Everything we do at Spina Bifida Hydrocephalus Scotland (SBH Scotland) is about supporting families to be able to thrive in the future. We support people who are affected by the lifelong conditions of Spina Bifida and/or Hydrocephalus whether they are living with the condition/s themselves or are a parent, carer or family member. SBH Scotland has been working with families across the lifespan from antenatal diagnosis through to older years for over 50 years now. We can therefore tap into the wisdom of parents, carers and adults who have lived with the conditions for many decades. The generous insights of those who have lived with these conditions for many years have helped us to better understand what families need in order to thrive in the longer term.
Like all charities, during the recent pandemic and ensuing restrictions, we have had to change and adapt our ways of delivering support including facing the challenges of virtual support. With the pre-existing network of families known to us we have really benefitted from being able to use the “scaffold” of knowledge that older families can share and pass on to help younger families towards better health and wellbeing.
Thanks to the wisdom of families with lived experience we have also been able to better understand the opportunities and challenges for inclusion and participation growing up as a child with the long term conditions and transitioning into adult life. The stories we hear from older generations highlight societal changes in perceptions of disability and understanding of inclusion. For example a generation ago many children and young people with Spina Bifida and Hydrocephalus were not placed in mainstream education as there was less understanding of neurodiversity and strategies for learning. Now that there have been shifts in society’s perception of “difference” we recognise that there are better opportunities for families to be able to have the support they need to thrive and to be able to celebrate difference as a strength.
Learning from this we know the importance of helping families to build connections to have the tools to voice their needs so that they can build resilience and wellbeing for the future. For some this can be setting up introductions with others who have similar experiences and for others it may be more about building the connections with agencies and sharing insights to ensure everyone is well informed and open to adapting and diversifying so that families can thrive. In the Covid climate many of these introductions have had to be online or via closed social media groups but the potential to reach a wider circle of families, professionals and agencies online across Scotland has cut through some of the geographical barriers to inclusion.
The approach of “I may not have the answer, but I can find someone that can help” runs deep through our organisation. The network of families who have been through shared experience gives great strength for newer families bewildered in the early stages by a new diagnosis or facing a new challenges in the many transitional stages of life with a long term condition.
The insights from older people living with the conditions have taught us too many things to list here but primarily we have learnt that nurturing and supporting independence, mobility, friendships and emotional wellbeing in the early years is really important for future wellbeing living with long term conditions. We have also learnt how important it is for those involved to know and learn about the invisible aspects of living with long term conditions; the emotional literacy that is needed; and the understanding of neurodiversity and strategies to bring out the best potential for each unique individual. To help facilitate this, alongside support to families we talk to nurseries, schools, employers and agencies involved with a family to help with strategies for inclusion specific to the child’s needs. We have learned from families that inclusion and positive participation begins in childhood with a sense of autonomy, self-belief and responsibility and that these need to be nurtured from the earliest stage. If these are fostered, along with a supportive environment and positive relationships, participation and inclusion throughout life can be enabled. Our aim, to establish an environment that allows families to thrive into the future by embracing difference, thinking creatively and being resourceful.
If you would like any further information or have any comments please feel free to contact Sophie at firstname.lastname@example.org