Creating community, connection and peer-support for children, young people and families affected by MPS and related diseases.
As we know, our community’s needs have been exacerbated by the COVID-19 pandemic and lockdown. From the threat to life to the limits to independence and social interaction, our community have never been in more need of our support. To meet this need, we have adapted our plans for the next three years to support the MPS community to still build connections and receive the support they need through these times and we are delighted that The National Lottery Community Fund - Reaching Communities have awarded us £195k to help us achieve our plans.
We recognise the need to involve our community in shaping our organisation. In 2018, we undertook ‘The Vision Project’ our biggest consultation with all key stakeholders in our 37 year history. The three themes that were identified as key areas for support were ‘Connection’, ‘Transition’ and ‘Adulthood’. Of these three themes, the most commonly reported was the need to build connection across the MPS affected community. Patients and families value connection with others who understand what they are going through. Our beneficiaries reported a desire for more opportunities and varying ways to connect with peers including by age group, disease type and location.
Throughout the pandemic, we have been checking in with our community to ensure that these are still the most pressing issues we need to address. We have kept in touch with our members through individual calls, zoom meetings with our young person’s panel and through surveys. The resounding response is that these themes need to remain our primary focus, with the addition of immediate wellbeing support due to the crisis.
Patients and families value connection with others who understand what they are going through.
Our members tell us that they most value face to face interaction. We plan to deliver these events in person whilst maintaining social distancing wherever possible. The safety of our members and team remain our main priority and we will always abide by government and NHS safety measures and advice. We plan to be flexible in 2021 with a combination of events, smaller events and virtual replacements where needed. We hope that we can return to our full event programme in 2022.
With funding from The National Lottery Community Fund - Reaching Communities, we will support the children and families affected by MPS and related diseases to build connections across the MPS community, reducing isolation. We have worked to tackle the increased social isolation our members have experienced due to the pandemic with weekly webinars and virtual events.
“It’s a good way to break up the week and fight some of the loneliness that I know I would be facing if I didn’t have the banter of the weekly Zoom to look forward to! I feel as if I have grown in some confidence, because even a year ago, I would have started to panic about the prospect of speaking to people. I have always worried about not being understood.” MPS Society member
Our response to the need for connection, is to provide opportunities to build relationships, encourage peer support and create a platform for those most affected to shape the services that matter to them.
We will build connections through this project over the next three years by working in four key ways:
1. Family events – bringing families affected by MPS and related diseases together and encouraging them to build connections and share experiences.
2. Virtual wellbeing support – building connections and reducing social isolation during lockdown, isolation and beyond.
3. Young Person’s Advisory Board – creating a panel of young people with an MPS or related diagnosis, empowering them to shape our offer for affected young people.
4. MPS community – sustaining community connections and providing specialist information and support for families.
Every member; the affected child, their parents, siblings and wider family and friends’ network, will all benefit from access to our events and support services. The impact will be a more connected MPS-affected community, reducing isolation and providing support to families who would otherwise be isolated by their disease.
We are thrilled that the National Lottery Community Fund have granted us funding over the next 3 years so that we can drive this project forward and we know this vital work will make a marked difference to many lives.
