Young with Freedom to Be

posted: 25/01/2011

If you enjoy the joy of others, read some of the glowing comments from young people with HIV who attended the summer camp for HIV positive teenagers in August.
‘It was the best time of my life, I felt free’. We, and Barnardo’s Gregory’s Place, were keen to see as many young people from NW England enjoy and benefit from this camp as possible.

We did well - a quarter of the young people at the camp travelled from NW England – very many more than from any other region, apart from London.

Camp Freedom2 Be

Freedom to Be (F2B) was the first summer camp for HIV+ teenagers in the UK. It was in mid August, using a school in SE England, for 79 young people aged 13-17.
 

The camp was a mix of

• workshops about living with HIV,
• outdoor and leadership activities designed to develop confidence and overcome fears, and
• social and leisure activities.
   

Take-Away Support

Friendships with others young people with HIV were much encouraged so people would go home with a HIV support network of other teenagers after the camp.
 

We expected big benefits from being able to talk openly with other positive youth about shared experiences of living with HIV. We wanted self esteem to blossom and lead to better self-care, including better treatment taking, better school results, and clearer hopes and plans for the future.
 

Overwhelmingly positive camp
Young people were overwhelmingly positive about the camp and its impact on their lives.  The teenagers at camp were happy to have gained new friends, to have spent time in a welcoming, open and understanding atmosphere, and to have many of their questions about living with HIV answered.
 

At least three quarters attending reported real benefits and life changes. Two-thirds of participants now discuss HIV with family and friends more since being at camp. The overwhelming majority have stayed in contact with other young people they met at camp.
 

A life-changing milestone

• The best days of my life time. (16 year old)
• An amazing time getting to know that there is a lot of people who have HIV not only me, and making friends who have the same illness as me was more fun than anything else. (14 year old)
   

In our own words

• That I can be myself without having to worry what’s wrong. (14 year old)
• I’m more capable of doing something than I thought I was. (16 year old)
• That I don’t have to hide from anyone. (16 year old)
• Yes, I have learned more about my rights which I didn’t know. (17 year old)
• Very good because I got to make new friends and meet new people and adults that have HIV. (17 year old)
• Because when I came back home I felt good that I did because at the camp it was like everyone was just the same as me and basically I had to accept that I have HIV. It actually lifted me up instead of me stay[ing] scared of what was going to happen through my future. (14 year old)
• Fun, I learned things I didn’t know. (13 year old)

The overwhelming impression was that even when people complained about the bedtimes, rules and school buildings, the camp was such a positive and affirming experience.

• ‘I got to meet people with the same thing as me, because where I live it just felt like it was just me’
• ‘I learned that I can be confident and I can do a lot of things I didn’t know I could do

I learnt ....

• Different jobs you can do or not do. (14 year old)
• Your rights during sex. (14 year old)
• How not to pass the virus. (17 year old)
• That I can have children with[out] affecting them. (16 year old)
• Not to worry what others think. (13 year old)
• I feel more positive about my future. (15 year old)
• You can still succeed in life no matter what you have. (16 year old)
• How to tell people – that helped me tell my boyfriend. (15 year old)

Summer Camp 2011?

There are plans (if funding can be raised) for another summer camp this year. CHIVA Summer Camp 2011
 

Evaluation report F2B from Sigma Research

Professionals for HIV Teens to Adults

posted: 21/01/2011

Professionals in the North of England interested in supporting young people with HIV to make the change from childrens to adult services, are invited to regional meetings.

Growing numbers of HIV teens to adults

Many of the children now growing up with HIV are becoming adults and will need to switch to services for adults. Children's and adults' services staff need to think, plan and work together, for a smooth transition between children’s and adult HIV and other services.

Invitation to regional focus group

The Children and Young People HIV Network has arranged focus groups for professionals in the North of England, (and meetings for other regions) to make a start on developing age transition services locally.

The HIV Network invites all children's and adults' professionals (health sector, social care, and community sector) who are, or will, deliver services to 10 – 24 year old young people living with HIV.

This is part of a three-year project to improve the transition of young people living with HIV from children's to adults' services. The project aims to develop capacity by improving partnership working and enabling quality service development, both clinical and social care.

These focus groups will

• find out any current local arrangements for young people living with HIV making the transition from children's to adults' services
• explore the successes and challenges of transition, in different areas, with different numbers of young people, and identify needs
• provide a networking and discussion opportunity for professionals interested in better transitions.

Transitions won't wait

Despite the current upheavals in health, community and social care, young people’s needs for a better transition will not wait. Each area’s professionals need to become involved.

This networking and sharing opportunity will provide professionals with some useful resources on HIV and transition, lunch, and even travel expenses help for some.
 

Manchester, Sheffield, Newcastle, Birmingham

• For Greater Manchester, Merseyside, Cheshire and Lancashire – Manchester, 15 March, 14.00-16.30
• For North, West & South Yorkshire, East Riding, and Lincolnshire – Sheffield, 10 March, 13.30-16.00
• For Tyne and Wear, Co. Durham, Cumbria and Northumberland – Newcastle, 2 March, 10.00-12.30
• For West Midlands, and Leicestershire, Warwickshire, Worcestershire, Herefordshire, Shropshire, Staffordshire, Derbyshire and Nottinghamshire – Birmingham, 15 March, 12.00-14.30.

Join the group where you would have the most service links. No transition arrangements yet? All the better if you attend.

People working with affected families of HIV-positive adolescents are also welcome, although the focus will be on the transition needs of the HIV+ young people.

Book a place
Please email the Children and Young People HIV Network, telling them which one you would like to attend. All places must be booked in advance so they can book suitable accommodation and cater effectively for all. Live elsewhere? - email the Network for details of meetings in other regions

Time to Test for Under 25s

posted: 04/01/2011

All young people under-25 should be offered HIV tests as part of everyday healthcare when visiting hospital or seeing their GP, say sexual health charities.

New figures show 13,000 people under 25 in the UK have HIV. Leading sexual health charities, like BASSH and NAM, told the BBC they want routine HIV tests to be provided, no matter what the young person’s race, gender, sexuality or postcode.

Making HIV testing part of ordinary healthcare routines would mean more young people are diagnosed in good time. HIV treatments do not work well when people are diagnosed late, and late diagnosis is a big problem in North West England.
 

Aaron's story 

Currently only the people considered most at risk, like gay men, black Africans living in the UK or drug users who share injecting kit, are normally offered HIV tests. This ignores some people, like Aaron.
 

Aaron, 25, lives in Birmingham, is happily married with two kids and is HIV positive. He only found out after he started to feel run down in September 2009.
"I can always remember the day I got diagnosed - the ninth of the ninth '09. It started off thinking that I had swine flu and they gave me the Tamiflu tablets."
Aaron had a sore throat and a fever and was showing all the symptoms of HIV, but didn't know it. "It didn't actually come across the doctor's mind to put me in for an HIV test or anything else like that. It was only when I started getting a rash below that I was quite concerned and I didn't want my Mrs to find out."
 

Routine HIV testing of people under 25
If proposals for routine testing of under 25s go ahead, under-25s would be asked to take a HIV test during any GP visit or hospital treatment. Dr Steve Taylor is leading consultant at Birmingham's Heartlands HIV Service and he told the BBC: "One of the reasons that GPs and doctors don't often offer HIV tests is that we have a perception of what someone with HIV looks like. The average person on the street, like Aaron, just doesn't feature on the radar."
 

Aaron says he's thankful he was eventually offered a blood test. "The doctors put it off by giving me antibiotics, but I thought this isn't right. So I called NHS Direct and they actually referred me to get a routine blood test, which I'm happy I did otherwise I don't know where I'd be today." Being a heterosexual male with a wife and kids, doctors had previously missed the opportunity to test Aaron. "Back in the day I used to be a bit of a player and sleep with people without protection", he admits. Aaron is living a normal life and takes HIV treatments daily - he's just relieved he didn't infect his wife. "It was disturbing having to tell my wife that I have HIV. I was worried she'd think I was sleeping around. It's a miracle that she hasn't got it and I feel pleased that I haven't passed it on."
 

Pilot testing trials
In November 2009, several pilot HIV screening programmes were run as trials in Brighton (with its many gay men), Leicester, and in Lewisham (south-east London and with a large black African population). The Department of Health will now consider the Time to Test report from the Health Protection Agency on the results of these trials, and decide what to do. 

Time to Test recommendations to the government

• HIV testing in primary care and general medical admissions must be prioritised in areas with a high diagnosed HIV prevalence (i.e. more than 2 people in 1,000 15-59 year olds) and among most at-risk populations, in order to reduce late diagnoses and the proportion who are undiagnosed.
• Efforts are required to increase the uptake of HIV testing among people attending sexually transmitted infection (STI) clinics and to maintain high uptake of HIV testing among women attending for antenatal care.
• Community HIV testing services need to be appropriately targeted and established with strong community representation. To be successful these initiatives require long term commitment.
• Strong links between HIV specialist services and primary care, hospital and community projects are essential for immediate continuity of care for newly diagnosed patients. Particular attention should be paid to prompt referral of patients newly diagnosed in primary care and community services to minimise loss to follow-up.
• Economic evaluations, including cost-effectiveness studies, are needed to determine the best strategies to expand HIV testing in each of these settings.
• Concerted effort and ongoing resources (both human and financial) are needed to sustain successful projects beyond the research and pilot stages.
   

Time to Test report and recommendations (December 2010)

HIV and people under 25 in NW England

• By the end of 2009, there were 333 people under 25 diagnosed with HIV living in NW England
• Three quarters (248 out of 333) of the young people living in NW England got HIV sexually, as teenagers and young adults. Sex education around HIV is clearly not working for hundreds of young people. Almost all the other young people became HIV positive as a baby, from their mother 
• One in three of the 15 - 19 year olds got HIV through sex (most of those diagnosed between 15 and 19 were infected as babies - very few 15 - 19 year olds take HIV tests)
• Almost all the 213 young people between 20 and 24 years old got HIV sexually (only 9 got HIV in any other way)
• Around half the teens and young adults who got HIV sexually are bi and gay men, and the other half are heterosexual women and men (three quarters of the heterosexually infected people are young women)
• Most of the young gay and bi men with HIV are white, with around 5% having an ethnic minority background; most of the heterosexually infected young people have an ethnic minority background, with a minority who are white.
   

This analysis comes from figures in Tables 3.1 and 3.5 of the 2009 report on HIV in NW England. 

Halve It campaign
One in four people living with HIV in the UK is unaware they have the infection and therefore unable to access potentially life-saving treatment. Halve It is a new joint campaign aiming to halve, within five years, the proportion of people living with undiagnosed HIV infection and the proportion of people diagnosed late with HIV. The campaign is led by a coalition of HIV and healthcare experts, including MedFASH.
 

The Halve It position paper Early Testing Saves Lives calls on government nationally and locally to make HIV a public health priority. It was launched on World AIDS Day at the Time to Test for HIV multidisciplinary conference, by British HIV Association Chairman, Dr Ian Williams and MedFASH Chief Executive, Ruth Lowbury.

Early Testing Saves Lives    MedFash report for the national Halve It campaign

Time to test for HIV - videos and pdf files of all the presentations. Includes reports of the Brighton, Leicester and Lewisham HIV testing trials 
 

Source

Grub and Gossip Open Space

posted: 04/10/2010

This Tuesday's space is open to everyone with HIV. It is a Grub and Gossip open space as part of the celebrations in Manchester of the older people's Full of Life and Manchester Food and Drink Festivals.

This Grub and Gossip space is on Tuesday 5 October between 12.30pm – 2.30pm - the food will include traditional African tastes. 

• Crèche available for under 5s: please book
• Food provided and transport costs paid

African Space returns as normal on Tuesday 19 October.

More information: please email Siham
or ring her on 0161 274 4499
 

Wales Launches HIV Network

posted: 14/09/2010

The NHS in Wales has launched a new network for HIV that is designed to improve support and services across the country. It’s both for people living with HIV in Wales and for service providers, and offers a 'one-stop' site for all news, events, information, guidance and publications related to living with HIV in Wales. It includes a full Service Directory that aims to list all of the services available to HIV+ people in Wales and a section for professionals.
 

Positive Participation Forums

The network will also support Positive Participation Forums which will be held quarterly across Wales. These forums will provide an opportunity for people living with HIV to channel information, issues and concerns for consideration and response from those working in HIV at a national level. In return, attendees will also learn about the development and delivery of services, strategies and actions relating to HIV in Wales.
 

People Living with HIV in Wales

The section for people living with HIV is here 
 

The All Wales HIV Network - Cyswllt HIV Cymru Gyfan - website