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Supporting Adults with Prader-Willi Syndrome PWS in Wales

Consensus

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Supporting Adults with Prader-Willi Syndrome PWS in Wales

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    1. Supporting Adults with Prader-Willi Syndrome (PWS) in Wales James Allen & Simon Kezic Consensus Support Services Myles Kelly - Gretton Homes (part of Consensus)

    2. Consensus the Advert Privately owned provider of a range of services for people with a learning disability and other needs across England, Scotland and Wales Support nearly 600 people in a variety of community based settings Opened first new development in Machen in January 2009 further services planned in Carmarthenshire opening August and October 2009 Focussed on developing new partnerships to enable further service development PWS a real opportunity

    3. What we will be talking about today? A brief overview of PWS Gretton Homes experience The story of one young Welshman Present service model Opportunities for adults with PWS in Wales case study Q & A session from the audience

    4. Why do we need to address the needs of those with PWS in Wales? Unlike England & Scotland and other EU countries, Wales has no specific PWS services As a result, the mortality rates for those with PWS are likely to be higher Evidence from the Welsh PWS Advocate suggests many people are being inappropriately supported in a range of care settings including the family home, supported living and residential care

    5. PWS Explained People with PWS have a range of disabilities which include: An obsession with food from about the age of 2 onwards Poor muscle tone Mild to severe learning difficulties Lack of normal sexual development Poor social and emotional development Generally short in stature including small hands and feet and particular facial characteristics

    6. Basic facts about PWS A birth incidence of between 1:15,000 and 1:29,000 worldwide Meaning there could be anywhere between 100 and 200 people in Wales with PWS* *Welsh Assembly Govt, mid year estimates of the population 2007 Gretton Homes supports 1 person from Wales UK PWS mortality rates of 3% per annum rising to 7% per annum over the age of 35 PWS experts suggest that mortality rates could be higher in Wales due to a dearth of services Most common causes of early death are almost exclusively weight related

    7. Wales the current landscape? People with PWS in Wales not easily able to access specialist service? People with PWS being supported at home/and or inappropriate settings sustainable in long term /impact on others? People with PWS being placed outside of Wales? No dedicated service for people with PWS in Wales Welsh expertise?

    8. Vision for Wales Improved understanding of the issues facing people with PWS in Wales All people from Wales with PWS able to access appropriate PWS services Health and well being of people with PWS in Wales improved The development of a Welsh PWS Centre of Excellence able to develop ad deliver expert support for people with PWS and their families in Wales

    9. Gretton Homes Established in 1982 UK market leader in providing PWS services Presently supporting over 60 adults from all over the UK 7 homes in Northamptonshire New service opened in June for 13 adults in Dunblane Presently developing a 4 bed service for those with more complex needs in Peterborough Assessing the need for a service for those with PWS with early onset of dementia

    10. Gretton Service Model At is heart a person centered approach enabling people with PWS to live as independently as possible: Food security Routine/structure gives safety Confidence self awareness /understanding Emotional/psychological support Support to families Advice to professionals

    11. Other crucial aspects Food security the cornerstone to the successful management of PWS Meaningful and constructive weekly timetable incorporating weekly exercise programme Experienced, knowledgeable and well trained workforce Extremely low turnover of Service and Senior Managers ensuring continuity of care and operational efficiency

    12. The story of a young Welshman Arrived in March 04 Weight on arrival 23st 3lb (147kg) Height 5ft 1in Health and mobility extremely poor Suffered with sleep apnoea resulting in him sleeping upright at night on arrival Behaviour increasingly challenging

    13. And today June 2009 Now weighing 10st 10lb (68kg) Healthy, fit, with full mobility and psychologically stronger Active lifestyle including working on an allotment More knowledgeable and less self conscious about his condition

    14. The young man today....

    15. Case Study Clare House, Scotland Joint initiative led by Scottish Executive repatriation of Scottish people with PWS to Scotland Partnership between statutory, voluntary sector (PWSA), families and the private sector Development of trust between stakeholders gave confidence of sound business case Opens June 2009 3 years planning

    16. Clare House Service Solution 13 place residential care home including 4 semi independent living units Enabling 3 people currently within Gretton service in England to move home closer to their families First specialist service of its kind within Scotland building capacity to develop expertise and services further Support and hope to people with PWS and their families in Scotland

    17. Clare House - Outcomes Improved health and well being for people with PWS in Scotland (and their families) Appropriate support to people with PWS to live as independently as possible by minimising the associated risks of their condition as close to home as possible Residential care but with additional semi independent living measured move towards supported living for those able to manage their PWS

    18. Summary Relatively low numbers but with huge impact on the individual and their families PWS a chronic condition but with potentially good outcomes if appropriate support available Wales underprovided c 100/200 people with PWS in Wales what support? The case for developing a Welsh PWS is strong and compelling A partnership between Consensus/Gretton & Welsh Local Authorities could deliver a much needed service

    19. Key Contacts Simon Kezic, Consensus (Wales) 07795570376 Myles Kelly, Gretton Homes, 3 High St Gretton, Northants, NN17 3DE, Telephone 01536 770325 or visit the website www.grettonhomes.co.uk PWSA 125a London Rd, Derby, DE1 2QQ, Telephone 01332 365676 or visit the website www.pwsa.co.uk

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