Spotlight on….Children & Families Project

Over the next month we’re going to be putting the spotlight on our Children & Families Project and giving you a little insight into some of the amazing work done by the project. We’ve started by talking to Children & Families worker Lynne about a group she runs working with young people living with HIV:

What’s your group called?
The group is called PozYouth and is part of the Children & Families Project.

Who is your group aimed at?
The group is aimed at young people of any age who are aware of their HIV diagnosis.

We also work with parents who are at the stage of telling their child that they are HIV positive. This means that we can build a strong relationship of trust with both the parents and the child to enable us to support the child going forward.

Within another of our Children & Families groups we support children who are not yet aware of their status.

What good does your project/group aim to do?
The group aims to bring together the small number of young people spread across Scotland who are living with HIV and are aware of their diagnosis. (Currently 50). HIV is a highly stigmatised long-term condition and, because of the small number of young people infected, it can be very isolating for them. Many of them have never met another young person living with HIV, they may have lost one or both of their parents to HIV or they may have moved from outside the UK and are struggling to fit in.

Sometimes having a parent who is also living with HIV makes it harder for the young person to talk about it, they don’t want to cause added worry. By giving them the chance to speak to others their own age who are dealing with the same issues, we aim to help them realise that they are living with a long term, chronic condition but that it’s not something they should have to feel ashamed about.

Through one-to-one support from staff and the chance to gain support and inspiration from peers, the group aims to help young people live their lives to their full potential.

How does it achieve this?
The project has to be extremely flexible both with time and geographically. Group members meet up once a month and staff offer one-to-one support to members when needed.

The group also has regular residential meetings which are crucial as they give young people time away from home, beneficial for both them and their family. Residentials take the form of a long weekend or even a week away and allow the young people to take part in organised activities and spend time with other young people. Residentials play an important part in building trust within the group, allowing them to share their stories and build confidence. It gives the younger kids a chance to spend time with the older children in the group and opens their eyes to what they can achieve.

Most of the young people in the PozYouth group have been with the project since it began and continue to make time to come to meetings well into their teenage years.

Why should we care?
These are young people like any other. They have the same hopes, dreams and aspirations as any other young person. They have the same fears, worries and concerns and they are also living with a long-term health condition that is highly stigmatised by society.

To manage their condition they may have to take as many as 13 pills twice a day every day and they can’t talk to their friends about it.

It would be so easy for them to give up but why shouldn’t they have the same chances and opportunities that any child deserves?

The PozYouth group helps these young people come to terms with their HIV and gives them the self-confidence and self-respect to take control of their lives and just live it to the full, as they should.

What makes your project unique?
This is the only project that provides this sort of support in Scotland.

It’s the only way that young people living with HIV can come together and meet others their own age in a caring and safe environment.

As well as being socially and geographically isolated, many of the young people are financially isolated. They may not always get to take part in some of the things their friends are doing so the group outings are a real lifeline for them.

Give us an example of the difference it makes?
A couple of years ago a young person joined the group. She’d just found out that she and her mum were HIV positive. She wasn’t dealing with this well at all and was refusing to take her medication which was really affecting her health. Her doctors were forced to serve a protection order and send a nurse to the house twice daily to witness her taking her medication. Both the child and her mother were struggling with this. With a residential coming up we were sure it would help her to come away with the group but it was difficult persuading her doctors. In the end she was allowed to come.

It was hard work but the residential gave her the opportunity to speak to other young people and to see them taking their medication as a normal occurrence. This was definitely the first step for her and, with continued attendance at the group, she was completely adhering to her medication 6 months later.

Now, just over a year after that first residential, she has a certificate from the hospital to say that the level of HIV in her blood is undetectable. Her general health is vastly improved. She’s taken responsibility for herself and is aiming to eat properly and look after herself so that she can grow stronger and not have to take as many tablets every day.

How does it make you feel when someone’s life changes because of your project?
It’s hard to put into words. It’s a huge part of my life and really gives me perspective. I feel so lucky to be part of these young people’s lives and part of this project.

In fact someone recently asked me what my ideal job would be and I said, “I’m in it!”

To be able to watch as everything falls into place for one of the young people – I’m like Hannibal from the A-team, I love it when a plan comes together!

What would you like to see this project achieve in the next 2 years?
We’re currently in the process of applying for funding to expand some of our existing Edinburgh based work to Glasgow and I’m looking forward to being able to do more work over there with young people who are ‘affected’ by HIV as well as those that are themselves infected.

I’m also looking forward to continuing to support the teenagers I work with now into young adulthood and continuing what I’m doing as its pretty cool!

For the last 2 years I’ve been part of the UK Family Project and we’ve produced some brilliant resources to help professionals and parents across the UK talk to young people about HIV. These resources have just been released and I’m really excited to see how they’ll be used by people and see the difference they could make to young people throughout the UK.

If I were to give you £500k to spend on this project what would you do?
I’d spend it on expanding my work in Glasgow and then with any change I’d take the PozYouth group on a mammoth residential to America so they could see the Grand Canyon, it’d blow their minds!!