Celebrating 40 years of positive changes in supporting people with PWS

May 1, 2022

On 5th January 1982, Gretton House first opened as a service supporting people with learning disabilities. The first individual with the rare genetic condition Prader-Willi Syndrome (PWS) was welcomed in 1983. Over the past 40 years, Consensus Gretton has supported hundreds of adults with PWS including those who also have learning disabilities, autism and additional needs.

Our dedicated teams of support workers, key workers and service managers now care for individuals with PWS in 22 residential and supported living services across the UK, including 12 specialist services in Cambridgeshire, Hampshire, Northamptonshire and Stirlingshire.  Three colleagues who have been part of this journey throughout four decades with us are Operations Manager Gail Ghavami and PWS Strategic Leads Kathryn Clarke and Myles Kelly, who all started their careers in adult social care at Gretton House in the early 1980s.

As all the Consensus Gretton services once again take part in PWS Awareness Month throughout May, they tell us about the transformations in care and support that they have seen and been part of.

How was it different back then, in terms of the service/s and the individuals supported?

Gail: There have been so many changes across the whole of the social care industry since I started as a support worker in 1982.  Looking back on my 40 years in social care and at Consensus Gretton, I have seen many improvements. When I started at Gretton House, there were eight people supported there and a small staff team, with no managerial support other than from the then owners of the home.  There was no formal induction and no training. Individuals that we supported had shared rooms and bathrooms, and most of the activities and opportunities were experienced as a group.

At the time, there was no real understanding of the syndrome nor training available externally. Nevertheless, people were cared for and although we didn’t always have the benefit of training to give us in-depth knowledge of how best to support them, we were always responsive to their needs.

Myles: I arrived in March or April 1986 and was the first ever male support worker to be employed by Gretton House, something quite revolutionary for our old boss!

Induction, training, support and supervision were not part of the industry standards. And yet I recall a busy, vibrant and happy service despite the challenges.

In 1986, Gretton House accommodated over 30 adults, male and female, only three with PWS. Today, the building has been totally remodelled to reflect the personalised ways in which we now support the 15 individuals living there.

Kathryn: There were shared bedrooms and bathrooms back in the ‘early days’, with two, three and even, in one case, four people to a room. Now accommodation is mostly all single, ensuite rooms at all our PWS services.

What do you consider to be milestones in the ways care and support for people with PWS has improved over the years?

Gail:  Firstly, how we have developed and introduced training to support this complex condition, and that’s providing every colleague in our PWS service teams with the knowledge to understand the many characteristics of PWS. Just as importantly, there is the focus on supporting each person as an individual in a person-centred way. Looking at the restrictions that are in place due to the syndrome, and the risks around health, means managing those with a person-centred approach.

As Gretton has been supporting people for 40 years, the name ‘Gretton’ has become synonymous with quality support and care in the PWS community around the world. 

Myles: People with PWS have benefited from the same changes and innovations all people with a learning disability benefited from over the last few decades. Greater awareness and insights into PWS meant our colleagues and teams had a better understanding of the condition, so therefore the care and support for people with PWS improved as a result.

Kathryn: There has been so much change across the whole of the social care industry over the years.  As organisations grow and the world of social care evolves, I am sure we will continue to see more. 

Supported individuals have more of a ‘voice’ now. This sounds like they never did, which isn’t the case. I consider the people we support to have always been at the forefront of quality care and support. I would say the really big impact has come about from the training given to each and every one of our support workers and service managers across Consensus Gretton, which gives them such a through understanding of PWS. As a result, individuals’ choices are better heard and better understood by us.

I consider the people we support to have always been at the forefront of quality care and support, despite many changes. 

Over the years, how would you say outcomes have changed for people with PWS – either in general or through having the right support in the right setting?

Gail: I feel that outcomes have improved for people with PWS as we have learned so much over 40 years of supporting people with the syndrome in different care settings.  People are given more opportunities to be part of the community and, with the right support, people are successfully maintaining work placements and community activities.    

I’ve also seen how we’ve improved opportunities and choices for everyone in an increasingly person-centred way. The people we support have achieved some amazing goals which I would not have thought possible back in 1982. The life-saving weight loss of a supported individual who arrived at Parvale House in 1998 stands out as one of these examples. Barely able to walk, with severely ulcerated legs, and struggling to breathe, she was prevented from accessing activities outside of the service. With dedicated support from the team and external health professionals over the years, this lady now has a work placement, a long-standing relationship with another supported individual and is actively involved in the community, a quality of life that back then we did not feel could have been possible.

Kathryn: Weight and activities have always been monitored, and food security has been an overriding factor.  The environment of Consensus Gretton has developed to support this – for instance, with the involvement of the PWS Outreach Team across all our services, life expectancy has improved with close monitoring of weights and information shared via our Clinical Management Tool.  Working closely and in partnership with the Consensus Positive Behaviour Intervention Team and sharing experiences has also made outcomes more positive.

Myles: We have extended and improved immeasurably the quality of life for many people with PWS. Mortality rates in India across all ages is thought to be around age 12. In the UK that number is 35/36 years-old but at Consensus Gretton we support people in their 40s and 50s. The oldest resident we have had at Gretton House reached the age of 64 before he passed away.

It’s so rewarding to know I and my colleagues have each played a small role in saving and extending the lives of people with PWS who otherwise would undoubtedly have died. People are alive today in Gretton, Corby, Kettering and elsewhere because of what we have helped them to achieve.

Over the last 40 years Consensus Gretton has grown and developed to become the UK’s largest provider of support and accommodation for people with PWS, with a renowned reputation for quality and integrity.

Our PWS Strategic Leads work across the services to share their expertise and advice with all the Consensus teams that support people with PWS, whether they are living in one of our specialist PWS services or at a learning disability service.

The Strategic Leads and their colleagues in those services are passionate in ensuring that every individual with PWS lives a full and active life, with a healthy lifestyle, for as long as possible. When that is in the right setting and with the right support, people with PWS can manage the challenges of their condition to achieve their goals and have a good quality of life.       

As we mark PWS Awareness Month throughout May, learn more about how care and support for people with PWS has evolved over the past four decades.

Visit – www.consensussupport.com/pwsandme-2022/

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