For two decades the GMFA have been working at the forefront of  HIV and sexual health prevention aimed at gay men in London and other major cities throughout the UK.

The charity sites the slashing of HIV and sexual health prevention budgets, the large-scale reorganisation of the NHS and a move from a national sexual health prevention strategy to a local focus, as the reason for the crisis.

However, Mathew Hodson, head of GMFA programmes is determined to turn the situation around, saying: “Whilst this position is obviously a daunting one to find ourselves in, I also believe that it may prove to be a great opportunity for us, an opportunity to re-think what we do and how we do it.”

The funding crisis comes against a backdrop of increased rates of HIV transmission in the gay community. A situation largely thought – not to be a result of a lack of information about HIV transmission – but due to recreational alcohol and drug use.  MSM (men seeking men) using social media cruising sites such as Gaydar and  Grindr are  another likely contributing factor in increased HIV transmissions.

Hodson goes on to say: “ The environment in which we operate has changed enormously and continues to evolve. HIV is increasingly a manageable condition. Anyone who seeks out this information will find it, so it’s no surprise that the fear – which once prevented many people from taking sexual risks – is diminished. Despite these advances, people who live with HIV continue to suffer both physical and emotional disadvantages over the course of their lives as a result of their infection.”

If you would like to attend a GMFA community forum to discuss new ideas, or would like to support GMFA email: at gmfa@gmfa.org.uk or tweet them via @GMFA_UK or drop them a line via www.facebook.com/GMFA.UK.

The House of Lords have published their report ‘HIV and AIDs in the United Kingdom. Lord Fowler, Chairman of the Committee, talks about the scale of the challenge facing the UK, what the Government needs to do to combat HIV and AIDs and what lessons need to be learned given the epidemic is far from declining.

London HIV clinics are about to embark  on a new approach to prescribing Antiretroviral drugs (ARV’s) that will last for at least two  years

The government has given NHS managers the job of saving a lot of money, fast! So they are doing what they can to comply, this process is euphemistically called making ‘efficiency savings’ but can more accurately be described, in practice, as ‘cuts’.

The London Specialised Commissioning Group (SCG) commissions HIV care and treatment for London hospitals. It recently undertook a tendering process aimed at saving money by using less expensive but clinically appropriate drug options for patients accessing treatment in London,  The objective being to treat more HIV patients within limited resources. For more information go to www.londonspecialisedcommissioning.nhs.uk

At a time of Government cuts in the NHS budget, I don’t object to saving money so more people with HIV can be treated but doing so does have implications for patient choice.

There are certainly lessons to be learned from the way in which the process was undertaken i.e. the lack of any meaningful consultation with patients about what was going on. Effective public patient engagement is not always easy, consultation takes time and can mean people object to any proposals made, time constraints and the legal constraints relating to the tendering process are also important considerations.

Still, now it’s a done deal we have to live with it. The new arrangements will certainly have an impact on the choices people who start treatment in future can make about which drugs they are able to take.

It may also affect those currently on treatment, they may be asked to change drugs but this should only happen where it is clinically appropriate.

Essentially, no matter which clinic you go to in London, in future you and your consultant will choose from the new ‘set menu’ of drugs available.

Soon a short and long version ‘Patient Information Leaflet’ will be available in your clinic telling you about the changes in more detail, a draft version is already available in some clinics.

It is important to understand that the new prescribing rules only apply where it is ‘clinically appropriate’. This means any drug combination you are asked to take has to work for you, not only against your personal strain of HIV, but you also have to be able to take it, as prescribed, and deal with the side effects.

Your Consultant is a Doctor whose first duty under the Hippocratic Oath is to ‘do no harm’; he/she should never ask you to take something you cannot manage to adhere to or which is making you feel ill simply because a more suitable drug is more expensive and is not available on the new ‘set menu’. So, while you may find that cost of treatment is discussed with you it should not be the deciding factor in what drugs you are prescribed.

Remember, Doctors prescribe the pills but we are the ones taking them, you can say NO’ to a particular drug or combination of drugs, but this doesn’t mean you should stop taking your ARV’s,  you just need the ones that are right for you.

Doctors are not mind readers, they are also very busy and you may not see them as often as you used to, especially if you are defined as a ‘stable’ patient. So, if you feel that the drugs you are asked to take are not suitable for you, because of side effects, because you cannot manage adherence issues or for any other reason, then you need to discuss this with your Consultant. If you find this difficult, then take along a friend, partner or someone who can help you make your views known.

Your Consultant will be aware of the new prescribing guidelines and the issues they raise and will have a professional interest in how they are affecting the patients under their care. The better your relationship with your Consultant and the more honest you are with them about any concerns you have the better for you, for them and for everyone else.

If you feel that your Consultant is not taking your concerns seriously, you have the right to change Consultant or even Clinic. If it comes down to a choice between changing clinics to find a more supportive Consultant or stopping your medication, then there is no contest: change Clinics, do not stop taking your medication.

If you have something to say about the process by which all this came about, then tell your Consultant.  Write to the London Specialised Commissioning Group (SCG), their contact details are available on their website, and raise the matter at the Patient forum in your clinic if there is one.

You can also choose to attend the Public and Patient Engagement sub group of the SCG and ask questions; again further details are available from their website. You can raise the matter with the NAT (National Aids Trust) and let them know this is an issue is something they should get  involved with. If what happens in London is considered a success, it could be rolled out elsewhere.

The Government’s rhetoric repeatedly stresses ‘Patient Choice’ and ‘no decisions about us without us’, well ‘Choice’ at least in terms of drugs has just been restricted and that decision had indeed, been made without us….this time.

The Government has announced a ‘pause’ in the Healthcare reforms to ‘listen’ so, you could write to your MP to let them know what is happening and what you think should happen, both now and in the future, to the services you rely on.

Perhaps you want to bring this or any other matter to the attention of those MP’s and Peers who are particularly interested in matters relating to HIV/AIDS, e.g. the impact ‘Welfare Reform’, you can do so via the All Party Parliamentary Group on HIV/AIDS, their web site is at www.appghivaids.org.uk

So far as support is concerned, people in Sydney appear to be very well served. ACON (AIDS Council of New South Wales) is NSW’s and Australia’s largest community-based gay, lesbian, bisexual and transgender (GLBT) health and HIV and AIDS organisation. They aim to promote the health and wellbeing of the GLBT community and people affected by HIV, and reduce HIV transmission, and also serve as an ‘umbrella organisation’ for other HIV and GLBT organisations.

Amongst the HIV support organisation ACON supports, the Positive Living Centre (PLC) in Surrey Hills and Positive Life NSW were the two that attracted me most. The PLC is a haven for people living with HIV with its comfortable lounge, free Internet access, consultation rooms and a large kitchen and dining room at the rear of the premises. Although it is open each week day, the most popular days are Tuesdays when breakfast is served and Fridays for lunch. Having shown proof of my HIV diagnosis and signed up as a visiting member at the start of my trip I was able to meet people and share lunch with them on the last week of my stay.

It was over a nutritious and substantial meal that I found out about Medicare and prescription charges. Finance seems to be as big a problem for people living with HIV in Australia as it does in the UK. I discovered there is a positive women’s group, but unlike most HIV centres in Britain, the majority of people living with HIV I saw in Sydney were white gay men and this seems to be the case across the rest of Australia. Generally, the people I spoke to were satisfied with the HIV services provided in NSW, but from what I heard, the situation they enjoy is not common in every state in the country.

ACON also refers individuals to other services like the Bobby Goldsmith Foundation (BGF) which is Australia’s oldest HIV support organisation founded a year before ACON in 1984. They offer social and financial support to people living with HIV in NSW. Unfortunately there wasn’t time to meet up with anyone from BGF nor with Positive Life NSW who produce first-class HIV publications and run a Positive Speakers Programme. Nevertheless, I hope to establish contact with both of them in preparation for a return visit in the not too distant future.

To be continued….

ACON (AIDS Council of New South Wales)

Bobby Goldsmith Foundation (BGF)

Australian:  The nunbers

16,700 people living with HIV in the Australia

300 young people under 18 infected in the Australia

5,000 children live in a family affected by HIV

75 people die every year from illnesses related to their HIV infection

1,000 people are diagnosed with HIV every year in year Australia

2008: the highest number of new diagnoses in the Australia was recorded

 

AIDS Trust of Australia website – www.aidstrust.com.au

HIV prevention and social care services will disappear, as the charity is forced to make staff redundant, putting a question mark over the charities ability to survive in the long-term, if vital funds are not found.

The decision to cut funds to ACET ignores the public heath risk of  blood born viruses, says the charity.

Bruce Willing, Chairman of ACET told the BBC: “If ACET is to continue to offer care and support to those living with the illness, as well as to educate islanders, particularly young people, about the potential risks and behaviours that may increase their chances of contracting blood related illnesses, we have to find a source of new funding urgently.

“This is a sad time for our staff and also one of considerable concern for our clients who are naturally seeking reassurance about what emotional and practical support will be available to them from May onwards.

The minister for treasury and resources had provided ACET with a £38k grant from the Drug Confiscation Fund, but the charity say it is not enough.

Jersey is a parliamentary democracy that is a dependency of the British Crown. It is a British island, but is not part of the United Kingdom and is not a colony.

ENDS

Unfortunately the headline speaker, Baroness Joyce Gould, was prevented from attending by illness, and so the conference was opened by Clive Skelton, the city’s sexual health champion, who argued for the benefits of his position whilst acknowledging that his uniqueness in English local government made it likely that it would not survive the oncoming changes and cuts.

The morning’s sessions were all keynote speeches, delivered by Dame Denise Platt, Sir Nick Partridge, and Dr. Christine Bowman, on the social care system, the healthcare system, and clinical progress and change respectively.

Both Dame Denise and Sir Nick focused on the radical changes being proposed by the new Coalition Government. Denise noted that the HIV/AIDS sector had itself emerged from a collection of community based organisations not unlike the vision for the future of social care and service provision being promoted by the Prime Minister. She noted that despite the axing of the AIDS Support Grant, NAT had been successful in securing named allocations for monies given to local government, and called upon HIV/AIDS organisations to ensure that they hold local government to account for spending the allocations on HIV/AIDS services.

Nick outlined the Government’s proposals for reforming the healthcare, and especially its focus on ‘geographical localism’, and the commissioning of healthcare services by GP consortia. Regard GP commissioning, Nick argued that the proposals create difficulties for HIV services, as they give no role for GP consortia in commissioning HIV services, despite the need for HIV services to be better embedded in primary care. He also noted that little coverage had been given to the Government’s Public Health proposals, although it contained a number of proposals that will impact on HIV prevention agencies such a THT, which is currently making £5m of cuts to reflect a 12% loss of income from government contracts.

Christine Bowman provided a more upbeat note, as she detailed the progress that had been made in stabilising people living with HIV, including reducing mother to child transmission, whilst also noting that this highlighted the difference in outcomes for those individuals who present late, and usually with extremely compromised immune systems and opportune illnesses. She also noted that antenatal HIV testing by midwives had proved to be successful, and argued that it should serve as a prototype for introducing HIV testing across the healthcare system.

Following a series of workshops, covering issues such as ‘HIV and stigma’, ‘the role of the voluntary sector’, and ‘Positive Living’, the conference returned to plenary session, with addresses given by Silvia Petretti of Positively UK on the needs and rights of PLWHIV, Mark Pitts of Sheffield City Council on the AIDS support grant, and closed with a barnstorming presentation by Barbara Allen, a GP from Manchester about how her practice works actively with HIV positive patients to enable them to manage their health.

Overall the conference was an interesting mix of pessimism, optimism, and uncertainty about the future. On the evidence of this conference, whether the Government’s reforms across health and social care will improve the lives of people living with HIV, aware or unaware of their status, seems to leave most people feeling very much the same.

Presentations from the conference are available at: http://www.sexualhealthsheffield.nhs.uk/news/6-3-positivelytogether.php

As councils across the country ratify budgets laden with cuts  to services and jobs. Swathes of pensioners, mums and dads students and youngsters started to interrupt the process, making sure that those in power ‘NOW’ knew, in no uncertain terms, the outrage of the general populous. It was a good sight to see.

But what are we doing in our own communities to help organisations that support People living with HIV? Are we doing enough? Are we just going too stand by as council’s steal cash earmarked for HIV/Aids support? Leaving many of the charities we have left, facing closure!

David Cameron vision of a BIG Society seems to centre on having an army volunteers busy in our communities ‘making a difference’! The idea that charitable organisations can provide this kind of ‘peer support’, in local areas without being properly financed to is both laughable and ludicrous.

The problem Mr Cameron has is that: his ‘deluded vision’ isn’t backed by the government’s policies. The Aids Support Grant that provided a vital funding stream for HIV charities, had its ring-fence removed last year and is now allocated via the your councils Formula Grant under HIV/AIDS Support.

If you want to find out how much your local authority is being allocated for HIV/Aids Support in 2011/12? Go to this link on NAT’s website (change the zoom percentage to 100%)

http://www.nat.org.uk/Media%20library/Files/Policy/2010/2011%20-%2012%20Settlement%20Grants%20rolling%20into%20formula%20grant-1.pdf

Eric Pickles, the Secretary of State for Communities and Local Government, has asked local authorities to continue to support the voluntary sector, but this may be falling on death ears. And when you see large organisations like Citizens Advice Bureau planning to close operations across the country, you begin to understand the scale of the problem.

When you give cash strapped councils greater powers it becomes the people’s role to scrutinise. There is plenty of money being allocated, but how much of it actually trickles down to the services that we need and use? Lots of that money gets allocated to other local government support services like Social Work Teams! But when was the last time you got support form a Social Worker? It’s virtually impossible service to tap into in London now.

The point I am trying to make is: all HIV organisations large and small are probably going to face funding cuts. But it will be the small charities most dependant on the money that are most under threat. These organisations may find themselves last in the queue when it comes to divvying up the cash.

More than ever, I believe we need to support HIV charities and organisations that deliver essential services like: counselling, peer support, respite care, group work and support for carers.

We can bring about change by challenging MP’s, local councillors and community leaders. The government has already made a few u-turns. They’ve been won by groups and charities that have tirelessly campaigned against government reforms.

In the Welfare Reform Bill that was announced two weeks ago there was plenty of bad news. But there were some u-turns.

• The Lib-Con coalition ditched plans to reduce housing benefit by 10% if they were still out of work after one year.

• There was a u-turn on scraping the mobility element of DLA for people living in care homes.

On HIV social care I recently heard this story.

• The Brigstowe Project in Bristol recently fought off funding cuts by Bristol City Council after they proposed to cut – in full- their Supporting People grant, a decision that would have closed the charity. But with a strong campaign led by the centres manager and its many HIV-positive service users, the decision was overturned.

So if your thinking how can I really make a difference? Think again, you can.

Why not check in with your local charity to find out if they are being targeted with cuts. If they are, ask how you can best help.

Check out NAT’s HIV Activists Network it is packed with resources that can help you campaign for change on HIV Social Care and lots of other issues that affect people living with HIV. http://www.nat.org.uk/Living-with-HIV/HIV-activists.aspx

I hope I have got you all thinking about Activism.

PS if you are experiencing HIV-related symptoms that vary and change over time you may want to check out this survey by NAT. http://www.surveymonkey.com/s/G89L86D

A NEW survey launched by NAT (National AIDS Trust) has found that large numbers of the British public are confused about HIV transmission and that misconceptions about the HIV still exist.

But encouragingly 70% understand that someone becoming infected with HIV in the UK is unlikely to die within three years and 74% say that people with HIV deserve the same level of support and respect as people with cancer.

’HIV: Public Knowledge and Attitudes 2010’, is number four in a series of surveys undertaken by NAT and conducted by Ipsos MORI.

The survey looks at public attitudes to HIV, assesses support for people living with HIV, levels of stigma and discriminations and general understanding of the virus and the transmission routes.

Deborah Jack, CEO of NAT, said: “As the number of people with HIV in the UK approaches 100,000, it is crucial for everyone to understand the facts around how HIV is passed on so they can protect themselves and others.

“Whilst HIV disproportionately affects gay men and Africans, the number of people with HIV who are not in these groups is steadily rising, and unfortunately there does still remain a serious amount of confusion around HIV transmission.  Many people are unaware of the basics such as using a condom to protect themselves, whilst myths such as transmission from kissing and spitting are still perpetuated.

“It is certainly positive to see the majority of the public have supportive attitudes towards people with HIV, but there are still huge gaps in awareness of what it means to live with HIV in the UK today.

“For example, the fact that an HIV positive mother can have a healthy baby and being HIV positive can still mean a near normal lifespan.

“Whilst HIV treatment has advanced rapidly in the last ten years, knowledge and attitudes have sadly not kept pace – resulting in stigma and discrimination.  Successfully addressing HIV stigma is vital, not just so people living with HIV are treated fairly, but also so everyone feels confident to test for HIV and talk about HIV related risk.0

“The survey indicates there is a link between knowledge and attitude.  Those who understand the facts about HIV transmission are more likely to have a supportive attitude than those who are confused or hold false beliefs.  Stigma and discrimination is often borne out of fear of infection – based on misconception around transmission- they can also arise from broader perceptions and judgements about people who have HIV.”

• One in five adults do not realise HIV is transmitted through sex without a condom between a man and a woman
• Only three in ten adults (30%) can correctly identify, from a list of possible routes, all of the ways HIV is and is not transmitted
• An increasing proportion of adults incorrectly believe HIV can be transmitted by impossible routes such as kissing and spitting
• Nearly a fifth of adults (19%) believe if a family member was HIV positive it would damage their relationship with them
• More than two thirds of British adults (68%) agree more needs to be done to tackle prejudice against people living with HIV in the UK

You can  find out more about the findings of ‘HIV: Public Knowledge and Attitudes 2010’ or to download the report click here

This represents nearly 70% of the total estimate of people with HIV and Hep C in the UK.

The report is based on a study by the UK Collaborative HIV Cohort, which indicates that gay men still remain a high risk group, second only to injecting drug users.

The study looked at 31,765 patients at ten specialist HIV clinics between 1996 and 2007. 36% had never been tested for Hep C, despite guidelines from BHIVA (British HIV Association) recommending screening for all HIV-positive patients.

Matthew Hodson, Head of Programmes at GMFA, said: “It’s a major concern that HIV-positive men aren’t being screened regularly for Hepatitis C. The virus often shows no symptoms and most people who get infected will not be able to get rid of it without treatment. We urge men with HIV to ask about Hepatitis C at their clinics and ensure they get tested. By getting diagnosed early, you can start treatment and stand the best chance of overcoming the virus.”

Seven per cent of HIV-positive gay men are known to have Hep C.

A blogger on Outspoken on Health GMFA’s blog site said: “I acquired HIV in 2001 and I am currently undergoing treatment for Hepatitis C for the SECOND time!” writes the anonymous blogger. “I have stopped having unprotected sex because I simply can’t stand the trauma of all the STIs and health issues that go with it any more… people have no idea how [unprotected sex] can affect your mental health. And Hepatitis C is the new HIV. It’s out there and the treatment is hard going.”

To read the full article, visit: http://www.onmedica.com/NewsArticle.aspx?id=73925b3a-b3ea-452e-9a37-4064ea870e20

ENDS

I am taking three types of drugs at the moment in two pill formats, one is Sustiva which is my Efavirenz and the other is Truvada which is a combination of both Emtricitabine and Tenofovir. They are not bad sized pills and quite easy to swallow so taking them is not a problem.

Well, I stopped eating around 9pm last night just in case the tablets made me sick.  There is nothing worse than bringing up your entire stomach content as it leaves you feeling worse than ever, so I am erring on the side of caution tonight.

It was just over and hour ago from taking them along with my regular pills that I started to notice a slight tripped-out feeling, as though I were coming up on them; that pleasant feeling you get on a good night out with a little drug-induced help!  So, at that stage I thought it best to try and get some sleep just in case that trippy feeling turned into a drunken room spin state, you know that feeling when you go to bed and you have to sleep with one foot on the floor to stop the room from spinning?

Now this is where it all changed!  By this time all of the lights were out in the flat, but we all know our way around our environments in the dark and even when a little inebriated.  Last night I felt extremely disorientated: I knew where I was in the flat but had to aid myself with the walls and furniture to get in to the bedroom and finally into bed.  When I got to the foot of the bed, I had to let go of the wardrobe to turn around and get on to the bed, That was my most frightening stage because I fell on to the bed, feeling as though I had missed my footing.

It was my partner that taught me to always embrace these feelings in order to turn what normally would be a problem into something positive.  Problems that invoke panic can make the problem worse, but positive experiences you can learn by!

I finally got into bed with the covers over me and it did not feel like I was in bed at all. At one stage, I had to reach out to feel for the wall to make sure that I was not only in bed but in the position that I regularly lay in (that was a comfort and safety thing).  I inclined the head of the bed as I normally do but this time a little higher, not quite sitting up but more ‘propped up’, so that I was not laid out flat.

I was half awake for most of the night and this was a new experience for me. I am able to remember vividly most of the night and it was not all bad.  I can only describe the nights events in patches as at stages I must have really drifted off in to something quite deep yet very relaxing; I wish I had been in that place all night.

It is going to sound really strange for anyone who has never been in that slightly high state and probably will not understand.  It was as though I had been picked up by something and placed in a large open field or a tunnel of air, all around me was empty, yet I felt extremely cushioned and protected.  I know I was suspended because at one point, I reached out to touch the wall and could not feel anything.

As I acclimatised to the feeling of being suspended, I slowly moved down this imaginary shaft of air and then I must have put up some kind of resistance against the feeling because I suddenly felt as though I was being pushed on to my left side. I realised that I was not being pushed but instead that I was turning around a corner. It did not take long to get used to this feeling and I embraced it.  All of a sudden I stopped feeling anything, which must have been the time when I finally fell in to a deep sleep.

I experienced this a few times in the night and that must have been because at several times I awoke to use the bathroom.

This morning when I woke, I felt that I had been spark-out all night but thankfully without those dancing aches and pains.  Let’s hope that the next few weeks are going to be the same and, in all honestly, if those side effects do not go away, then I am happy to keep them, with the hope and challenge to be able to take better control of them.

If anyone is going through this kind of starting point, whether it be a new drug regime or additions to an existing one, then I can only suggest: embrace the feeling, do not be frightened by it and use it to your advantage… enjoy it!