Posted: 03 October 2012

Young carers affected by HIV share stories, help launch resource

Most people don’t realise that there are between 15,000 and 20,000 young carers in families in the UK affected by HIV. Over the past year I have had the chance to lead on the Change for Families project at our Include programme.

Funded by the Elton John Aids Foundation, the project aims to improve the support and services for children and young people caring for family members affected by HIV across the UK.

The culmination of the project is an online resource hub built in consultation with young carers affected by HIV and professionals. The hub is open to all practitioners who may come into contact with young carers in families affected by HIV.

(While the term 'affected' can mean 'uninfected or untested', some children and young people with HIV are affected by having caring responsibilities for family members who may be living with HIV themselves.)

Sharing tools with practitioners

We officially launched the resource at events in York, Sheffield, Manchester and London. Across the country professionals fed back that the website has a good flow of information, is easily read and incorporates the views of young people as well as professionals.

We also asked professional to look at where we could develop the resource and they highlight the potential for a page which is specifically for young people.

Young carers address MPs 

At all events we received great responses from attendees. I was especially proud of our final event, which featured 20 young carers at the House of Commons. 

The parliamentary event was chaired by Pamela Nash MP and chair of the all-party parliamentary group for HIV and Aids. Nash pledged to support young carers affected by HIV by writing to the prime minister to highlight the issues faced by young carers affected by HIV and ask what he will do to help.

Our Chief Executive, Matthew Reed also spoke eloquently about the importance of the young people’s voices being heard at the heart of Parliament.

The young carers shared their experiences and key messages to a room packed with MPs, commissioners and policy makers. The young people read a speech that they had written and showed a film, which they had created as part of a previous event

'Make a pledge to continue to support young carers affected by HIV’

Dame Philippa Russell, chair of the standing commission of carers sent a message in support of the young people:

'I hope that everyone here will make a pledge to continue to support young carers affected by HIV and they will think through what that pledge might be. My own pledge will be to ensure that you (and other young carers like you) are high on the agenda of my own standing commission on carers. We also have a role in educating professionals and reminding them of your unique and important contributions.'

Call to action

All of the young people we have worked with nationally over three years have fed into three key asks of the government:

  • Specialist HIV and young carers training sessions for all teachers, education professionals, social care and health professionals.
  • Lessons in schools about HIV and the impact on family members and young carers.
  • Raise awareness of young carers affected by HIV all the time not just on World Aids Day 

I will be following up the pledges and working with our team to look at how we can take this work forward. In the meantime, if you work with or know young carers affected by HIV, please take a look at our new toolkit.

By Chantelle Lindo, Development Worker at our Include programme 

Read more and take action

By Chantelle Lindo - Programme staff

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