Harrison mentions in the video that he can’t work due to how his symptoms of 22q DS affect him. Even though he’s in receipt of benefit payments, I’m keen to ensure that he can still experience a sense of pride and achievement by contributing to society in some way.
So, how has he kept busy over the past 600 days? He’s taken advantage of several engagement opportunities offered by The Royal Brompton, Guy’s and St Thomas’ NHS Foundation Trust and of course, The Genie’s Wish.
Here’s a synopsis of the projects Harrison is working on. Just click on the headings to read more about each project:
A whole new building is being built to join onto the existing hospital to cater for the vast increase in patients since the original building opened in 2005. Harrison has been involved in giving feedback on the various proposals for the interior and exterior of the new building and just tonight, participated in another Zoom meeting to review the progress to date.
Harrison isn’t keen on art but this opportunity was more than just participating in virtual workshops to design artwork for the paediatric waiting room areas. He was also part of the interview panel to select an artist from three candidates to lead the art project with the young people. This was a brilliant opportunity for him to practice some key business skills.
This project ended on Saturday. The Playing ON theatre team worked with the children and young people of the hospital to encourage them to share various aspects of their experiences as a patient in creative ways. The showcase event that parents were invited to attend presented video clips of games, poems, puppet shows, role play role reversal, songs, improvisation, drawings, diagrams and interviews that had been worked on over several weeks. It was an extremely effective and memorable event and great to see information collected in a creative way.
This online programme has four steps with three main aims:
- To tell people what personalised care is and how people in England can benefit
- To develop new Peer Leaders who can support the development of personalised care
- To develop Peer Leader Facilitators to provide leadership and support to Peer Leaders
It’s aimed at people with lived experience who are committed to working collaboratively with the NHS to shape and influence how personalised care is delivered. Harrison has already completed Steps One and Two and is now working on Step Three. Next week is the start of four 6 hour face to face (over Microsoft Teams) workshops. It’s an extremely comprehensive programme but is already giving him an excellent insight into how the NHS works. The knowledge gained on this programme will definitely help him with his current and any future opportunities.
The aim of the Apollo programme is to transform the way patient care is delivered. The programme will deliver an electronic health record system as well as a number of supportive technologies, replacing paper documentation, joining up patient records and making these easily accessible for clinicians at the point of care.
It’s not just about new technology though but also changing the way in which the teams work and care for their patients every day. Harrison is signing up to specific webinars where he can choose to be working on different aspects of the programme in a small group. The project is due to be delivered in 2023 so this is quite a long term commitment.
The Genie’s Wish is a UK registered charity whose mission is to enhance the lives of people aged 0-40 years, living in England and Wales, who are suffering from a critical or terminal illness or living with a life-limiting medical condition. Their purpose is to bring respite and joy into the lives of our beneficiaries and their families, by providing them with a life-changing wish, experience, or ongoing opportunity. They also provide wish experiences, bespoke events, and activities for young carers, aged 5-16, in recognition of the bravery, kindness, and selflessness they display on a daily basis by caring for a family member.
We’ve known the co-founders, Martin and Katie for several years and were very honoured when they approached us to be part of their charity. It’s still very early days but as you can see, Harrison has already started work on his role as an ambassador.
Despite the many disadvantages Harrison has in life, he’s certainly making the most of things!
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