A paediatric epilepsy nurse reveals her worries about job cuts and the power of managers over clinicians.
“I work as a specialist children’s epilepsy nurse for the NHS. Epilepsy is much more common than people realise: it affects about one in 120 children, meaning that most schools have several pupils with the condition.There are almost 500 children in my caseload.
A big part of my role involves educating school staff so that children aren’t discriminated against and can get the best out of their education; there’s still a lot of stigma and ignorance about epilepsy. Teachers should learn about it in teacher training college, but they don’t seem to; they are fascinated when I tell them how it can create difficulties with learning, including memory, concentration and behavioural problems. Teachers are often the first to notice that something isn’t quite right with a child, so they need to know what to look out for.
Unfortunately, epilepsy seems to be a Cinderella service: it’s not very sexy, and attracts little funding. Children with other long-term conditions such as cystic fibrosis or diabetes seem to get a better deal in terms of packages of care, including psychological support. And at the moment all services are suffering from NHS cuts: PFI is crippling hospitals with huge loan repayments, and many are cutting staff and closing down whole departments. That means that patients have to travel increasing distances to get treatment – and that in turn reduces smaller hospitals’ revenue, creating a vicious circle.
I’ve been working in the NHS long enough to remember the good old days, when hospitals were run by people who knew about medicine. Quality was everything, and we strived to produce the gold standard of care. But it doesn’t feel like a caring community any more: hospitals are run by people who know about business instead, and the emphasis is on money rather than medicine. That’s very demoralising for medical staff, and I don’t remember morale ever being this low.
Certainly, when we have meetings it’s all doom and gloom: we’ve been asked to save money year after year, and there’s no fat to trim any more. We’ve reached the bare bones, and now medical staff are losing their jobs – or being asked to take salary cuts.
The cuts also affect the treatments we’re able to provide. For example, there’s a high-fat ‘ketogenic’ diet which can work exceedingly well in a small cohort of children with difficult epilepsy. But it’s very labour intensive, as you need a full-time dietician, so it’s expensive to administer and the primary care trusts don’t like funding it. People criticise it as a fad, but if the drugs don’t work then what’s left?
Another example is ‘Vagal’ nerve stimulation, which has been effective in reducing seizures in some children with drug resistant epilepsy. NICE recommends that we should consider options such as nerve stimulation, diets and epilepsy surgery early on, rather than as the last resort after years of trying medicines – and subjecting children to their side effects. But Vagal is only available in a few larger centres, and again it can be difficult to get funding.
When we do turn to drugs, we’re encouraged to use the older, cheaper drugs first. Managers argue that the generic drugs are all the same, whoever’s made them, but they’re not: it’s like comparing Heinz baked beans with the Tesco Value range. Often we start children on one brand of drug, but when we discharge them their GP doesn’t specify the same brand, and when they go to the pharmacy it dispenses whichever is cheapest at that time. So the precise drugs they’re on can change again and again, causing variations which can permit breakthrough seizures. This is unfortunate and inconvenient for children, and can have a devastating effect on adults: many who were able to drive may have to return their licences, and their safety and jobs can be at risk.
I have a very satisfying job: parents really appreciate my role, and are very supportive. What’s more, the NHS has been getting better at epilepsy diagnosis and care, thanks to NICE guidelines and more education for doctors. But things are getting tighter and tighter. Everyone’s worrying that their job could go; and when people leave, their posts are often left empty – creating huge gaps in care. In some hospitals, specialist nurses are being asked to do general nursing shifts on the wards, while retaining their specialist caseloads. Training budgets have been slashed, so nurses often have to fund their own training and attendance at conferences to keep up-to-date with advances in their field. And don’t get me started on pay levels!
These days, we have the skills and treatments to keep on improving the lives of children with epilepsy. But with things as they are in the NHS, I’m not confident that we’ll be able to do that. For years, healthcare has been getting better in this country. Nowadays, I’m worried that it’s going to get worse.”