“Please supply this information as the most up to date snapshot available. Please include data for all people aged 18+.
1. Please provide the total number of adults known to local authority social services who have a diagnosis of Prader-Willi Syndrome.
Devon County Council does not hold this diagnosis level of detail on its Case Management System (CareFirst). The diagnosis may be mentioned in each client’s observation notes, but we would need to review each record individually to locate, retrieve and extract this information. As at 29th December 2019, there were 87,000 clients aged 18+ known to Devon County Council Social Services. We estimate that it would take in the region of 5 minutes to review each record, totalling approximately 7,250 hours
Under the Freedom of Information and Data Protection (Appropriate Limit and Fees) Regulations 2004 public authorities are not obliged to comply with requests which exceed the cost limit of £450 (equating to 18 hours of time). On this basis, we consider Section 12 of the Freedom of Information Act 2000 to apply to this request.
Should you wish to refine your request to fall within the cost limit as outlined above, we would be happy to review your request.
2. Please provide the total number of adults known to social services who have a diagnosis of Prader-Willi Syndrome living in a care home (including both residential and nursing care homes) – Please see response to question 1 above.
3. Please provide the average weekly fee (average weekly support cost) for adults with a diagnosis of Prader-Willi Syndrome living in a care home – Please see response to question 1 above.
4. Please provide the total number of adults known to social services who have a diagnosis of Prader-Willi Syndrome living in supported living – Please see response to question 1 above.
5. Please provide the average weekly fee (average weekly support cost) for adults with a diagnosis of Prader-Willi Syndrome living in supported living – Please see response to question 1 above.
6. Please provide a list of the providers with which adults with a diagnosis of Prader-Willi Syndrome are living (please include both supported living and care home providers) – Please see response to question 1 above.
Prader-Willi Syndrome (PWS) is a rare genetic condition that causes a wide range of physical symptoms, learning difficulties, and behavioural problems.”