Prader-Willi syndrome support

Prader-Willi syndrome is a very rare genetic condition affecting approximately 2000¹ adults in the UK. It is caused by a defect of chromosome 15 and affects the brain in a number of ways.

This has a significant impact on the mental, physical and behavioural well-being of people with Prader-Willi syndrome. It can lead to the development of a variety of complex needs including learning disabilities, physical symptoms and behavioural problems.

Normally diagnosed shortly after birth, it is most commonly associated with an excessive appetite and overeating, weight gain, a lack of muscle tone and delayed growth.

What we do to support people with Prader-Willi syndrome

Although there is no cure, a person living with Prader-Willi syndrome can still lead a healthy, fulfilling life when they have consistent support from people who understand the condition.

As part of our dedication to providing tailored care and support for each person living with the syndrome, we have developed our Prader-Willi syndrome specialism. This includes a Prader-Willi syndrome professionals group, who drive continuous improvement in this area.

We also provide specific Prader-Willi syndrome training for our staff teams. Our staff work to the highest standards of best practice, recognising that every person with the condition has their own unique qualities, interests and challenges.

We are also proud to have recently become Gold members of the PWSA.

Commitment to quality

We pride ourselves on providing great quality care for the people we support and as part of this, we ensure that all managers and staff are kept up to date with ongoing standards for the delivery of care via our internal quality mark which our care homes and community support hubs will work towards gaining.

Our Care Quality Commission ratings are sector-leading, with 94% of our locations, including our Prader-Willi specialism services, rated as either Good or Oustanding². This is much higher than the national average.

¹ Figure taken from PWSA.

² Data correct as of June 2018

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