Care plea for dying six-year-old

Annie Davidson

HEALTH chiefs insisted last night they were doing everything possible to provide 24-hour care for a dying six-year-old from north Essex despite claims in the High Court it was failing to meet its obligation.

The profoundly disabled boy, who cannot be identified for legal reasons, was said to be nearing the end of his life and in need of full-time care.

The youngster, who has “severe neurological impairment”, has deteriorated in recent months and his case was taken up by the Children's Legal Centre which claimed his “phenomenal” mother was not being properly supported by the North East Essex Primary Care Trust (PCT).

At the High Court on Thursday, a judge heard how the child's single mother was caring for him on her own during the day as well as looking after her other children.

In a statement, the Children's Legal Centre said two High Court hearings had been held with the most recent one, on Thursday, seeing a judicial review of the situation being given the go-ahead.

Alison Fiddy, solicitor and deputy practice manager at the children's legal centre, claimed: “The PCT is failing to fulfil its duty to provide for the child's needs in the last stages of his life.

“This is a time when his mother should be caring for her son and making the most of the precious time she has left with him.

“Sadly, she is having to care for him as a nurse. We think this is fundamentally unacceptable.”

However, the PCT said last night it was working towards a solution for the family but was finding it difficult as the child's mother wanted the care to be provided at home.

Alan Mack, director of corporate development and governance at NHS North East Essex, said: “There was no time limit placed on the need to provide the required level of care for the child and NHS North East Essex has been in contact with a number of children's hospices, one of which is in a position to assess the needs of the child and produce a care package.

“However, we need the consent of the child's mother to make such a referral but she continues to maintain that the care must take place at home but this is just not proving possible at the moment.

“The child's mother is currently receiving a comprehensive care package from social care for home support, which is partially funded by NHS North East Essex, in addition to hospice respite care.”

Mr Mack added: “The child in question was only deemed as needing this particularly advanced nursing care in September 2009 and we have never disputed this.

“However, to provide this level of care in the child's own home is proving extremely difficult to arrange as the child's needs are very complex.

“We have been ceaseless in our attempts to find six such nurses with these specialist skills in children's palliative care, even contacting agencies as far away as Scotland.

“However, experts in this work, including the hospice involved in the respite care arranged for the mother, have confirmed that this level of cover is nigh on impossible to find and provide in a domiciliary setting.”

He said: “The welfare of the child is of utmost importance to NHS North East Essex and it is hoped the child's mother will be prepared to allow him to be cared for in a hospice-type environment.

“At the court hearing on October 15, the judge appreciated the difficulties in this rare case and this was recognised by granting NHS North East Essex the time it needs to complete its work in finding full time care for the child.

“He recognised the efforts we had already made and noted that we are fully aware of the type of care required. There was, in fact, no criticism of NHS North East Essex or its actions so far and he said that he felt there was a lack of clarity as to why this case had actually come to court at all.”