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The UK Coalition of People Living with HIV and AIDS (UKC) is the national organisation of people with HIV infection, a registered charity and not for profit limited company.
The aims of the UKC are to enable the diverse voices of people living with HIV and AIDS to be heard with a view to influence change.
The UKC has a membership base geographically spread across the
In preparing this response, we asked for individuals’ views via our website and internet discussion board, with partner agencies, the Pan London HIV Providers Consortium, our own staff and volunteers, and through other contacts with people living with HIV and AIDS (plwha). LSCG placed advertisements in Positive Nation magazine’s October and November 2004 editions which advised of the process and directed people who wanted to be involved to read the strategy documentation on the London section of the UKC website and to respond in a number of ways including an online response questionnaire.
We conducted a series of meetings with plwha, including a series of facilitated debates by our relatively newly formed “Midweek Group” for gay men with HIV in London, and two sessions with a newly formed group that meet in London (Africans Getting Involved). The timescale involved in organising these sessions were a constraint on holding larger or wider meetings within the deadline – this response should be read in that light. It should also be borne in mind that much of this work was internal to the UKC as there was no time to organise or publicise a large public meeting. The language of the draft strategy paper meant that the group sessions focussed primarily on what was most important to the individuals taking part.
In preparing this response, we have transposed the priorities expressed at these group sessions into answers to the questions posed in the consultation papers.
Individual responses were minimal which, perhaps, reflects a mixture of apathy and unwillingness of plwha to take part in such consultations, particularly those on strategic issue of this nature. We also see this as further evidence that only a few plwha feel equipped to deal with issues at this level, that the language of the draft strategy and thus the on-line consultation was too complex, and that language still stands in the way of general meaningful involvement of plwha in the development of strategies and policies.
We are very aware that the HIV epidemic in the
We subscribe to the “social model” of disability and are encouraged that the Government has promised steps to amend disability discrimination law to include HIV infection as a disability from the point of diagnosis, reflecting the potentially disabling effects of discrimination and stigma that accompany this disease, rather than any physical impairment that late stage HIV disease can bring.
This response has been compiled by people living with HIV infection. It represents the views of those that contributed to it, but should not be cited as a definitive view of plwha – we respect people’s rights to differing views and, where these are made known to us, we will highlight this diversity of opinion.
This paper also incorporates a response from the Pan London HIV/AIDS Providers’ Consortium (PLC), of which UKC is a member. The PLC is a federation of over 40 independent sector organisations offering HIV services in London. Most are HIV-specific agencies, some are primarily related to other areas such as drugs, prisons, sex workers, children, complementary therapies, lesbians & gay men or disability, but all have statutory contracts to provide HIV services across a wide area of the capital. The consortium has responded by collating the views and comments of its membership and begins by prioritising the aims of the strategy and continues with specific comments from the responding member organisations.
The provider viewpoints are clearly indicated below.
Response to consultation
The UKC welcomes publication of the draft strategy (as indeed we did the previous draft strategy from 2001/2) on the basis that, as an organisation of people living with HIV, we have been calling for a wide-reaching strategic overhaul of HIV service configuration and provision since 1998. The Pan London Consortium also welcomes the strategy “as a tool to ensure continued development of HIV services in London”.
However, the UKC cautious organisational welcome is tempered by comments received during the consultation process, comments such as
“There is no feeling within the document that much if anything will change. There is a series of action points - mainly work for committees - but no goals, outcomes or targets and very little basis for assessing whether or not it has been a success.”
PLC temper their comments with the following – “The consortium supports the direction of the strategy but finds it still at a very abstract level with many details needed to be filled in. It is strong on treatment and clinical issues and weak on matters of prevention. The strategy does not emphasise enough the need for closer working with the voluntary and community sectors in order to achieving the objectives. The role of the voluntary sector has been underestimated in the proposed strategy and we strongly recommend the inclusion of the key role played by the voluntary sector in the document.”
The language and terminology used in the draft strategy document appears to have been a barrier to effective patient participation in shaping its future. Where complex issues were explained to discussion groups, the level of engagement improved. The implication is that the language used by the NHS is consistently too complex for general consumption – this is a barrier to patient and public involvement that needs correcting.
We therefore recommend that ways are found to strengthen the eventual strategy document with more emphasis on measurable outcomes and perhaps a more inspiring tone that gives an impression that change is not only possible, it is going to be achieved and for the better.
PLC support the importance given to joint commissioning, planning and service delivery across health and social care boundaries but suggest a stronger focus on these areas throughout the document. We propose the addition of promoting integrated services as a good practice tool/guide. We also feel that there needs to be a stronger emphasis on the involvement of the voluntary sector in the delivery of HIV services.
Section 3
As an organisation, UKC fully supports efforts to tackle the issues raised in section 3.2, in particular improving the patient experience; service redesign; and dealing with resource pressures; improving / strengthening prevention, screening and diagnosis work. However, the feedback we have received leads us to the position that we cannot fully support the view proposed on primary care services which appear to be falling far short of the expectations of plwha and, in particular, gay men.
PLC appreciates the recognition in the strategy (page 4, point 3.2) that NHS funding has shifted away from prevention and sexual health promotion but feel that the strategy does not remedy this situation. There needs to be stronger focus on prevention as well as community and voluntary involvement as stated above.
On NHS funding, PLC go further – “The consortium welcomes the inclusion of treatment related care and social care albeit clinically based. A significant amount of social care is provided not just by PCT’s but by borough based social services departments.”
Section 4
Whilst commending the continued roll out of the LSCG “Living Well – Patient and Public Involvement Strategy”, we feel the draft does not go far enough in accepting that there is a need to support patient involvement (under Section 11 Health and Social Care Act) arrangements within NHS Trusts, and that improving the patient experience includes much needed investment in the NHS workforce and alongside buildings and facilities in the NHS estate to provide quality alongside the increase in capacity that are required.
UKC welcomes the proposals for inter agency joint working across health, local government, education and the voluntary and community sectors. However, the nature of local government in London leads to a lottery of social care in terms of each borough dealing with local politically decided priorities. In our view, much more needs to be done to improve social care and support services in order that they can adequately support the strategic pan-London provision of health services for plwha.
In relation to patient choice, it is important to note that choice can only be available if patients realise that they have one. Effective signposting of choices needs to be supported to enable that choice to be taken up.
Section 5
UKC fully supports sustained efforts to gain an improvement in the health of people with and affected by HIV in London.
PLC commented “The consortium welcomes the vision statement in section 5 but suggests specific areas of improvement in the short-term. This can include an increase in the mainstreaming of services for BME HIV communities through investment and joint working. We also welcome the development of clinical service networks highlighted in 5.1 and would like to see an emphasis placed on their importance in ensuring equitable access to quality services.”
Responses from patients were not so in favour of moves seen as “pushing” them into a primary care setting that they generally have little faith in. However, UKC would also support moves to mainstream some services for BEM communities on the basis of experience with the Positive Futures Partnership (in training, development and employment issues) that has proven that, whilst there are some services where the BEM perspective is absolutely essential, there are many where competence in the subject is paramount provided there is a good level of cultural competence. Experience shows time and again that people with HIV have a raft of issues that tie them together despite cultural and lifestyle differences – the challenge is to ensure that difference is celebrated and provided for effectively where needed.
In terms of evidence based health promotion, UKC remain unconvinced that current HIV prevention programmes are working as effectively as they could. We say this in full knowledge that much of the London work carried out so far has not involved people with HIV in design, process or delivery of campaigns. Additionally, many gay men responding to this consultation expressed scepticism over the effectiveness of HIV prevention campaigns.
On the assumption that “it takes two to tango”, we remain convinced that HIV prevention actually starts with the people that are already infected; the first step in that process has to be in encouraging early diagnosis, support and access to treatments when necessary. There are no current London inspired programmes that take this approach – our view is that London wide HIV prevention work should be commissioned that starts from this premise alongside work that supports people to remain HIV negative.
For example, a current campaign seems to signal defeat all round by targeted advertising of Post Exposure Prophylaxis (PEP) to gay men in a way that implies it is a substitute for safer sex practices. On the basis that PEP is not generally easily available, is an emergency tool of last resort, and that this advertising is not backed up by sufficient other means of supporting gay men to adopt safer sex practices, UKC would condemn it.
Still on prevention, there is little or no work to confirm or dispel the myths surrounding treatment, viral load and infectivity. There are plenty of examples of couples, both gay and straight, in sero discordant relationships where HIV transmission is not taking place despite repeated less safe sexual practices. Failure to provide accurate information on this aspect of sexual relations is damaging and may be fuelling further infections – some research is needed to assist in providing appropriate information to help people to make well-informed choices.
In para 5.2, it is unclear how the “vision” will work inside the new Sexual Health Framework for London. So whilst the HIV strategy will provide part of the “context within which PCT commissioning and NHS funded services in the capital are developed”, there is no exploration of how HIV prevention will be effectively placed within other sexual health prevention work.
The Strategic Aims
Comment overall – the nine aims are precisely that, yet they appear dressed up as measurable objectives which some are, while others are less so.
There is a lack of far-reaching vision in these proposed recommendations, many of which are achievable because they are a statement of the status quo. This is understandable in that the eventual strategy must make provision for existing NHS organisational approaches that are the basis of taking work forward. However, in other areas there is a lot of work being undertaken and proposed that should cut costs and improve services.
Comments received included this one
“I am sorry to say that this strategy comes over as just another dreary internal NHS document that will not lead to my life changing in any way at all.”
UKC’s organisational response to the last attempt at a London HIV Strategy included our view that we felt it had not gone far enough. As much of what was proposed in 2001 has still not happened, perhaps it is wiser to be more cautious about expecting radical change. The absence of action on issues which are being re-introduced as strategic aims could be taken as evidence of a lack of commitment to achieving them. Examples include specific targeted work for gay men, for African communities, for children moving into young adulthood, and for the greater involvement of positive people (now Patient and Public Involvement, and showing plenty of signs of improvement).
However, the competing pressures on all parts of the NHS dealing with HIV services are far more complex than was predictable four years ago. With that in mind, we look to seeing some action on the issues that are important enough to reappear in the “new” strategy on the basis that they were obviously important in the first place and should be dealt with between now and 2007.
A number of patient comments highlighted that there is still work to be done on developing culturally diverse and sensitive approaches and services to meet the needs of specific disadvantaged communities. The balance between criticisms in this area from gay men, and that from Africans was roughly equal.
On section 6, PLC also commented “6.2 mentions cross cutting themes but needs to be more aware of the implications and recommendations of the NHS concordat with the voluntary and community sectors as well as the recommendations of HM Treasury’s Cost-Cutting Review. The consortium recommends that the strategy be revised to ensure clearer visibility of the implications and recommendations in the section which deals with proposed actions.”
Aim 1 Ensuring equitable access to clinically and cost effective HIV diagnosis and Treatment and Care services
6.4.1.1 Mapping of HIV treatment and care services
Scepticism was expressed by individuals with submissions like
“There is no point in having an objective of ensuring equity if the document does not say what that means! There is also a need for some performance measures with a baseline and some targets or there is no way of measuring whether that has been achieved or even what direction things are heading.”
“A mapping exercise is all well and good but a lot more thought needs to be given to what it will achieve as otherwise it will be a waste of time.” Also, will mapping reveal inequities within clinics etc and between different groups of service users? How will the mapping take account of inbuilt biases within PCTs, in particular in favour of BEM and families and against gay men?”
and “So called "mapping" of services is a costly waste of effort. It is code for an expensive bureaucratic exercise which would be out of date before complete.”
At the same time, discussion groups have raised issues of access and quality, alongside differences in the standard of care between different clinics, all of which can only be addressed by conducting a mapping exercise that sets out both the location of the investment and provides some benchmarking of existing treatment service provision against the identified issues. Anecdotal examples of appalling standards of care (outside of HIV services, but towards patients with HIV) were frequently raised.
Overall, UKC supports the mapping exercise with the proviso that this aim is given some timescale within which it will be completed and that the information becomes available to patients to inform their choices about which clinics they view as providing the most accessible and best quality service.
Recommendations:
A timescale should be added to this action to help identify whether or not this aim is being met.
The needs assessment proposed at point 6.4.5.2.2. should be combined with this mapping exercise to establish the current position of HIV related mental health services.
6.4.1.2 Strengthening HIV testing (some comments made under this section are also relevant to section 6.4.2.1)
6.4.1.2.1 The commitment to reduce the level of undiagnosed HIV infection in London is broadly supported, but only within a scenario that offers the best quality treatment, care and support to those testing positive. Denial of NHS treatment to people of uncertain immigration status is no encouragement to test for HIV, (1) actually adds to the cost to the NHS of providing repeated emergency treatments to people who cannot be treated otherwise and (2) presumably fuels transmission levels within excluded migrant communities.
It has been suggested to us that lack of expertise in primary care is a contributor to late presentation, therefore we support efforts to improve on professional development in primary care settings that may reduce the number of missed diagnoses.
(6.4.2.1 also) Comments were received from gay men regarding the lack of informal social support that allows them to discover coping mechanisms from each other. The lack of support services was also raised by African participants in discussion groups. In the context of strengthening HIV testing, and from the perspective of both community groupings, there is an identified inadequacy / lack of peer-led support services (a) overall, and (b) to support people who are newly diagnosed.
As a positive HIV diagnosis is inextricably linked with [varying levels of] psychological turmoil, the message from people already diagnosed appears to be that post diagnosis support is falling far short of their expectations. This has damaged their lives, compounded stigma and discrimination as well as any pre-existing mental health difficulties, and in some cases ruined their relationships and future prospects. In terms of mental health, this absence of provision is probably leading people to worse health than if earlier interventions were available to support healthier living with HIV infection.
In terms of the concept of “Living Well with HIV”, there appears to be unmet need after diagnosis which is compounded by lack of access to appropriate voluntary and community organisations where many of those already diagnosed look for support. There is also a complete absence of any mention of the challenges that people with HIV face in terms of disclosure in relationships, in families, with children, in the workplace.
During the discussion groups, evidence was heard of actions in communities that are encouraging people to make use of community based testing services. The expansion of one hour testing in appropriate Voluntary and Community Organisational settings is supported.
Also during the discussion groups, some anecdotal examples were given of people diagnosed very late after emergency admission to district general hospitals with either a small, or no, HIV unit attached. In the absence of HIV diagnosis, patients with advanced HIV symptoms appear to be being let down by the NHS; cases have been quoted to us that ended in deaths which people feel could have been prevented by a wider knowledge of HIV issues within A+E and general medical departments in acute hospitals. People raising this feel it is important as they have no choice of where they are taken in an emergency situation, they arrive at the nearest A+E department where every effort might be made to treat the presenting symptoms, but expertise to detect the underlying cause is a lottery.
Whilst ante natal testing is supported, some questions have been raised at the obvious outcome in terms of the increase in numbers of women diagnosed with HIV. In the absence of similar opportunities to encourage heterosexual men to test, the supposition is that there must be more men with HIV than current statistics would have one believe. This then provides the evidence to justify service provision for women and at the same time further excludes men.
Recommendations:
That some timescale is provided for implementation of the recommendation for PCT local HIV/GUM planning groups.
That arrangements for partner notification in cases of positive test results in ante natal settings are made clearer in order that efforts can be made to encourage testing by partners can be incorporated into either this strategy or standards by which maternity services are provided.
That HIV treatment and care is re-defined in order to include an element of post test support for those testing positive, including proper signposting to appropriate VCO agencies dealing with social care, and wider availability of “newly diagnosed” courses, perhaps as a first step onto the “Living Well” ladder.
In order to avoid a postcode lottery and maintain the concept of open access which is so appreciated by plwha, London wide commissioning arrangements should apply to provision of peer led, peer provided support, including “newly diagnosed courses”. This is not an issue that should be left to local PCT planning groups, but one that should be addressed by the London Consortium. The concept of open access in treatment centre is also appreciated by plwha seeking VCO support services.
6.4.1.2.2 Increasing HIV testing in TB centres
This is broadly supported. However, comment was received suggesting that all patients with HIV should be routinely tested for TB, all forms of viral hepatitis, and sexually transmitted diseases.
Recommendation:
Some timescale should be attached to the implementation of the existing recommendation, albeit recognising that the London TB Network is not under the control of LSCG or the HIV Consortium, there must be some means of measurement to show whether or if this recommendation has been achieved.
Aim 2 Empowering people with HIV in patient and public involvement to influence HIV services
Comments received on this Aim
“Plwha do not need to be empowered, we need to participate in the services we receive. This requires an entire new infrastructure together with a sea change in NHS culture and working methods, and the action points set out will have almost no impact at all in my view. The NHS needs to stop thinking that plwha are just waiting to join in - they aren't and the reason for that is that almost everyone who has done this has come away disillusioned.”
and
“The first step towards improving patient care is to identify patient needs, wants and concerns. This report goes no way towards that and therefore is not a basis for a strategy. “
This aim was overwhelmingly supported by participants and respondents. However, there is little or no incentive on NHS Trusts with HIV clinics to set up and support user led involvement schemes.
To our knowledge, across London there are only three functioning user-led HIV clinic user groups / forums / patients’ networks. It should be noted that one of these clinic groups is cited as an example of best practice by Department of Health in the October 2004 publication “Getting over the wall: How the NHS is improving the patient’s experience”[1]
Attempts in South London to create a service user involvement project have floundered. However, work is in progress to review and replace that project by April 2005. The outcomes of that work should be useful in informing action north of the Thames, therefore we see it as important to note progress in South London to allow sharing of best practice in due course without repeating past errors.
6.4.2.1 (See the important comments made above under 6.4.1.2.1 above)
There is no timescale for implementation against this recommended action by Sector Clinical Networks. Given the strength of feeling on this issue expressed by contributors to this debate, and the weight which patients feel should be given to this part of the strategy, a definite commitment to pan London action would be appreciated, preferably one that supports the calls made for open access as opposed to sector and PCT insistence upon providing “local shops for local people”.
The way that support services for women have been re-structured in South London is of concern to many women who have had to adjust from the prospect of regular, reliable services which they were only too willing to travel to Islington for, and in a venue specific to their needs, including child care and catering, in exchange for erratic, unpredictable services at a variety of disparate venues across south London and where the previous level of backup support is no longer available. This is no criticism of Positively Women who provide the services, but of a commissioning system in South London that has failed to take the expressed views of service users into account when redesigning social care provision.
6.4.2.2 & 3 The message from “Getting over the wall”, addressed to a professional audience appears neatly summed up here -
‘Involving and consulting’ has a particular meaning in the context of Section
11[2]. It means discussing with patients and the public their ideas, your plans, their
experiences, why services need to change, what they want from services, how
to make the best use of resources and so on. It is more about changing attitudes within the NHS and the way the NHS works than laying down rules for
procedures.’[3]
The view of UKC is that encouraging involvement should start at the place where all diagnosed patients are – the HIV clinic. In the absence of a clinic user group, the only other avenues to patients to begin an engagement in Patient and Public Involvement (PPI) are via the “Living Well” programme, or by sheer accident. We welcome the roll out of the LSCG Patient and Public Involvement Strategy across London, in particular the activity to deal with “changing attitudes within the NHS and the way the NHS works”. However, a number of engaged patients made comments to us about the barriers to their involvement, and the inability of NHS staff to deal with changing the way the NHS works despite repeated prompting by patients (a number of examples were quoted, including issues raised by clinic user groups that have not been dealt with at all).
Alongside this, there are barriers to involvement of patients with a stigmatising condition – it is far more difficult for patients to say “hello, my name is Jim and I’ve got HIV”, than it might be for most other conditions. Patients tell us that they fear confidentiality breaches and also that participation might affect the care they receive. A clinic user group in East London reports that these are major problems in engaging patients.
Women with children report that a further barrier to involvement is the lack of provision, or funding for, childcare. Examples of the NHS response to requests for childcare support included clinical staff dismissing the suggestion on the basis that “they can’t get childcare, so why should you?” This is unacceptable and the need for NHS Trusts / Foundation Trusts to facilitate childcare needs to be addressed.
Clinic based user groups are also perhaps the only way to engage with patients who commute into London for their treatment. Accepting that this can cause difficulty in terms of linkage between London clinics and local services outside London, many patients still prefer to use London services. The input from patients who reside outside London is just as important in shaping the way those services are planned and delivered.
The challenge is two fold – to develop patients’ skills and confidence to get involved, and to develop NHS managers and clinicians to respond appropriately. In order to support this, NHS Trusts and PCT consortia need to put in place more robust and overt arrangements for user led PPI forums that suit the needs of the patients and service provider.
In South London, a service user involvement project which started in 2001 is currently being reviewed in line with the stocktake measures required by DH for activity under Section 11. Between December 2004 and March 2005, efforts will be made to pull together a new South London HIV User Involvement Project Steering Group, with a lay chair and a lay majority, with a view to complete revision of previous and ineffectual arrangements for the people, patients and the NHS of South London.
Recommendations:
A timescale for implementation of existing recommendations needs to be included.
That emphasis on facilitating meaningful patient and public involvement is placed within Service Level Agreements with all NHS Trusts / contracts with Foundation Trusts that provide HIV services (effective from April 2005). This needs to include an indication that reasonable financial provision will need to be made to support PPI activity.
That the moves forward on the renewed South London HIV Service User Involvement Project are monitored and if found to be a useful addition to the North London agenda, that the “Principles of Engagement” agreed with Croydon PCT (on behalf of South London HIV Commissioners)[4] and the best practice from the South London project are replicated in London north of the River Thames.
6.4.3 Aim 3 To maintain and develop best practice in HIV treatment and care services
6.4.3.1 Respondents mentioned quality issues repeatedly. However they also raised quality issues like “respect”, “accessibility” alongside a whole raft of issues relating to primary and other parts of acute hospital care.
As for delivery within BHIVA guidelines, we were presented with evidence from one major clinic where patients’ suggestions were thwarted because they didn’t comply with these guidelines, yet service changes were introduced (by the staff) at the same clinic didn’t comply with them either.
Comments ranged from
“Valuable consultant time is wasted on routine appointments which offer nothing more than a cursory interview and a repeat prescription.”
and “The present situation provides the worst of all worlds. Consultants see too many patients and are therefore inaccessible when they are actually needed. They have so many patients they cannot remember them and consequently there is not patient doctor relationship. Detail is lost, forgotten or overlooked. Frequently an appointment with a consultant has to be made months ahead.” “ to “This looks fine.”
Participants in discussion groups cited what they saw as problems with
§ rarely being able to see the same doctor
§ being unable to make appointments
§ difficulties with access
§ having to take a whole day off work to fit in a regular clinic visit
§ treatment centres operating in a judgmental fashion
§ lack of respect for patients as people
§ staff making false assumptions
§ constant changes rather than consistency in services
§ difficulty in getting HIV related medical help in emergencies
§ routine screening for STI’s should form part of the patient experience in HIV clinics
§ imbalance between female and male nurses in sexual health and HIV clinics – some male patients said they find this “offensive”, whilst many women prefer to be treated by female nurses
It was agreed that there was a need to monitor and improve the quality of service in some hospitals.
Patients were quite supportive of moves to increase capacity within existing resources by accepting changes to the frequency of clinic visits, reducing the number of times they see their consultant, and being dealt with by clinical nurse specialists where appropriate. There were obvious difficulties in reconciling where patients saw ways to improve services and/or increase capacity and staff took a different view. With increasing patient and public involvement and workforce development, these difficulties should decrease allowing for more reasoned debate between patients and professionals that create sensible solutions that remain clinically effective.
As plwha have raised the issue of monitoring quality issues, we feel that this should not be left solely as an internal responsibility of the provider – some means of external evaluation needs to be put in place.
Recommendations:
BHIVA guidelines should be reviewed to see whether arbitrary conditions like “see a consultant every three months” are still appropriate, perhaps moving to a guideline that allows flexibility for patients who are stable (whether on treatment or not) should receive monitoring at an appropriate interval, but only see a consultant when this is necessary on medical grounds, or on an annual basis, rather than “because that’s what we have always done”.
Service Level Agreements / contracts should include a requirement to provide an acceptable level of walk-in or other urgent appointment system for patients who are otherwise stable and for whom consultant visits are less frequent than previously may have been the case.
Some means of external evaluation of clinics’ performance against MedFASH and other standards needs to be put in place, perhaps through enhanced PPI arrangements, through the consortium audit and analysis unit, or through the LSCG.
SLA’s / contracts should reflect the need to provide more flexible services and look to providing a mixture of early morning and late evening opening hours to fit around the needs of patients who work.
SLA’s / contracts should include a means to provide patients in HIV clinics with the opportunity of regular sexual health check ups, testing for viral hepatitis, and TB as appropriate.
6.4.3.2 One respondent raised the issue of broadening the capture of KC60 data on patients beyond current data capture and into a wider view of health events the analysis of which might be a useful outcome or quality indicator for the individual patient, for the clinic and for the service overall if variations outside of a specified margin automatically trigger a quality audit. Large scale data capture on a per-patient, rather than per incident, basis could also help in designing or monitoring efficacy of London wide clinical protocols or trials.
Recommendation:
Consideration should be given to widening the KC60 data capture data to provide a London-wide database of patient health and intervention data that could be used as part of audit and analysis, quality monitoring, and support clinical innovation.
6.4.3.3 This reads like the terms of reference for the Drugs and Treatments sub-group – if that is the case, it should be made clearer that this is the strategic process that will be continued. Participants in groups who had some of the points in this section explained to them became more appreciative of the need for this kind of activity.
Overall the plan to continue the Drugs and Treatments sub-group is supported as is the list of functions provided for this group.
6.4.4 Aim 4 – Ensuring value for money and cost effective best practice in HIV services
Comments received included ”The quickest route to better value for money and effective services will be a substantial increase in participation (N.B. not empowerment) of plwha supported by those few voluntary organisations of plwha. This section of the strategy is lacking in detail and aspiration in equal measure.”
6.4.4.1 Participants from groups who had this function explained to them were fully supportive of attempts to achieve cost rationalisation by London-wide purchasing.
6.4.4.2 The prospect of home delivery suits some plwha and others are against it. On the basis that this should be an opt in service, with no coercion of patients to take it up, it is broadly supported by the people that would opt in to using it and is thus acceptable to those that prefer not to.
The concept of home delivery is shown as a value for money / cost effectiveness exercise, yet the strategy fails to explain why it is being pursued as such. If it remains included within this aim, it is necessary to explain the rationale for doing so. If the actual reason for introducing home delivery is cost efficiency, perhaps the real focus should be in requesting government to change the way that VAT is levied – on the basis that it is the government that foots the bill, they may be more interested in reducing the cost burden on the NHS by removing the VAT charged on pharmaceuticals supplied to hospitals and clinics when it isn’t charged to home delivery pharmacies.
However, as a streamlining measure aimed at improving patient experience, it may be better to explain it as part of other service improvements for patients who are stable on HAART and with no other medical complications. Example –
Patient attends clinic and sees nurse specialist for bloods to be taken
perhaps during convenient evening clinic
¦
nurse asks briefly about patient’s health and anything else of concern (dealing accordingly including referral for doctor’s appointment if necessary
¦
when blood results are available, nurse phones (texts or emails) patient to discuss them and again asks if there is anything worrying the patient
¦
if blood results show no reason to see doctor, prescription is issued automatically and sent to home delivery service
¦
home delivery service deliver drugs to patient at convenient time to patient
¦
patient returns for blood tests after appropriate interval and starts whole process over again
(with proviso that at least once a year they are seen by a physician and that they have access to walk in or similar emergency consultation with a doctor
when or if needed)
This highly simplified approach centres on the patient, cuts out at least one visit to the hospital and one consultation with a doctor, freeing the doctor to deal with new patients or existing patients presenting with complications.
6.4.5 Aim 5 – Strategic Issues that affect specific service areas and sub-specialties
Comments received included
“This section covers a lot of what the entire strategy should be covering - wellbeing issues such as facial wasting that often have more of an impact on day to day life than blood tests and repeat prescriptions.”
6.4.5.1.1 There is a need to integrate the care of parents with HIV, particularly mothers with that of their children. Paediatric networks should take note of the needs of parents.
6.4.5.1.2 The main responses to this proposal related to issues affecting adults, particularly asylum seekers (including children) who are moved out of London while receiving treatment. There were no actual comments in respect of the proposal for a national network as described. As an organisation, UKC can see the benefits for creating a network that ensures that the relatively small number of young children (compared to adults) receive the best possible clinical care.
6.4.5.1.3 No comments were received relating to this proposal. As an organisation, UKC can see the benefits of bringing all paediatric HIV services within the London HIV Consortium arrangements. This assumes that the current funding for the specialist paediatric HIV services is also transferred.
6.4.5.1.4 Participants in the discussion groups included the problems faced by teenagers moving into adult services. Leaving this activity in the sole hands of the paediatric network sub-group would appear likely to ignore the young adults’ arrival in adult services whilst facilitating their departure from children’s services. As part of the consultation, we received feedback on how disappointed young people were at being excluded from previously well regarded services in paediatric units – to them there appears no pressing need for them having to move into adult services yet they are being forced to and resent it.
Parents have commented on the difficulties they face with teenagers moving into young adulthood. Not all of the young people involved are HIV infected, but the parents responding are. In many cases, parents do not disclose their status to their children until they have to – parents need support as well as the children, whether or not the children are HIV infected.
Recommendations:
That the move of teenagers from paediatric to adult services is one which is approached from both sides to ensure that the adult services are involved and can respond appropriately to the needs of young adults.
Steps to resolve resentment when young people move into adult services need to be built into the migration process.
Social care and support arrangements for young adults need to be provided in cognisance of the needs of parents (and siblings).
6.4.5.2 HIV related Mental Health and Psychological challenges featured highly in the discussions and comments received. The level of mental health and psychological support available across London appears variable to non existent, or impossible to access.
PLC commented “mental health and psychological services (6.4.5.2) is unnecessarily removed from the voluntary and community sector where issues of domestic violence, asylum seekers, torture, rape etc are part of the issue in some communities”. Thus patients and provider organisations agree that the VCO has a place in delivering improvements to the mental and psychological welfare of plwha in London.
Comments received included
“Mental health among plwha is very poor, as are the services, and many people - and those around them - are suffering great distress unnecessarily. More to the point a plwha with mental health problems is much less likely to look after themselves and others and this has far reaching ramifications, not least in the area of preventive strategies”
Repeatedly the participants in discussion groups and on the internet describe their need for peer support in user led, open access, non prescriptive groups. We do not perceive this as a request for a return to the “drop-in” culture prevailing before the introduction of HAART, but as a call for a kind of service from which people say they derive great benefit, yet there is no means to quantify such soft outcomes. In view of the numbers of people raising mental and psychological issues, UKC feels that there is a pressing need to address minor psychological needs before they are escalated into major psychiatric illness.
Like HIV, mental illness is a stigmatising condition for those affected. This can lead to a large element of denial and barriers to getting treatment. This is exacerbated by personal fear of organic damage, one respondent said “just how much fear can one person take?” The suggestion is made that mental health services for plwha have to be much more proactive than for those that “just” have mental health issues alone.
Plwha using mental health services have told us of mental health services are not properly integrated into HIV services and appear incapable of working in tandem with them. This means plwha have another different set of health professionals to deal with and are citing consultation and treatment fatigue. Lastly, people report that mental health services need to be more culturally appropriate, not just for African clients, but also for women, people from other ethnic backgrounds, and most importantly for gay men. White gay male respondents (using outer London services) report that their experience is of a mental health service with little experience of white gay men or HIV. As this would never be acceptable in other areas of public service, the suggestion is that an audit is needed to establish the competence of mental health services to deal appropriately with the whole range of clients.
The needs of negative partners in discordant relationships appear never provided for, and the quote above suggests that family and carers suffer in proportion to the mental anguish of those with mental health problems.
6.4.5.2.1 From previous comments about open access, in particular within ethnic minority communities, there is widespread reluctance by some people to use a “local” service where they may be identified as either a person with HIV, or worse still a mental health service user.
Recommendations:
That the mapping exercise proposed at 6..4.1.1 should also cover HIV related mental health services and include the opportunity for clinical networks to identify professional development issues in respect of cultural competence of mental health providers.
Sector networks and mental health services should bear in mind that patients accessing a clinic on an open access basis for HIV treatment may fall outside the catchment area for mental health services. Appropriate referral should include the option to refer to the service local to the clinic rather than that of the patient’s area of residence.
6.4.5.2.2 This recommendation appears to be overdue from some of the comments received. As part of the mapping exercise proposed at 6.4.1.1, the current state of HIV related mental health provision should be established.
6.4.5.3 The UKC supports the notion that respite, rehabilitation and palliative care services are still needed for some people with HIV, however the levels and types of need have changed considerably since the introduction of HAART. We support the Mildmay UK review and the recommendation to make proposals by December 2005.
6.4.5.4 Subspecialisation issues
Lack of support for people suffering drug side effects is an issue that was raised in discussion groups and that is partly touched on in this section. UKC’s view is that dealing with side effects is a matter that has to be approached from both the clinical perspective and that of patient self management of chronic illness – current support for both approaches appears to be weak.
6.4.5.4.1 No comments received.
6.4.5.4.2 The only comments received related to other co-infections, specifically Hepatitis C and the need for HIV and hepatology services to work closely together (both medically and in physical proximity – patients commented on lack of access to liver clinics that were held away from the HIV clinic).
PLC comment “Whilst the consortium is supportive of the recommendation for the care of haemophilia patients living with HIV to be managed through joint clinics, we note the omission of the needs of people co-infected with hepatitis C. This is despite the commendable emphasis on TB. We also suggest that a similar recommendation should be made whereby their care be managed by a HIV and HCV specialist.”
Recommendation:
That the London HIV strategy includes mention of the emerging problem of Hepatitis C co-infection, and of links with Hepatology services with a view to providing better and consistent treatment and services for Hepatitis C across London.
6.4.5.4.3 The roll out of a reconstructive procedure (New Fill) to treat facial lipoatrophy is generally appreciated by those that have used it, eagerly awaited by those still on waiting lists. The work to plan ways to meet future need is supported.
6.4.6 Aim 6 – Ensuring accessible and appropriate services in primary care by improving education and knowledge of HIV issues in primary care
As already mentioned, a large number of people involved in discussion groups were concerned at the lack of expertise in HIV issues, not only in primary care, but more importantly (to them) in other parts of acute hospital provision.
Comments received included
“Every aspect of an infected patient's health must be recognised as "HIV related". There has to be recognition of the level of ignorance about the true nature of the ailment and its progression over time.”
and
“Compulsory training on HIV and AIDS for all medical practioners /nurses“
“It is high time the NHS accepted that very many plwha do not like or even feel able to access current GP and dental services because of stigma and a complete absence of expertise (and in many cases interest) among primary care service providers. Either PCTs need to set up HIV friendly and expert primary care services or they should give the money to the clinics and let them do it. The action points here will do no more than continue the status quo whereby most plwha are partly or completely excluded from primary care and have no confidence at all in the services.”
The discussion groups raised a number of allied issues, including HIV clinics that insist that people with HIV (and no faith in or access to GPs) take what are considered unconnected issues to a GP surgery. Patients don’t always share the notion of what is and what might not be HIV related and many are using HIV specialist services as their primary care provider.
In 2002, UKC made this comment on the then draft HIV strategy for London –
”Primary Care – we remain unconvinced at the capacity or willingness of general practice to become more involved in promoting HIV testing. We expect the final strategy to take note of the expressed unwillingness of gay men to use GP’s for sexual health matters.
However, we fully support any effort to increase GP awareness of signs and symptoms of potential HIV infection, and encouraging GP’s to discuss their consequences sympathetically with patients.”
This comment was based on feedback from research conducted at the time and in relation to both the London and national HIV strategies.[5] As there has been no significant strategic activity across London to encourage the professional development of GPs, we see no reason to change our position other than to reinforce it and suggest that the need is demonstrated as far greater than just primary care, extending also to acute hospital medical specialists.
6.4.6.1 This recommendation includes no indication as to how or what should be carried out, or by when. Sector networks may well be able to share models of good practice within primary care, however treatment centres should not shunt patients off to primary care without checking first that primary care is (avail)able or willing to cope with patients with HIV.
6.4.6.2 This recommendation is one which a large number of patients are resisting already.
Previous research[6] suggested that the reason that gay men seek advice on sexual health or HIV information from GU clinics is because these are seen as the most appropriate places to do so. Primary care is neither seen as appropriate by gay men to discuss these issues, neither do general practitioners have a particularly good track record in dealing with sexual health matters.
60% of people who took part in the joint THT/UKC consultation on the National Sexual Health and HIV Strategy in late 2001 thought that it was not a good idea to involve GP’s in HIV testing or counselling. Almost 70% of gay men respondents (and 60% of others) to the same survey stated that they would not use primary care in sexual health matters.
Almost 45% of respondents also added that they had experienced HIV discrimination within the health service and, where professionals were named, GP’s and dentists were the most common.
These are just some of the barriers to shared care of patients with HIV infection and are the reasoning behind the excessive use of specialist HIV centres as primary care providers.
Confidence in primary care providers in general is low, but there are notable exceptions. Evidence shows that many patients will not comply with directions to attend primary care, thus whatever they presented with in the first place probably goes untreated.
Two clinic user groups report having suggested that GPs provide services within HIV clinics, perhaps as part of an emergency walk-in service, with a view to broadening their experience and with the safeguard that HIV expertise would be immediately available to them if needed. The response in one clinic was more positive than the other, but in neither case has any progress been made.
Recommendation:
More emphasis is required on ensuring that all NHS primary care providers are competent to deal with patients with HIV in a non judgmental manner which encourages proper uptake of primary care services. Until this can be done to the satisfaction of patients, the refusal of specialist clinics to deal with primary care issues is unacceptable to patients.
The suggestion that GPs provide services within HIV clinics may be a starting point for developing patient confidence, we suggest this is considered as part of the pilot scheme proposed at 6.4.6.3
6.4.6.3 Such a move might be supported if it were piloted in a way which involved patients of one clinic at a time with local primary care providers and in a manner that increases confidence and creates a trust relationship between patient and doctor. Barriers to this are the fact that HIV treatment services are open access, patients with HIV are mobile, and access to GP practices is based on nearness to the patient’s address, not proximity to the HIV clinic.
6.4.7 Aim 7 Ensuring provision of effective, evidence-based Pan London HIV prevention and health promotion services
Comments included
“This is just rearranging the deck chairs. HIV infections continue to go up while money is wasted on pathetic prevention campaigns. More imagination is needed, in particular about exactly why people continue to put themselves and others at risk - knowingly and unknowingly - and what can be done to change behaviour and attitudes. Plwha need to be central to this - we have learned from experience and have plenty to contribute.”
“Given that prevention is not working and is unlikely to have any significant effect there can be no assumption of any savings to be made arising from campaigns in this direction. The only way there can be real savings is for an actual cure to be developed.”
There were few mentions of prevention during discussion groups. Other discussions have reinforced the need to provide targeted services to communities at risk, particularly gay men, Africans, and the indigenous Afro-Caribbean community. Some contributors questioned the evidence of effectiveness of existing prevention work.
Organisationally, UKC would agree with the continuance of pan-London HIV prevention programmes that are evidence based. However, the involvement of people with HIV in the design and delivery of such programmes has been minimal, campaigns mainly assuming that the audience are all HIV negative and implying that there is no need to conduct prevention campaigns that target plwha. As plwha are the source of potential further infection, the involvement of plwha would seem a sensible step. Steps to encourage HIV testing should be incorporated as knowledge of HIV status not only helps improve the health of the individual, it also contributes to behaviour change which can impact on HIV transmission.
PLC commented “The consortium recommends the need to include the provision of treatment information resources which needs to be pitched at various levels along an ‘information ladder’ is going to be essential to enable effective patient involvement and choice, as well as improved patient experience and health”.
A potential policy barrier to effective HIV prevention campaigns is emerging with the growing number of prosecutions of plwha for HIV transmission. The most recent prosecutions have also served to stir up xenophobia and discrimination against black, migrant men, albeit that the first prosecution for reckless HIV transmission was against a white male (drug user) in
Recommendation:
That pan-London work to encourage HIV testing by gay men is prioritised by the Gay Men’s HIV Prevention Partnership, and that the action at 6.4.7.3 to create a London African HIV Prevention and Health Promotion programme is similarly prioritised.
That pan-London information provision needs to ensure that information is provided in forms that satisfy the “information ladder” which is essential to providing patients with effective involvement in health and choice.
That London’s NHS accepts that criminal prosecution of HIV transmission is likely to negate HIV prevention programmes by shifting the responsibility for safer sex from a shared one to placing it all on the plwha. This is a policy issue that cuts across government and a discussion that should be had (again) between DH and Home Office.
6.4.7.1 Supported provided that PCTs make appropriate contributions to pan London projects that acknowledge the fact that many gay men, for example, travel from outer/outside London to the centre for social and other reasons. Thus the benefit of investment in central London is felt far beyond the central area.
6.4.7.2 Supported provided that people with HIV are involved and included as intended targets of future work by the London Gay Men’s HIV Prevention Partnership. Pan London work should support any national initiatives proposed.
6.4.7.3 Supported on the basis that, whilst many diagnosed HIV infections are known to have occurred in Africa, the number of sexually active Africans with HIV is growing and their needs, plus those of uninfected sexual partners, need to be addressed. Pan London work should complement ongoing work by the National African HIV Prevention Partnership and should follow the as yet unpublished framework on African health promotion.
6.4.7.4 Supported on the basis that local maternity services are involved in design and delivery of this kind of proposal, and that “implications” means not only the cost but the effectiveness of infant feed as opposed to breast feeding in terms of mother to child transmission after confinement.
6.4.8 Aim 8 – Promoting Partnership working in other service areas
PLC commented – “There is a wide recognition that good advice improves health and wellbeing and that advice is at the interface of health and social care. As a result funding is shared between the health sector and Local Authorities, however, there is a lack of strategic planning and co-operation between PCT’s and Local Authorities in some parts of London, which has at times resulted in patchy and un-cordinated provision. The consortium recommends that the strategy promotes closer working between PCT’s and Local Authorities on the planning and commissioning of advice and other services.”
Comments included
“No. LAs and most voluntary organisations will not care what is in this strategy or consider themselves party to it and will continue to serve most plwha exceptionally poorly.”
“More London wide regular support, peer education, care at easily accessible venues.”
“Multi-displinary working being introduced, flow of information. Within the system??? (Heath & Social Care). This is fine when treated in local hospital but HIV does not follow into this category, i.e. stigma and discrimination can be detrimental to case management”
The discussion groups raised the issue of variability in social care provision according to borough. Gay men and Africans alike have raised the issue of open access to user-led peer support that is currently missing for many of them.
Plwha appreciate open access services, they themselves are mobile and many are not prepared to access services too close to where they live. They are not as interested in referral pathways, except perhaps on initial diagnosis where they are calling for more to be done. Plwha with complex social care needs should get access to the best possible services to support their wellbeing and, where appropriate, that of their families, carers and dependents.
Some people were very critical of local authority housing procedures and point out that the private housing market is unsuitable for many plwha, yet social housing appears to be a lottery. With housing playing such a key part in maintaining good health, the anecdotal evidence shows that many/most local authorities are failing to support the health needs of plwha by failing to provide adequate housing to people in real need.
6.4.8.1 Supported from the point of view of plwha with complex support and care needs. Some note of how support services for those with less complex needs, for long term survivors, for gay men, for families, needs to be built into pan London arrangements to provide open access support when needed.
There is no indication of when this activity is to take place, or of timescale or projected outcomes.
6.4.8.2 As already stated, there are calls from plwha for increased levels of pan London support provision, thus this recommendation is supported.
There is no indication of when this activity will take place, or of timescale of projected outcomes.
6.4.8.3 As an organisation, UKC supports this proposal. However, this process is not being carried out in a transparent manner; no information has been readily available from DH or from other participants in the review.
There is no indication of either what is to be done, by when or whom, or of any projected outcomes.
6.4.8.4 There is no recommendation to continue the existing work of the Treatment Information Providers Initiative to cover existing, let alone future work.
Supported. There is no indication of timescale for this recommendation.
Recommendation:
The existing functions of the London Treatment Information Providers Initiative need to be included as part of strategy.
6.4.9 Aim 9 Promoting partnership working in NHS Research and Development issues
No comments were received on this aim, neither was it raised during any of the discussion sessions.
From an organisational perspective, UKC supports the continuing partnership between the HIV consortium, BHIVA, and other NHS R+D agencies.
General comments
The consortium supports the direction of the strategy but finds it still at a very abstract level with many details needed to be filled in. It is strong on treatment and clinical issues and weak on matters of prevention. The strategy does not emphasise enough the need for closer working with the voluntary and community sectors in order to achieving the objectives. The role of the voluntary sector has been underestimated in the proposed strategy and we strongly recommend the inclusion of the key role played by the voluntary sector in the document.
The consortium wishes to stress the importance of a commitment to the strategy from all the major parties. The consortium suggests that an agreement and a signing up from all major parties involved in the commissioning and delivery of HIV services should be vigorously sought.
Conclusions
The general direction of the nine strategic aims are broadly supported by the plwha that were involved in general discussion sessions we facilitated and by those who responded independently of those sessions. However, in view of the timescale involved, the views expressed are only those of the relatively small number of participants in the discussions and the minimal number of external responses received.
From the PLC, the main organisations that contributed to their response were - NAZ Project London, LEAN, Positively Women, Camden CAB, The Haemophilia Society and
Declarations of interest
Chairman of the UKC, Bernard Forbes and author of this report, plus one member of the Midweek Group consulted as part of this work, are both members of the London Specialised Commissioning Group Patient and Public Involvement Reference Group.
Additionally, Bernard Forbes was a member of the London HIV Consortium’s Strategic Planning and Modernisation sub-group that contributed to the production of the draft strategy.