Third pillar, not gap filler
Latest research on the role of civil society
CEO, Prader-Willi Syndrome Association UK
Prader-Willi syndrome is a rare and complex syndrome that causes a wide range of issues. The main characteristics are low muscle tone, meaning physical developmental delays, a learning difficulty, social and emotional delays, and autistic traits which can lead to challenging behaviours. Usually, an overwhelming appetite with no sense of ever feeling full develops, and this will lead to morbid obesity and death unless food is carefully restricted and locked away.
There are only about 2,000 people in the UK with Prader-Willi syndrome, so most GPs do not know about it, and your local hospital may never have cared for anyone with it – unless you are lucky enough to live near one of the eight specialist centres in the UK.
Babies are usually diagnosed at birth and some parents are still told, “They won’t walk, they won’t talk and will probably eat themselves to death.” We know that eight-year-old Chloe will tell you that talking is her favourite thing to do and that James, who at two has just taken his first steps, is too busy trying to get into everything to worry about what his consultant told Mummy and Daddy. We also know that, properly managed, everyone with PWS can live a good life and no one needs to be morbidly obese.
There are thousands of rare diseases like Prader-Willi syndrome, and GPs and hospitals cannot know about them all. Sadly, NICE cannot have guidelines about them all either.
Rare disease patient groups like the Prader-Willi Syndrome Association UK only need to be experts in one rare disease – and over the last 40 years, we have amassed experience and developed links throughout the UK and the world with experts and researchers in PWS.
We have ‘everything you need to know about PWS’ brought together in one place and in a parent-friendly format which families can access at their own pace. We also have easy-read versions for when people with PWS grow older and want to learn about their own syndrome.
We constantly access the latest research and the latest strategies to manage PWS, and through our social media and weekly e-news we proactively pass this onto our community without waiting for the next hospital appointment and then overwhelming parents with too much information at once.
Our support is truly holistic and goes far beyond the medical issues.
We have a helpline that parents can ring, email, or access through Facebook and we support them through whatever issue or crisis they are experiencing, when they are experiencing it. We have the time to listen, we know the right questions to ask, and we truly understand PWS. We also step in and mediate on parents’ behalf, and when needed, hold local authorities to account.
The reason we can do this because we are truly independent and only answerable to the community we serve.
The reason we exist is to serve our PWS community – not to make a profit. Our stakeholders are our PWS families and those working with people with PWS, and they are hugely invested in our survival because we are their support and safety net. They will run marathons and climb mountains to make sure that we will be here for the next time they need us.
One parent said during this pandemic, “I will stand in front of a tank before I let the Association go under!” And another said, “Being able to raise funds for such an amazing charity means the world to us – we found you at a time we felt so lost and isolated. To know we have your continued support and for you to be able to help other families like ours is just so important – we don’t know where we would be without you!”
We do not have the split loyalties of local authorities who are both the decider of levels of care required, and the funder from their rapidly vanishing pot of money.
Our PWS community are not just our stakeholders, they are our family, and our employees are as passionate and as invested in our cause as our community. This is much more than the kind of client/staff relationship you would find in a corporate business or the doctor/patient relationship you’d find in a medical setting; our employees expect to go above and beyond every single day and are as much a part of our PWS family as our families are.
No other organisation has this level of dedication, or experience, or this depth of reach into the centre of the PWS community. No other organisation is solely focused on Prader-Willi syndrome, and this is why we are best placed to serve our community. This is why our PWS families place their trust in us and why they hold us in their hearts.