Northants MP’s support our PWS services to raise awareness of Prader-Willi Syndrome during Awareness Month

June 2, 2021

With the largest population of individuals with the rare, genetic condition, Prader-Willi Syndrome (PWS) in the UK; PWS Awareness Month in May is an important date on the calendar in Northants, and over the course of the month, the local community, including MP’s Philip Hollobone and Tom Pursglove have been supporting Consensus Gretton’s Northants based specialist PWS services with their awareness activities.

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.

Consensus Gretton provides support and accommodation to 60 individuals with PWS across nine specialist PWS services in Kettering, Corby and Gretton, with people coming from all corners of England and Wales to benefit from this specialist and life-saving care and support.   

PWS Awareness Month occurs annually in May and aims to raise awareness and better understanding of PWS among the wider community. During the month, people are encouraged to ‘Go Orange for PWS’ – a tradition that started in Australia in 2013 and has since spread across the world, with the colour orange chosen because of its association with ‘hunger.’

On Friday, 14th May, two specialist care homes for individuals with PWS in Corby, Northants; Holland House and Bannigans, were delighted to receive a visit from local MP for Corby, Tom Pursglove, in support of their ‘PWS Awareness Month’ efforts. 

In preparation for MP, Tom Pursglove’s visit, the supported individuals and their support teams decorated the back garden with ‘PWS Awareness Month’ balloons, and a handmade ‘Welcome Tom’ sign. Everyone also enjoyed wearing their ‘Go Orange’ t-shirts for the special occasion.

The local MP, who has been active in supporting both his own constituents and those living across Northants to raise awareness of PWS both locally and within central government, was keen to learn about the services PWS awareness activities, including supported individual, Sally’s ‘Stepping into May’ challenge, which involves completing 250,000 steps over the course of the month, with the aim of raising £100 for the Prader-Willi Syndrome Association (PWSA) UK.

Sally, whose key worker, Michelle has been supporting her to walk laps around the local park to reach her goal, was delighted to share that just two weeks into the challenge, she has walked a total of 165,721 steps and raised £290.00 for the association – almost triple her target! (by the end of May, Sally reached her goal and completed over 250,000 steps, raising £320 for the association.)

In addition to the two Corby service’s activities, the team were also keen to share the activities taking place at other PWS services across Northants, including the ‘Go Orange’ Walk organised at Gretton House in Gretton and the ‘PWS Awareness Month’ window display created by supported individuals at Perrywood House in Kettering.

Lisa Carvell, Service Manager of Holland House and Bannigans said, “PWS Awareness Month is an important time for our supported individuals as it provides an opportunity for them to raise awareness of their condition, and to demonstrate that although they may face various day-to-day challenges, with the right support they can also live healthy, meaningful and fulfilling lives as part of their local community.”

Tom Pursglove visits Holland House and Bannigans

“We were delighted to have MP, Tom Pursglove visit our services to lend his support to our awareness activities and to take the opportunity to learn more about the lives of his constituents with PWS,” said Lisa.       

MP for Corby, Tom Pursglove said, “It was such a privilege to visit this vital organisation that does such important work for those living with Prader-Willi Syndrome in our community. I was very grateful for such a warm welcome and I really enjoyed meeting the residents and the first-class team who so diligently support and care for them.  I am proud to continue to support Consensus Support Services locally and the wider PWS network in raising awareness of this condition.”

On Friday, 21st May, MP for Kettering, Philip Hollobone, visited Kettering General Hospital to meet Myles Kelly, PWS Strategic Lead for Consensus Gretton and Leanne Farmer, Learning Disability Acute Liaison Nurse, to learn more about their close working relationship and how it supports all 60 individuals with PWS in the local area to receive the best possible medical care.

Myles Kelly, PWS Strategic Lead at Consensus Gretton said, “Severe medical complications can develop quickly in individuals with PWS, so it is important for healthcare professionals to understand why and how symptoms are presenting and act quickly in routine or emergency situations.”

“The positive working relationship we have built with Kettering General Hospital and in particular Leanne, our Learning Disability Liaison Nurse, has ensured that medical alerts and complications that can occur with this rare, genetic disorder have been communicated effectively, resulting in the individual we support receiving the best possible care when required.”