You may remember a week or so back I posted about a new HIV awareness campaign in England called ‘It Starts With Me’ – designed to educate people about HIV, how it’s spread, how it’s prevented and what they can do to fight HIV.
Well the campaign is really in full swing now, with events and awareness materials rolling out across England.
Yesterday I returned from a trip to Berlin with my friend Anthony to find a ‘It Starts With Me’ t-shirt waiting on my door step. So I popped it on and took a few snaps, you’ll probably see me at a few events up and down the country – including pride events wearing it, talking to people about their attitudes towards sexual health, testing and HIV.
Some quick HIV related facts from the It Starts With Me website:
- 1 in 4: The number of people with HIV in the UK aren’t aware that they have it
- 10 years: how much shorter your life could be if you delay testing
- 8 in 10: gay men get HIV from someone who doesn’t know they have it
- 25-29: the age group in which the most gay men test HIV positive
- 96%: Treatment for HIV can make you upto 96% less infectious to others
Please make sure to head over to the It Starts With Me website to find out more about HIV, and how YOU can stop it in its tracks.
As many of you who have been following my writings for some time now will know, I have frequently lambasted the UK Government, Department of Health and Health Protection Agency for failing to take any decisive action to curb the rising rate of HIV infections in the UK.
In recent years there’ve been numerous repetitive campaigns about cancer, stroke, mental health, alcohol, drugs, fruit & veg, exercise – even barbequed food, but nothing about HIV since the late 1980s. Well that changes this month.
24th April 2013 marks the launch of ‘It Starts With Me‘, a campaign created by The Terrence Higgins Trust and funded by HIV Prevention England (HPE), via the Department of Health, a campaign that will run (at least initially) for two years – until April 2015.
‘It Starts With Me’ is a campaign that will be delivered online, via the press, via posters/condom packs in venues and via local outreach teams. HPE will funding national and regional organisations to promote the campaign up and down England.
The campaign focuses on:
- Testing for HIV at least once every twelve months, and more frequently if they have taken a risk, or show symptoms of seroconversion illness.
- Taking the medication they need to stay fit and well, if they have been diagnosed with HIV.
- Protecting themselves during sex by using condoms and finding other ways to avoid risk.
- Participating in community action by finding a way to support the campaign and spread the word to their friends and contacts.
Make sure to check out www.startswithme.org.uk, the website for the campaign, and watch the short introductory video, which includes many interesting facts like 1 in 4 people in the UK with HIV don’t know that they have the virus, and that treatment is easier than ever and dramatically reduces the risk of you passing the virus onto anyone else.
It Starts With Me.
On June 16th 2013 I will be taking part in the Terrence Higgins Trust‘s ‘Walk For Life’. The aim of the walk is to raise vital funds for the HIV Hardship Fund.
Imagine for a moment that you’re HIV positive (if you’re not already), you’ve got plenty on your plate to deal with as it is right? Now imagine you can’t afford to feed yourself, your family, keep a roof over your head or afford warm clothing for the winter. Things are bad with the economy right now, most of us are feeling the pinch – but it’s those who are already in a bad situation who are hit hardest at times like these.
When I was out of work, was forced to move back home and at the same time dealing with my HIV diagnosis I felt like I had few people to turn to and even fewer options to take. The Terrence Higgins Trust gave me a helping hand with its HIV Hardship Fund and their counsellors threw me a lifeline via MyHIV.org.uk – so taking part in this event is the least I can do.
Please give what you can, every penny you donate will go to helping those living in crisis with HIV up and down the UK. There are no overheads being taken from your donations, as those are covered by the registration fees paid by walkers like myself. If you’re a UK tax-payer please remember to click the ‘GiftAid’ box too and the Terrence Higgins Trust can claim back 25p for every £1 you donate. Thank you.
You can donate by following this link: http://uk.virginmoneygiving.com/ukpositivelad
Everyone who sponsors will get a shout out and a follow back on Twitter, and those who donate £50 or more will get a hand written thank you card from myself as a sign of my gratitude for doing such an amazing thing for others
All my love,
On a daily basis I get maybe thirty or forty emails from people reading this column or people visiting my website. Some are asking for support, others asking questions about HIV, a few are even hate-mail (the crazies are everywhere) – and an alarming number telling me that they’ve never had a HIV and/or STI (Sexually Transmitted Infection) screening.
Of course I always handle these messages sensitively. I suggest that they should go and book themselves in for a full STI screening and even provide a link to the Terrence Higgins Trust website where they can pop in their
postcode and find a clinic near them. But the whole exchange often leaves me baffled and concerned. Many of these people are in their mid-to-late twenties – how they have got this far in life (presumably having sex along the way) and never having had a check up?
Is it simply a case of sticking their heads in the sand or is there something more going on here? Having spoken to some of them in more depth there’s definitely some ostrich like behaviour for sure, for some ignorance really is bliss, if you don’t know something is wrong then you don’t need to worry about it – but for others it’s a fear of the testing process itself, and this can only be due to lack of education around the topic.
Going for a STI screening really is not that big a deal. Honestly. I went for one only the other month (I go every six months – and so should you if you’re sexually active). Here’s what happened:
I arrived at the clinic at about 10am. I sat around watching Jeremy Kyle in the waiting room until I was called through by a doctor. They ask you a few simple questions:
Why’ve you come in today? “routine testing”,
Do you have any symptoms? “none”,
Any pre-existing conditions? “HIV-positive”.
After that I head back to the waiting room for a couple of minutes for a spot more Jezza (turns out he wasn’t the father). Then a nurse calls me through to one of the other rooms. She takes a couple of throat swabs (say “ahhhh”), a tiny swab from the end of my penis (it does pinch a little, but it doesn’t hurt), and a swab from my ass. Another nurse comes into to take a couple of vials of blood and then I’m given a little bottle to go put a urine sample in. I’m good to go. That’s it! takes about 45 minutes, one hour tops. They’ll text me any results in two weeks time.
(If I didn’t already know that I was HIV-Positive they would have also offered a HIV Rapid Test, which gives you a result in 15 minutes)
It’s incredibly important that each of us get regular STI screenings. Most sexual health charities recommend twice a year or more frequent if you’re more sexually active. Whilst you may not have any symptoms you may still carry any number of infections without even knowing it. I myself had absolutely none of the ‘flu-like’ symptoms often associated with HIV and only found out at one of my regular screenings.
Getting checked out doesn’t just mean that you’re looking after yourself, it means you’re showing respect and looking out for those who you sleep with – after all you’d hope anyone you slept with to have been checked recently, wouldn’t you?
So if you’ve never been checked out, or maybe it’s been far too long since your last test perhaps today’s good deed could be calling up your clinic and booking yourself in for a little MOT. Don’t know where your nearest one is – sorry, that’s no excuse. Head over to THT.org.uk and click ‘Sexual health’ to use their ‘Service Finder’ tool.
Currently 100,000 people are estimated to be living with HIV in the UK, but an estimated 25% of those are undiagnosed.
That’s 25,000 people who have HIV and don’t know about it! As we come to the end of HIV Testing Week in the UK and approach World AIDS Day 2012 I put some of your questions about getting tested and HIV to Dr Sebastian Winckler from DrEd.
1. Why is it so important to get tested for HIV?
Early testing is vital both for you, and for the people you’re sleeping with.
If you’ve got HIV and you’re getting treatment you can expect to live 40 years longer than someone who isn’t receiving treatment.
If you’re taking antiretroviral medication, you become less infectious to other people. Being aware of your status means you can start putting certain measure in place (such as safe sex)
to prevent transmission, as well as looking after your own health.
2. What stops some people from getting tested?
There are a lots of reasons why people avoid HIV tests, but usually it’s down to:
- The stigma surrounding HIV and AIDs: Despite advancements in treatment, in some communities there is still stigma about being HIV+, so many people feel embarrassed about getting tested. Remember, there is no shame in being HIV+.
- The inconvenience of testing: If you work during the day, it can be hard work finding the time to go.
- Fear: Some people are simply scared off getting a result they don’t want to hear. Remember though, it’s better to get tested and treated rather than making yourself, or others, ill.
3. Where can I get tested?
HIV tests are available free and confidentially from:
- Sexual health (GUM) clinics
- HIV testing centres (Terrence Higgins Trust Fastest centres, for example)
- LGBT Centres
- GP’s and family doctors
- HIV tests are available to buy from:
- Private clinics
- Online doctors services
4. I haven’t had any symptoms, so I probably don’t have HIV, right?
Wrong. Most people will experience a short, flu-like illness about 2- 6 weeks after being infected. This is your immune system putting up an initial fight against the virus and can last for up to a month. But, this can be easily mistaken for the flu and 20% of people don’t experience any symptoms at all.
After this has gone away, you are unlikely to notice any other symptoms for a long period of time. So the only way of knowing for sure is getting yourself tested.
5. Can a test pick up any HIV infection, regardless of when I’ve caught it?
No. A certain amount of genetic material needs to build up in your system before it can be accurately detected by a test. The time taken for this to happen is called the ‘window period’ and this is different for every test.
- The standard antibody (Ab) test will pick up HIV if you caught it more than 3 months ago.
- The combined antibody/ antigen test (4th Generation test) will pick up HIV if you caught it more than 6 weeks ago.
- The HIV PCR test will pick up HIV if you caught it more than 7-10 days ago.
In most cases, you will be given either the standard antibody or combined test. If you test negative for these, it doesn’t necessarily mean that you are HIV negative, because you might have been infected within the last 3 months (or 6 weeks). You are therefore advised to take a second test 3 months later for the all clear.
If you want a faster result you can pay for a PCR test. But these are only offered at some clinics and may cost up to £250.
6. I think I’ve caught HIV within the last few days, what do I do?
If you’re worried that you’ve contracted HIV very recently, as in, within the past 72 hours (3 days) then you should go to your local GUM clinic or A&E department and request emergency PEP treatment.
7. I’m afraid to get tested because I don’t like needles
HIV tests don’t have to be done via needle or syringe, some clinics use ‘Fastest’ Rapid Testing which simply takes a prick on the end of your finger. Other clinics may take oral swabs instead, this method is considered less effective than a blood test however, so some clinics won’t offer it.
8. How long do I have to wait for my results?
That depends on the clinic you go to. Most will contact you with your result (or ask you to come back in for it) within 3-5 days. If you take a rapid test your result will be ready within the hour. Some clinics can take up to 2 weeks however, don’t be afraid to ask when you should expect the results.
9. What happens if I test positive?
First off, a positive result doesn’t always mean you’re HIV+. There is a small margin of error, so all positive results must be followed up by a confirmation test.
If you do test positive for that, then the doctor or nurse who informs you of your result will set up a meeting with a specialist who can assess the stage of your infection and talk to you about relevant treatment options. You’ll be put in touch with local HIV support groups who can help you cope emotionally, and make you realise that a positive result is not the end.
Thirty years on and HIV is still a problem in the UK, but it is no longer a death sentence. There is help out there and the earlier you get tested, the better your prospects. Whatever you do, make sure you get tested this HIV Testing Week.
Some charities that can help:
Happy Friday to you lovely people,
Today, Friday 23rd November 2012 marks the start of National HIV Testing Week here in England. This is the first time such a large initiative has been run to encourage the people of England to go out and get tested.
National HIV Testing Week runs from Friday 23rd November to Friday 30th November, finishing just before World AIDS Day on Saturday 1st December.
The initiative is being run by the Terrence Higgins Trust, the UK’s largest HIV charity (who are celebrating their 30th birthday this year) and supported by a whole host of other organisations such as BASHH, BHIVA and the HPA.
Many people are put off going for HIV test by a fear of needles or having blood taken, but the fact is most clinics these days use rapid testing known as FastTest which involves a simple prick on your finger and you’ll get the results within minutes.
Annie Lennox was interviewed this week for ITV News about her views on HIV and testing in the UK, she said:
“We’re still struggling with the issue of stigma, fear and ignorance, There are many people that now, actually need to get tested. Friday 23rd at the end of the is the begining of National Testing week here in the country and we’ll be encouraging people to go get tested and find out their status… Go and get tested, find out your status, then you can know what you’re dealing with.” You can watch the full interview here: http://vimeo.com/53871991
Boris Johnson, The Mayor of London said:
“London is home to almost half of all people living with HIV in the UK, but a quarter of them are unaware that they carry the virus. It is vital that people who might be at risk get tested, not only to reduce the risk of transmission to others, but to ensure that they get the life-saving treatments that are available”
Even if you’ve been tested recently, or are HIV+ why not help promote National HIV Testing week via your facebook or Twitter using #HIVTestingWeek and encourage your friends to go and get tested. The sooner you know, the sooner you can take control of your health and protect those around you.
Enjoy your Friday and weekend!
Lots of Love,
Life+ the must have HIV app
It seems like there’s an mobile app for everything these days, apps to monitor your sleep pattern, make you look old, give you a squeaky voice – but how about an app that’s actually useful?
The Terrence Higgins Trust (THT) have brought out a new iOS (iPhone, iPod, iPad) app aimed squarely at those of us in the UK living with HIV. Now, there are already apps out there that remind you to take your medication, chart your blood results, or give you health advice – but for a price, and certainly not in the same place.
Say hello to Life+ from THT…
- Create medication reminders
- Look up HIV medication information
- Record and chart your blood results
- Jot down notes to discuss with your healthcare team
- Access a wealth of HIV and sexual health information from THT’s vast knowledge banks
- Log onto the MyHIV.org.uk community forums
- Contact THT Direct for phone support
How much does this cost I hear you ask? Not a single penny. All you need is a free account at MyHIV.org.uk – so what’re you waiting for? Head to MyHIV.org.uk and create your account (if you’ve not got one already!) and then head to the Apple App Store and download Life+
(note from THT: there’s a little glitch in the app at the moment that means you need to give it a few seconds to load, this should be ironed out in the next update)
Today, September 10th 2012, is World Suicide Prevention Day.
Suicide is not something people find easy to discuss, this isn’t helped that by the fact that it is still considered a criminal act in many countries (but not the UK since 1961), or that many religions consider it a “sin” – all of this keeps suicide a taboo subject, one that people tend to shy away from given the chance.
But talking is what we need to do. In 2010 in the UK 5,608 people committed suicide (4,321 men & 1,377 women). A recent study by the University of Manchester showed that only 27% of people who committed suicide in the UK between 2000 and 2010 had spoken to a mental health professional. That means 73% (4093 people) didn’t feel they could seek professional assistance with how they were feeling.
There’s a tendency these days to shrug off suicide, and even term it a selfish act, and on the face of things I can see how people reach that conclusion, but you need to step into the shoes of the person in question. How bad had things got in their life that they felt that their only remaining course of action was to take their own lives? That they had no-one to talk to? No other form of resolution?
A few months ago I wrote a blog post, ‘The Night I Almost Died’, about how the selfish and callous actions of someone I had trusted left me feeling that there was no way out but to go out on a cold night and jump off a bridge. My reputation, my life, my self worth and confidence were all in tatters due to one vile and baseless rumour, something I thought I’d never live down. I probably wouldn’t be here today if it weren’t for my friend Ben, who spoke to me in the middle of the night, who calmed me down when I was shaking and in tears, or without the help of the counsellors at MyHIV.org.uk who helped me rebuild my confidence.
So today on Suicide Awareness Day take a moment to think of your friends, your colleagues, your family – is there anyone who’s feeling down? Someone who’s more anxious or withdrawn than normal? Why not give them a call, or arrange a coffee and ask how they’re doing. From personal experience I can tell you that there’s nothing more reassuring than hearing a friendly voice and seeing a familiar face when you’re at your lowest.
If you’re the one feeling low, why not take the initiative and call a friend up yourself, and if you really feel you can’t talk to your friends about what’s going on there are organisations out there that can help you. If it’s HIV related try the THT Direct helpline on 0808 802 1221, or if it’s more general the lovely people at Samaritans will always be there to listen on: 08457 90 90 90.
Make time for those around you this World Suicide Prevention Day.
Massive cuddles all round,
Good Monday Ladies and Jellyspoons,
This Saturday was August 4th, which is happens to be exactly one year since I was diagnosed HIV positive. I hadn’t even noticed until fairly late in the day – and after several wines I was in no fit state to be writing a blog post…
I can’t believe how quickly one year has flow by. To say it’s been a whirlwind is to put it mildly. In the last twelve months I’ve been diagnosed HIV positive, had two relationships, moved house, started this website & blog, become a writer for Attitude Magazine, spoken on national BBC Radio, been invited to speak at conferences/events, moved house, marched in pride parades, fund-raised for the THT WalkForLife, and most recently become had my viral load become “undetectable”.
There are lots of people I’d really like to than. I don’t want to try and list everyone because I’d hate to leave someone out and offend them, but here are a few stars:
- Garry at THT, who helps run MyHIV.org.uk who’s been amazing to chat to, to walk with at WalkForLife and invited to lots of other events etc.
- Matthew Todd at Attitude Magazine, a great editor who has put so much trust and faith in me and enabled me to reach many more people than I ever thought possible.
- My doctors and nurses at the HIV clinic in the New Queen Elizabeth Hospital Birmingham, for always having a smile on their faces and knowing exactly how to help.
- My friends, they’ve consistently been there for me throughout. Both my existing friends and the new ones I’ve made up and down the country. There is no such thing as too many hugs.
- You. My readers. For following me on Twitter, for reading my ramblings on here and in Attitude Magazine, for commenting, emailing and letting me know I’m not alone, or that my words have helped. You make it all worthwhile. Thank you.
I know it’s an odd anniversary to celebrate, celebrate is the wrong word really – acknowledge is probably more appropriate, but I think it’s an important one. So that was year one, here’s to year two and many many more. Now if you’ll excuse me I have to go google Tom Daley…
Lots of love,
If you cast your minds back two months you’ll remember I was busy pleading, begging, nagging and dancing for you guys to sponsor me on the Terrence Higgins Trust Walk For Life.
I had such a fun day, meeting lots of lovely new people, taking a tour of London on foot and getting some (probably much needed) exercise. Thanks to you guys we raised an AMAZING £2,237 for the Terrence Higgins Trust Hardship Fund.
The total for the day, from everyone who took part and donated comes to an ASTONISHING £85,875.
The Terrence Higgins Trust Hardship fund provides much needed emergency grants to people living with HIV in crisis. The grants enable them to buy essential items “such as food, clothing, urgent utilities (e.g. gas card, electric card, telephone card or water card), bedding, towels and travel to either welfare or clinical appointments.” (quote from THT website).
It’s difficult enough coping with HIV sometimes, let alone trying to cope with it when you realise you can’t pay for your electricity or for anything to eat. It’s those sorts of times we’re lucky to have charities like the THT to step in.
If you didn’t get a chance to sponsor me on the Walk For Life, but you’d still like to donate to the THT please do using this link: http://www.tht.org.uk/our-charity/Donate
Many many thanks,