Be All You Can Be
A story by Spina Bifida Hydrocephalus Scotland
Be All You Can Be project provided monthly family support group, fortnightly playschemes and a monthly preschool group for babies, children and young people affected by the lifelong and complex disabilities of Spina Bifida/Hydrocephalus, as well as their carers and siblings.
What Be All You Can Be did
Activities included, Zoo lab Halloween Zoom on the Broom - 2 sessions 8 families engaged, online bingo for carers - 3 engaged, Zoo lab Christmas theme 2 sessions 8 families engaged, 24 families were bought and sent a link to enable access to watch Purvis Puppets production of Cinderella at home reading and activity packs were sent out to a sub group aged 3/4 to encourage non online engagement.
23 packs sent out - included 4 books, 5 activity sheets with instructions, drawing paper, colouring pens and display book regular contacts with families and general support work with these new families - nursery talks and DLA's Online Bingo this week – intended for carers but whole families got involved Online Book reading.
Easter packs sent out to families included, Easter egg hunt on Zoom, Singing Kettle online. Plant your own sunflower kits sent out to families including activity sheet. Music workshop online held by Amy from Music in Hospital and care. 3 sessions have been held in April may and last one at the end of Jun
The pandemic has made it very difficult for carers to get a break from their caring role with services moving online and schools nurseries closed. Karen has found that regular phone calls with carers has been very well received and she puts aside 1 hour slots to catch up on a regular basis. Some carers benefit from weekly calls others fortnightly and monthly.
Successes - Engagement of the new families (9) Jan – March,
• phone calls have been the best form of contact for Karen to get to know families and build good relationships
• In the last 3 months we have another 3 new families, 2 of which are babies.
• Sending the children packages since Jan has been really well received,
• Families have been so resourceful with the activities we have sent
• Staff changes, takes time to get to grips with new roles and introduce to families
• Online engagement appears to be low, Feedback from families is that the kids are young to concentrate on a computer for too long, they are having to do it for school learning, devises are being shared, busy busy households.
• Peer support difficult online
What Spina Bifida Hydrocephalus Scotland has learned
Firstly that physical contact is so important, being in the same room brings a connection that cannot quite be replicated online. The groups are so important to these young people, the peer support from others that understand them is irreplaceable. Feedback about groups starting again has been positive ' K cannot wait to meet up with everyone again' 'P can’t wait to get back to the group and see everyone again. She has really missed the group' 'S as you can imagine would be over the moon if the groups would be back in the centre. He has missed everyone so much lately. So I think he would love to come along and hasn’t stopped chatting about it'
We learnt that technology doesn't suit everyone, whilst it is incredible and has enabled us to remain in contact with families regularly, some people find it very awkward, difficult to understand and 'too weird', emotionally, the change was just too much for some of our young people. Luckily we didn't have any families who were not able to access technology if they wanted to but some found it overwhelming.
Phone calls worked really well at keeping in touch with parents we found emails could get lost, with parents getting swamped with emails from school and work but a call was a chance to speak to someone else outside the family and was always personal and supportive.
How Spina Bifida Hydrocephalus Scotland has benefitted from the funding
The funding allowed us to continue to support families during what has been an isolating time for them. SBH Scotland's fundraising was reduced by almost 50% and we are hugely grateful to have the support of organisations such as Shared Care Scotland. and The Short Breaks Fund.
32 children in the central belt will have taken part in a range of creative and sporting activities and outings, made fully accessible to their needs.
Although outings were not possible we continued to engage families and sent activities that the whole family could take part in.
Family C have enjoyed the books and activities, they enjoyed that there was no pressure to ‘finish’ anything in a specific time, this meant that children are choosing what they like and doing it in their own time. Mum said “C did ‘Mirror Mirror‘ and ‘my toys are hungry’ activities which he has enjoyed, not sitting long enough to complete the others as yet but definitely getting better”
58 carers of young people with spina bifida/hydrocephalus will have engaged in peer group support with other carers who have shared experiences
Peer group support was difficult as carers were always with their children. At the 'in person' groups carers meet separately. However, we continued to support carers via telephone and social media.
B is 4 years old and has a significant weakness in the right side of his body, B has loved the activities that we sent to him mum has noticed an improvement. She said that “ He’s been loving it. He is more badly affected on his right side. Throughout the be all you can be, B has been trying his best to use both hands. It’s difficult for him to use his right side, playing like this has helped.”
58 carers will have more information about accessible leisure and support activities, education support and short break opportunities available to them.
Although leisure and support services were closed we kept in touch with families and suggested activities they could take part in at home. We continued to provide education support and liaised with schools and nurseries on behalf of the families.
Family E enjoyed the time together watching/interacting with the singing kettle online, Parents and kids being able to do something together throughout lockdown has helped too” It was brilliant, D and his brothers really enjoyed it thank you for letting us be there xxx”
58 carer and 32 children and young people will have engaged in peer group support with others who have shared experiences.
We continued to offer online groups and although engagement was low at times we continued to offer 1-1 support and offered activities, such as Music in Hospitals.
A has always reacted to sounds more than anything else and so he has lots of noisy toys at home. when A’s family received the book pack in the post their first thought was that A wouldn’t get much out of it. A has books at home but tend to throw them away if he’s read to, he just couldn’t concentrate on them. Inside the pack there were activity sheets, colouring pens, paper and games to go with the books as well as links to the books being read on YouTube and this really made a difference. Mum said “he is now sitting down with the book and turning pages, something that he hasn’t been interested in before, didn’t think he would do this as he is still so focused on the noisy toys, he is more engaged with the books, he isn’t flinging them away”