Summary
We provided a range of events and meetings for our Scottish families including a long weekend break, Community days and a Christmas party. This will reduce isolation, provide new skills and build a Prader-Willi syndrome (PWS) support group in Scotland for our community.
What Scottish Posse did
The project delivered a family weekend in May 2023, which was well attended and included exercise such as swimming and Pilates which were both a great success. A visit to Blair-Drummond Safari Park was also a great success with lots of activities and community support happening in July. Attendance at zoom events has been increasing helping to develop a local support network. We held a Town Hall open evening to discuss future plans for delivery in Scotland.
We have also sent out a questionnaire on Survey Monkey to collect evidence to influence our future delivery to our PWS community. Our Christmas party was very well attended. We planned a visit to the theatre to see Shrek.
The activities supported those with PWS and their carers and family members. All events were free to our community and the theatre trip and safari park were particularly well attended as these are expensive places to attend especially as a whole family. Families enjoyed meeting up and not being worried if their child had a meltdown in public as they were amongst others who understood their everyday living. The same applied to the community weekend, if their child or young person was getting stressed and building up to a meltdown others will help to distract them, as they share coping mechanisms.
What Prader-Willi Syndrome Association UK has learned
We have learnt that some things are very different in Scotland things such as DBS, Education and Health care plans, and clinics. This has led us to see why it is essential that we employ a member of staff in Scotland who can link in with the various health and social care organisations. Our community have offered their support with a range of things including linking us in to other charities and support groups. Our community has provided us with a range of evidence to build a case with funders to support funding for a Scottish team member to continue to deliver and expand our Scottish services.
How Prader-Willi Syndrome Association UK has benefitted from the funding
We have been able to offer and attract our community to more events giving us more kudos in Scotland. We have offered additional events and been able to provide financial support to families enabling them to attend.
Project Outcomes
Outcome
We have provided a varied range of opportunities for our community some things they have done before but also new ones giving them new experiences. We have seen an increase in our community communicating outside of our events developing their friendships. Seeing other people with PWS taking part in different activities gives confidence and encourages others to try new things.
Results
Some of our young people have told us that they are attending local activities such as Pilates due to experiencing them at the community weekend. Some of the community have developed local relationships and they have come together to attend events provided by us and other charities. They have also met up at clinics where they now feel more comfortable as they know others there who are attending for PWS appointments.
Carers have the opportunity to take part in activities alongside their PWS sibling and competitive rivalry for fun has provided some great family moments with families being able to take part on a level playing field.
Case study
A young person aged 16 with PWS:
I had not done Pilates before but I loved it. I loved doing it with other people with PWS and we had a good laugh falling about. My mum says that I might develop scoliosis but the teacher gave me some exercises that will help me. When I get home mum says we can find a local class for me to attend. Doing exercises has helped me with my fitness and I am now swimming for my college and in some competitions and I have won some medals. I am also going to do some exercise for awareness month and I can add my steps into the map going around the whole of the UK.
Outcome
It was lovely to see discussions going on between our young carers and we have developed some special support tools for them following consultations and work with UEA. They talked about what it was like to have to hide eating treats like Easter Eggs and Halloween treats. They gave each other support with examples of how they deal with the meltdowns of their PWS siblings and meeting others who understand this cruel and lifelong condition. We have now set up an online group for siblings where they can share all their experiences and get reassurance from others about how they are dealing with things.
Results
We have developed some tools to support siblings and set up a support group online for siblings. One young lady has become an advocate for siblings and she will be talking at our conference encouraging others to become involved.
Case study
One young lady said it was lovely to come and see how her sibling grew in confidence when she was with others who had PWS. As her sibling played with others it gave her chance to get a drink and dance with other siblings. They both joined in with the entertainment and it was lovely to see the caring nature of the young carer but nice to see her be able to enjoy herself when she knew her sister was safe and happy. Sometimes siblings go through a stage of resenting their PWS sibling due to the time and effort parents have to put into supporting them. One partiuclar sibling, who was at this stage, attended the family weekend and she said at the end it had done her the world of good to see her younger sister being able to interact with others with PWS and she was able to spend some quality time with her mum which did not happen often due to mum having to support her PWS sister constantly.
Outcome
The young carers are often very mature and kind in nature. Many of them have grown in confidence and skills over the year and are able to sustain their caring role. They tell us that they help around the home and are often the ones that are able to help control the meltdowns that occur with the PWS sibling. They also said it is good to know that they can talk to staff at these events or contact them at the zoom sessions or by phone, it helped them feel they were not alone.
Results
They also know that they can contact us for any help and support when they need to. They can use tools that we have provided, pick up the phone or use social media if they are old enough. Also they now have some local contacts who they can talk to about a range of issues.
Case study
We are a big family and my PWS sister is the youngest of our siblings. She can be hard work and mum works so we all muck in to support our sister. During the family weekend we were able to take our sister away and take part in activities with the other carers. It was a great break for all of us. We all take it in turns in helping out with XXX but she is hard work and often hits us but we have talked to others over the weekend and they say not to take it personally but our sibling with PWS does not have much speech so she gets frustrated and that is when she hits out. We picked up some tips to divert her attention which we think will help.
Outcome
Having time with our community allows people time to see a range of other PWS people in different stages of development. Generally this is beneficial but sometimes it can highlight what might occur in the future that is not so positive. Families go through a range of emotions but generally these have been positive. 84% of those supported said generally they have better wellbeing.
Results
Knowing there is local support is very beneficial for the community. Also knowing that PWSA UK are at the end of the line is most helpful.
Case study
Having time with others who understand what we are going through as a family has been so good. I felt thoroughly rested and full of hope for the future after the weekend.