Professionals you should see
Children and young people with PWS require multi-professional advice and oversight from infancy onwards. This should be provided by local services, and there are a number of specialist PWS clinics.
The current specialist Paediatric PWS clinics in the UK are:
- The Royal Alexandra Hospital, Brighton
- Birmingham Children’s Hospital, Birmingham
- Chelsea and Westminster Hospital, London
- The Royal London Hospital, London
- The Royal Stoke University Hospital, Stoke-on-Trent
- Queen Elizabeth University Hospital, Glasgow
- Royal Hospital for Sick Children, Edinburgh
You can be referred to these by speaking to your GP, and we can provide a letter of support should it be needed.
Professionals you should see once you have received a diagnosis are:
- Hospital Paediatrician—general overview and referral to other services
- Endocrine Paediatrician—advice on hormones and PWS
- Consultant Community Paediatrician—to oversee local services
- Paediatric dietitian—dietary advice
- Child Development team—general development and support
- Physiotherapist– for muscle tone and core strength
- Speech and language therapist
- Occupational therapist
- Social worker from Children with Disabilities team
We know this list looks overwhelming - you do not need to see all of these professionals all of the time. They should, in time, form a network of support around you to help you through your journey.
