U-turn means Luke-John could die

News

U-turn means Luke-John could die

Wednesday, 29 October 2008

Nickola Copley with son Luke-John

By Lawrence Conway

A MOTHER caring for her terminally ill son is furious at health bosses’ U-turn on lifesaving treatment.

Nickola Copley has been advised her son Luke-John Copley needs an RSV vaccine to stave off potentially fatal infection.

Luke-John, five, has Down’s syndrome and a catalogue of other conditions, leaving him with a very weak immune system.

For most people, the common RSV virus, which attacks the respiratory tract, produces only mild symptoms, but Luke-John’s body would be unable to cope.

Lambeth Primary Care Trust (PCT) wrote to Ms Copley on September 3.

The letter said: “Regarding your son’s Synagis [RSV vaccine] treatment ... I have discussed the details with the paediatric cardiology department and your GP and it has been agreed that Lewisham Hospital will provide the injection.

"I hope that everything goes to plan.”

But the “everything” didn’t go to plan because, just six days later, Lambeth PCT wrote to Ms Copley questioning the benefit of the injection.

It said: “The PCT can only agree to fund treatments like this when they receive an application from a medical practitioner which includes information about the benefits to the individual patient.”

Ms Copley, 30, cares for Luke-John round the clock at their small flat in Hotspur Street, Kennington, with her mum Linda Upton.

She said: “I’m very confused, hurt and upset about this.

“It has been very stressful because Luke-John is the most important thing in my life.

“He already has a short life expectancy and this situation is making it even more painful.

“I believe this U-turn has been made to save money.

“Because my son is terminally ill and not expected to live a full life they are worried about wasting money on the treatment, which will cost about £1,000 a year.

Lambeth PCT communications manager Kelly Hastings said: “These decisions are best made by those directly involved in the patient’s care.

“In this particular case, specialist consultants caring for Luke-John are working together to agree the best course of action.

“Lambeth PCT will fund the medicine in question if the consultants agree it is appropriate.”

For more on this story see Tuesday's South London Press.

Email: lawrence.conway@slp.co.uk