New specialist service for patients with rare neurological conditions
Evelina London Children’s Hospital, part of Guy’s and St Thomas’ NHS Foundation Trust, will host a specialist service for patients with rare genetic conditions so they can be fast-tracked to earlier diagnosis and specialist care.
NHS England have announced there will be three paediatric centres across the UK, one of which is at Evelina London Children’s Hospital – delivered with Great Ormond Street Hospital.
Leading the southern hub, Evelina London will provide support for families across the south of England. Children and young people with genetic diseases that affect their brain and spinal cord, known as Inherited White Matter Disorders (IWMDs), will now have rapid access to expert teams, increased virtual support to reduce unnecessary travel to distant face-to-face appointments, and improved local support from nearby clinics providing local testing and symptom management.
IWMDs can cause symptoms such as impaired mobility, vision, speech and hearing, inability to swallow and loss of cognitive skills.
Dr Rahul Singh, paediatric and neonatal neurologist at Evelina London Children’s Hospital, said: “Our Inherited White Matter Disorders service will help children and young people across London, and south east and south west England, to have a more specific diagnosis of their condition and specialist treatment. The virtual clinic review will provide a ‘one-stop-shop’ for families and save them time in travelling long distances for face-to-face appointments. We’re also pleased to be sharing our expert advice to keep patients’ care close to home.”
Evelina London will also host a national IWMD registry service, led by Dr Rahul Singh.
Dr Rahul Singh continued: “The national IWMD registry service is unique, it’s available for patients of all ages, and we aim to identify all patients across the UK with suspected or confirmed IWMD. This registry will help to provide more data and analysis which will improve clinicians’ understanding of IWMDs, and offer patients better access to clinical trials and new treatments.”
Read the full story on our Evelina London website.