What’s your project called?
Waverley Care Children and Families Project

 
Who is your project/group aimed at?
It’s aimed at children, young people and their families who are living with, or affected by, HIV or Hepatitis C in Edinburgh and Lothian.

 
What good does your project/group aim to do?
We aim to support families, emotionally and practically, by offering a wide range of services that are flexible to their changing needs.

Over the years we’ve helped many young people and their parents come to terms with the loss of a family member. We’ve supported parents in disclosing their own HIV or Hep C status to their children. We’ve also helped young people deal with the stigma that surrounds HIV and Hep C by providing a safe space to talk and to meet other young people in the same situation.

 
How does it achieve this?
The Children and Families Project has a very wide scope and there are many different parts of the project which benefit not just the children but the whole family.

Our support groups are an integral part of the service. We run two groups a week, one for young people who are aware of HIV or Hep C in their family, and one for children who may not know their parents’ or their own HIV or Hep C status yet.

At the beginning of each term we ask the young people in our project what they would like to gain from the groups in the coming weeks. We then run a wide range of age-appropriate workshops on topics such as relationships, sexual health, confidence building, staying safe on the internet and how to tackle bullying at school.

Many of the children attend other group activities in their communities but find that, because of stigma and discrimination, they can’t freely talk to their friends in those groups. Our support groups provide a safe and confidential environment for children as young as 4 to meet and gain support from one another. They also allow young people to build a relationship of trust with our staff who can then support them to talk about HIV or Hep C when they want to.

Over the 20 years that we’ve been running this project we’ve found that arts activities create a relaxed atmosphere, making it easier for children to talk to each other about things that are affecting them. Many of the children and young people we work with are lacking in confidence and self-esteem. Through the use of the arts such as painting, clay modelling, drama and dance, they can discover their potential in a very non-threatening way.

Below you’ll see an example of some artwork the young people produced reflecting their feelings and experiences of living with HIV. The exhibition was called Secrets.
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What makes your project unique?
This is the only project of its kind in Scotland and it’s been here for the last 20 years. This means that the children in some of our early groups are now grown up and have children of their own.

I’ve worked in the project since it first began, as have some of our volunteers and that consistency means that many of our early children still stay in touch with us now that they are adults. We’ve been there for them while they were growing up and, for some of them, we are the link to the parents they lost early in life through HIV. So, they stay in touch and share what’s happening in their lives to keep that connection to their parents alive.

This project makes a huge difference to the lives of families. It often helps them stay together as a family and learn to communicate better with each other.

 
Give us an example of the difference it makes?
In December 2007 a family of seven children lost their mother to an HIV related illness.  The children who had previously lost their father were now being cared for by a family member who they had not been in regular contact with in recent years.

As well as supporting the family around practical issues such as arranging the funeral and financial help, we were able to consult with the children and ask them what they would like to do to remember their parents.

The children wanted to make a quilt in memory of their mum and dad with each child making a separate panel. We secured funding to employ an arts textile worker who worked with the family to produce the quilt.

Through this therapeutic activity the family were able to talk openly and express how they felt individually and as a family about the death of their mum and dad. The children, aged between 4 and 21, have all been supported by the Children and Families Project, and continue to use the service.

 
How does it make you feel when someone’s life changes because of your project?
Sometimes you see a child walk in on their first visit with the world on their shoulders and then, eventually, you begin to see them blossom. It’s fantastic to be a part of these young people’s lives and to see them grow into adulthood.  It’s great that so many stay in touch and I love to catch up for a coffee and a blether and find out what’s happening with them.

 
Why should we care?
Children are our future and they need to be nurtured so that they can reach their full potential.  Giving children a positive role model, and the value and recognition they deserve, can make a huge difference to their lives and have a positive effect right through to adulthood.

 
What would you like to see this project achieve in the next 2 years?
I’d like to see this work expand to the West. There are a lot of families in Glasgow that could really benefit from the breadth of support we provide in Edinburgh.

 
If I were to give you £500k to spend on this project what would you do?
I had a think about this and have to admit that I got a bit carried away so I might be needing a wee bit more than £500k!!

I’d like to have a purpose-built Children and Families Centre, with a mini-bus and driver. I’d also love to have a cottage in the Highlands for families to go for breaks to. I see the benefits our residential breaks have on children who live in families that don’t have finances to take holidays, children who’ve never left the city. It would be great to have somewhere that family groups could go.

There are over 1070 members and supporters in Rainbow. If all of us contributed one day’s work to a charity we would give 7490 hours, which is 312 days, or 44 weeks, or 10 months! Just imagine what we could do with that time and what a difference it would make.

We do in fact get that time from Lloyds Banking Group to give to the charity of our choice, under the Day to Make a Difference scheme. And up until last year, I hadn’t. No real reason why, I couldn’t claim ignorance, I just couldn’t quite figure out what to do with it.

Then in December I raised some money at a World AIDS Day event for Waverley Care, at the instigation and inspiration of Rainbow member and 2011 Making a Difference award winner Mark McIver.

I didn’t want it to just end there so the next day I was back in the office, I asked my manager if I could use my Day to Make a Difference for Waverley Care on a date just over a week away. My manager very kindly didn’t hold me to the four weeks’ notice you’re supposed to give and agreed that I could go.

I arrived at Waverley Care’s offices on the appointed date and was introduced to and greeted by their very enthusiastic team. There wasn’t much time to waste and I immediately set to work composing thank-you letters for the individuals who had graciously contributed to Waverley Care’s World AIDS Day drive.

This took me the morning, and it was truly touching to see the contributions people had made. However large or small the donations were, people had given money out of a desire to make the world a better place.

In the afternoon, I carried on with thank-you letters to businesses. Some of these also needed a special certificate they could display to show how much they had contributed. This means I was set loose on the laminating machine! I’d never used a laminator before, but I’m relieved to say all the certificates came out just about perfect.

Near the end of the day, the results of some fundraising appeared and had to be counted. I was very happy to do this job, and once again, it was practically tangible how much love and goodwill had come in with these donations.

By this time, the seven hours of donated time was well and truly up. A stack of letters all ready to be posted the next day and a pile of counted and sorted money showed off how much I’d accomplished that day.

I left Waverley Care’s offices feeling like I’d done my bit, made a difference, made the world that much of a better place, but more than that, like I’d been given back all the energy and passion I had given.

It was just one day, but it definitely made a difference to me.

How will you Make a Difference this year?

Photo credit: ginnerobot

Here is Deirdre’s latest update:

“Three weeks and three days here in beautiful Lilongwe. Time is flying already and I know the three months will go too fast before my eyes, hopefully I will have achieved the objectives of my work and my purpose here by the end of March as planned!

“I began training with the boys in Kachere last Wednesday afternoon.. they are good attentive students, so that makes life a whole lot more enjoyable! They get a break from the cramped courtyard that is shared by the 200 inmates, and there’s a coca cola at the end of class as a treat, so its not a bad deal! I have ten boys who Venture Trust identified as good peer mentor potential. They are split between the five cells, two in each. Their day starts at 6am and ends at 4pm, so they have a lot of time to burn in the cells before sleep. The Peer mentors will disseminate accurate information to the rest of the boys in their cells after lock up – that is the aim of the project. Upon release, we hope these boys have instilled what their respected peer has taught them about positive behaviour, and self protection from HIV and STIs.

“I am using resources from a variety of organisations that have been tried and tested in Sub Saharan African, resource poor settings. I am working with the HIV Coordinating Officer in the prison, Thom, in getting the training just right, and involving games, role plays and discussion groups. Thom is fantastic, and even though it is difficult for him to be seen to be working with the muzungus/white people (the other officers think he receives monetary favours) he ignores it and shows his passion to help the boys and their futures.

“I’m also working with the Regional Prison Coordinator, who has taken me on a trip to the adult prison, Maula Prison. We had a meeting with the Medical Officers there, where they showed me the clinic they use to treat the 2000 or so inmates. Conditions are poor but not horrific. The prisoners receive their anti-retroviral drugs (ARVs) and porridge with extra nutrients. 480 have HIV, of which 90 take ARVs (approx). What I found interesting, was they estimated a persons need to go on ARV’s by symptoms only.. no viral load or CD4 checks. This is to do with blood testing services being to diffficult to carry out on a regular basis.

“I have been invited to do a piece of work with the women in Maula. Today I will go and meet with them, and introduce myself, and get an idea of their knowledge around HIV and of their backgrounds. Based on that I will devise a number of training sessions, with the help of Peter the Regional Officer and his translations skills (I’m not yet fluent in Chichewa!!)

“On a final note about work, I have been to a meeting with the wonderful Theatre for a Change, and they are providing a day for the Kachere Officers and their spouses to encourage HIV testing and to do some prevention education through song and dance. The prison officers shy away from testing when it is provided to the boys, so this is an opportunity for them to do so away from workplace, and with confidentiality of results. All staff will hopefully take the opportunity..and there’s safety in numbers!!

“This will be on the 11th of Feb. Pictures to follow!

“Things have been volatile lately with the President being hugely unpopular, and there have been a couple of riots on the streets nearby the prison. Huge fuel shortages, no foreign exchange and depleting resources for a growing population is starting to show its cracks on locals. However, in general, people still have a smile on their face, and safety is no problem for me I feel. I stay in a security guarded compound also just FYI.

“On a easier, breezier note, I went to a reggae gig yesterday with a few friends and it was very very fun. Nice to see Malawians there having a good time, singing at the top of their voices, praise the lord etc etc!

“Weather was perfectly sunny 28 degrees and the local beer Kuche Kuche resting on ice- bliss!

“I will post again soon with more news, and hopefully a few photos of life here in Malawi.

Dee ”

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!!

Apple Pharmacy, Artisan Roast, Barony Bar, Blue Moon Cafe, Boombarbers, Broughton Deli, Broughton Street Book Shop, CC Blooms, Chequers Too, Concrete Wardrobe, Crollas, Crombies, Curiouser and Curiouser, Dragonfly, Essential Therapy, Frenchies, GHQ, Cafe Habana, Cafe Nom De Plume, Drama, Joey D, L’Escargot Bleu, Mathers, Narcissus, New Town Bar, Phoenix, Planet, Priscillas, Q Store, Real Foods, Regent Bar, Salon LA, Siam Thani, Smoke Stack, Something Fishy, The Street, The Village, ThriftChic Boutique, Villeneuve Wines, Vino Wines.

Added to all this we had our regular community gathering at St John’s Church in Edinburgh, our joint gathering in St Mary’s Cathedral, Glasgow with THT and Gay Men’s Health and our first ever World AIDS Day gathering in Inverness where more than 70 people joined us for choir music, poetry and live music by singer songwriter Emma Mitchell.

This year also saw an evening of music and reflection by Firrhill High School and Braidburn School hosted by Colinton Church. We had a bucket shake at Edinburgh Gay Men’s Chorus winter concert, Mistletoe and Musicals which raised a cracking £400.

With support from the team at the Edinburgh Playhouse the cast and crew of We Will Rock You have been shaking buckets for us and raised a fantastic total of £8,323.58!

Last but not least some of the students of the Royal High School have been out and about around town spreading the festive spirit with some carol singing while collecting donations for Waverley Care.

We’re bowled over by the amount of support we’ve seen around World AIDS Day this year and would like to say a massive thank you and Merry Christmas and Happy New Year to all of those who have given their time, enthusiasm and support to help those living in Scotland with HIV.

Photo credit: Colin Hattersley