£1k to Shine in Cornwall – in their own words…
Before the Second World War, children born with spina bifida and hydrocephalus were not expected to live much past infancy. Medical advances and new surgical techniques started to change all this. The conditions began gaining more attention in the late 1950s and early 1960s and major treatment centres became established in Sheffield, London, Bristol, New York and Melbourne.
A letter was published in the Manchester Guardian in 1964 inviting people concerned with spina bifida and hydrocephalus to attend a meeting led by leading health expert, Bob Zachary. Most of the attendants were parents of children with the conditions who had never had the opportunity to meet others in the same situation as themselves. Around 15-20 of those in attendance offered to volunteer their time and a number of support networks were subsequently established in various locations.
Encouraged by the response, Bob, along with other health experts decided to forge ahead with plans to establish a centralised support and information network, which would become known as the ‘Association for Spina Bifida and Hydrocephalus’ (ASBAH).This was formalised in October 1966 and has since witnessed ground-breaking discoveries and developments, such as the proof that folic acid deficiency can lead to neural tube defects, which has had an impact on the prevention of spina bifida.
With medical advances, those with the conditions are living into older age for the first time, which means there is more reliance on Shine to help people of an older generation to cope with the challenges that ageing with spina bifida and hydrocephalus brings. Numbers of those affected by hydrocephalus are steadily on the increase, and as yet there is no clear cause or cure for the condition.
Holly has spina bifida and her Mother says, “whatever you do don’t hide away, speak to somebody. Now we tell everyone about Shine”
Almost all of Shine’s 11,000 members have been severely disabled since birth. Many were born with a split in their spinal cord (spina bifida) causing paralysis. Others have brain damage caused by an excessive build-up of fluid in the brain (hydrocephalus). Some have both these conditions and hence face both mobility problems and learning difficulties. Good health is the most important factor to our members’ quality of life, mental health and overall well being.
Cornwall facts and figures
Day-to-day tasks such as using public buses and scheduled transport are difficult and often distressing for our members with mobility issues and learning difficulties. As a result, people in Cornwall can be particularly cut off and disadvantaged by the long-distance travel required to access other parts of the country.
We currently have 206 members in Cornwall. Many members experience poor mental health related to coping with physical pain and their cognitive issues. Our service is here to help make a discernible difference and members’ lives a little easier. It includes access to our specialist health and education advisors who are experienced in providing expert support unique to individuals with these conditions. Shine provides lifelong support right from diagnosis, which is commonly at their second scan before birth.
“I found out that my baby had spina bifida when I was 20 weeks pregnant. I was in shock. I couldn’t eat or sleep. I withdrew and felt hopeless as if I’d failed. My Mum found Shine’s number and I spoke to our local co-ordinator who chatted everything through including the practicalities around catheters. I went along to the local ‘Little Stars’ support group for families. It was really helpful to see what to expect. I felt clued up so that I was prepared when the baby was born. I don’t know how I would have coped without the support”
Shine member and mother to Poppy
A family meet-up day
Our work covers a wide range of issues from helping a new-born baby with the conditions to settle at home to helping with developmental transitions e.g. learning to talk. There are a number of challenges as a child with the conditions grows e.g. many children with spina bifida may need a wheel-chair as they grow, unable to support their own weight.
The case study below provides an example of the holistic service we provide to our members, to address their health needs and to improve overall quality of life:
“I was put in touch with a gentleman, Philip, with spina bifida who had moved into a flat in Cornwall. The conditions of his residence were awful. There were steps leading up to his front door so he couldn’t get his wheelchair in and out of the apartment. His cooker was broken and the landlord wasn’t responding to his complaints. Added to all this, he found out that he was getting charged for his upstairs neighbours’ gas and electricity.
In addition, he had no carers and was struggling to have hot meals and to manage his own personal care. He had lost confidence in care agencies and wanted to be independent but his limited education about catheterisation had caused a number of infections. Philip wasn’t the type to ask for help but it was clear he wasn’t managing well.
I had an assessment with Philip and quickly realised that he needed extra support. I got onto the local council and housing association and after a hard slog, Philip was rehoused within three months, which is unheard of. I also helped him to get a care package that he was comfortable with and I referred him to a spina bifida clinic to make sure he was getting the right advice.
His health and well-being improved significantly once all the changes were made and he was so grateful to Shine for everything we did for him. I still have a strong, trustful relationship with Philip. He was overwhelmed that a charity had done so much to help him”.
Support and Development Worker, Shine
An adult social group celebrating good times together on a day out. John, front right, said, “I used to travel everywhere on meet up days in a pre-booked taxi with wide access for wheelchairs. I have become very confident now using public transport thanks to support from friends within the group”
Shine’s Support and Development work in Cornwall is literally a lifeline to our 206 members. We with the local charities Cornwall Welfare Rights, Contact a Family and Cerebra. Shine also receives direct referrals locally from Consultant Neurologists and Portage Workers from Kernow Clinical Commissioning Group.
Shine’s Support and Development service in Cornwall is tailored to the individual to meet their health and wellbeing needs. They offer expert health advice, referrals to specialists, school visits to help children with spina bifida and/or hydrocephalus to feel included, skills and mental wellbeing workshops, organise informative health events, arrange peer support groups and social meetings for members, help people to access transportation, aids, adaptations, housing and benefits. Our local work provides a holistic service tailored to meet individual needs so that our members can live happier, healthier, more fulfilled lives.
The cost to deliver this service is £10,578 per annum. We are very grateful for the contribution of £1,000 from The Duchy Health Charity.
How Shine Cornwall deliver their service
We often receive queries by telephone, which are resolved as best as possible. At this stage, a Support and Development Worker will be assigned to the member and will arrange to meet the individual somewhere convenient and local to discuss their needs face-to-face and to see how Shine can best help them.
Depending on the needs, we can arrange more social opportunities by way of our own peer support meetings and social media groups. We put members in touch with others affected by the conditions to alleviate feelings of isolation. We can refer individuals to health specialists to ensure they’re informed and getting the care they need. We can help with applications for benefits or regarding housing etc. and if needed we
liaise with local organisations to make our members aware of any local opportunities they could benefit from.
– We will provide support to at least 30 members in Cornwall over the coming year
– We will help resolve at least 30 general enquiries from members in Cornwall
– We will run an event in 2018, which will benefit members in the South West
– New links with local organisations/individuals will be built in Cornwall by end 2018
Health gains to the County of Cornwall
The health and wellbeing strategy for Cornwall hopes that ‘People in Cornwall will live longer happier, healthier lives and good health and wellbeing will be everyone’s responsibility’.
The long-term outcomes that this strategy aims to achieve are
-Helping people live longer, healthier lives
– Improving the quality of people’s lives
– Fairer life chances for all
Our service helps people to live longer, healthier lives by
-Providing expert health guidance
– Liaising with hospitals and specialists to meet the needs of our members
– Holding Shine40Plus events giving members information on ageing
We help to improve people’s quality of life by
For more information www.shinecharity.org.uk
-Holding mindfulness and wellbeing workshops
– Organising peer support groups which give our isolated members a social outlet
– Helping members to understand/manage conditions to the best of their ability
We help to give fairer life chances for all by
-Giving our members the opportunity to learn practical skills through workshops
– Networking with other organisations to inform members of available opportunities
– Intervening at an early stage to give babies and children the best life chances
– Helping members to access benefits, aids, adaptations, suitable housing and anything else that give them better opportunities