The transition period is a difficult time. Young people have enough going on in their lives, so to be poorly and/or disabled just adds another dimension. Then when you factor in the change from children’s to adult’s services, it’s a huge ordeal for them.
Whether they’ve been disabled or poorly from birth, or conditions have presented themselves later on in childhood or into the teenage years, a good transition and all agencies (and different departments within these agencies) working together is vital.
The individual needs to be at the centre of this, their views, needs, goals and dreams forming the basis of their care. The Special Educational Needs and Disabilitites (SEND) reforms and the introduction of (Educational Health and Care) EHC plans aim to improve multi-agency communication and improve the experience for young people – including during the transition period.
‘My transition was not the best’
My transition was not the best. It was hard and frightening going from being on a children’s ward with my mum there all the time making decisions for me (and a paediatrician who would not talk to me or take into account what I had to say) to being on an adult ward with five dementia patients, mum only allowed in for visiting time.
Suddenly I was having to make my decisions by myself for the first time in my life, and life-changing decisions at that; it could have been better.
I went through a host of big changes around that time (between the ages of sixteen and eighteen), getting a whole new team of doctors – adult doctors, transitioning over to adults services, starting college, fundraising for the electric wheelchair, my health deteriorating rapidly, multiple hospital stays, my weight dropping to under seven stone and being started on TPN, being forced to give up college due to my health and then having my Ileostomy formed….it was a hectic time.
Suddenly my care came together, education, the NHS and Social Services all working together to achieve the lifestyle that I wanted and aiming for the goals I had set myself. Yes I was still bed bound for the majority of the time, yes I was still deteriorating – and quite rapidly at that – and yes I had to give up college but life was on the up.
The SEND reforms
This is the aim of the SEND reforms and EHC plans – bringing all the services together to work as part of a team and having the needs, goals and wishes of the children and young people at the centre of their care.
Look at my life now: it’s not perfect, I’m very poorly and deteriorating and not in education at all but I am making a difference by writing and speaking and giving back to the services that have supported me. Things I have said and done are making an impact on the world (well, the UK).
My doctors of various specialities, hospice nurses and carers, district nurses, continuing health professionals, personal health budget, wheelchair services, the voluntary/charitable sector and all others involved in my life are working together, all with my quality of life, goals and wishes as their focus.
It’s taken seven long years of being poorly to reach this point, and my aim is to make it right for everyone.
I am achieving the things I want to and am supported well in doing this. My experience over the last two years is how everyone’s care should be. Working together and having the individuals needs, wants and desires at the centre is how the best outcomes will be achieved. It’s not just about education, health and care, it’s about quality of life, achieving your goals and being supported to live the life you want to live.
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