As this information is already in the public domain, questions asked, I have today submitted for the committee's consideration. http://benefits.tcell.org.uk/forums/foi-request-london-specialised-commi... and http://benefits.tcell.org.uk/forums-keywords/benefits/social-care-rights...

In after effect of the committees's request as listed http://www.parliament.uk/HIVSELECT which asks for an acknowledgment, this is impossible to meet given that this information is already available via TCell. It is awaited if this submission will be heard.

Treatment and Cost:

1.    I raise for the committee information that London is unique through the Specialist Commissioning Group which manages London PCT’s budget on HIV NHS services, it spent in 2009/2010 £237million (I have enclosed the breakdown of spend)

2.    The LSCG budgeted was estimated to be £246m for London and a £9m surplus was returned. In a year where hospitals started to refer people living with HIV to their local GP’s for medication, given this surplus and eventually of payment of medication through the PCT’s why then was this option introduced?

3.    I shall under a separate cover the cost of treatment and services provided for London by the NHS next week; I am waiting for some additional information from the LSCG with the amount is recharges to over PCT’s for those who don’t live in London. I shall also add the amount spent per person on social care provided via the AIDS Support Grant.

4.    The Health Protection Agency suggests that 28,285 people reside within London, live with HIV/AIDS a further 2,891 access services within London that resides out of London. The HPA estimates a further 20-25% are to be infected but unknown.

5.    We ran a survey asking the question “Would you support a Pan London approach, like that of the London Specialist Commission Group collecting together the AIDS Support Grant and additional funding from each London authority to manage as one collective fund to provide HIV social care and support? Of the 62 responses 81.7% were in favour (18.3% - No) and (2 didn’t comment. Comments left said:

              I.        This is better approach than local authority commissioning as they consistently fail to acknowledge that people are more likely to use HIV/Sexual Health services outside of their borough/PCT area due to stigma etc.

As long as learning’s from failings in previous similar Commissioning groups can be avoided from the outset, a Specialist Commission should work well.

            II.        Comments (2) other

           III.        Big PAN- arrangements become unwieldy and very bureaucratic.

          IV.        I can’t answer some questions as I have no background information so don’t know what the Pan London AIDS Support Grant is or the London Specialist Commission Group? http://benefits.tcell.org.uk/forums-keywords/benefits/social-care-rights-responsibilities-entitlements/aids-support-grant-asgand http://www.londonspecialisedcommissioning.nhs.uk/about_us

            V.        A Pan London approach to social care for HIV positive people is a good idea in theory. However, in my experience there is always too much bitching and back biting between commissioners, PCT's NHS Services and Voluntary Sector agencies, they are all notoriously bad at working collaboratively. As a result services end up fragmented and ad hoc. So yes a Pan London approach would be good but I do not think the organisations who would potentially be involved are professional enough to view the bigger picture of putting the needs of HIV positive people first.

          VI.        At last it seems that the views of people with HIV are being listened to. The hit and miss provision currently available is unfair and unjust - I live in Haringey where the incompetent council may talk the talk but simply do not have a clue, for example! I don't know who the LSCG are, but I hope to god they have nothing to do with THT - the 'charity' uniquely responsible for the gobbling up of holistically focused charities that actually did something for people with hiv, and their replacement with the current void in services. THT's only fig leaf of respectability has been the notion that they are a 'campaigning' charity, yet the fact that the tragic yet curiously farce-like situation with patchy services has been allowed to develop unchallenged by them - and actually with their tacit approval (e.g. the withdrawal of alternative treatments at London Lighthouse for anyone who happened not to have a home in a particular location - although, funnily enough, my hiv virus didn't show a similar preference as to eligible postcodes!!!) is more than sufficient evidence that no one with any association to THT should have anything to do with the AIDS support grant - or anything else connected with hiv for that matter!

         VII.        Let specialist centres of excellence treat patients such as 56 Dean Street.

        VIII.        I'm just an ordinary HIV+ Joe who visits my clinic four times a year and takes my pills every night. I haven't a clue what this survey is about or trying to achieve. What's the London Specialist Group? I've no idea. What does 'a Pan London approach' mean? What is a 'Pan London AIDS support Grant'? When you refer to 'each London authority' are you talking about borough councils or primary care trusts or what? This is a survey devised by people who work in the HIV industry and to which I cannot relate. And one other thing. What are these references to AIDS all about? As far as I'm aware, AIDS is something which affects very few people in London (maybe I'm wrong) and is almost obsolescent. I did have AIDS as defined by having an AIDS-related illness when I was first diagnosed with a low CD4 count, but I don't have AIDS now and I find the term has very negative connotations. Please stick to HIV. I was told this was a survey 'for those living with or affected by HIV' - not AIDS.

          IX.        From my point of view the service is running quite well now. There are pitfalls but overall it is a good service. I think it would be better concentrating on improving what we have rather than making yet another change.

           X.        I am resident in South London and feel that the way the South London HIV Partnership is modelled is brilliant in particular the Hub & Spoke Peer support work stream which has brought on board providers that are actually in direct contact with people on the ground particularly those that are clearly not offered any support by the larger charities. This has resulted in a tremendous improvement in skills, self-esteem and confidence amongst service users. I doubt very much that a Pan-London approach would manage to achieve this and there is a risk that service delivery would be affected by admin costs. Perhaps North, East and West London (if they have not already) should adopt the SLHP model for PLWH in those areas. http://benefits.tcell.org.uk/forums/south-london-hiv-partnership-funding-and-target-foi-request

          XI.        Pan London makes most sense and would reintroduce the notion of moving away from health by post code.

         XII.        I am flexible about who administers the grant, if it goes ahead as a Pan London thing, but whoever it is, it should not be a collection of transient and ill informed commissioners who never stay in post for more than a year and whose ability to deliver progressive services is hamstrung by their lack of experience, either in commissioning per se, HIV services or the London community. This is what has happened in the commissioning of Pan London HIV prevention work, which has made it very hard for those delivering the work to build on successes and learn from mistakes.

       XIII.        There has been no accountability for how this money has been spent in the past by local authorities. Street lighting? Mending potholes? Certainly hard to see how it has been spent on providing social care for people with HIV. http://benefits.tcell.org.uk/forums-keywords/benefits/social-care-rights-responsibilities-entitlements/aids-support-grant-asg

       XIV.        Local authorities have not been held accountable for their spend of the ASG to date. This should change in the first instance before it is agreed to farm it out as a Pan London Fund. Local Authorities should report on their spend, activity and outcomes in the area of HIV Social Care and Support. My concern about it becoming Pan London relates to local equity and the lack of evaluation to date on existing Pan London HIV specific programmes. http://benefits.tcell.org.uk/forums-keywords/benefits/social-care-rights-responsibilities-entitlements/aids-support-grant-asg

        XV.        I would prefer any approach that preserved the administration of ASG money for HIV/AIDS use only.

       XVI.        A partnership approach needs to be fostered between the PCT's and User Lead Organisations. Any other way seems to create more bureaucracy.....

     XVII.        A Pan-London approach would be fairer than allowing individual authorities to make decisions and allow for the targeting of resources where needed.

    XVIII.        None (2)

      XIX.        Pan London Consortium has its preferences that are incompatible with people's needs. Each local authority knows the needs of their residents better than the Pan London Consortium. http://benefits.tcell.org.uk/forums/foi-request-london-specialised-commission-hiv-budget-200910-201011-and-201112-known

        XX.        You need to survey patients in HIV Clinics & GP centres.

6.    We analysed the AIDS Support grant for London (I have enclosed a copy of this analysis) From the responses we found that 54% contributed more than the ASG allowance received from HM Government, 12% underspent, 24% just spent the ASG allowance and 10% unanswered. The analysis found just 3% of the ASG budget was used for direct payment, current South London is the only area to consolidate via the South London HIV Partnership.

7.    I understand that HM Government has made a commitment to keep HIV commissioning as it stands. http://www.theyworkforyou.com/wrans/?id=2011-01-17c.33177.h&s=hiv

8.    HM Government have published the AIDS Support grant allocation for the year 2011/12 and 2012/13 http://benefits.tcell.org.uk/forums/aids-support-grant-allocation-201112 and http://benefits.tcell.org.uk/forums/aids-support-grant-allocation-201213

9.    An analysis of the trading accounts for various HIV/AIDS/LGBT organisations found:

Faculty of Public Health submission to the House of Lords Select Committee on HIV and AIDS in the UK – Call ... Will the proposed public health reforms impact on this system?

http://www.fph.org.uk/uploads/HIV%20Lords%20Select%20Committee%20draft%2...

Awareness of HIV and AIDS in Britain has fallen below the public radar . In the late 1980s, following the Don't Die of Ignorance campaign, public awareness of the disease was very high. Today the common question asked is—'Is it still a problem?' Perhaps because the scale of the epidemic in Africa is so vast, the undoubted challenge here is pushed to one side. Yet HIV in Britain has not gone away. In recent years, in fact, the number of new diagnoses has been more than double the annual rate seen in the mid-1990s.

By next year there will be over 100,000 people living with the disease. The number of patients has trebled in the last ten years and there is increasing pressure on the health service in dealing with our epidemic. Just as seriously, it is estimated that over a quarter of those living with HIV do not know of their condition. This not only has serious consequences for the individual because treatment is delayed, but also means that the infection is likely to be spread further.

Twenty-five years on from the 1986 campaign there is still no vaccine and, although antiretroviral drugs have dramatically cut the death toll, there is still no cure. These drugs make it possible to successfully live with HIV, but they are also the main reason why the cost of treatment for this entirely preventable disease is now approaching £1 billion a year.

This report examines what is necessary to tackle the epidemic in this country. We believe above all that a new priority must be given to prevention. The advice of the 1980s—on using a condom, on reducing numbers of sexual partners and on not using contaminated needles—remains good today. We argue for a new national campaign to raise public awareness generally, but stress that this is only one part of a general prevention policy.

Prevention measures have already showed their worth. The 1986 campaign, alongside a concerted effort within the gay community, led to a drop in HIV infections and sexually transmitted infections generally; the introduction of needle exchange programmes has meant that in Britain the rate of transmission amongst injecting drug users has remained consistently low compared to a number of other countries; and routine antenatal testing of pregnant women has meant that very few babies are now born with HIV. If new infections can be prevented, then the results are beneficial both in human terms and in savings for the health service, with a lifetime of treatment estimated to cost between £280,000 and £360,000.

In developing a new prevention policy, better testing is a priority. It is in no one's interest that there should be so many people living with undiagnosed HIV. New efforts need to be made to diagnose those infected as early as possible. Tests for pregnant women are now on an 'opt-out' basis, meaning that they will be carried out automatically unless there is an objection. This has been a significant success, and we believe that a sensible next step would be to introduce similar arrangements for all new patients at GP surgeries and general medical admissions, starting in high-prevalence areas.

Our aim is to break down the barriers that stand in the way of people coming forward for testing. For that reason, we propose that testing should go beyond the traditional settings of genitourinary medicine and antenatal clinics. We need to further encourage testing by general practitioners, and ensure that they take a full part in the efforts to reduce HIV. We also propose the legalisation and regulation of home testing.

It is also vital that the stigma and discrimination—based at best on ignorance, and at worst on prejudice—which still surrounds HIV is eliminated. Our evidence shows that even today there are cases of graffiti being sprayed on the houses of people living with HIV. Such acts of discrimination prevent those with HIV coming forward for testing, with serious consequences both for the individual and for public health generally.

We praise the invaluable help of voluntary organisations in tackling HIV, and urge that this should be recognised by the Government and local authorities when they take on greater responsibility for public health. We believe that the Government's proposals for a national public health service with a ring-fenced budget holds great opportunities—but also contains risks that must be avoided. In particular, with HIV services set to be commissioned at both national and local levels, safeguards must be put in place to ensure that HIV is not lost amidst the many competing demands incumbent upon commissioners. We are also concerned that the crucial role that local Directors of Public Health play should be properly recognised.

Traditionally, sexual health has been the poor relation of the health service. Its position is symbolised by the fact that sexual health clinics are too often placed at the very rear of the hospital. We recognise the enormous spending on treatment and care (which also helps in prevention), but deplore the lack of resources devoted to prevention work more generally. Prevention represents the very best investment that any government can make. It can yield significant savings by avoiding future treatment costs which on present projections will inevitably increase. It is only though an effective and coordinated prevention policy that we will start to arrest the numbers of people living with HIV in the United Kingdom, and give proper priority to tackling this disease.

http://www.publications.parliament.uk/pa/ld201012/ldselect/ldaids/188/18...