‘Michael’s Journey’ – Positive Outcomes for People Living with PWS

March 26, 2012

Prader-Willi Syndrome Outcomes 

Gretton Homes has been providing support for people with Prader Willi Syndrome (PWS) since 1982. We now support over 70 adults from across the UK and beyond.

PWS is a condition that is often poorly understood and over simplified. Gretton Homes provides unique, comprehensive and tailored support that caters for each aspect of PWS to ensure the highest quality possible.

Food security is the cornerstone which underpins the support at each service. Each person has a ‘Healthy Eating Plan’ which provides a balanced and nutritional menu and all of our services have secure kitchens and a range of environmental measures to ensure food security

As well as ‘Healthy Eating Plans’, everyone at Gretton Homes has a personalised exercise programme which includes activities such as swimming, visits to the gym and walking.

All of our Staff at Gretton Homes receive specialist training to support people with PWS and manage the more challenging aspects of the condition, as well as all basic support training. To enable Gretton Homes to continually improve the standard of care we provide, each of our Service Managers takes part in the National Open College course, ‘Understanding the Needs of Individuals with PWS’. This course is the first of its kind in the UK and just one example of how we are constantly raising the quality of support at our services.

The excellence of the support provided by the Gretton Homes services is evidenced in our ability to enable people, not only to lose weight, but to enjoy the social and emotional benefits of maintaining a healthy lifestyle.

 ‘Michael’s Journey’ – Positive Outcomes for People Living with PWS

 At 28 years of age Michael felt like he had so many goals left to achieve in life.  He weighed over 30 stone (200+ kilos) and had numerous physical conditions as a result – including leg ulcers, sleep apnoea and a dependence on oxygen when sleeping, which he needed to do sitting upright in an armchair.  He was also dependent on insulin. Following an unsuccessful supported living placement, Michael was back at home and his relationship with his family was becoming strained.  He needed help with most daily activities, was losing his motivation and did not want support on a weight loss programme.  His dreams of a home of his own and to find a girlfriend seemed practically unachievable.

When Michael came to Gretton Homes, the Support Team worked closely with him to construct a programme that would help him to achieve his aspirations over a period of time.  His support took very close account of his current limitations, but made it clear that these could be overcome as he worked to meet his goals.  He was provided with accommodation on the ground floor, as stairs were too difficult to negotiate safely and received 2:1 support for personal care.  Support workers accompanied Michael on all outside activities and helped him to make friends with other residents – a process that was difficult at times as Michael’s frustration with his weight led to occasionally challenging behaviour.

Inspired by the continuous support and encouragement of his team, Michael embarked upon a healthy eating plan and began to take light exercise.  Within six months his weight had reduced by six stone and he was confident enough to go to the local gym, although he would not yet go swimming.  Michael was able to sleep in a bed for the first time in many years and his insulin requirement was reduced.  Perhaps the clearest sign of his growing self-confidence was that Michael now had a girlfriend!

After one year at Gretton Homes, Michael’s life has been transformed.  His weight has come down to 20 stone and he has set himself the goal of further reducing it to 14 stone, the target he needs to achieve in order to go horse-riding.  He no longer needs assistance with showering and personal care and in keeping with his improved self-image, enjoys wearing trendy clothes!  Michael is a regular at the gym and enjoys swimming and ten-pin bowling with friends and support workers.  His leg ulcers are gone and he is no longer dependent on insulin. 

His improved mobility has enabled a move to a larger first-floor room and Michael can also go to the local shops unaccompanied.  Plans for the future include a fishing trip with his brother and Michael has recently become engaged to his girlfriend.

Michael’s Quote: “The support I’ve received has helped me to realise that I can achieve great things if I really put my mind to it.  My life has changed so much for the better.”

 A Support Worker’s Perspective

“Michael’s story sums up why I do this job.  Being able to help someone to meet and overcome the challenges posed by PWS and to really turn their lives around is immensely rewarding.

“Michael’s journey was not an easy one.  His physical condition when he first arrived with us had to be really closely monitored and taken into account with his programme.  He also exhibited some challenging behaviours, which required careful handling.  However, this is exactly the sort of thing we are trained for at Gretton Homes and we never lost sight of the great person that Michael is.  I’m so proud of him and all the people we support.  It’s not everyone who can say that they look forward to each and every day at work, but that’s what it’s like here.  We’re passionate about what we do and the people we support respond really positively to that.”

For more information on Gretton Homes and the support we provide to individuals with Prader-Willi Syndrome click here