Clare House present at the Scottish Dietitians Network Digital Meeting
On the 10th of June 2021, colleagues from Consensus’ specialist Prader-Willi Syndrome (PWS) team were asked to join and present at an online digital event for the Scottish Dietitians Network Meeting.
What is Prader-Willi Syndrome?
PWS is a rare, genetic condition which occurs in one in every 22,000 births and is characterised by a persistent hunger, excessive appetite and lack of satiety cues, as well as a number of physical symptoms, learning difficulties and behavioural challenges.
At Consensus Gretton, we support over 90 individuals with PWS in 22 residential and supported living services across the UK. This includes people living in one of our 12 specialist PWS services or in a service for people with learning disabilities and autism.
NHS Scotland ask for our expertise…
NHS Scotland is made up of 14 regional NHS Boards, 7 national NHS Boards and 1 public health body, and each NHS Board is accountable to the Scottish Government. Regional NHS Boards are responsible for the protection and the improvement of their population’s health and for the delivery of frontline healthcare services and provide a range of important specialist and national services.
The event, which was run by the Learning Disability Dietitians associated with regional NHS Ayrshire and Arun board, focused on Prader-Willi Syndrome, and as the only PWS specialist service in Scotland, Clare House was invited to share their expertise and knowledge of PWS.
The Scottish Dietitians Digital Meeting…
The meeting was attended by 20+ other NHS Dieticians looking to further their knowledge on this very rare genetic condition. Karina Carvell, our Specialist Trainer at Consensus, delivered the presentation to the participants, with Myles Kelly, Consensus’ PWS Strategic Lead and Charli Whyte, Clare House Deputy Service Manager, in attendance too.
Karina was able to give a really good steer on how to support someone with PWS and how the condition presents, where a key aspect of the condition is extreme over-eating and excessive hunger due to a lack of satiety cues and never feeling full. This can lead to excessive health and weight problems and life-threatening illness.
Karina covered a number of topics including the basic PWS facts and figures, the importance of exercise programmes and weight monitoring as well as the negative effects PWS can have on your health for example, how it can cause obesity, lifestyle limitations and psychological/behaviour effects.
She also discussed the support Clare House offers, including the different strategies it has in place to care for the people with PWS who live there in a manageable, safe and consistent way. Strategies included, menu planning, calorie counting, environmental controls, weight loss monitoring meetings and exercising! She also touched on the new ‘Health Champion’ role, which involves a member of the support team having responsibility for devising an exercise plan for each individual, looking at their goals and how they are going to achieve them.
Karina said, “It was great presenting at the Scottish Dietitians Network, offering my expertise and knowledge of PWS. I feel like the dietitians in attendance were really engaged and eager to learn more about PWS, as it is such a rare condition. It is also important to share information for the benefit of everyone living with PWS.”
At the end of the meeting Karina and Myles were able to answer some important questions from the dietitians. There were lots of interesting questions regarding PWS and more specifically Clare House, like whether an individual had to present with a learning disability to live at Clare House. They were both also able to share some real-life encounters of supporting individuals with PWS and the type of problems that can present if their condition is not managed properly. Charli, the Deputy Service Manager of Clare House, also answered some questions around what type of exercise the individuals at Clare House get up to and how often each day.
“Keeping fit and healthy and maintaining regular exercise is extremely important for the individuals who live at Clare House. Each week the activity board goes up with the activities for the week highlighted so everyone knows what they will be doing.” says Charli.
About Clare House…
Clare House, located in Dunblane, Stirlingshire, was the first service in Scotland to exclusively provide support for adults with PWS.
The service consists of nine spacious en-suite bedrooms situated across the ground floor and first floor, there are also four picturesque self-contained cottages adjacent to the main house where individuals are supported to lead a more independent life, whilst still having access to the support team. Within the main house there are lots of communal areas where the supported individuals can socialise together, including a large, homely lounge, dining room and activity room, which has an adjoining conservatory.
There is also a large mature garden with an outside dining area and gazebo. Life at Clare House is all about promoting an active, healthy lifestyle, whilst enabling the supported individuals to have as much independence as possible.