We are in a time when support services for those living with HIV are being cut. Councils around the UK have made cuts, or are planning cuts, leaving people living with HIV with little or no support especially at a time when coming to terms with a diagnosis.

The north east has had services cut, support services were limited and for some people not something they wanted to attend.

I was driven by my own determination to create a service that people would not only support, but attend. Without service users it isn’t anything. My earlier blog posts cover tHrIVe NE and what we have created. tHrIVe NE receives no regular funding. We are running currently on the money we raised at our launch night fundraiser.

tHrIVe NE has been up and running for 8 months. We’ve had 8 monthly meetings and every month I am humbled by more new people attending. In June, there was 16 of us around the room, July had 4 new people.

This is incredible. We have had gay, straight, bisexual and transgender people attend. People who have noticed us and come along.

The feedback we have had from new people is incredible. Someone who came along in May said the following:

“It is a marvellous feeling to meet a group of kindred spirits, with diversity, candour and camaraderie. To feel included is a very special feeling and Thrive is exactly that. An inspiring night. The present and future is bright.”

A new member who attending in July, feared we had a similar dynamic to sitting around in a circle, introducing ourselves and how long we were diagnosed. He was relieved to discover that we are absolutely not this at all. We are simply a group of people, living with HIV, sitting having a tea or coffee and a biscuit chatting about our latest escapades (in some cases they are really escapades), BUT and its a big BUT we are safe in the knowledge that we are surrounded by those who understand, they know what its like when you have HIV and the complications that this gives. We are safe in the knowledge that should you have a question, a burning anxiety about the virus, disclosure or anything else we have a range of experiences and backgrounds to get the support or answers required.

Cuts to services are crap. Absolutely. However, I hope that people can look at tHrIVe NE and realise that without government or local council funding a social support service can still be provided, can still be successful and will be used by those who need it.

I am so proud of what tHrIVe NE, the committee and those who attend have achieved in such a short space of time. It is something that is working and is very much appreciated by those who have attended and that means so much to me.

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There is a new campaign that has launched today aimed at the Government and Jeremy Hunt to stop cuts to HIV support services which has united HIV charities and sexual health service providers across the UK

There are a number of councils around the UK who are currently looking at reducing funding or decommissioning services completely for people living with HIV. These services can include counselling, support with benefits, how to cope with disclosure, medication, side effects. An HIV diagnosis can and does affect people in many ways and not just medically, where many people need support.

Since the campaign was launched earlier today I have seen comments from people and councils alike stating along the lines of HIV is now a chronic condition so support services are not required, people cope better these days and are more aware.

These types of statements are extremely damaging. HIV is one of very few conditions that faces stigma from the general public as well as self stigma when people are struggling with the news.

HIV may be more manageable with medication but that doesn’t stop the stigma people face.

I am involved in the launch of a social support group here in the north east to help people who are diagnosed by providing them a safe, supportive and confidential space to talk to others living with HIV. Just simply talking to someone who understands can make all the difference to someone.

The councils are being forced to make cuts and this is extremely damaging. People need support when they receive news like an HIV diagnosis and therefore the cuts need to be stopped, services need to remain in place to provide support to people.

To find out more about the campaign follow this link:

http://www.stophivcuts.org/#!blank/dcues

 

 

I deliberately didn’t do a review of 2016 as sometimes looking back isn’t a good idea, we should be looking forward. However, I then began to think about 2015 and actually I achieved a hell of a lot and why the hell should I not look back at those achievements.

Health wise 2015 was probably one of the best in recent years. My skin has become relatively under control and comfortable. It still has flare ups but the immunosuppressant has kept it pretty much under control. This is such a good feeling as there is nothing worse than your own skin feeling sore and irritated all over. Theres so little you can do.

After 18 months of different meds we settled on Triumeq as soon as NHS England approved it for prescribing. To date I am still on this med which is the longest HIV med I have had in less than 2.5 years. Not a great record but it seems to be working for me. The only issue I have is I do suffer incredible insomnia since starting it, there are days when I go 3/4 days with less than 2 hours sleep. This makes life hard at times.

I continued with my volunteering for Terrence Higgins Trust. I feel very privileged to be in the position that just by talking and reassuring people I am making a difference to how they deal with a diagnosis. One person, 12 months ago, was pretty much in a place of giving up, stopping medication and just “let nature take its course”. They were adamant they weren’t going to listen. All I did was message them on other social media every so often check how they were and have a little bit of a conversation. I invited them to the Beyond Positive Pub crawl in February just so they could see what an event was like and meet others. 6 months later this person had met a partner, and was becoming more settled with life as a person living with HIV. I don’t see I did anything particular. I just care about people.

I’ve mentioned in previous posts about a lack of support services locally. Myself and couple of other activists created tHrIVe NE. A social support group here in the Newcastle area. The fundraiser and first meeting had an amazing turnout and am very excited about what 2016 brings for tHrIVe NE. We have a great opportunity here and I am determined to make this a success the people of the North East deserve.

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For World AIDS Day 2015 I was invited by Terrence Higgins Trust to attend the House of Lords for a parliamentary reception. This was an incredible experience, to be in the company of people like Lord Fowler who was the Health Secretary at the time of the HIV/AIDS epidemic in the 80s. To hear him describe and talk about how Margaret Thatcher responded to the crisis and proposals for the adverts and campaign that was launched. I was in attendance with politicians, people from the HIV sector, and media. It was something I will never forget.

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Just before Christmas I attended the Beyond Positive Christmas pub-crawl. I love these events and am a massive advocate for them. It brings together so many people from all over the UK as we descend on Birmingham either wearing red or red ribbons. In my opinion its a way of raising awareness, but more importantly show solidarity and that we a part of the community. All to often you see via social media messages sent to HIV+ individuals that they are not entitled to a sex life, to live or to have fun and these events show that we are entitled to have fun and thats exactly what we do.

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So 2016 what do you have in store? Personally, I will continue to work with volunteering and continue to build tHrIVe NE into the success I hope it to be. I would also like to get more involved with advocacy opportunities and raising awareness as best I can. I think I can say that actually having an HIV diagnosis has been turned into a positive for me in many ways.

In the 2 years since my own diagnosis I have been able to use different support services and all with mixed results.

In my own opinion the Terrence Higgins Trust (THT) myHIV forum and shout box service is amazing. The ability to post and  live chat to others who are living with HIV is so important. They have additional services including online counselling, advice and health trainers. I need never leave home and yet still get support. I have been a volunteer since July 2014 and host shout box sessions to provide support to others. I enjoy it.

I attended a support group in the early months ran by MESMAC North East. I have used MESMAC services previously and at that time they were great. However, I was less impressed with the HIV support. I attended 3 times, in the hope it would get better but it never did and I stopped attending. I recently discovered that they have ceased the HIV support group since around September 2014.

Body Positive North East ran a social group. This was a great experience, we had debate nights, wine and cheese nights, went out for food, and even bowling. Great fun, and the 3 letters (HIV) don’t even need uttered. It was a great group. Sadly the volunteer that ran it quit, and Body Positive refocussed their attention on Sunderland and South Tyneside, relocating their offices and everything.

There is a distinct lack of support networks here in Newcastle and surrounding areas. The volunteer from Body Positive who quit wanted to set up an independent group. One that isn’t affiliated with any of the local charities and asked if I would like to be involved. I jumped at the chance. I have an idea of the type of support and social group I believe would work best and its important to me. Initial stages we did some market research via Facebook groups and Twitter to get an idea of what people wanted. The overwhelming factors were that we were a group where anyone would be welcome (gay, straight, male, female, etc) and people could attend with friends or relatives (we sometimes forget that our friends and family also may struggle with our HIV diagnosis), the group should take place on a weeknight with the option of evenings, and what seemed most important was that the group was not affiliated with any of the local charities. The last point, I don’t know too much about but believe there has been issues for some in the past and this is why they would not attend if a group was linked to local charities.

From this point things moved really fast. We came up with the name tHrIVe, a logo was created, and our mission statement and vision was documented. A key issue was where were to hold our meetings? We found a room we could hire at the Tyneside Cinema. It was just ideal, safe, secure and confidential. People wouldn’t know we were there and for those were confidentiality is necessary would feel comfortable to attend.

We launched our twitter account – @thrive_ne and Facebook page http://www.facebook.com/thrivene1 last week, and started advertising our fundraising event. This is taking place on 29th November in Secrets bar, Newcastle. Our first group will be in December.

The reaction to the group and fundraiser has just been incredible and overwhelming. We have had people in touch offering donations from all over the UK. I never expected this type of reaction.

I am so excited about the future of tHrIVe NE and whats to come. To be involved in the creation of something new and necessary is incredible and am so proud of what we have achieved in a short space of time.

It’s been quite a while since I updated this. Not for any particular reason just didn’t feel I had anything to say.

3 weeks ago my 2nd anniversary since diagnosis passed. Firstly, I can’t believe its been 2 years. It feels like a lifetime ago that occurred 2 seconds ago. Doesn’t make sense I know. For about 2 weeks before I was in such a fettle, really really not in a good mindset. The day arrived and it was every bit a big deal I imagined it to be, my emotions were everywhere. I posted on Facebook about it being 2 years and I got some wonderful comments. It was these comments that made me realise just how lucky I am.

I have amazing friends and family who have helped me just by being there. They are full of support and love. By the end of the day I was smiling.

Looking back over the last 2 years, I have also realised I have not always made life easier for myself. I have not made my journey with diagnosis easy. Its very easy to get so focussed on the your CD4 and viral load counts, internalising stigma by feeling ashamed and guilt that you forget to actually live your life. I avoided socialising with some very good friends, not deliberately, but it happened almost ruining friendships. Diagnosis took over, it seemed natural to make this become my every day life when actually I should have lived my life as it was before just taking medication.

I am still very much in love with my wonderful boyfriend. He helps make things normal, our times together those 3 letters very rarely enter my head. We have been together almost 2 years now. Time flies.

I have been on Triumeq now since January. Its been a bumpy ride still medication wise, but I have made it to 9 months on one med, which considering is my 8th combination in 2 years is good going.

I continue to offer support to other by being a peer support volunteer for myHIV.org.uk It helps take a focus off me and is such a good feeling when you have helped and supported others with aspects of their diagnosis. The messages I have received from people to say thank you for the support and for not giving up on them even when they had given up on themselves is the main driving force for me to continue doing this and even become a bigger voice in the HIV activist community. I am determined to help fight stigma and educate others.

Monday 23rd March marked 18 months since my diagnosis and it has made me think and consider about where I am at now in comparison with where I was.

Its been 18 months of peaks and troughs. From difficulties with medication, and other health conditions meaning I am now on my 8th different combination, to finding a boyfriend and spending Christmas in New York which was sheer magical.

Life really has not been easy. I started one of the newest drugs available in the UK to manage my HIV. Its called Triumeq. 2 months in and so far so good. Unfortunately, my eczema has flared up of late so have had 5 days admitted to hospital for that.

My diagnosis has been such bitter sweet. If I hadn’t been diagnosed I wouldn’t have found my boyfriend, I wouldn’t be volunteering for THT and I wouldn’t have met some of the most wonderful and amazing people I have.

The depression and anxieties that I have developed are probably some of the hardest aspects I have dealt with which has been compounded with issues with medication etc. The loss of confidence and of who I am has also hit me hard. I have withdrawn from friends. I am working on this, this will change and will continue to improve.

In recognition of World AIDS Day 2014 I had the pleasure of attending a screening of a documentary “We Were Here” and a panel discussion was held afterwards.

The documentary was based around San Fransisco and the AIDS epidemic as it started, the impact on people, their lives and how they campaigned and fought for their civil rights meanwhile watching their loved ones and friends die from the terrible virus. One man described how he would be sat on his flower stall and see people walk or cycle past, then few days later walk past with a walking stick or in a wheel chair and then eventually they would disappear. There was mentions of how people stopped asking where other people were if they hadn’t been seen for a while. This was to avoid a discussion around AIDS or death.

Despite the passage of time these men struggled to contain their emotions as they described their struggles of ill health themselves, the loss of their loved ones, losing their closest friends. There was the man who participated in a drugs trial. He was the only one to survive this. Everyone else on the trial died.

There was the nurse who worked on AIDS wards, treating the patients, caring for them and their partners and relatives. In some cases explaining what was going on as Doctors wouldn’t. She cared for them as friends. You could see in her eyes she cared.

As I watched the documentary it became clear to me there was a definite message of what these people have been through, they FOUGHT for their lives and their rights.

The message got me thinking. What messages do we send now? How are these messages currently impacting the global fight against AIDS and HIV?

Advances in science and treatment is amazing and I don’t want to take anything away from that. We are very, very lucky that in many cases HIV is well managed, but are these advances a double edged sword?

In the UK in the 80s the Conservative government of the time didn’t know how to react to the epidemic. Their response was to run an advert which was based around AIDS and death. The falling tombstones – even though I was a young child I do have recollections of seeing these adverts. This message was to scare people to change their behaviours and consider the risks they were taking. However, during the 90’s as science and treatment advanced, this message reduced. It was allowed to quieten down. In fact I am sure most people who lived through the 80’s and early 90’s only memory of AIDS is this advert.

As treatments became more tolerable and we learnt how HIV can be suppressed the message of HIV and AIDS started to change, this is no longer a death sentence you were facing but a lot term health condition. Deaths were starting to reduce.

Time has progressed and the message of HIV and AIDS no longer being a death sentence gets stronger, science has moved on and we now even have treatments available that can stop you becoming infected with HIV if you have an exposure (PEP or post exposure prophylaxis) and if you do participate in condom-less sex there is even PrEP or pre exposure prophylaxis. Surely, these advancements are having an impact in how some view HIV? In some eyes it’s just a case of popping a pill and its ok.

Yeah, HIV itself is manageable but its definitely not easy. When you are unwell, there are times when you are really unwell. Side effects can impact your normal daily routine. There are certain countries you are banned from travelling to, so that dream holiday or dreams of emigrating can go out the window. Of course there is then stigma.

I look at myself and some of the messages I give to others. I tell people not to put themselves at risk, its really not worth it, its not nice and it can cause other complications. If someone is newly diagnosed I tell them its ok, you will be ok and things will get easier. I stand by these messages but again are they impacting the fight against the virus?

I felt very humbled to see these men talk about their losses and experiences, how they fought for what we have today and I am very very grateful for this. I am so lucky to be able to pretty much live a normal life expectancy. We have to unite as a community and fight against stigma, fight for our rights in all aspects of our lives and fundamentally not lose the message that HIV and AIDS are still around, there is no cure and people should be doing everything they can to protect themselves from it.

I am concerned that the message has been diluted now due to scientific advances, and perhaps we need to work together and re-focus on not that HIV is a death sentence but it is still a life long condition with no cure, you will take treatment for life and it can still impact your life in many ways.