Summary
We provided monthly family support groups, fortnightly playschemes, and monthly preschool groups for babies, children and young people in the west of Scotland affected by the lifelong disabilities of spina bifida/hydrocephalus, as well as their carers and siblings.
What Be All You Can Be did
We delivered the following groups:
• 10 family groups
• 13 preschool groups
• 29 afterschool play-schemes
Activities delivered included:
• Spring group: included an egg & spoon race and an egg hunt
• Teddy bears picnic
• Messy play group:
• Bowling: bowling can be a costly outing for our families
• Inclusive cycling: introducing carers to local activities that are cheap, and accessible.
• Cumbernauld Victory Mile and Family BBQ
• Halloween party
• Christmas panto
• Spiney the Diney party
• Picnic on a barge
• Bingo
• The Animal Man
• Soft play
Groups take place at the SBH Scotland Centre in Dullatur or at soft play or specific location. Families we are already engaged with attend the groups and we get to know knew families through the helpline, referrals or at the spina bifida clinic.
Carers take part in the activities with the children or use the groups as an opoortunity for respite and to catch up with the other carers and are able to benefit from shared experiences.
Overall, the groups continues to be a success with the help from better breaks. We are able to deliver exciting new experiences for families as well as facilitating a safe environment for the children to explore and thrive. We ensure all needs are catered for and aim to ensure everyone feels included and respected. We do have some families who are unable to attend on occasions due to the location and public transport links. We try our best to run outings so they can attend, however, as our group is growing, it can often be difficult to hold an outing to accommodate the numbers. Many of our new parents experience isolation as well as confusion around conflicted information about the conditions. Our group provides a support network for the families as well as an opportunity to meet and socialise with likeminded individuals who have had similar experiences.
Some older children have graduated up to the next age group, the children currently at the playscheme have more sensory-based needs and respond well to a more relaxed session full of music, dancing and bubbles. We have acknowledged this change and adapted the sessions to be more child-led.
What Spina Bifida Hydrocephalus Scotland has learned
SBH Scotland have learnt that it’s important to let the groups evolve and run naturally by listening to the families and what their needs are. We always know what our outcomes we have set and how they can be achieved but we cannot plan every detail. It’s important to let the session be child led and to follow the group dynamics. It’s also important to review the groups often to ensure we are delivering this part of our service in a meaningful way and that outcomes are being met. We want as many families to benefit from our groups and to do so, it’s important to always be evaluating and checking in with families.
How Spina Bifida Hydrocephalus Scotland has benefitted from the funding
SBH Scotland is almost entirely self-funded. Our groups are lifelines for many of our families and are only possible thanks to the generous support of funders such as Better Breaks. We are delighted to have secured continuation funding from Better Breaks for another twelve months and hope to use this funding for more outings and guest practitioners, such as therapy ponies. We know this helps to engage the families.
Project Outcomes
Outcome
29 children in the central belt will have taken part in a range of creative and sporting activities made fully accessible to their needs.
Results
All groups fulfilled this outcome. CYP were provided a variety of groups and activities to socialise with their friends and to develop new skills. All groups were accessible and designed to suit the needs of our CYP. The result of this was that beneficiaries felt a sense of inclusion, had a greater positive outlook in life and for their future, as well as more knowledge on the world around them and coping strategies when barriers present.
Case study
We have a little boy who has a Global Developmental Delay. He is non-verbal and communicates through use of Makaton and typically, raising his voice. Mum finds it very difficult to engage him in activities as home and he often reacts with a negative reaction to communicate his needs. When he attends the after-school club, the support worker and mum have together developed a strategy to encourage him to put his iPad on charge as he is now at group. As the child is unable to play independently, the support worker will ask him where he would like to explore and takes him there and assists. He thoroughly enjoys the singing, races, parachute and books. The support worker has also been learning Makaton to aid his communication and encourages the other children to give it a try. This group enables this child to have a fun club to attend where there is an overall understanding from everyone of what his needs are as well as his limitations. Mum doesn’t need to worry about his reactions as all attending are experiencing their own journeys and have a level of understanding. Our groups are designed so carers and children don’t need to leave or feel embarrassed when their child’s behaviour changes and that by showing the child respect and that he is a valuable member of our group, he can participate and feel safe and a sense of achievement.
Outcome
45 carers of young people with spina bifida/hydrocephalus will be engaged in peer group support with others who have shared experiences.
Results
By attending our groups, carers are able to develop a social network with other carers who have an understanding of their journey. Carers feel less isolated by having a group to join and aren’t feeling less alone in their journey and experience. Many of our carers comment that they don’t attend local community groups as they feel ‘out of place’ and fear judgement from others if their child doesn’t meet their milestones. Our groups create that safe space free from judgement where we are all equals. Relieving that stress and isolation helps carers to feel empowered and supported.
Case study
I recently received a call from a mum who has an infant who is 5 and half months. She has reached out to learn about groups. As we are currently living through a global pandemic, we are unable to run groups, however, by informing mum of what awaits her gave her a sense of relief knowing that there is a place for her and her child. She shared that she hasn’t attended any other groups with her child in fear that as the other babies grow and develop, her baby’s condition will become apparent. Offering her that reassurance and safe space instantly lifted her spirits and she shared how excited she was to attend. The group has its own closed Facebook group for those who attend. She has been added on, she has introduced herself and already, she is feeling a sense of community and belonging.
Outcome
45 carers will have information about leisure, support, education and short break opportunities available to them.
Results
As a result of groups, carers have bonded and became a great support for each other. Through social media, I have saw that families are starting to connect via Facebook and comment on each other’s post. They are cheering each other on and even arranging kid free social events with each other. This is a true success of our groups and by running groups, we have been able to facilitate new friendships and support that is sustainable for our families.
Case study
I have two single parents who I have been supporting. They hadn’t attended any groups as they don’t like to travel on their own via public transport. After speaking with both, I asked if they would like to be put in touch with each other to arrange travelling together. Both consented and were happy for this to happen. On the day of group, the two mums met up beforehand for coffee, travelled together and by the time they arrived at their first group, you would think they had been friends for years. Since then, they meet up for lunch, arrange playdates with the children and exchange gifts on special occasions. I have another mum in a safe haven who also wanted to attend groups but never showed up. I noticed she only lived a short walk away from one of the mums above. I put them in touch and now all three of the mums attend groups together and meet up out with the charity. Although they often take the children with them, they have shared that it’s great to have friends and to have a social life.
Outcome
45 carers will have information about leisure, support, education and short break opportunities available to them.
Results
By attending our groups, carers can share with one and another their experiences. They can also share their contacts and insight into who other parents should contact within each local authority. They are able to gain a wealth of knowledge from each other. Our groups run consistently therefore carers know they have a safe and reliable space to attend where they know they are well supported. Support workers can use time at groups to become that friendly face that carers typically speak to over the phone and we can develop a repertoire with carers to offer a bespoke support service that suits their needs.
Case study
A dad attended one of our family groups. I keep in touch with the family regularly although it’s typically the mum I speak to. Whilst at group, dad was able to have one to one time speaking with a support worker. He was having a general conversation with the support worker explaining issues the family are having with the child’s school and health. The support worker was able to offer some advice around this as well as give dad some information booklets to take away. Dad wasn’t aware that there was a solution to these problems and thought that this was just how life would be with a child with additional needs. By being at group and being able to have a face to face conversation in a relaxed environment, SBH Scotland were able to help offer choices to that family. Choices they didn’t know they had. Dad left feeling a weight had been lifted and felt empowered in making decisions moving forward. Sometimes families need that face to face contact as well as an informal setting to have these discussions. The group has facilitated both and in turn, helped a carer to feel empowered and more informed.
Outcome
45 carers will have information about leisure, support, education and short break opportunities available to them
Results
Although groups are led by the needs of our families, we suggest outings and activities which we think they may enjoy, which are accessible, and which are low cost (or free!). An example of this is the accessible cycling, which we know a few families continue to enjoy. We also enjoyed watching families build relationships with each other and made arrangements to meet outside of the group.
Case study
Amanda is a single parent to 3 girls. Amanda has health struggles of her own and as such is considered in the high risk category. Her middle child has Spina Bifida and Hydrocephalus requiring a shunt. Amanda and her girls have engaged with the charity since her daughter’s birth. Amanda’s family support worker has been keeping in touch with her most days on facebook, and ensuring she and the girls have everything they need during lockdown.
As a team we’ve been sharing useful resources to support children’s attainment during lockdown as well as fun activities and encouraging virtual sharing to support connections made. Our closed group allows for families to share pictures and stories of their day and bring the social connections they are missing safely into their homes. We’ve shared Blair Drummond animal talks live on facebook, accessible activities, some craft ideas as well as learning resources. Though we don’t know what the future holds, we do know we want to be there to help families navigate the uncertainty they feel around their health, safety, wellbeing and finances.