Britons show Victorian attitudes to epilepsy as children who suffer from the condition are accused of being ‘possessed’

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Bullying, Children, discrimination, epilepsy, friends, possession, prejudice, seizure, teachers

Britons show Victorian attitudes to epilepsy as children who suffer from the condition are accused of being ‘possessed’

One in five children who suffer with epilepsy has been accused of being “possessed” after having a seizure, according to shocking new research.

Britons’ Victorian attitudes to the condition are exposed in a report published by the charity Young Epilepsy.

It finds that over three quarters of people of all ages have experienced discrimination as a result of their epilepsy. More than 40 per cent of children have experienced discrimination or exclusion from their peers, and almost a third have faced discrimination from teachers.

In addition, two fifths have faced discrimination from strangers, and 8 per cent by doctors and medical professionals, according to polling for Young Epilepsy by Opinion Matters.

Negative reactions from others after a child suffers a seizure include being told being told that epilepsy is contagious, which happened to a third of affected children, and being asked if they could speak to spirits, which occurred to 18 per cent.

David Ford, chief executive of Young Epilepsy, said: “It’s a level of prejudice more akin to 1913 than 2013. We knew there was some discrimination but we had no idea it was on this scale.”

Conservative MP Laura Sandys said: “I’m epileptic and I know from personal experience that this is what people think.

“There’s been a sea-change in people’s perceptions of most disabilities, but epilepsy still seems to be seen as something you keep quiet about; it still hasn’t shaken off that perception that you’re somehow possessed by the devil or demonised.”

Ms Sandys, who is chair of the All-Party-Parliamentary Group on Epilepsy, said: “There have only been two MPs who have declared their epilepsy, but statistically there should be another four.”

Experts are concerned that this prejudice means that children with epilepsy are less inclined to be open and discuss their condition, something which could have serious health implications.

This guardedness continues into later life, with 55 per cent of those adults who were questioned in the survey saying that they never disclose their epilepsy to new people because they fear a negative reaction from them.

Professor Helen Cross, Prince of Wales chair of childhood epilepsy at University College London and Great Ormond Street Hospital, said: “These high levels of prejudice have a huge impact on how children can manage their condition. If you’re worried about being bullied then you don’t want to talk to people about it, which means you don’t have buddies who know what to do if you have a seizure.”

She added: “Epilepsy is as common as diabetes, and in childhood it’s more common, but while I bet every schoolchild can name someone they know with diabetes, I’m sure that’s not the case with epilepsy.”

Case study: Elliot Harden, 11

Julie Harden from Oxted, Surrey, is mother of Elliot, 11, who suffers from a life threatening form of complex epilepsy

“Some people are really quite nasty about epilepsy. In conversations Elliot has been called ‘a retard’, ‘mad’, ‘not right’ and ‘that scary boy’. Even coming into my house people jump back from him as if they’re worried they’re going to be attacked.

I’ve got friends who won’t come round to our house with their children because they’re scared of what they might see. One time my other son Cameron, who is 8, was playing with other children upstairs. Elliot came up to see them and the other children ran away downstairs.

One of my neighbours even bangs on the wall saying ‘f-ing this and that’ when Elliot is having a seizure and fighting for his life. Another neighbour ran out of the house when he had a seizure.

Report reveals postcode lottery of care for children with epilepsy

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Children, diagnosis, epilepsy, fainting, family, medication, misdiagnosis, MRI scan, seizure, support, symptoms, young people

Report reveals postcode lottery of care for children with epilepsy

Children who suffer from epilepsy face a “profoundly concerning” variability in the quality of care they receive, depending on where they live, according to a new report published today.

Epilepsy, which can have a devastating impact on educational attainment and badly disrupt the lives of sufferers, is the most common serious neurological condition diagnosed in the UK affecting one in 200 children or around 60,000 youngsters.

Charities called for urgent action after the first national audit of epilepsy services for young people found that barely half of families are offered the support of a qualified epilepsy nurse within a year of their child being diagnosed. The role is seen as vital in monitoring medication, advising schools that can be overly restrictive of children with the condition, and providing support to parents.

England offered the worst level of specialist nursing support, according to the survey of children’s NHS services conducted by the Royal College of Paediatrics and Child Health. Only 47 per cent of units offered the service – compared with 77 per cent in Wales, 73 per cent in Scotland and 100 per cent in Northern Ireland.

Half of children diagnosed with epilepsy do not achieve their full educational potential, said the report’s author, consultant paediatrician Dr Colin Dunkley.

“We’ve seen marked steps forward in epilepsy care for children in recent years. The majority of children are now being seen by paediatricians with expertise and many are getting detailed diagnoses and being prescribed the most appropriate medicines first time. But there are certain areas that need to be improved if we’re to give children and young peopl e the best possible medical treatment and ongoing care.”

The report also found that a third of children were not adequately assessed at first, while more than seven out of 10 did not receive an MRI scan necessary to detect underlying causes of the condition.

Nearly half of those suffering from the more serious types of epilepsy did not see a paediatric neurologist when required, it was found.

Epilepsy is often very hard to diagnose with GPs and hospital emergency departments often lacking experience in recognising symptoms which can often be mistaken for fainting or other conditions

Dr Peter Carter, chief executive of the Royal College of Nursing said advances in care had transformed the lives of children. “However, it is a matter of profound concern to us that this is not the case everywhere,” he said.

David Ford, chief executive of the charity Young Epilepsy, added: “More must be done, and quickly, if we are ever to make meaningful improvements to these young lives. The support received by young people with epilepsy just simply is not good enough. The effects of the condition can be devastating and should not be underestimated.”

Case study: ‘Suddenly she was having 20 fits a day’

There was nothing spectacular about my daughter’s first fit. In fact it took several weeks before we realised she was having them at all.

“There was no falling to the floor, frothing at the mouth or flailing of limbs, rather a brief rolling of the eyes and a vacant look. It was all over in a matter of seconds. We were on holiday in Norfolk when we eventually clocked that this was beyond normal weird five-year-old behaviour. From occasionally zoning out, suddenly she was having 20 in a single day. It was absolutely terrifying and we rushed her to hospital where she was diagnosed with childhood absence seizure.

“Because Lucy has speech and language delay she already had a paediatrician in York who we were able to phone the next morning. She arranged an EEG test for three weeks time in which electrical receptors are attached to the head to monitor the pattern of brain waves during an induced fit.

“The results came through a week later and we are now two weeks into a course of medication which should put an end to her fits. We have had excellent, prompt care. Our paediatrician offered us the services of a specialist epilepsy nurse and we are due to have an MRI scan. Having read the report I now realise we are among the lucky ones.

NHS is failing patients with neurological conditions, claims report

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brain damage, dementia, dystonia, emergency hospital admission, epilepsy, mental health issues, motor neurone disease, multiple sclerosis, neglect, neurological condition, Parkinson's disease

NHS is failing patients with neurological conditions, claims report

People with neurological conditions such as epilepsy, multiple sclerosis and Parkinson’s disease suffer “neglect” by the NHS, claims a report by an alliance of charities representing patients.

Poor care means that too many of the 8 million patients in England with a neurological problem are admitted to hospital as emergencies, experience delays in having their condition diagnosed, and receive too little information about what is wrong with them, according to the Neurological Alliance.

The alliance is a group of more than 70 charities that work with people who have suffered damage to their brain, spinal column or nerves either as a result of illness or injury. Its members also include charities representing those with motor neurone disease and rarer conditions such as dystonia.

An alliance report accuses the NHS of not taking patients with neurological conditions seriously enough, and warns that the coalition’s health reforms will do nothing to help them. “Policy levers for improving care in the new NHS landscape are not being mobilised to support improvements to neurological services.

“Five of the six key policy levers, including national outcome strategies and the commissioning outcome framework, are not currently being used to improve services for people with neurological conditions,” it claims.

This is despite neurological services taking up more than 5% of overall NHS spending, which makes them the service’s eighth largest category of spending, and the fact that one in six people are affected, it adds.

The report urged the plethora of new NHS bodies being created next April by the Health and Social Care Act to tackle “the legacy of neglect which has resulted in unacceptable variations in outcomes and higher than necessary costs”.

Inadequate and poorly co-ordinated care of such patients by GPs and other community health and social care services result in undue numbers of emergency hospital admissions, it says.

Research by the alliance uncovered what it called “a spending lottery” on neurological services by NHS primary care trusts (PCTs). While Central Lancashire PCT spends £11.37m per 100,000 of population on them, Haringey Teaching PCT in London spends just £4.31m for the same number of people.

Similarly, there is a sevenfold variation in the proportion of PCT spending on these conditions that goes on emergency care. In places such as Liverpool, Sunderland and Wandsworth in London, it is more than half. “Not only are emergency admissions distressing for patients and extremely costly for the NHS, but they are often an indication that conditions are not being well managed within primary care, community and social care services,” the alliance claims.

Arlene Wilkie, the organisation’s chief executive, said action was urgent because half a million people a year are diagnosed with a neurological condition and the number of patients with one is set to skyrocket in the next decade.

“If the NHS reforms do not address poor standards of care for people with neurological conditions, then they will fail. The government has said that managaing health reforms should be all about outcomes, but it has failed to identify the outcomes which matter to people with neurological conditions,” she said.

The charities want the Department of Health and new NHS Commissioning Board to devise indicators for quality of care and patients’ outcomes that will prompt the service to overhaul such services.

The Department of Health said that the commissioning board is already planning to drive improvements to services for those with mental health problems, dementia and neurological conditions by ensuring that some of the first strategic clinical networks set up next year cover them.

“We want NHS services to focus on what matters to people most. This will make sure that people with neurological conditions get integrated care and the support they need at the right time and in the right place,” said a spokeswoman.

“We are working closely with patient groups and health professionals to develop a new Long-Term Conditions Strategy. The NHS commissioning board is already planning to drive improvements to improve mental health services, dementia and neurological conditions,” she added.

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