Stronger Links : Stronger Families
A story by Spina Bifida Hydrocephalus Scotland
Our project delivered leisure activities for children and young people aged 12-18 affected by spina bifida and hydrocephalus and their parents/carers and siblings.
Support Workers will coordinate to overcome the accessibility and inclusion barriers to participation, and provide holistic family support.
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.
A minimum of 30 children and young people with SB/HC will have taken part in in a range of fully accessible leisure and sporting activities and made a new network of friends: Targets: 6 fully accessible Sports and Leisure Activities 6 opportunities to meet children of similar age/disability
To meet this outcome, we delivered over 6 fully accessible Sports and Leisure Activities for Children & Young People aged 12-18 (C & YP) plus offered discounted access to Edinburgh Leisure allowing children and young people to take part in swimming and gym activities. We also purchased a VCR Headset to allow children and young people to enjoy activities virtually that they normally were excluded from. All 6 activities were accessible and designed to suit the needs of our children and young people and had a strong social aspect. The result of this was that beneficiaries felt a sense of inclusion, reduced isolation and made positive connections with their own peer group i.e., built a network of friends that could be sustained out with the SBH Scotland environment. They also experienced new activities in the wider community that normally were not accessible due to financial or inclusion issues. i.e., Access to the gym/Botanic Gardens. Making links with other children and young people with a shared dialogue is invaluable for building a sense of community.
M at the beginning of the year had undergone major surgery that had meant a leg amputation, this has had a negative impact on her physical and emotional wellbeing. She had withdrawn from all social activities and had become socially isolated. She shared that she wanted to increase his upper body strength and regain his confidence. A gym membership was not financially affordable, but this programme has given her the opportunity to attend several times per week. M also made connections with other young people that were facing similar challenges and has maintained and built on these new social contacts out with the project activities.
60 carers/parents will have established a network of peer group support and will have access to advice and information on how to reduce the impact of the disabilities on daily life. Targets 6 fully accessible sports and leisure group activities Share information re opportunities
To meet this outcome, we provided over 6 fully accessible sports and leisure group activities tailored to carers’ needs and shared information regarding the daily management of the disabilities. Answers to questions were available through a wide variety of mediums: face-to-face at home or hospital, telephone, email, facebook PM, SMS, website, social media forums, newsletter; and specific topic leaflets. Continence and medical issues are a massive issue for many of our carers and prevent the family unit experiencing life in the wider community. Sharing information, especially in relation to the long-term medical management of the disabilities counteracts fear of the unknown and helps carers to feel empowered and supported. Additionally, by providing the opportunity to meet others in a similar position we were able to develop a social network with others who have an understanding of their journey.
A is 16 years old and has many health conditions including Curvature of the spine. A has 4 siblings who are affected by autism, adhd and require 24/7 care by mum and dad. The family had been in touch with us back in 2019 but due to covid had not had a chance to engage so when we reached out to them for the better breaks project they were very happy to get involved. A and her family attended the bowling trip as part of the better breaks funding and said ‘they had a really good time and had never been bowling as a family before’ days spent together as a family of 7 can be difficult to cater to everyone’s different needs, expensive and as a result very rarely get to go out together. Dad commented that it would be their first meet up and because A has numerous conditions with complex needs and due to covid she seems to have fallen through the net with lots of services. So when we got in touch it was "reassuring to know we recognised her condition, It will be great to meet other families’ The family are now part of our closed family facebook group, have enjoyed a day out at almond valley together too and will continue to receive the support from us and from other families. Better Breaks has enabled us to support a new family who really need it.
30 children & young people and 90 carers (including siblings) will have experienced a family-based activity in the wider community and had specialist family support to resolve issues affecting wellbeing. Targets: 6 fully accessible sports and leisure group activities 50 family support contacts
To meet this outcome, we provided over 6 fully accessible sports and leisure group activities and at each activity we had family support workers available to identify and discuss any challenges that the family may be affect by, or the individuals within. In total we handled over 62 contacts from the 12-18 age group and carried out 10 1:1 home or hospital visits to resolve issues. We encourage families to see the positive changes that happen as a collaborative effort, and encourage them to take ownership for as much as their individual circumstances will allow. This approach empowers families to identify the solutions that will enable them to take control of their lives and helps them develop the skills and experience to develop long term resilience. This will improve their quality of life and wellbeing in the future. The project helps the family foster best practice in supporting the child affected and nurture the long-term resourcefulness & self-management to overcome crisis.
We have been working with X aged 15 throughout his transition into adult healthcare services. We have also worked with his mum to develop a plan for how she can best support Beau. Our services always take a holistic approach to support and therefore includes the whole family/support network. Transition has been challenging for X because he has not received the same support in adult services as in paediatric services. Despite referrals put through from paediatric services, the support he has received has not been joined up. Therefore, he has had issues with his health following his discharge from paediatric services. We have been working with him and his family to ensure that they can advocate for his needs. In addition, to the transition clinic X has also been receiving support through our other services. X found high school difficult as he struggled with bonding with peers. In addition, he has struggled with independence . Our Family Support Worker has been working with X to build relationships and confidence so that he can thrive in adulthood. X takes part in one-to-one and group/peer support. With one-to-one support he has been working with family support workers to build skills for leading an independent life. This has been quite successful as he has started to think about the future including employment options and further education.