A story by Spina Bifida Hydrocephalus Scotland
Supporting Superheroes delivered peer support groups and activities for children & young people aged 8-18 affected by Spina bifida/hydrocephalus living on the Westcoast. An additional programme of activities/groups was delivered for the extended family unit including information sessions and outings
What Supporting Superheros did
The project supported young people aged 8-18 on the West Coast affected by spina bifida and hydrocephalus. All were engaged with the charity. We met the following priority areas, complex needs, sports and activities, independence, and transition to adulthood. SBH Scotland has informal partnerships in place with a range of healthcare, education, voluntary sector, and social care professionals to deliver the project outcomes.
The overall challenge was an issue with resources due to an ongoing shortage of staff currently impacting all health and social care sectors. We also experienced challenges as many of our beneficiaries were feeling extremely vulnerable after the pandemic with a loss of confidence in attending activities in the wider community . These factors plus Omicron restrictions in Winter 22 meant our original plans were amended to meet the new needs of our beneficiaries.
We delivered the following between August 1st 21 and June 30th 22.
•16 monthly peer support groups for C&YP only - 5 physical groups/ 11 virtual, with additional Facebook Live activities
•15x 1:1 Respite support either remotely or when restrictions allowed face to face
•2 Day Trips.
27th July- Adventure Day at Auchingillan (axe throwing, archery, team challenges and picnic activities) . Delayed from March 22.
6th May – cinema trip IMax theatre.
• 2 Family Activities
Dream Night Blair Drummond Safari
National Trust Tickets
• 4 x Family Support Groups (entire family unit)
•Christmas Party – The Panto Live Experience – an interactive online pantomime
•2 information sessions tailored to carers’ needs
1. Continence clinics
2. Information and advice was also shared through website, Coronavirus hub webpage, 11 x private member Facebook groups.
Success was the ability to respond to new needs in a fast-changing environment. Support and short breaks were delivered although in a different project model than originally planned i.e. group respite activity replaced by virtual 1:1 respite support. It was important that we were able to listen to young people and their families, the pandemic affected everyone differently and we had to adapt to the ever changing situations.
What Spina Bifida Hydrocephalus Scotland has learned
A weakness of the project has been the reduced opportunities to hold group activities due to restrictions and vulnerabilities. This greatly affected our ability to deliver the project as planned.
The external environment also continues to affect SBH Scotland as follows;
1. We found that once restrictions were lifted, booking activities were in high demand as all organisations had started playing catch up" For example; we could only manage to book 1 adventure day when we really wanted to do 2., additionally we had to wait till July for an activity day at Auchingillan due to demand. This was not something we anticipated or planned for and delayed delivery.
2. Unfilled vacancies continue to affect service delivery, due to the UK shortage of health and care staff i.e. 1 Family Support post is still not filled. There is also the concern that the post pandemic /Brexit/Ukraine global financial situation will have an impact on fundraising and therefore our ability to proceed with the recruitment of these posts even if suitable candidates are found!
To address issues no.2, we are building on the strengths of relationships by actively engaging with other third sector organisations to work collaboratively on providing specialist aspects of our work in a more efficient and cost-effective way (i.e., New Scottish Benefits agency). We have also continued to encourage and facilitate the peer connections for adults and carers to build upon the value of key worker/family relationships and foster resilience and secure attachments. Whilst we have limited control over the global financial situation of covid-19 and political unrest, we are responding to staff shortages through regular reviews by Senior Managers to implement recruitment as soon as feasibly possible. We are also investigating social enterprise ideas to generate sustainable income.
However, the Pandemic has bought about a positive unexpected outcome. We have learnt that digital online communication provide opportunities to engage with families and to further strengthen their circle of support regardless of geography. Limited resources in health and social care have strengthened existing relationships with the Direct Services team who have been receiving increased referrals for support and safeguarding issues, often at crisis point. Additionally, in terms of multi-agency meetings, the enforced online forum has increased opportunities for collaborative working as more professionals are able to participate without added travel times and commitments. .There has been a strengthened appreciation of the integrated approach to meeting an individuals needs and the contribution SBH Scotland's support makes to improving and sustaining wellbeing and resilience for young people and their carers.
How Spina Bifida Hydrocephalus Scotland has benefitted from the funding
Delivering the Better Breaks funding in a covid landscape in 21/22 helped us develop and review our group activities for 2022/23. We anticipated that many of the challenges would continue and have amended services appropriately. Challenges such as. 1.Further lockdowns and restrictions. 2.Each family unit having differing opinions on covid restrictions measures and their implementation. 3.Loss of confidence in engaging with the wider community due to lockdown and shielding. By discussing the challenges with families, we were able to review our activities and created a new approach to group work trailing a new outdoor approach. 1.Offering sports and leisure activities they were mainly outdoors and therefore viewed as safer and with less restrictions. This would help resolve issues with parents/carers differing altitudes to covid safety and ensure 2m distancing between family units 2. If families still require support to build their confidence to engage with the wider community we can hold smaller groups, and again emphasise the outdoor aspect. Additionally, it was highlighted to us that families like the opportunity take part in activities as a family unit as this was a rare opportunity in the wider community as inclusion barriers usually prevented this. These issues formed our application to Better breaks for 22/23.
50 children and young people will have taken part in in a range of creative and sporting activities and outings, made fully accessible to their needs.
To meet this outcome, we delivered 16 peer support groups and 2 -day trips in the wider community for Children & Young People aged 8-18 (C & YP) plus 2 trips for the entire family unit and 4 family support groups. All online or physical groups were accessible and designed to suit the needs of our C&YP. 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 i.e. archery. Making links with other C&YP with a shared dialogue is invaluable for building a sense of understanding and belonging, confidence and an essential sense of community to assist in building emotional resilience for young people but also for their families.
The young people involved in the project were able to continue friendships and build new connections with their peers in not just a face to face setting but online too. "A" was very shy to begin with, enjoying the company of others but finding it difficult to voice her opinions in a group setting, as the project began using zoom for online groups "A" began to actively become more involved, she attended every online group and fully participated in the quizzes and games. Mum said that she ‘was shocked how much she enjoyed and fully participated in these sessions and has seen her confidence grow’. When it was time to come together face to face, her confidence continued, her sense of humour had everyone laughing and she is now a very self-assured young lady who was the first to suggest an outing to the cinema which she would never have done previously. For "A" a hybrid mix of online and face to face groups suited her. Feedback from her mum was very positive and she stated that without the online groups continuing contact with her peers during covid, she wouldn’t have grown into the confident young lady she is now. Additionally, looking at the group as a whole, the adventure day felt very special, as to be able to try new activities such as archery and axe throwing has built their friendships closer. We have noticed that the support they show to each other is heart warming and demonstrates they have made emphatic and caring connections.
89 carers of young people with spina bifida/hydrocephalus will have engaged in peer group support with other carers who have shared experiences.
To meet this outcome, we delivered 4 peer support groups for all in the family unit and organised 2 day trips for families. We also provided intensive respite weekly support to two families (referred to us by Social Work due to extreme vulnerability) and adhoc 1:1 support to another 10 families. During the initial lockdown, parents were catapulted into having to deliver all personal care and manage their child’s health needs 24/7 and therefore respite was a priority to them. As a result of the project activity carers have experienced much needed respite, bonded and became a great support for each other. They are cheering each other on and even arranging child free social events with each other. We have been able to facilitate new friendships and support that is sustainable and lifelong for carers. Total of 67 family units (101 carers) have benefited from the wide range of activities offered including 1:1 support. 42 family units assessed the Dream Night and National Trust Tickets.
This project has given parents and carers a break, whether for a couple of hours or a day to themselves. This seemed especially important following the restrictions placed upon families. Some went for a meal, some did their shopping alone but the most feedback from the parents and carers was that when they dropped their young people off at the group they went for a coffee together, to share their thoughts, experiences and worries with families who understood. One parent said ‘It was just so good to properly talk to people who get it again, I certainly missed that’ The adventure day meant that families were able to spend time and do something fun with their 2 younger children whilst their child with hydrocephalus and their older sibling were in ‘safe hands with people who understood their needs. "There's no other time that that has been possible – ever"
89 carers will have more information about accessible leisure & support activities and short break opportunities available to them.
To meet this outcome, we provided 2 information sessions tailored to carers’ needs (on continence) and shared information regarding appropriate activities, respite and short breaks. Information on all aspects of SB/HC was made available. 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 carer are able to develop a social network with others who have an understanding of their journey. Carers report that they are less isolated.
"C" has spina bifida and severe anxiety and has had a recent diagnosis of Tourette's syndrome, whilst coping with the new diagnosis and managing spina bifida symptoms "C’s" mother became ill which left her in hospital for 5 months. During this time "C" was supported individually, either a walk in the park or a catch up over zoom. "C" needed a quiet space outside of the family to talk about her feelings to someone who she trusted just to listen. Dad became sole carer to both his child and wife overnight. As well as individual support, we were able to help practically with transport bringing her to groups and outings when Dad physically couldn’t be in 2 places at once. Dad has since said ‘ it was such a relief to know "C" had someone who she trusted and who she could talk and could still meet with her friends – it meant a lot to her and helped me to care during a challenging time.
50 children & young people and 89 carers will have the confidence to plan their own short breaks.
All 67 family units were informed about heavily subsidised respite breaks at Rebecca Cottage (SBH Scotland's specially-adapted cottage) and offered tickets for national trust/Blair Drummond to enjoy as a family. 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 or circumvent problems which may otherwise result in crisis.
"D" has spina bifida, hydrocephalus and epilepsy and had been engaging face to face with group activity for a number of years. Unfortunately during the pandemic he was unable to tolerate any online activity, in his words ‘it's too weird'. His Mum has fed back to us that he struggles with the dynamic and gets upset at not being able to be with his friends. Half way through the project "D’s" family broke down and he has found this very very difficult. Changes within his support network had a negative impact upon "D" at home and at school. We attended multidisciplinary meeting to ensure we could support "D" in the best way we could. This resulted in us providing 1:1 weekly support for "D" as he knew us well and in turn allowed mum a respite break which contributed to their wellbeing as a family.