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.
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 of a person with PWS
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
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
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
Community Connection:
Helping people access the support they need and navigate the health, education, social care and justice systems.
XYZ
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
