Thread by @camraredisease

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Through 2021 young people living with #RareDiseases share their experience of transitioning from paediatric to adult care in this new report created by Costello Medical in collaboration with @camraredisease & @RareBeacon

Please download & share lnkd.in/e4zc5WZ6

Transition has been described as “the purposeful and planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult orientated healthcare systems”.

But were their experiences planned & purposeful?

#Transition

In the UK Rare Diseases Framework published Jan ‘21, it’s recognised that we must address “the challenges in ensuring continuity of care across paediatric and adult services” to reduce the burden of care on patients and their families.

@DHSCgovuk @GeneticAll_UK #CONCORDstudy

Katie said “Despite attempting to initiate conversations about transition as a teenager, my transfer into adult care came about abruptly, when I was admitted to the A&E department as a young adult. This was shortly after my primary paediatric doctor retired.”

Katie, founder of @cardsforbravery admitted “I still don’t know who I’m really supposed to go to for what issue.”

In contrast, I had a very positive experience of age-appropriate care at @uclh where there is a dedicated adolescent ward for patients up to 25 years old

We also heard of great practice at @ColchesterNHS where they adopt the #ReadySteadyGo transitions programme & have a #YouthWorker who supports holistically, helping them share experiences & plan ahead in an age appropriate engaging way

We learned that The Teenage and Young Adult (TYA) ward at Addenbrooke’s @CUH_NHS offers space
for patients aged 14 to 24 for treatment of #cancer. YP helped with its design to creating a less daunting stepping-stone in transition from paediatric to adult wards

@CRUKCamPaeds

@TheWoollard advocate for YP living with #haemophilia said “Many stakeholders hold an ethical and moral responsibility for young people; this goes for charities as well as clinicians. Should charities be playing a larger role?”

The report outlines clear ways they can help

This report has a wealth of solutions. Please take time to read, digest, share & implement so we can do better by our #CYP

Report here lnkd.in/e4zc5WZ6

@BPSUtweet #RareDisease

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