My name is Leah Booth and I am a Young Avenger for Together for Short Lives. I have Spinal Muscular Atrophy Type 2 which mean I need 24/7 care and support. I wanted to write to you regarding the transitions, from children’s to adult services, for young people with complex needs in the UK. Your March Budget is not far away – please take a moment to think about the 49,000 – people like me.
Speaking up for the 49,000
I recently attended an event for Together for Short Lives at Westminster to highlight the difficulties faces by the 49,000 children and young people with complex need in the UK. It was a poignant occasion and a great leap forward in amplifying the voices of the 49,000 as Stuart Andrew MP launched the very first All-Party Parliamentary Group for children who need palliative care. The event filled me with hope, hope that there are indeed Members of Parliament who are listening and want to help make the transition from children’s to adult services easier.
Whilst I was there, someone asked me the question “If you were Prime Minister for the day how would you make things better?” and although I don’t believe I’m going to be Prime Minister anytime soon, I thought about what I would do: Simple, easy changes that I feel would have a deep impact and so I thought I would share them with you:
Getting young people with complex need involved in politics and policy making
I believe in order to make effective, long term change, that will benefit people with complex needs, you need to involve us in the process. The people who are making the solutions don’t know the problems. So I urge you to extend invites to the people who use these policies and services every day to come to Parliament, listen to proceedings and have open discussions with the Members of Parliament. I think it would benefit both sides to understand what will and won’t work, why and how policies are made and how real solutions can be established.
Open communication between departments and services
One of the most frustrating things about the transition process is having to repeat yourself over and over for different services, doctors, social workers, occupational therapists etc. I would like to see a system which allows all departments across the health and social care system to be able to access one universal file in order for them to have, not only a clearer understanding of my needs, but also to open channels of communication between departments for assessments, appointments etc. leaving precious time for the person with complex needs to enjoy regular life.
Effectively disseminating information to local levels
When I was going through my transition, from children’s services to adult services, it was a constant battle to source advice and support but this wouldn’t have been the case if simple information, which was released from central government, had been properly distributed to Local Authorities and relevant organisations effectively. There are several great policies/ services already in place to support people like myself who have complex needs but that information is not making it to local levels. This is something that can be easily resolved.
I won’t pretend to be an expert in complex needs nor will I pretend to be an expert in politics. But I write to you today as a person who knows what it is like to go through the transitions period and who knows that all people with complex needs want is to live a life that is simply like everyone else’s, to live a relaxed, fulfilled and happy life, no matter how long that life may be.
Thank you for being the person who listened.
Leah Booth is a Young Avenger for UK children’s palliative care charity Together for Short Lives
Find out more about Together for Short Lives Westminster Event and the launch of the All-Party Parliamentary Group for children who need palliative care.
Leah Booth’s Blog – I should have been a Mermaid