Stronger Links : Stronger Families

What Stronger Links : Stronger Families did

With your support we aimed to deliver six fully accessible and inclusive sports and leisure short break activities. We have had some challenges. Each event has had several cancellations and no shows due to young people contracting COVID, experiencing health issues related to their disabilities or taking/studying for exams. There was also a change in operational delivery for the project as our East Team Leader went on maternity leave in mid-January and this affected planning. On a positive, despite the challenges above, we have had successes as we engaged with 5 brand new family units and trailed a new model of support in May where we offered a wider choice of activities rather than "one type of activity" suits all approach.

Between April 22 and May 23, we delivered;
1. Van Gogh Alive –July 3rd 22 . Attendance- 6 family units (10 parents/carers, 6 young people and 8 siblings)
2. Adapted Rock Climbing and Abseiling – July 30th 22. Attendance- 4 families (6 parents/carers, 4 young people and 5 siblings).
3. Family Bowling – 5th November 22. Attendance- 4 families ( 4 adults /carers, 2 young people, 5 siblings)
4. Christmas at the Botanics – 3rd December 22. Attendance- 6 Family Units (12 adults/carers, 6 young people, 9 siblings)

A wide range of activities took place in and around the Edinburgh area throughout the month of May to suit all needs; visits to Almond Valley, Edinburgh Zoo, Dynamic Earth, Family Group Bowling. Attendees in total were 8 Family Units (16 carers, 16 young people and 12 siblings)

We also organised access to Edinburgh Leisure via becoming an affiliate members -This allowed us to refer our young members who then were able to access the gym, fitness classes and swimming for £ 1 per session. A disabled membership was financially not affordable to the families so this was a welcomed alternative. Benefited – 47 Young People.

We purchased a VR Headset and Nintendo Switch. Enabling Young People to virtually take part in activities that normally they felt excluded form i.e. Roller Coaster. Benefited – 47 Young People.

This project met all the funding priorities except P6.

What Spina Bifida Hydrocephalus Scotland has learned

We have had some challenges, the main ones being:

1. Whilst there has been significant interest in activities, the number of families who have attended planned events has been lower than anticipated. Each event has had several cancellations and no shows due to young people contracting COVID, experiencing health issues related to their disabilities or taking/studying for exams.

2. There will also be a change in operational delivery for the project as our East Team Leader went on maternity leave in mid-January and this affected planning.

3. We have had issues with the accessibility needs of our service users and unfortunately some venues, being short staffed not having the resource to support the specialised needs of our beneficiaries.

4. We are also beginning to hear from some families that are experiencing fuel poverty, and this is affecting their ability to attend events.

5. There have also been challenges in reengaging young people following the COVID 19 pandemic.

We learned from these challenges;

1.Although we have strong contacts throughout Health and Social care, we learnt that not all families engage in the Early Years. 5 brand new family units (5 carers, 3 young people with disabilities and 5 siblings) engaged with us through this project as their child was approaching transition into the teenager years and they needed extra support. Social media helped them find our services. We therefore learnt there may be more families in the East that we are not aware of and need to find a way to reach them to inform them of the wider family support we can offer.

2. After consultation we trailed a new model of support in May where we offered numerous activities for smaller numbers, and this was received well. It meant varied activities to suit all needs rather than “one activity fit all” type approach.

3.Exams had a huge impact on those available to participate. We need to plan better around exam time tables.

How Spina Bifida Hydrocephalus Scotland has benefitted from the funding

The funding helped us 1. Develop new partnerships with a wide range of organisations on the East Coast that are able to deliver inclusive sports and leisure activities. 2. The funding helped us engage with and rebuild relationships with children and young people on the East Coast who had limited contact with us after Covid 19. 3. Overall, the project has given many young people and their families the opportunity to take part in activities that they would not have been able to afford and do the things that they enjoy. Looking for alternatives has proved successful so that everyone has had the opportunity to take part in things they would never think possible. This has been evident in increased confidence, wellbeing and reduced isolation and new friendships have been made. 4. The funding helped us identify urgent family support priorities. Issues were identified by family support workers at group activities. For example; Because of the reduced access to healthcare as a result of the pandemic, we have had situations where children and young people were advised by medics to manage spina bifida & hydrocephalus related health problems at home that would previously have been monitored/managed in hospital. This put pressure parent/carers to make judgements about how to manage and self-manage a range of problems including pressure sores, cellulitis, potential shunt problems (can be life threatening), bladder/bowel problems and the breakdown of mobility equipment. The additional outcomes were related to the changes to health and wellbeing when our support workers were able to give the parent’s confidence and direct contact route to agencies and health care professionals for support. Case Study: Family Support Worker encouraged a parent to request urgent Neurosurgical advice after hearing of the child's unusual symptoms and change in moods during support call. They had been sent home from A&E the previous day suggesting it was a viral illness. As a result of the call to Neurosurgery the child was admitted to specialist hospital and found to have shunt failure and needing urgent neurosurgery.