MS sufferers denied ‘miracle’ drug over cutbacks

PATIENTS with multiple sclerosis are unable to get a miracle drug that slows the progression of the disease because of health service cutbacks, MS Ireland has claimed.

And some patients with MS cannot be discharged from hospital because approved care packages have not been provided by the Health Service Executive (HSE).

MS Ireland chief executive Anne Winslow said MS patients were also suffering in their own homes because the cutbacks have resulted in a lack of nurses and personal care provision.

Ms Winslow said the organisation was aware of people with MS who were having to wait in acute hospital beds because their approved home-care packages could not be implemented.

“It does not make sense at all that people with MS are taking up an acute hospital bed,” she said.

Ms Winslow said a number of patients had been assessed as being suitable for Tysabri but were unable to get the treatment.

“I have had two neurologists onto me in the last 24 hours who are very annoyed and upset about all this,” she said.

But the HSE said it was unaware of any instance where a patient, judged by their consultant neurologist as being in need of the treatment, had been refused it.

The HSE also pointed out it was engaged in an ongoing review of neurological services and treatment options.

It is estimated that about 400 of the 7,000 diagnosed MS sufferers in Ireland could benefit but the administration of the drug must be carefully organised. Around 100 MS patients have been prescribed Tysabri.

The HSE also said it was understandable there might be some individual cases where people feel they have to wait too long for home-care packages and pointed out that these services are provided according to clinical priority.

Deirdre Eustace, 59, a widow with two grown up sons, was first diagnosed with MS in 1983 and needs personal assistants to help her with everyday living.

Due to the cutbacks, she has had 16 hours cut from her weekly service and now relies on her younger son to look after her.

Ms Eustace went into residential care eight years ago, a year after the sudden death of her husband, who had been her primary carer, but left after just three weeks.

“I could not stay there because I would have been institutionalised. I got my life back and I want to keep it that way,” she said.