Together for Short Lives is calling on Peers to amend to the Care Bill today (14 Oct) to ensure a generation of young people with life-limiting conditions do not have to face a cliff edge in their care and support.
Peers will debate amendments tabled by Lord Patel that, if agreed, would ensure a forgotten generation of young people with life-limiting conditions are able to live as full life as possible in to adulthood. As it stands, the new law fails to set out when local authorities should assess the future need of young people before they turn 18 years old – meaning that for thousands of young people with life-limiting conditions, plans for this important life-step may not be made in time. Badly planned transitions are currently leaving many of these young people “standing on the edge of a cliff, about to fall into a black hole” – facing a reduction in the support they receive and the range of services they can access.
Lord Patel’s amendments, supported by the Together for Short Lives Transition Taskforce, would ensure that children who need services at the age of 14 (and are likely to continue to need services as an adult) have a well planned transition of care initiated by their local authority. They would guarantee that a young person over the age of 16 years old would have a five year rolling transition plan.
Much of the focus on the Bill has been about reforming the way we pay for our care as our population gets old. However, at the other end of the spectrum there are a growing number of young people living longer with critical, incurable conditions who are being overlooked. More young people with a range of different conditions are living into adulthood than ever before thanks to medical advances. Current failures to plan for their transition to adult care mean that many young adults with life-limiting conditions die before they can realise their ambitions to live independently. The need to ensure timely and well planned transitions for these young people is now more pressing than ever beforeLord Patel
In his speech today Lord Patel will focus on the story of 20 year old Lucy Watts whose case clearly demonstrates why good transitions to adult care are essential. Lucy’s has Ehlers-Danlos Syndrome, a condition which means she has to be fed straight into her bloodstream via a tube. Lucy can only sit up for up to five hours every day – she uses a wheelchair, but has to spend the majority of her time in bed. Lucy’s mum, who also juggles a full time job, carries out the majority of her care – and all of Lucy’s day-to-day medical care. Lucy’s transition to adult services was excellent because there was timely and well-planned joint working between children’s and adult services. Lucy’s transition gave her control over decisions about her care for the first time – an essential factor for Lucy as she is not in control of many areas of her life.
Lucy herself has said;
“Transitioning from children’s to adults in the medical and social world is a huge step. You are moved into a world where you must make decisions about your life and your care – if you are able. The people involved in my care were brought in before I started the transition, so I had time to get used to them, which gave me the confidence to be open and honest. This is your life, so speak up and make your life, and your end of life, the way you want, and need, it to be.”
David Strudley, chair of the Together for Short Lives Transition Taskforce said;
“Turning 18 years old should be a time for celebration, especially for those young people who have not expected to reach adulthood. Instead for many families it is the cause of great anxiety, not knowing whether they will receive the vital support they rely on every day. Lucy’s story shows that a successful, well-planned transition to adult care is possible – Lord Patel’s amendments would make that a reality for all young people with life-limiting and life-threatening conditions.”