Our Services: What we do

Our team are experts in their fields and combine extensive experience in their specialist areas with both professional and lived experience of PWS.

All our support, advice and guidance services for families and people with PWS are free.

Please consider supporting our work with a donation to help us keep it that way.

The PWSA UK staff team, 11 people dressed in orange tops and smiling

Advocacy Services and Crisis Support

Helping people access the support they need and navigate the health, education, social care and justice systems:

Crisis support when residential or educational placements break down
Attending multidisciplinary meetings, tribunals
Writing letters of support for benefits, housing, health or social care support
Providing expert guidance to professionals supporting people with PWS in crisis situations
Reviewing EHCPs, care plans to ensure they provide adequate support for the person with PWS

We made the mistake of googling a lot & felt very overwhelmed & very distraught, however since speaking to people who have first hand knowledge and experience of PWS, we feel so much more determined and motivated that our child will have a happy & fulfilled life with us by her side.

- Parent

Information and Resources

Specialist PWS information and resources for families, professionals and people with PWS

Practical resources for families, professionals and people with PWS
Templates and checklists for PIP/DLA/EHCP and other forms
Network of PWS expert clinicians
Practical informaiton in an easy read format for adults with PWS
Dedicated online areas for families, professionals and people with PWS

Helen's Story

Training and Consultancy

PWS training and expert guidance for professionals, including care providers and educational settings

We provide:

Online and face to face training courses for professionals and organisations supporting people with PWS
Expert guidance in mental capacity assessments and Positive Behaviour Support
Webinars and conferences for families and professionals

Find out more about training

I found the training really useful, it's made me want to learn more and will help us support our patient in a more person centered way.

-Professional caring for a person with PWS

Helpline

One to one support and guidance from our PWS specialist advisers, whether you need expert advice, or just to talk in confidence to someone who understands PWS

Monday – Thursday 9am -5pm, Friday 9am-1pm
Signposting to specialist services and relevant local and national organisations
Support with referrals to specialist services and clinicians
Advice on benefits, statutory rights and best practice support for PWS, including mandatory reconsideration
Help navigating the SEND, health and social care systems
A listening ear from someone who understands the struggles of PWS

Louise's Story

Community Connection

In person events and online opportunities to connect, share experiences and spend time with others affected by PWS

Community days and weekends
Parent to parent online support groups
Online and in person events for adults with PWS
National conferences

Join us at an event

Thank you for today, it was informative and fun! You’re a small team and quite an impressive bunch. Thank you for all you do and always being there. At times of darkness your a light and always there by our side to help navigate us through life. It means a lot to know your there.

-Adult with PWS

New Diagnosis Support

Support, signposting and practical help for parents whose child has recently been given a diagnosis of PWS, with a dedicated named member of staff to support you through your journey.

Get new diagnosis support