World Spina Bifida and Hydrocephalus Day – but who cares?
Thousands of babies with spina bifida who were born in the last century, and expected to die before they grew up, are being sold short as adults because they have lived too long, according to a national charity.
To mark World Spina Bifida and Hydrocephalus Day on 25th October, the national charity Shine, which represents 10,000 people with spina bifida and hydrocephalus, is calling on the Government to acknowledge the existence of a group of people who are the first to grow old with these disabilities.
Shine Chief Executive, Jackie Bland, will present a paper in Strasbourg on 23 October, as the European Parliament meets there, calling on Governments across the world to research and plan for the needs of this group, whose numbers will swell in the next two decades.
The paper, prepared and agreed by the 46 countries in the International Federation for Spina bifida and Hydrocephalus (IF), demonstrates the urgent need for expert, multi-disciplinary care and support for a generation of people. These people have lived, since birth, with paralysis, wheelchair use, problems with bowel and bladder management, and memory and processing difficulties. These challenges are complicated by the natural processes of ageing and the healthcare needs of this group have become significant – yet they are being overlooked.
‘Many people with spina bifida and hydrocephalus now is their 50s are very concerned about the future’ explained Ms Bland. ‘As children they were not expected to live, but with advances in healthcare, and developments like the shunt, which helps manage hydrocephalus, people can now expect normal life - spans. But no-one knows what to expect. Few people live from birth and into old age with such severe disability, and yet the specialist needs of people with spina bifida and hydrocephalus are not being acknowledged. As the ‘bulge’ of people who were born in the 1960s enter older age we are approaching a crisis to which health planners seem oblivious.’
Ms Bland called for urgent recognition of the problem and a commitment from Government to offer specialist multi-disciplinary clinics to address the complex and significant healthcare needs of this group.