Chair: Henry Young

Meeting Secretary: Ella Bearpark

Apologies from those who cannot attend this week: Ben, Stevie, Ashleigh, and Lily.

What was discussed? 

We had a short recap of what was discussed at the last meeting.

Patient Support and outreach lead – Sam Williams, spoke about how the AAT supports patients:

  • Thanks to youth board for giving insight, which has been very useful
  • Sam is head of the support and outreach team – community outreach and advocacy lead – introduced colleges (Kim, outreach coordinator in wales and Fiona – outreach coordinator in Scotland).
  • All members of this team have some sort of lived experience – Sam was diagnosed at 3 and then had ATG, had to have a transplant at 21. Kim also had aplastic anaemia and Fiona’s son Sandy was diagnosed with aplastic anaemia and treated with ATG as well. The team having some lived experience is something that the community find really useful
  • In the last 3-4 months the AAT supported 116 people on 176 occasions!

  • Sam mentioned the helpline as something people who have just been diagnosed can reach out to – and also they support people with any issue they encounter when having aplastic anaemia.
  • We have partnered with Maggie Centres – centres are all across country and they can provide psychological help, benefits even makeup lessons etc.

  • Sam spends a couple hours a week talking to people on the phone
  • Leslie does Wellbeing Wednesday every week (leading psychologist at Maggie's)
  • Projects where they have identified people in the community need but they don’t have them yet – come from Facebook or emails.
  • Watch and wait – for people having blood tests etc – unique needs and so extra private fb group for them.
  • Leena spent over 2 years developing the Marrowkidz programmes.
  • Impact – finding out how useful resources are to people they are targeted at.

Discussing things we would like to see

  • Making information about AAT easier for those who have just been diagnosed to find
  • 78% of people out of 300 weren’t told about AAT – targeted intervention
  • Reaching key treatment centres where people get transplants and haematology departments with information about The AAT, we don’t want people to feel isolated

Christmas party:

The youth board are going to get an online night out! Through Buck Buck games, which is being funded by the AAT through the MarrowKidz budget. 

How charity budgets work

Th Youth Board and the AAT had a chat about how charity budgets work and how things are funded. Some key points which Ella noted from the discussion were:

  • We discussed the difference between the Marrowkidz and general AAT budget – Marrowkidz is funded by the National Lottery Community Fund to achieve certain aims, like engaging and supporting young people. 
  • Writing a National Lottery bid application can take up to 12 months!
  • This is how funding a project works:
    • 1. We identify a need (usually Sam or someone from outreach team from their discussions with people affected by AA)
    • 2. We come up with an idea of how to fix that problem – eg it could be a new service  or leaflet
    • 3. Bridget packages this up and goes to the funder
    • 4. We find the right fund giver who aligns with the priorities  and pitch the idea
    • 5. If we're successful - we run the programme
    • Writing a National Lottery bid application can take up to 12 months!
  • Writing a National Lottery bid application can take up to 12 months!
  • Lots of stuff also just happens because people do it and are good willed – for example when clinicians volunteer to give webinars etc.
  • As a charity, The AAT need to have plans for cool things to do if lots of money suddenly comes in
  • Money at The AAT is well spent and community led.

Update about Tough Mudder

Hannah has booked it and Ben's team are all booked in now!

Supporting people at Christmas

There was a meeting about well-being events being run over Christmas – using some funding to reach out to people who are particularly isolated.

  • Community online events like a film night and gin drinking night will be run for free
  • For people who are more isolated and can’t attend these: we will run befriending phone calls. Some members of the Youth Board offered to make some of these phone calls

Callum spoke about what it was like to still be in hospital on Christmas Eve and other members also shared their experiences of this. The Youth Board suggested reaching out to those in hospital over Christmas. 

MarrowKidz end of programme report

Leena thanked the Youth Board for their input into the MarrowKidz end of Programme report. She reported on some of the feedback she had received from the National Lottery, our contact there said:

  • He had never worked with a programme that has attracted global interest – it was great to read about how MarrowKidz is helping charities in Germany + Australia to improve their information.
  • He said that youth board was super, a great addition that is what funders are looking for – allowing young people to influence decisions made in the charity.

Callum working on a new booklet with Maggie's professionals and with Leena – this is going out tomorrow!

Next meeting

Chair: Callum Tempest

Secretary: Sophie Byrom

7th December 6:30pm