A story by Spina bifida Hydrocephalus Scotland
We provided monthly family support groups for families with children affected by Spina Bifida and/or Hydrocephalus in 3 localities across Scotland.
We provided fully accessible play and support for the children whilst parents/carers had a break from their caring role and time to get together with others with shared experiences.
What Positive Connections did
Groups were run monthly throughout the year and advertised to families via our magazine for all on our database, via word of mouth during attendance at NHS specialist combined clinics for Spina Bifida in each of the 3 localities, family to family recommendations and via social media.
The Aberdeen Group took place at Mile End School and Community Centre, the Cumbernauld group at SBH Scotland Centre, the Dan Young Building and the Edinburgh Group initially were meeting at Greendykes Family Centre and latterly set up at a new venue, Goodtrees Neighbourhood Centre.
Christmas parties were also laid on at a hotel in Aberdeen and at Craighalbert Church, Cumbernauld for families to enjoy. Children and siblings enjoyed multiple activities including arts and crafts, music and drama, relax kids session, baking, a “chill out” session for teens, team games and a multi sports session.
Activities were themed each month and specifically tailored and adapted to the children’s interests and needs. The children also enjoyed outings to Safari Park, Zoo, Deep Sea World, and Hoodles Playbarn. During the monthly groups parents were able to get together, build trusting friendships and talk, relax, laugh and share experiences together knowing that their children were safely cared for and enjoying themselves.
In response to the themes of their discussions we arranged for speakers to come to the carers group to provide information and support about a wide range of subjects including continence management, funding, self management and access to local accessible activities. Carers also used the time to share top tips with each other specific to their children’s conditions. At each group support staff from SBH Scotland were there to follow up any specific support issues for each carer, and to also provide all the practical support of a comfortable environment for carers to give them a true break from their daily role.
A support worker from SBH Scotland family visited the family at home, introduced play activities for Joshua that were accessible to him and his parents and established a trusting relationship with the parents. Having established a good relationship the support worker introduced them to the idea of attending the group and they were delighted at the prospect having struggled to access anything outside of their home before. The group offered them all the benefits of meeting families in similar situations, attending the centre which is fully adapted for wheelchair users as well as giving Joshua an opportunity for interaction with other children.
Before the group involvement the family felt very vulnerable and isolated in terms of where they could go as a family, where they would feel accepted and have activities which were suitable and accessible for the whole family. Transport was a challenge for the family but as the group took place on a weekend they were able to organise and plan another family member to take them to and from the group as well as invite them along which in turn gave them a chance to come out as an extended family.
The experience of coming to the group gave the parents confidence that they could go out as a family and access experiences as well as getting a break from their caring role knowing that Joshua’s needs were taken care of. They experienced a group outing to a Safari Park for the first time along with Joshua’s grandparent. The whole family had a great time and enjoyed meeting families from all over Glasgow, telling their stories as well as getting advice regarding equipment and funding for Joshua.
This also gave other families the opportunity to talk to Joshua’s mum who has lived with the conditions Spina Bifida and Hydrocephalus all her life and talk about the successes she has had but also some of the areas in her life where she feels she needed a little more support. Since the groups the family have made links over social media with other families and continue to share stories and advice via Facebook. The family have shared how they feel part of the charity “family” now and feel like they are able to be involved in a group that accepts their family as a whole. They feel as though they always have something to look forward to each month and know it will suit their needs and abilities
Coming to the group they were in the company of parents who all do ISC and for whom it is a normal part of everyday life. They were able to discuss their feelings and to hear from others how they too had felt apprehensive initially but soon felt perfectly at ease doing it. They also heard how other parents have found trusted family members or friends who have been willing to be trained to do it also so that they could be freed up to have a break from their caring role and/or prepare their child for managing personal care at nursery/school. The support from other parents who had been through the whole process was immensely helpful for Aaron’s parents and they said that without the support of the group they doubt that they would be at the stage they are now where both parents have built confidence and skills to manage Aaron’s personal care needs and are beginning to entertain the idea of training a close family member so that they may be able to have the first night out together since Aaron was born.
Aaron himself has a very close attachment to his Mum and preferred her to stay by his side at all times. He loved going into the children’s groups but preferred Mum to stay with him, and it took time for him to build trust to let Mum go through to the parents group without him. As has no movement from waist down Aaron could not get himself around the toys and activities and had tended to be on Mum’s knee. At the group he saw other children in wheelchairs whizzing around and a pre-school age child with a miniature wheeled chair called a Zip Zac which meant they could whizz around at floor level and make choices themselves about which toys and activities they wanted to play with.
Wheelchairs would not be provided by statutory services until Aaron is older but inspired by seeing the Zip Zac in action his parents realized Aaron could have greater independence if they sourced something like this for Aaron. SBH Scotland helped them to source funding and Aaron got his first wheels. His confidence soared in the group and he became happy to let his Mum go through to the parents group while he joined in with the other children, able to get himself about and fully participate in the play and activities.
Until recently they had always had to go to different activities, Mum with Ishbel to one activity and Dad and Euan to another, separating the family and causing tensions in their caring role. Through the group they were able to attend activities as a whole family and found out about an off road trike that would enable them all to join in the outdoor activities that they all enjoy. Following on from information learned at the group they sought out riding lessons and applied for funding to purchase the off road trike. Euan was delighted when he saw the trike because it means they will be able to do more outdoor activities as a family.
Euan made a friend at the group, another sibling who knows what it is like to have a sister with Spina Bifida and Hydrocephalus and the different experience of being a young carer. They enjoy chatting and playing together at the group and feel at ease with each other and both say it’s great knowing someone who has similar experiences. It has boosted both of their confidence and they feel empowered to speak up for themselves more and join in the activities.
What Spina bifida Hydrocephalus Scotland has learnedWe have learned that the family groups are pivotal in building the circle of support for families to build resilience going through their early years and into teenage caring for a child with Spina Bifida and/or Hydrocephalus. The connection that families feel through the shared experience means that they really value the tips, information and coping strategies shared by people who truly understand their circumstances.
SBH Scotland facilitates the group and provides the nurturing environment for carers to have respite, whilst enabling them to form lasting connections that will help them support each other. The value of these connections is very evident, particularly when a child becomes ill or a family faces challenges the other group members rally round and support them and share helpful tips throughout.
The difference the fund has made for our organization is considerable as it has meant we have been able to reach more families who were isolated, including those in more remote and rural areas. We have been able to help them to establish a supportive network as well as exposing them to a wider range of options for their child in terms of equipment, funding, play opportunities and resources to increase well being.
We have also learned that some families may need time to build a trusting relationship before they feel ready to join a group and we have invested additional time out with the project to work with isolated families building relationships and introducing them gradually to the valuable network and respite of the groups. On a practical level we have learned that transport can be a challenge for families in more rural areas to attend groups but SBH Scotland staff have supported some carers to access funding for driving lessons and apply for DLA to secure financial support with mobility issues to increase potential to access other activities outside of the group.
The Edinburgh Group posed particular challenges due to issues with the availability of the venue and cancellations occurring at short notice. The momentum of the group was destabilized due to these uncertainties and coincided with a period of change in the group as core group members’ children were reaching late teens and “growing out” of the group at that time. Time has been invested in building trusted relationships with younger families and the new venue has proved a great success.
Our service has been personalized in the sense that SBH Scotland staff have specific knowledge of the children’s conditions and by providing support for the whole family give respite in its broadest sense to all around the child. The hidden aspects of Hydrocephalus are accommodated in the groups for example the majority of children with Spina Bifida and Hydrocephalus find change difficult and take time to adjust to new things so providing consistency of staffing has been key. The families themselves have shaped and informed the choice of speakers and activities so that they can take the lead in terms of what information and support is most beneficial or timely.