Clapton family left at ‘breaking point’ after care for sick son is cancelled

A dad spoke about how he was at breaking point after the organisation that provides respite care for his disabled child let him down.

Jaroume Cariazo, 40, of Keyworth Close, Clapton, is father to two-and-a-half-year-old Elijah, who suffers from a rare muscle condition called myotubular myopathy and needs round-the-clock care.

The condition means that the tot has trouble breathing and swallowing, surviving with a help of a machine. He is unable to walk or talk. Children with the same condition rarely live for more than 12 months.

On Thursday, Mr Cariazo was told by Hackney Ark, a multi-agency centre which is part of Homerton University Hospital, that it would be unable to send a nurse to cover the evening shift just hours before it was due to start.

Mr Cariazo said the problem has arisen at least once a month for more than a year, and has left him and his wife at breaking point.

Mr Cariazo, who is undergoing counselling due to stress because of his son’s condition, said: “They phoned at 4pm to say the nurse cannot make it and we need to look after our son. We’ve not had respite since last week. I’m very frustrated. We are very tired. How can we look after our son? They are putting my son at risk.”

The couple, who both work in the medical profession, spent the previous two weeks in and out of the Royal London Hospital in Whitechapel, after their son was admitted on October 15 because he was having problems breathing.

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He added: “We took annual leave for one week and then my wife took unpaid leave for one week last week. Obviously we were exhausted. Running in and out of the hospital for two weeks is very stressful.

“It is happening once a month since last October or November. I cannot see any improvement at all. We need an organisation that will not let us down.”

Fortunately, the family were provided with respite after Richard House Children’s Hospice in Beckton offered to provide emergency care for Elijah for two days.

A Hackney Ark spokesman said: “We are sorry if Mr Cariazo is unhappy with the service we provide for Elijah. Our team of carers provide over 130 hours of care for Elijah every week and have done so for two years. In the past year we have had only three instances where the carer has not been able to attend because of sickness or other unavoidable reasons.

“Last week, Elijah was discharged from hospital and we were unable to provide his normal carer at short notice. We did offer to send another carer but this was refused by the family.

“When Elijah’s care package was drawn up with Mr and Mrs Cariazo, it was made clear that there would be times when we would not be able to guarantee a carer to attend and that, in these rare instances, it would fall on the parents to take responsibility.”