Northern Ireland

Charity warns four year delays for Motor Neurone patients too late as half die two years after diagnosis

Hospital waiting lists in Northern Ireland are among the worst in the NHS
Hospital waiting lists in Northern Ireland are among the worst in the NHS Hospital waiting lists in Northern Ireland are among the worst in the NHS

A CHARITY providing support to people with Motor Neurone Disease has slated four year delays for suspected cases as the disease kills half of those diagnosed after two years.

Leaked waiting list figures reported in yesterday's Irish News revealed the scale of the backlog for first consultant assessments in the Belfast trust, with neurology and rheumatology patients worst affected.

It emerged delays in excess of 200 weeks across both specialities for people classed as "urgent" were recorded in July - sparking concerns about the ability to access many of the same NHS doctors within weeks or months if you pay £230 for a private consultation.

Meanwhile, the Belfast trust last night confirmed more than 3,500 patients - 1,794 neurology and 1736 rheumatology - are among those caught up in the delays.

They apologised for the "distress" caused and said the coronavirus pandemic had compounded the crisis.

Branch chairman of Motor Neurone Disease Association (MNDA) in Northern Ireland, Stephen Thompson, described the situation as "a disaster" and said he was aware of people with suspected symptoms travelling to the Republic for private appointments.

"Half of people diagnosed with MND will die within two years of diagnosis. If you have to wait four years for an assessment with a neurologist, you're dead. I lost my wife to the disease 20 years ago, she was 50. She was diagnosed a year beforehand," he said.

"The delays have gradually been increasing over the past number of years and the Dr Michael Watt neurology recall in 2018 really put a cap on it and meant there's been an increase for private appointments also.

"We know that many are choosing to go down to Dublin where there is a professor who is a leading light in terms of research. There are also people going to her for various clinical trials for treatment."

Another patient contacted The Irish News yesterday to say she had paid £700 for a 15-minute private consultation in a Belfast private clinic after being diagnosed with rheumatoid arthritis. She is in her early forties.

"I was diagnosed last December but my consultant appointment kept getting put back due to Covid. I was told it was severe and waited but I couldn't take the pain any more," she said.

"I kept ringing my GP and they told me I was under the care of the hospital. So I took my some savings, rang and went private. I made the call on a Thursday and was seen the following Tuesday.

"The consultant did an ultrasound and gave me two injections. I was in and out within 15 minutes tops and got a £700 bill."

Dr George O'Neill said the situation was "unacceptable" and that he was now sending urgent patients with suspected serious conditions to A&E departments.

"I can think of one young man who came to me who had been in and out of the Emergency Department. He came into me with a classic set of symptoms for Multiple Sclerosis. I sent him to ED with a query MS and he had MS," he said.

"What saddens me is that the system is wrong, we allow it to continue and no-one has taken a handle on it and tried to change it," he said.

"Transformation is slowly taking place which should have taken place decades ago."