Five year-old Lewis Scott, of Taylor Street, Ilkeston, was born with serious heart problems for which he must take intravenous drug, Exonimone, every day.

For years, mum Dina has collected the prescribed drug from her family GP in Ilkeston - but now she is being told she faces a 100-mile round trip to Birmingham Children's Hospital to pick up the medication directly from Lewis's specialist.

Dina said: "I find it disgusting that addicts on the street get treatment and medication, but I have to fight for my son's. For it being a child, it makes it even worse."

Lewis was born with his heart round the wrong way, a hole in the heart and a narrowing of the aorta.

He was at risk of heart failure for the first eight weeks of his life and has endured vital operations ever since. A pacemaker was fitted in October 2006 to make his heart function properly.

Lewis has always taken medication and when he was one he was prescribed Exonimone for the first time. He has taken it ever since. The drug comes in a glass vial and is swallowed by Lewis each day.

Dina said it was prescribed by the heart specialist at the Birmingham Children's Hospital where Lewis is still an out patient, but she picks up repeat prescriptions from her GP each month.

But last month when she tried to do just that, Dina was told it would no longer be allowed because her doctor cannot provide the necessary specialist monitoring. She was forced to collect it from Birmingham Children's Hospital - who billed Derbyshire County Primary Care Trust for the expense - and now faces regular trips to collect her son's vital medication.

A statement from Derbyshire County PCT said: "Based on the information presented to the PCT, the use of Enoximone in this case appears to be outside its licensed indications and not something a GP would normally be expected to take on responsibility for prescribing.

"The drug needs to be administered intravenously and requires specialist monitoring. It is therefore felt that, in this case, the prescribing and review for this drug should remain with the specialist.

"Should Birmingham Children's Hospital consider that the costs of treatment are not covered by the normal contract between the PCT and the Trust, they can make a formal request for funding to the PCT's Non Contracted Treatment Panel, which will review the case."

In reply Dina said: "If they'd said I had to get it from the hospital, fair enough, but I've had it for four years this way."

No-one from Birmingham Children's Hospital was available for comment.

A Birmingham Children's Hospital spokesperson said: "In most cases, Enoximone prescribing is taken over by the GP once the patient has been discharged from hospital.

"Many of the GPs are happy to prescribe this as the hospital specialists review the patients regularly and advise the GP of any monitoring that is required.

"Due to it being a specialist drug some GPs are not happy to prescribe this. In these instances, and following the agreed NHS process, the pharmacy team at Birmingham Children's Hospital will apply to the PCT for funding and the consultant at BCH will continue to prescribe the medication for the patient.

"The Enoximone can be distributed to the patient in one of two ways: a prescription is posted to the patient which can then be dispensed by a local pharmacy, or, if there are problems with the pharmacy getting hold of the medication, a homecare firm can dispense and deliver it to the patient.

"The pharmacy team are liaising closely with the cardiac liaison nurses who are aware of where we are in this process and are in contact with the family."