A mother plans to take legal action against a care home after she was forced to pull her severely epileptic son out after he visited hospital four times in two months, it is claimed.
Sevilay Bukhari, of Farmilo Road in Walthamstow, thought she had found the best place for 14-year-old Murat, who is also autistic and has ADHD, to grow up with the care he needs after the family was advised to put him into care.
Murat, who suffers around 100 seizures a day, went for a four-day assessment at Young Epilepsy in Lingfield, Surrey, in January 2012, where Mrs Bukhari claims staff were satisfied they could meet all his needs until he was 19.
However, after he moved there in June last year Murat fell four times due to seizures – all because the centre had a 'hands off' approach to caring for her son during fits, claimed his mother.
The 38-year-old said: “Their policy is disgusting, how can it make sense to have a policy like that with a severely disabled child?
“They just let him fall. I felt just devastated. Completely let down and gutted.”
Murat has had a deep cut to one eyebrow stitched closed and two gashes on the back of his head sewn up – one 10 centimetres wide – which Mrs Bukhari claims are the results of falls at the centre.
She added that the first three times, which took place over October and November, she thought they had simply missed him.
It was only the fourth fall, when one of his top front teeth was pushed up into his gum, that she said she was told about the policy, and claims she was made aware that two staff were with him when he fell.
She said: “Not once have we had to take him to hospital because we let him fall. If that had happened in our care social services would take him off us.
“We were really scared for his safety. Now we’re talking to lawyers because something has to be done. The care was not acceptable.”
She added that on the family’s twice weekly visits they saw Murat had been dressed in other children’s clothes and other children in his, and the family believe the home only took him out five times on visits – spending the rest of his time stuck indoors.
After a series of meetings with social services and Young Epilepsy staff Mrs Bukhari made the decision to resume caring for Murat herself in March, and he is now cared for at home and due to start at a local school this month.
Mrs Bukhari said: “Waltham Forest Council don’t know if they can meet his needs. The nearest home on offer is in Berkshire and it’s too far.
“It was such a hard decision to leave him there in the first place but now I can’t trust for him to be cared for properly. It’ll be tough but it’s the only solution in front of us.”
Steve Love, director of children and young people’s services at Young Epilepsy, said:
“We offer leading services across health, education and residential care for 200 of the most complex children and young people with epilepsy and other neurological conditions, providing a high quality service, rated as good and outstanding by Ofsted.
“Young Epilepsy does not have a ‘hands off’ policy when it comes to managing epileptic seizures, and in many cases staff will handle a student during such an event. Whilst it may seem like the natural response, there are some cases where handling a student or trying to catch them during a seizure can pose more risk to the young person, therefore we assess each individual on a case by case basis.
“It is disappointing that Mrs Bukhari was of the opinion that Young Epilepsy operates a ‘hands off’ approach to managing students with seizures, as Young Epilepsy staff had met with her to explain the support policies and procedures that would be most appropriate for her son.
“Young Epilepsy was not aware of any issues regarding the wearing of other students’ clothes.”