50 years on from the Medical Exemption List for people with spina bifida

Spina bifida is a complex condition involving most of the body- pain, high blood pressure, infections to the skin and tissues, pressure sores and thin bones are commonplace. Until relatively recent times, open spina bifida led to death in the infants or children born with it, in the vast majority of cases.

From the 1960s, a breakthrough in treatment meant lives could be saved, and many of the 4000 babies born with spina bifida each year at that time survived. However, by the mid-1960s, it was apparent that renal failure, arising from abnormal bladder function, was a severe, often fatal complication. It became a routine part of early treatment to surgically bypass the bladder, diverting the urine into a permanent stoma on the abdomen.

When the medical exemption list was published in 1968, the list of people exempt from prescription charges included those using collection devices for people with permanent stomas, so the vast majority of people with spina bifida received all their prescriptions, (including those for unrelated conditions) without charge.

Advances in medical technology meant that from the late 1970s, fewer people used a permanent stoma.  New techniques using a temporary thin catheter coupled with medication to relax the bladder allowed many people with spina bifida to achieve continence. Most children from the 1980s grew up with this method, and some adults had their stoma reversed to improve their body image.

However, despite gaining all the benefits of better health and improved quality of life, intermittent catheterisation meant people with spina bifida lost exemption from prescription charges. Unless working adults met the criteria in some other way, such as epilepsy, they needed to pay for prescriptions for catheters and bladder relaxant medications.

More recently, advances in bowel management, such as irrigation, have further liberated adults with spina bifida from ill health and incontinence, allowing some to have the confidence to take paid work for the first time in their lives. The equipment is available on prescription, and yes, they have to pay!

To live comfortably, people with spina bifida tell Shine they often have between 5 and 11 prescription items every month. Even with the ill-publicised Prepayment Certificate, living and working with a long-term condition gets expensive. For those entering the world of work, prescription charges add to the financial burden that people with long-term conditions like spina bifida bear.

It’s high time this unfairness was ended. In June this year the medical exemption list will be 50 years old. Please sign the Petition calling on the Government to urgently review this situation so that people with long-term conditions don’t have to struggle with the cost of prescriptions. Medical technology has advanced- but this list is stuck in the past!

Gillian Yaz
​Health Development Manager at Shine