29 November 2012

Changing Landscapes: A Story about Living with HIV 30 Years On

On December the 1st 2012 it is World AIDS Day; it is thirty years since the beginnings of the HIV pandemic.  

Guest writer Danny West (left), trainer, coach, mentor and leadership consultant, reflects on thirty years that changed the world.

In October 1985 at the age of 24 whilst at the beginnings of my career path I was one of the first people in the UK to be diagnosed as being infected with HIV, the virus now known to cause the medical condition AIDS. My doctors gave me a life expectancy of 18 months.

In 1985 whilst at the beginning of what appeared to be a bright social work career I attended a routine appointment at a leading London hospital sexual health clinic. During my consultation the doctor suggested to my horror that along with the usual blood tests for syphilis and gonorrhoea I should also have as he termed it ‘the AIDS test’. He subsequently explained that as I was gay I was likely to have the disease. This was to be the extent of my pre test counselling where upon I was advised to return in two weeks for the test result.

At this point in my life I had only just begun to hear about this new disease and had never considered that I may be at risk or that I myself could possibly have the virus. I spent the following two weeks in a state of high anxiety; I shared my news with a few close friends and gathered together as much information as possible. The two weeks passed and I returned to the hospital with a friend to receive my results, my doctor sympathetically informed me that my results were positive and that in the absence of a cure I had 18 months to live. I left the hospital in a state of shock and returned home to an awaiting group of friends who shared my state of anxiety. I was initially unable come to terms with this information and was unable to work; I remember feeling completely immobilised, helpless and terrified by new circumstances.

Eventually a close friend came to me and informed me that she had heard of an organisation called ‘Body Positive’ and that it was to hold a social evening at a gay venue called ‘The Market Tavern’ in London. I was extremely anxious on the evening of the social event and along with my supportive friend found myself in a room filled with other gay men who were also HIV positive, this event was to be a turning point in my life and it was on that evening that I met my first partner who was also living with HIV and was to die of AIDS two years later.

During my journey I have experienced many losses and many inspirational acts of strength and courage. My career and life paths have taken many unexpected turns and I have lived an unimaginable life. From the moment of my diagnosis I refused to accept an impending death sentence. I rejected the possibility that I would die at an early age as a result of HIV and strategically set about creating a vision for my life; a life that would have purpose, meaning and impact.

The backdrop of this article is set against the medical and social responses and models to HIV/AIDS and a landscape of death, suffering and dying.

At the beginning of the 1980s when the first cases of AIDS were reported in the United Kingdom, AIDS was considered to be a gay men’s disease. This assumption within the developed world and the medical profession led to both hysteria and an overt rise in homophobia. The cause and origins of AIDS were as yet unknown, the “Human Immunodeficiency Virus” had yet to be isolated and the medical world had only just begun to grasp the concept that AIDS was linked to a breakdown of the immune system. Large numbers of gay men began to get sick and die on both sides of the Atlantic and the medical world was impotent in its attempts to explain or cure for this new and frightening disease.

The general population’s response to AIDS was one of blame, fear and ignorance this was reflected in the apocalyptic government health campaign in the UK, we were bombarded with dark images of tombstones, graveyards and the Grim Reaper. Society was frantic in its search to find the origins of this new disease and blame the assumed perpetrators. These assumptions lead to a rise in prejudice and the mistreatment and isolation of the gay community.

This was also demonstrated by the medical profession’s response to AIDS by isolating gay men in side wards and the gowning up in space suits by medical and domiciliary staff. Within local communities there was an increase of violence against gay men on the streets and within their homes. Social services departments were refusing to provide services to gay men or anyone suspected as having AIDS.

As the AIDS epidemic grew other people began to present with symptoms of AIDS, some of whom were also from marginalized groups such as IV drug users and people from the BME communities. In the early 80’s the ‘Human Immunodeficiency Virus’ was isolated and was recognised to be blood born virus and to be the cause of a medical condition called AIDS. Transmission of the virus was identified as being through blood and blood products, vaginal and seminal fluids and from mother to child during pregnancy or child birth.

AIDS confronted society with all of its taboos and opened a very large can of worms which required the caring professions, local and central governments, the third and public sectors to review their equality policies, staff training, employment practice and client service provision.

Issues of equality had to be addressed for the groups who were becoming affected by HIV ensuring that people living with HIV received services, which specifically met their needs and enabled and supported their well-being, human dignity and upheld their human rights.

Society was being confronted with many issues which ordinarily it chose to ignore such as Death, Dying and Bereavement, Confidentiality, Addiction, Sexuality, Racism, Disability and Illness (my caps). For those of us affected or infected by HIV these issues were high on our agenda. We were gaining confidence and becoming proactively involved in developing health and social care programmes and the new HIV third sector which were to empower and meet the needs of people living with the HIV.

Within weeks of the gay and lesbian community becoming aware of the first cases of AIDS in the UK amongst gay men ‘Body Positive’ and the ‘Terrance Higgins Trust’ were formed. Soon social groups, counselling and education services began to develop. These groups were being formed and developed by predominantly well educated, relatively affluent, politically aware gay men and lesbians from a broad spectrum of professions who were increasingly confident and effective in getting their voices heard both locally and nationally and were to become the leading force in the development of services for people infected and affected by HIV.

The gay community responded with courage and intelligence in the face of this frightening new disease and was able to join forces as a response to stigma and societies prejudiced reaction.

In the hospitals and clinics around the country large numbers of gay men were presenting with symptoms and opportunistic infections associated now with the virus and the medical condition AIDS. In hospital wards gay men were dying and in the absence of a cure symptoms could only be treated as and when they appeared.

Death was now on the agenda for a group who had spent their lives believing they were immortal, in a society where death and dying is a taboo subject, rarely discussed and explored. Friends, lovers and on occasion families became the primary careers of the sick and dying men both at home and in hospital settings and in the absence of a cure, death was seen as inevitable. Gay men began to make decisions about their health care and treatment and supported by their loved ones began to challenge both doctor patient relationships and the manner in which they utilised health care and social care support services.

I remained in social work until May 1986 whereupon I retired on medical grounds as I felt unable to cope with the associated high stress levels and because I wanted to commit my time to supporting and working alongside people living with HIV. In October of 1987 I moved to Brighton (TAY, the AIDS memorial there is pictured above) to work closely with a friend and founder of ‘The Sussex AIDS Help line’ and for the following 18 months helped operate the telephone support service, raise funds and provide one to one mentoring/counselling in this pioneering support service.

In 1986 Graham Wilkinson, founder of the Sussex AIDS Helpline and I were amongst a small group of gay men convened by Christopher Spence OBE to explore a vision of a innovative new centre for people living with HIV. The centre was to become the London Lighthouse and Christopher Spence its director.

Our vision for this innovative project was to establish a unique holistic centre and residential unit offering respite and hospice type terminal care, a place where people living with HIV and AIDS could receive care, support and treatment in an environment where people living with the virus could embark upon a self empowered and dignified journey of recovery or death and dying. When London Lighthouse opened it become the first centre of its kind and though it received initial opposition went onto become a leading campaigning and educational centre, which provided extensive training and awareness to local government, third and medical sectors throughout the UK and Europe.

Within local authorities, especially the inner cities, large numbers of gay men were for the first time requesting services such as domiciliary care, social work input and housing support, yet local authorities had no experience of this new client group and had no policies, guidelines or trained staff to provide services. Staff within local authorities reacted to this new client group and new medical condition with fear and apprehension and many refused to carryout their duties.

The London Borough of Hammersmith and Fulham is historically home to a large gay community and is of geographical proximity to Earls Court a traditional gay ghetto in London and close to the Chelsea & Westminster hospital a leading medical centre in the research of and the treatment of people with HIV infection. Within the London Borough of Hammersmith and Fulham one of the first local authorities to provide services to people with HIV and AIDS the first local government officer was appointed with responsibility to develop strategies and services that were responsive to this new challenge.

I was subsequently appointed as training officer for HIV and AIDS and set about establishing an extensive HIV/AIDS awareness and training programme for all the local authority staff. An HIV unit was established and further officers were appointed with specific responsibility to address issues for women, housing, drug use and the black minority ethnic (BME) communities. The development of the largest HIV training programmes within the UK was developed and established within the borough which addressed all the taboo subjects raised by AIDS such as Death and Dying and Sexuality. This training programme ensured that staff were trained and supported to provide high quality services to people living with HIV and AIDS.

Over the next few years I was to experience my own deteriorating health, the dying and the death of hundreds of gay men in the wider community, two partners, my two closest friends and a young child who I mentored for a number of years. In the gay and lesbian community everyone knew someone who had died and everyone knew someone who was dying. Expressions of grief within the pubs and clubs were commonplace and attending funerals became a frequent occurrence.

At every turn someone was involved with the care of someone with HIV or AIDS and this consequently meant that many of us were involved on some level in the empowerment of someone who was dying of AIDS. The gay and lesbian community had confronted its denial of death and was actively involved in talking openly about death and dying. The community was challenging the professions ordinarily associated with dealing with death such as doctors; community based nursing services, the church and undertakers. We were now taking a proactive role in the care of the dying and the dead.

HIV charities were increasingly offering or supporting education and training on Dying, Death and Bereavement, extensive support group and counselling services were being developed for those living with or affected by AIDS and HIV. Counselling services were specifically developed to assist those who were dying or who were in grief or bereavement.

The development of similar counselling and support services was to be reflected across social services departments and within medical services throughout the UK in addition to the development of numerous independent locally based HIV charities and treatment centres across the UK.

In modern day Britain the extended family was in decline; replaced by the nuclear family it was unable to maintain responsibility for extended family members especially the elderly, sick or dying. People with long term or terminal health conditions were now placed in hospitals and the elderly in residential homes where they were cared for by strangers with whom they often died. Within the UK 58% of us die in hospitals and yet the hospital was intended to be a place of treatment and recovery from illness.

The hospice movement in the UK, which is primarily charity funded and organised is only able to provide a small number bed spaces for the terminally ill and dying throughout the UK. The gay hospice movement began to demonstrate a mutual sharing of values and principles for the care of the terminally ill and dying and included the rights of the dying to be supported by close friends and family, to be pain free, to die with dignity, to have peace and privacy and to have options and choices of treatment and care.

The gay community set about establishing its own resources for the sick and dying, these places include ‘London Lighthouse’, The Mildmay Mission’ and ‘The Sussex Beacon’. In hospital settings the introduction of “Palliative Care Consultants and Teams” began which provided holistic care packages for people dying as a result of HIV.

Medical and Scientific advancement throughout 1990’s resulted in the early introduction of antiviral treatments which are able to interrupt virus activity and slow down the progression of HIV, these drugs could not be tolerated by everyone but they did began to change and extend the lives of people living with HIV and AIDS.

New drugs such as AZT and DDI were both toxic and had a number of unpleasant side effects; I personally had an extremely violent reaction to AZT and so it was at this point in my treatment history that I decided to take a treatment vacation and only consider treatment that would provide me with quality of life as opposed to quantity of life. I have now been on “Highly Active Antiretroviral Therapy” or highly active antiviral therapy (HAART) for eight years and have found a combination of medication which has few side effects and has boosted my immune system and given me a blood count or (CD4) count of 750, an undetectable viral load and a new lease of life.

Government health and safer sex campaigns declined in the mid 1990s, along with funding to local government and smaller, local HIV charities. Within society a misconception that HIV and AIDS treatments were a cure and that HIV remained the problem of the traditionally affected groups led to a perception that HIV and AIDS had ‘gone away’.

In 1997 the respite and residential unit of the London Lighthouse closed and gradually training and education around issues relating to Dying, Death and Bereavement began to fall from the agenda of the caring professions.

Combination therapy is a lifeline to people living with HIV; the numbers of people dying from HIV and AIDS in the UK has declined dramatically, many (though not all) people living with HIV are now expected to have an almost normal life expectancy. This raises new challenges; many people like me who are living long term with HIV are confronted with the impact of HIV and the ageing process, as well as the physical, emotional and psychological impact of living with and managing a highly stigmatised complex chronic health condition into the future. There is an increasing group of older people living with HIV who face more uncertainty in the future. Many of us have been in long term unemployment, have no financial security, live in isolation, have limited support networks and face a range of complex health issues as we age with HIV.

 Recent evidence suggests an increase of syphilis and other sexually transmitted diseases not only amongst gay men but also amongst the general population. World Health Organisation statistics report that HIV is now considered a predominantly heterosexual disease with world figures currently estimating that there are 33.3 million people living with HIV worldwide and a calamitous total of 114,766 people have been diagnosed with HIV in the UK. By the end of 2010 more than 30 million people in the world had died of AIDS.

In 2006 I returned to work following a fourteen year period of living with my partner and relying on the benefits system, I enrolled onto a back to work programme with the UKC and was appointed my own life coach who enabled me to develop a business plan and eventually set up my own coaching and training consultancy. To my surprise I quickly realised that there had been a significant shift in focus in the HIV community; people infected with HIV were now living with HIV, there was a new sense of hope and people living with HIV now had a future.

Based on my experience of being coached I decide to train and qualify as a coach myself with a view to developing coaching services and projects that would enable people living with HIV. I approached The Coaching Academy, Europe’s largest coaching school and was refused my initial request for a free training place on their diploma level coaching course. Not being discouraged I approached the CEO of the academy and explained my vision of utilising coaching to enable people living with HIV and people living with disabilities to achieve their goals. I was offered a scholarship and qualified at distinction level in 2008.

It was whilst working as a trainer at the United Kingdom Coalition of People Living with HIV (UKC) I picked up a leaflet in the lobby which advertised a leadership programme delivered by the then Disability Rights Commission. I was successful in my application and introduced myself to the then chief executive officer (CEO) Mike Adams who trusted in my vision and skills and was to later appoint me as a leadership coach on subsequent leadership programmes. I have continued to work in partnership with Mike Adams in his current position as CEO of the Essex Coalition of Disabled People (‘ecdp’), and amongst other initiatives have been commissioned by Mike to co-design and deliver an innovative leadership programme called ‘LeadingAbility ‘for people living with long term health conditions, injuries and disabilities (IID) which has included working with veterans of the current conflicts in Afghanistan and Iraq.

Parallel to my work with Mike Adams I have worked as a lead coach and advisor to the former Royal Association of Disability and Rights (RADAR) which was recently renamed ‘Disability Rights UK’ who now provide a range of highly successful leadership programmes for people living with disabilities and long term health conditions across the UK, these programmes have become increasingly inclusive of people living with HIV. Additionally I have continued to work with my former coach in developing coaching projects and successfully sourcing funding through the Elton John AIDS Foundation (EJAF) which has enabled us to deliver a number of significant coaching projects in partnership with key HIV organisations in the UK.

As we remember 30 years of the AIDS epidemic and the many people who have died we see a move towards marginalising HIV and people living with HIV even though the majority of those infected worldwide are heterosexual. We are also experiencing an increase in negative and damaging stories portraying disabled people as scroungers in the media.

Additionally I am concerned about recent reports and evidence which demonstrates that there has been a significant increase in sexually transmitted diseases and HIV in the general population and highlights the fact that there has been an absence of any significant government HIV or sexual health related campaign over the past 20 years.

The introduction of the 2010 Equality Act has finally addressed our employment and equality rights yet there is a real danger that the values and principles contained in this essential piece of legislation may fall from the agendas of our government in a current climate of recession and uncertainly . Many organisations are experiencing significant cuts in funding or the complete withdrawal of funding as we have witnessed with the disastrous loss of UKC and The Positive Place and other charities across the UK. With radical changes to the benefits system and changes in the way people living with HIV are supported by the Department of Work and Pensions (DWP) anxiety levels are high and the future uncertain; I am currently proactively supporting the ‘Hardest Hit Campaign

I believe that the time is right to readdress HIV and its associated issues and place HIV firmly at the forefront of our society’s awareness and our nation’s health and human rights agendas.

In August I celebrated my 51st birthday and in October another anniversary, 27 years of living with HIV. As I look to the future and semi-retirement I am sure that I will encounter many potential challenges associated with growing older with HIV.

I am now live in a landscape of living with HIV and I am determined to continue to contribute to the HIV community to enable people living with HIV to achieve their potential and develop their leadership contributions.

As an advocate for ‘NAT’ I am committed to ensuring that I continue to address our rights until people living with HIV experience their human rights as an actualised reality in their everyday lives.

As for my future I intend to continue to work tirelessly to secure funds for coaching and leadership projects to this end and support organisations such as a National Long Term Survivors Group (NLTSG) for whom I have served as trustee and vice-chair. I have recently decided to join the new Opening Doors London support group for older gay men living with HIV and I hope to be able to offer them some of my skills and experience into the future.

Whilst I lack the ability to foresee the future I am determined to make some sort of difference otherwise my life would have been without meaning and I would have failed in my own endeavours to inspire at least some of the people that I have met on my journey. I have become the person that I am because of and in spite of my HIV status; I know that my life has been shaped by HIV and that though it has often been heartbreaking and challenging I also acknowledge that it has also been an amazing and now continuing journey.

A lot has happened over this time; I have learnt to remember and value many significant dates and the faces of many loved ones who have gone on ahead of me. I dedicate this story to the many friends who have gone before me, they include Graham, Gary, Chris and Mansour and to the friends who have remained by my side and have supported me and encouraged me on my journey these include Carl, Sue, Yvonne, Trish, Mike, Isaac, Kiki, Sanna and Josef..............

By Danny West – Coach, Trainer & Leadership Consultant
Email - danny.west944@btinternet.com
Website - http://www.dannywest.co.uk/

Additional Image Credits
First Image Credit Flickr User ttfnrob 
Girl with ribbon - Image Credit Flickr User Seemak
Red Ribbons - Flickr User Sibley Hunter
Ribbon mosaic Flickr User alephnaught
Red ribbon beige background, Flickr User Auntie P 
Christmas tree ribbob Flickr User ginnerobot