back

427   HAUK 64 (Terrence Higgins Trust), HAUK 47 (National AIDS Trust), HAUK 22 (Body and Soul). Back

428   A HIV patient support organisation. Back

429   HAUK 43. See also Appendix 6, op. cit. Back

430   HAUK 90 (Dr Stuart Gibson, Faculty for HIV and Sexual Health, British Psychological Society).  Back

431   HAUK 69. Back

432   See HAUK 64 (Terrence Higgins Trust), HAUK 22 (Body and Soul), HAUK 37 (Positively UK). Back

433   See Appendix 6, op. cit. Back

434   Q 1113. Back

435   Q 330. Back

436   HAUK 70 (Department of Health). Back

437   ibidBack

438   ibidBack

439   HAUK 70 (Department of Health). Back

440   HAUK 64 (Terrence Higgins Trust). Back

441   Q 194. Back

442   HAUK 94. Back

443   Q 1117. Back

444   Q 300. Back

445   HAUK 81. Back

446   Q 1119. Back

447   Q 135. Back

448   Q 299. Back

449   See National AIDS Trust, The Myth of HIV Health Tourism, October 2008. Back

450   Q 300. Back

451   Q 135. Back

452   HAUK 70 (Department of Health). Back

453   Q 304. Back

454   Q 1120. Back

455   HAUK 24 (NAM). Back

456   HAUK 37 (Positively UK), HAUK 36 (Association of Directors of Public Health), HAUK 48 (HIV Pharmacy Association), HAUK 61 (HIV Scotland), HAUK 74 (Gilead Sciences). Back

457   Q 1115. Back

458   HAUK 36 (Association of Directors of Public Health). See also Appendix 5, op. citBack

459   See Appendix 5, op. cit. Back

460   See Appendix 4, op. citBack

461   HAUK 82 (Sarah Stephenson, Greater Manchester Sexual Health Network). Back

462   See, for example, HAUK 47 (National AIDS Trust), HAUK 51 (London Specialised Commissioning Group). Back

463   See Appendix 4, op. citBack

464   HAUK 35 (Royal College of Nursing), HAUK 45 (Tuke Institute), HAUK 51 (London Specialised Commissioning Group), HAUK 24 (NAM), HAUK 1 (Sascha Auweiler), HAUK 36 (Association of Directors of Public Health), HAUK 52 (National HIV Nurses Association). Back

465   Q 101. Back

466   HAUK 35. Back

467   HAUK 24. Back

468   HAUK 47 (National AIDS Trust), HAUK 64 (Terrence Higgins Trust). Back

469   Q 709. Back

470   Q 709 (Dr Ewen Stewart), HAUK 76 (British Medical Association), HAUK 36 (Association of Directors of Public Health), HAUK 64 (Terrence Higgins Trust). Back

471   Q 1115. Back

472   HAUK 43. Back

473   Q 296. Back

474   HAUK 64 (Terrence Higgins Trust), HAUK 47 (National AIDS Trust), HAUK 53 (British HIV Association). Back

475   Q 709. Back

476   Q 706. Back

477   HAUK 24. Back

478   A HIV consultant at North Middlesex University Hospital NHS Trust. Back

479   HAUK 44. Back

480   Q 288. Back

481   HAUK 48 (HIV Pharmacy Association), HAUK 54 (Royal College of GPs), Q 709 (Dr Ewen Stewart).  Back

482   See Q 492 (Dr Simon Barton), Q 901 (Professor Jonathan Elford), Q 284 (Dr Keith Radcliffe). Back

483   Q 717. Back

484   Q 717 (Dr Ewen Stewart), Q 516 (Dr Simon Barton). Back

485   Q 717. Back

486   ibidBack

487   See Q 705 (Dr Bill Beeby), Q 287 (Dr Keith Radcliffe). Back

488   Q 283. Back

489   Q 504. Back

490   Q 503. Back

491   See HAUK 31 (Ruth Hutt, Consultant in Public Health, NHS Lewisham). Back

492   Q 709. Back

493   Q 704. Back

494   HAUK 7. Back

495   HAUK 37 (Positively UK). Back

496   General Medical Council, Good Medical Practice, point 52: 

497   British HIV Association, Standards for HIV Clinical Care, March 2007Back

498   See Appendix 6, op. citBack

499   HAUK 63 (MedFASH). See also Appendix 6, op. cit.  Back

500   See Appendix 4, op. citBack

501   See, for example, HAUK 32 (St George's Healthcare), HAUK 51 (London Specialised Commissioning Group), HAUK 63 (MedFASH), HAUK 53 (British HIV Association), HAUK 55 (British Association for Sexual Health and HIV and the Royal College of Physicians). Back

502   Q 484. Back

503   HAUK 64. Back

504   HAUK 24. Back

505   Q 501 (Dr Simon Barton). Back

506   HAUK 55 (British Association for Sexual Health and HIV and the Royal College of Physicians), HAUK 63 (MedFASH), Q 506 (Dr Simon Barton), Q 100 (Sir Nick Partridge). Back

507   HAUK 44. Back

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