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of everyone affected by epilepsy

 

Epilepsy Action Awards 2018 Epilepsy Health Hero - Dr Daniel Hindley

Dr Daniel Hindley works at Bolton Foundation Trust. A paediatric consultant and clinical lead in community paediatrics, he has interests in childhood epilepsy and neurodisability.

“Dr Hindley is not like most consultants we have met - he is very different,” Martin Tomlinson says.  Martin and wife Debb have got to know Dr Hindley well in the past four years. Their son Fletcher is eight years old and was diagnosed with epilepsy when he was four. He has a wide range of seizures including tonic clonic seizures, which can last up to 20 minutes and require rescue medicine. He also has up to 100 myoclonic seizures a day.

Fletcher’s epilepsy affects him greatly day-to-day. He struggles with concentration, processing information, memory, recall and word finding. Motor skill tasks such as writing, getting dressed and opening things are also tricky. While Fletcher is in year 4 at school his education level is much younger and he has one-to-one support. 

Fletcher's first seizure was one month after starting primary school with three more seizures the following day. “We were caught in a whirlwind with no time to process what was happening,” Martin recalls. “The world seemed to speed up around us with no chance of putting on the brakes.”

Fletcher was admitted to the children's ward at Bolton Hospital and was soon referred to Dr Daniel Hindley.  “He’s extremely personal in his approach with a very caring bedside manner. He makes you feel like you are his one and only patient,” says Debb.

During times of great uncertainty, Dr Hindley has always been open to new ideas. “We once asked him about a treatment option that we had read about online,” Debb recalls. “He didn’t fob the idea off; he went away, researched it himself and was happy to give it a try.”

Dr Hindley also noticed that Fletcher had hyper-mobile joints. This causes him pain, he struggles to jump and moves around differently to other children. Dr Hindley quickly referred Fletcher to see a physio and orthotics specialist. “With their help, he can now run and jump (in his own quirky way) and has also learnt to ride a bike, something we never thought would be possible.”

After his initial diagnosis, Fletcher’s seizures were well controlled. But the last two years have been tough. The longest Fletcher has been seizure-free was 27 days. He often has seizures in clusters, resulting in hospital admissions. “We have tried numerous combinations of medicines, many tests including EEG's, lumber punctures, DNA tests, muscle and skin biopsies and even the ketogenic diet, all of which have had little or no success.”

In the past two years, Martin and Debb have never left Fletcher’s side. His younger sister Lexie, age seven, is also a huge support. But they couldn’t do it without the help of Dr Hindley and epilepsy specialist nurse Helen Jameson. “They are a fantastic team and are always just a phone call away. Whenever we have been unsure of a certain situation, they have been there to reassure us,” says Martin. “Fletcher loves his appointments with Dr Hindley and Helen, as he is made to feel so special. He does not worry or find the visit overwhelming and when he returns to school he takes pride in telling his SEN TA (special educational needs teaching assistant) all about his latest visit.”

Doctor Hindley and Helen are genuine caring people who are really passionate about epilepsy. They are open to suggestions and will never force us down a particular path of treatment. Instead they do what is best for Fletcher. They have both helped us cope with this awful journey that is epilepsy and changed our way of thinking from "how will we cope?" to "epilepsy won't stop us."

Epilepsy Action Awards 2018 Epilepsy Health Hero - Dr Daniel Hindley
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