Consensus specialists were proud to present at the 2021 PWSA Conference
Our Consensus colleagues Karina and Lisa Carvell are not only sisters but both are also specialists in supporting people with the rare genetic disorder Prader-Will Syndrome (PWS). So it was no surprise that they were invited to share their expertise, and in-depth knowledge of the all-important issues around diet management for individuals with PWS, at this year’s Prader-Willi Syndrome Association UK conference.
The Prader-Willi Syndrome Association UK (PWSA UK) is a charity offering a wide range of information and support to help families and professionals manage the complexities of PWS, which affects one in 15,000 people in the UK. The condition is characterised by chronic feelings of a near-permanent state of hunger, which can lead to excessive health and weight problems and life-threatening illness if not properly managed. Individuals with PWS can also experience a range of cognitive, behavioural and physical challenges.
Over two days, on 6th and 7th November, this year’s virtual conference event ‘The Changing Faces of PWS’ enabled delegates to take part in interactive sessions where they could discuss a range of topics with renowned experts and guest speakers. Saturday’s programme was geared towards parents and carers of under 16-year-olds, and Sunday’s aimed at over-16s.
The Sunday workshop session hosted by Karina and Lisa was designed to tell delegates more about diet management strategies which can successfully help to support people with PWS. Their workshop was attended by more than 50 parents, carers and professionals looking to further their knowledge on this all-important aspect of coping with the condition, and to put their questions to Karina and Lisa.
“We welcomed this opportunity to highlight the benefits of using the calorie counting method to provide a balanced diet,” said Karina, who managed PWS services for over 20 years and is now a Specialist Trainer at Consensus. “That included looking at the different types of diet options, easy ways of calculating daily calorie intake, hidden ‘high calorie surprises’ in foods that are often seen as healthy, our menu planning ‘top tips’ and, of course, the importance of exercise.”
Lisa is Manager of two specialist PWS services provided by Consensus Gretton in Corby, Northamptonshire – Bannigans and Holland House. She adds, “Diet management is just one of the different strategies and approaches we have in place in our services to care for people with PWS in a manageable, safe and consistent way. For instance, we also put together an exercise plan for each individual, looking at their goals and how they are going to achieve them.
“It’s important to share information for the benefit of everyone living with PWS, since it is such a rare condition, so Karina and I were very pleased to be part of the 2021 PWSA Conference. Between us, we’ve more than 40 years of experience supporting people with PWS, a role we both love and feel honoured to do.”
About Consensus Gretton
At Consensus Gretton, we have 39 years of experience and expertise, and 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.
For the individuals who live within one of our Consensus Gretton services, we aim to support them to meet their individual needs, as well as nurturing each person’s strengths and abilities while understanding and managing their daily emotional, physical, behavioural and social challenges.