HIV – ‘don’t you forget about me’….

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A colleague and I were fortunate enough to attend an HIV (Human Immuno deficiency  Virus), (HIV is more memorable that HIDV!) awareness workshop in London last week and found the information on the subject very captivating and informative. The program was put together by ‘skillsforcare’ on behalf of the Terence Higgins Trust. The main emphasis of the program was to try and highlight the amount of people who are ageing with HIV and the role in which social care plays and how it needs to improve, to meet the needs.

We both represent a charity based organization in the Wolverhampton in the West Midlands called SUIT (Service User Involvement Team). We are a peer led and run service that offers hope and empowerment to those that have been affected by addiction (and associated harms). Initially we were set up to offer drug users a voice, the service has developed based on the needs, wants and requirements of some of the most vulnerable people in Wolverhampton and continues to make great strides within the local community and through our Manager Mr. Sunny Dhadley we continue to pass on a great message of hope across the Midlands area and beyond. We were hoping to gain some further knowledge from this workshop to take back to Wolverhampton with us.

Beginning with an ice breaker between the group of 20+, asking us to draw on a winding/snake like road map, where our current knowledge of HIV lay, I was pleased to see that we weren’t the only ones who marked our knowledge towards the beginning of the road map. I genuinely thought that everyone would know more than me, so it was refreshing to see that the majority of us were all there to learn something completely new. My knowledge of HIV or AIDS as I remember it stretches back to the late Freddie Mercury and Rock Hudson, when there were scary adverts on TV announcing death and shame to anyone who seemed doomed to catch this awful new disease. Early medical reports were not good and rumors circulated of Government conspiracies, green monkeys from Africa and even pharmaceutical companies conjuring up a false disease to sell more tablets.

I have been fortunate enough to travel to many countries over the world and see how this disease has impacted different civilizations. Only two years ago now, I visited Sierra Leone and sat in the Freetown hospital with some ladies in the HIV ward that had given birth to babies who were infected with the disease from delivery. It struck me how pleasant and how cheerful these women were and how the innocent children knew nothing of what would chance if any they had of surviving, due to the poor facilities and medication available in such a poor country, that was still mourning for the thousands killed by Ebola the previous year. Sitting in a comfortable warm training room in West London, with hot drinks and food available was such a long way away from that hospital.

A good informative session that allowed the group to interact again, which really was a myth busting session, but had a big impact on my limited knowledge at least.

Okay here are a few facts,

  • HIV cannot be caught through animals – including insect bites

  • It is caught mainly through sexual contact

  • You are more likely to catch Hepatitis than HIV through tattoos, piercings, sharing straws through cocaine usage, sharing razors.

  • First Aiders are at no risk

  • Mothers carrying HIV and passing on to their babies, chances are very low in UK.

  • No needle injuries have been reported within social care since 1999.

  • HIV cannot be passed on by holding hands, kissing, sharing swimming pools.

  • Sex workers carry a low risk today because of the managed systems in place in UK

Even the chances of coming into contact with an infected persons blood is such a low risk due to the fact that any blood is effectively ‘dead’ seconds after leaving the body.

I was enlightened to learn that there is a tablet that can be taken pre-sexual contact with an infected person and a tablet that can be taken post-sexual contact with an infected person. These tablets are PrEP (Pre-exposure prophylaxis), taken 24 hours before sex and PEP (Post-Exposure Prophylaxis) that can be taken within 72 hours after sexual contact.

HIV is today classed as a chronic condition, but through medicinal advancement, infected individuals do have normal life expectancy. The treatment regimes are complex and at times the side effects to the medication may be quite bad. If an infected person resists the treatment for whatever reason, this can lead to further problems. The medication needs to be strictly taken in order for it to have its desired affect. For those suffering from addictions, such as alcoholism or drug addiction the manageability of the medication is a severe problem.

The problem with people aged 50 and over being diagnosed with HIV in the UK is currently growing and by the year 2028 the proportion of over 50’s is projected to rise to 54%.

  • In 2016 there were 90,000 approx. living with HIV in England and 38% of these people were aged 50 or over. 
  • 42% of the over 50’s live in London
  • 58% were diagnosed late.
  • 1/3 are reliant on benefits and 84% are concerned about financial stability
  • 82% are concerned about being able to access social care in the future.

58% are living on or below the poverty line

downloadPeople living with HIV within the UK have to suffer from discrimination still everyday, leading people to live unfairly in denial. There is still such a huge stigma surrounding the disease that only through the help of the work of organizations such as the Terence Higgins Trust can some of these stigmas be given a voice.

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Acquired Immuno Deficiency Syndrome

AIDS is not an illness and it indicates an advanced or late stage of HIV, which normally means that the immune system has been severely compromised. 

People living with HIV are considerably more vulnerable to: 

  • Heart disease
  • High blood pressure
  • Kidney disease
  • Diabetes
  • Osteoporosis
  • Dementia and other cognitive impairments currently standing at 77%

Mental health and depression are common problems with people suffering with HIV

Women are more concerned about growing older with HIV than men.

We were fortunate to hear a very honest and open account from a gentleman named Simon who was diagnosed with HIV, two and a half years ago. He is 54 years old and explained with great emotion and passion how his life had been transformed since being diagnosed. I took a great deal from his testimony and had a great deal of empathy for his struggles within society. He is one of many who is trying to improve conditions and trying to help smash the stigma that surrounds people suffering from HIV and AIDS. The growth of social media and apps such as Grinder and Tinder to name a couple, have made ‘sex’ more available than it may have been previously.  There has become almost a belief with over 50’s that ‘oh well, it won’t happen to me now, I won’t get HIV’. A kind of carefree attitude that is seemingly allowing the growth of the disease in over 50’s. I have a friend who is living his life along these lines. Having had two HIV tests in the last 12 months and both times, proving to be negative, all I can gather from talking to him though, is that at the age of 52 and having been openly gay all of his adult life, is a dare to live life on the edge and see what happens……….

We completed a thoroughly informative and educational day by being presented with a mock case study which we worked through in small groups. It was safe to say that by the end of the session, I would like to think that I was one of many of us, who was a further bit up the road, than we were when we first started the day.

I hope that society as a whole can play a huge part in helping the Terrence Higgins Trust achieve their aims of creating and supporting the following missions and visions for the future;

Our mission

  • To end the transmission of HIV in the UK.
  • To empower and support people living with HIV to lead healthy lives.
  • To amplify the voices of those affected by HIV across public and political arenas to eradicate stigma and discrimination.
  • To enable people to enjoy good sexual health.

Our vision

A world where people with HIV live healthy lives free from prejudice and discrimination, and good sexual health is a right and reality for all.

Thanks to the ‘Terence Higgins Trust’ and ‘skills for care’ for making this workshop possible.

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