Meet Sandra Campbell, the new support and development worker for those with Spina Bifida and hydrocephalus in the Western Board Trust Area.
The mother of three, who hails from Derry’s Culmore Road, has lots of experience in helping patients and the families of those suffering from neurological disorders and is “delighted” to be appointed to the post.
The charity, formerly ASBAH, has been recently relaunched and rebranded as SHINE; a network to help and campaign to Share Information, Network and Equality.
The is intended to raise the profile of the charity, its members and awareness of the two conditions. The birth rate of children with Spina Bifida is between 12-16 each year.
The neural tube defect occurs when the spinal cord has not developed properly in the womb. The Latin translation means ‘split spine.’ The condition happens in the first 28 days of pregnancy.
Hydrocephalus, literally means ‘water on the brain’ and is the result of swelling on the brain causing damage to the cells and impaired function.
This disorder is most common among newborns however there is also normal pressure hydrocephalus, that is, late onset of the condition in older adults.
Mrs Campbell is currently spearheading a public awareness campaign entitled ‘Go Folic.’
Incidence of brian or spinal cord defects in children are dramatically reduced if mothers-to-be increase their consumption of folic acid. Those mothers planning to start a family are advised to increase folic acid intake pre-conception.
“The importance of folic acid throughout pregnancy, should not be understated,” said Mrs Campbell; “not just pre-conceptually. In fact, research studies have shown the importance of folic acid for everyone at all stages of life.”
Aside from fundraising, as “more funds means more support,” her immediate focus, Mrs. Campbell said, “will be to support families across the Trust from diagnosis and through the various transitions, and also focus on establishing and developing a range of service user groups according to need and interest across the region.”
Those groups include linking up with wheelchair basketball clubs, sports clubs and Fit for Success programmes promoting healthy lifestyles among patients and other medical support programmes.
The long term aim is to “have a specialist service in the North West but this is probably not a very real expectation at this stage so we will continue to give information and support to patients, not only upon diagnosis but at critical transition periods in patients’ lives, i.e. pre-school to primary school, primary to post primary, post primary to employment and independent living.
“We provide information, support and links to other relevant organisations in health, education, housing and employment.
“My role is to provide support. The type of support varies dependent on the individual and level of need. It is our aim to take away the mystery of the condition and help those diagnosed with any questions they might have.
“I was delighted to be appointed to the SHINE NI team. It is my privilege to work with a dedicated team and with members across the Western Health and Social Care Trust.”
Sandra has a wealth of experience working with suffers of neurological disorders.
She worked with a Progressive supranuclear palsy (PSP) support group for 12 years.
The former Primary School teacher has worked with children with physical and learning disabilities.
“I’m acutely aware of the challenges facing many children, young adults, parents and teachers, particularly in the current climate and oftentimes in the lack of resources to meet their needs.”
Her undergraduate studies focused on cognitive development in children with Spina Bifida and Hydrocephalus, so she comes to the post with specialist knowledge.
“However, every individual has a unique story and experience and I look forward to hearing those and working with sufferers to address their concerns. I understand the challenges for service-users in accessing appropriate and timely response and services to ensure the best possible treatment, care and support,” added Sandra.
For more information log onto www.gofolic.co.uk or email firstname.lastname@example.org