Summary
A residential weekend conference for families in the north of Scotland affected by the lifelong disabilities of spina bifida and/or hydrocephalus at Badaguish Outdoor Activity Centre. The fully accessible multi-activity weekend included talks for parents and opportunities to share experiences.
What Care to Talk did
Sixteen families from remote and rural areas of Scotland attended a weekend family conference. In the evenings they enjoyed family entertainment including quiz, bingo and accessible ceilidh to relax and get to know each other.On the Saturday the children were supported to try out lots of fun activities while the parents/carers attended talks specific to their needs and wellbeing. We invited all families known to us in the North and promoted the opportunity via families, allied health colleagues and our 1:1 support. We invited volunteer parent/carers to contribute to the project advisory group to plan and shape the weekend and worked with older teens and siblings 1:1 to prepare them for volunteering/mentoring at the event. We utilised local providers to deliver fully accessible activities so that participants could forge relationships and pursue those they particularly enjoyed after the event. We shaped the talks and activities according to the views of the advisory group and met with staff, volunteers and activity providers to brief them fully on the specific needs and aspirations of the participants. We specifically recruited staff support from specialist nurses and our direct services team who were equipped to deal with the children and young people’s complex personal care and learning needs giving parents/carers a rare respite from their role. The children and young people experienced archery, fire-building, accessible cycling and art in the company of other young people with similar needs, independently of their parent/carers, for many the first time. They also enjoyed wheelchair basketball and Highland games with their family on the Sunday, providing a rare level playing field for all to enjoy. The talks to parents included well-being awareness, talks from specialist health consultants and a talk from a parent and young adult giving guidance about their journey and transition to adulthood. All participants at the weekend thoroughly enjoyed it, left refreshed and invigorated. The weekend created memories, built relationships and inspired families to embrace the future with resilience.
What Spina Bifida Hydrocephalus Scotland ` has learned
The project reiterated the importance of building supportive relationships with families prior to the event and the need to incorporate the time and cost involved in ensuring engagement from families in remote locations. Those vulnerable families in most need of support needed intensive support to build trust and confidence prior to the weekend and were then able to participate and benefit from the weekend. We learned that there is investment needed in supporting/funding the pre and post conference support that maximises its impact.
The success of the weekend was considerably enhanced by the support from partnership working with allied health professionals who volunteered their time, activity providers and a shared and genuine commitment to making the weekend be the best it could be for families. The project advisory group helped enormously in ensuring that the programme was family centred and family led as the parent/carer volunteers shaping the planning acted as consultants on decisions made.
We learned that it takes full commitment from staff and volunteers over the weekend and their goodwill and willingness to adapt flexibly to families’ needs was pivotal in making it such a success. Ultimately, the staff resources are time and cost expensive but it is essential to have committed and experienced staff to ensure that parents/carers can get real respite.
We also learned that the little things and details make a big difference to families and it is worth putting in the hours of preparation to attend to these details as families felt truly nurtured as a result and maximised their respite.
How Spina Bifida Hydrocephalus Scotland ` has benefitted from the funding
SBH Scotland has previously held Care to Talk events in the east and north of Scotland, however the funding from Better Breaks allowed us to hold the weekend conference for the first time in the north of Scotland.
Thanks to generous funding from Better Breaks, we were also able to secure funding from the Edward Gostling Foundation and the Barrack Charitable Trust.
Project Outcomes
Outcome
Children and young people attending the conference:
• Will have built connections and friendships
• Will have access to more opportunities to participate in fun, accessible activities.
• Will have improved access & support to be able to continue activities they enjoyed after the conference
Results
The children and young people were matched with peers in small groups to build bonds and enjoyed a full day of accessible activity sessions including archery, fire-building, art and adapted cycling independently of their parent/carers who were attending talks. All personal care needs were met by the specialist support team and children were supported to find their individual passions and strengths so that these could be followed up individually in their locality afterwards. Younger children enjoyed sensory play, stories and outdoor exploration with dedicated crèche staff. All the children and young people also got to experience relaxed activities with their whole family over the weekend including a fully accessible ceilidh, a bespoke picture/sound bingo, Disney quiz, Father’s Day tug of war, Highland Games, meeting the Fire crew and engine as well as having inclusive taster sessions of wheelchair basketball with their family. Siblings took part in all the activities as well.
Case study
J lives with his brother and parents in a very remote part of North Scotland in a small village community where there is no other child who has a long term condition or disability. J and his family have learned to be very resourceful in overcoming the practical access and mobility challenges that face them with J trying to navigate and manoeuvre a wheelchair around an old and ill equipped infrastructure in their village. They have made ramps and taught J to ride a pony so that he can access more of the locality that way. However, the other sports clubs and activities in the area are inaccessible to J and he had become demoralised because he couldn’t keep up with his brother or peers. The bladder and bowel issues that J faces as a result of his spina bifida have caused considerable stress in the family with J not complying with the daily prescribed bladder management, causing much worry for his parents due to the potential impact on his kidney health. They live far away from any other families and had only had occasional fleeting contact with other families when J was admitted to hospital for operations and procedures. They were delighted to receive an invitation to the respite weekend and J and his brother were nervous but excited about meeting other children and siblings. On arrival at Badaguish, J and his brother were so excited to see the venue and to meet the family they were sharing a Lodge with. J relaxed really quickly with his new housemates discovering that they had the same level of mobility and were just heading off to do the same personal care that he has to do as part of his condition. Over the course of the weekend, J’s beaming smile became a permanent fixture as he got to try all the activities and discovered he has a natural talent for archery. His frustration at being slower than his brother and peers at home was distant memory as he got to drive a Boma all terrain powered 4x4 bike/chair and fulfill his dream of speed. J had never taken part at any local ceilidhs as he couldn’t keep up with the dances but he loved every minute of the Saturday night ceilidh as he joined in the laughter, fun and dances which were all specifically adapted to accommodate wheelchairs. The final activity of the weekend saw J and his brother having a thoroughly competitive game of wheelchair basketball and proved to be the pinnacle of the weekend for him as captured by his mum, “seeing the light in his eyes when he could compete on the same level as his brother at basketball!” Now that they are back at home, J has a newfound confidence to show others how to make activities accessible and is pursuing opportunities to do archery and basketball. He also has much better acceptance of his personal care regime now that he knows he isn’t alone and his parents have the support of others who fully understand who they can call and message freely about the day to day challenges.
Outcome
Carers will report an improved sense of wellbeing as a result of the conference and will feel that they have an improved network of support and information to equip them to sustain their caring role.
Results
Carers enjoyed the break from their caring role and had support throughout the weekend from staff to meet their child/young person’s needs for a minimum of 16 hours each. Talks and information provided over the weekend informed them about caring/life balance, accessible leisure, respite opportunities as well as practical and emotional support to manage day to day life. The talks included wellbeing exercises in identifying parents/carers passions and interests and exploring ways that they could bring these back into their lives. Parents/carers also spent the time together away from their children building strong and supportive relationships with each other and it has already resulted in increased contact and peer support on returning home. One of the talks was from a parent and her adult daughter who has spina bifida . Their talk gave parents/carers wisdom from someone who fully understands their situation and inspired them to recognise the importance of fostering independence.
Case study
One of the parents was really struggling with low mood and exhaustion prior to the weekend but as sole carer she was putting on a face for her children and getting no respite as her son B insisted on her doing all his personal care and had refused medication and not catheterised on the one occasion she went out for a few hours and left him with a trusted friend who was trained in his care. She also got no break during school time as she got frequent calls from school as he needed her to help with very unpredictable bladder/bowel issues. She was nervous ahead of the weekend as she thought she may have to come out of the talks to attend to him and would miss out on getting to know the other parents and hearing the speakers. Our support worker worked 1:1 with the family prior to the weekend to build trust and confidence and when the weekend came B was thrilled to meet the other children and enjoyed the fact that the youngest ones really looked up to him. His newfound sense of place and responsibility boosted his confidence and he joined in with all the activities wholeheartedly allowing the specialist nurses on our team to assist with any personal care as needed and did not ask for his mum at all. B’s mum was really empowered by the talks and thrilled that B had enjoyed himself and grown in independence. She had previously declined all offers of going out with friends because of the demands on her as a sole carer. After the weekend, she arranged two separate nights away with friends for herself for the first time ever, safe in the knowledge that B could manage and could build confidence and independence as a result. She treasured the experience of the weekend where she loved “meeting new friends and learning new skills”.
Outcome
Carers attending the conference will have been able to attend the talks over the weekend knowing that their children and young people’s needs are catered for. Carers will have had opportunities to connect with others with shared experience and will have increased access to resources and information
Results
Every parent/carer who attended reported significant improvement in their wellbeing and their children/young people’s wellbeing as a result of the weekend with an average rating of 90% improvement for carers and 94% for children. 100% of participants had built new friendships and relished the opportunity to spend time with other families who have similar experiences. Mental health and wellbeing was much improved with the carers being inspired by the speakers and delighted at how well their children and young people grew in confidence and independence over the weekend building friendships and trying new activities. Families embraced all the fully accessible and inclusive activities. They felt nurtured “by all the extra touches and thoughtful preparation” and enjoyed staying in the comfortable lodges fully catered giving them a break from domestic chores as well as their caring role. Older teens enjoyed taking responsibility for helping and mentoring over the weekend.
Case study
D is seven and is the middle child in a family of five; day to day life at home is very busy and involves his parents giving a lot of practical support to D with personal care, catheterisation, medications, appointments, tube feeding, lifting and transfers as well as managing his anxiety, processing difficulties, attention deficits and sensory issues. His parents try their hardest to make time for all three children whilst Dad also works long hours to keep things financially afloat. On an average day they are all facing a lot of conflicting demands and with D’s complex needs there can often be sudden complications meaning family plans have to be postponed or cancelled to attend hospital instead. D’s siblings are very used to having to tag along to appointments for D or having to forego some opportunities as they aren’t fully accessible for D. D’s parents are very conscious of the impact on all three children and often have to do activities separately with different children and often miss out on time together as a couple due to the demands of day to day life . The family had attended one weekend away with another charity when D was a baby and found it such a tonic. However, prior to the Care to Talk weekend, they had had very little respite and were demonstrably weary. They were very excited that the family conference was happening and said it couldn’t have come at a better time. With the toll of life without respite they arrived at the venue on the Friday evening stressed, tired and downbeat. D’s mum sums up how the weekend turned all that around for them, “just a great big thank you! These weekends are a gift. They have a huge impact and we carry these experiences with us for long after the event. We are so very grateful for the opportunity afforded to us. For the fellowship, support, adventure, fun and sharing. For the advice, the reality and the care. We are energised and full and ready to take on whatever the world throws at us! Each of my children had their own experiences as the care they received was tailored to their individual needs. I have seen each of them grow in different ways and take on challenges that they might usually not be able to - either through opportunity or through a lack of confidence. It's not often they can participate in activities without their parents being present but it's a life skill that promotes the independence that they will need in life. This in itself is an invaluable blessing. Many things that seem so small can have a profound and lasting effect. This is one of those.”
Outcome
Carers will report an improved sense of wellbeing as a result of the conference and will feel that they have an improved network of support and information to equip them to sustain their caring role.
Results
Parents all reported that they had built meaningful, positive connections over the weekend with other carers who understand the challenges they face. The opportunity to get together in the relaxed social setting of the evening entertainment as well as mealtimes and in their lodges boosted the strong connections built when they shared the day together attending the talks and discussing the wellbeing topics with each other and the speakers. Parents shared tips with each other on strategies for support and have continued to reach out and offer each other support since the weekend. The activity providers each demonstrated how to make more activities accessible and inspired more families to seek out activities and support in their locality. The venue itself showed families that there are accessible holiday and respite options. Having made strong bonds over the weekend families also have more confidence to reach out over phone or social media to each other, reducing isolation.
Case study
Prior to the weekend, S, one of the parents who has battled with mental health difficulties was feeling overwhelmed and anxious about upcoming surgery for her son and was particularly nervous about meeting others. The talk that was given by Kirstie, a parent/carer and her adult daughter Meggan who is a wheelchair racer was a catalyst for significant change for S. Our support worker had visited the family prior to the conference and taken the story book SBH Scotland had published based on Meggan’s story and when her son got to meet her after reading the story they were all thrilled and inspired. “I loved the talk from Kirstie, who was so open and honest and to see the amazing woman Meggan has become following all the struggles at the start has filled me with so much joy and hope for a happy future for my son” After the afternoon well-being session, S said she felt that it “reversed all my negative thinking and I feel completely different about going to hospital now! I can do this!” and the benefits of the weekend for her were “had the most amazing weekend away in Badaguish with Spina Bifida Hydrocephalus Scotland ... Thankyou so much to everyone involved in a fantastic weekend. We had the absolute pleasure of meeting Meggan Dawson-Farrell, wheelchair racer, an amazing inspirational woman…. This weekend was just what we needed and I cannot thank everyone involved enough, it was all AMAZING!!”