Multiple sclerosis patient living in 'horrific pain' due to UK-wide drugs shortage

A woman with multiple sclerosis (MS) has said she is living with "horrific pain" after being unable to get a drug she uses to manage her condition.

Jill Kenning has used Nabilone for 17 of the 18 years since she was diagnosed with MS and said the drug had been vital for managing her pain and helping her live a normal life.

She said she had spent most of her time in bed since running out of the drug last Tuesday.

Northern Ireland's devolved health department said there was disruption to supplies of the drug across the UK, meaning Nabilone was out of stock with wholesalers and not expected to be available again until December.

A spokesperson said they would not say why there was disruption as the information was "commercially sensitive".

According to a tracker published by the industry reference guide MIMS, the average number of drugs in short supply in the UK has trended upward this year, external.

The number of drugs in short supply reached 157 this week, up from a low of 107 in January.

Kenning, from Coleraine in County Londonderry, was diagnosed with MS in 2008 after experiencing problems with her sight.

She subsequently developed numbness down the left side of her body and was treated by a neurologist.

After a severe relapse, which resulted in a four-week hospital stay, she was prescribed Nabilone which she said made a massive difference to her quality of life.

"It helps me basically that I can get out of bed in the morning," she said.

But she said that without the drug she experienced constant pain in her eye, which she compared to being "stabbed with a hot poker".

After contacting her health trust for her regular repeat prescription, she said she was told there were no supplies of Nabilone available.

She was told to contact her neurologist and has since been prescribed other medication.

Kenning said the alternatives had not been effective and that her health had declined to the point where she had to stay in hospital for several nights.

"I don't want to be here any more because the pain is so bad," she said.

"I don't know how to describe it.

"I have been living on painkillers... I can't sleep, I'm sick, I'm not eating."

Kenning said more should have been done to prepare patients for the disruption.

"How do I live my life? How do I cope with the pain?" she said.

"I'm not only fighting for me, I'm fighting for all the other patients that are on this drug."

Multiple sclerosis is a disease that affects nerves in the brain and spinal cord.

The nerves in these areas are surrounded by a protein called myelin, which helps signals from the brain get to the rest of the body.

The myelin becomes damaged in people with MS because the immune system mistakes it for something that shouldn't be there and attacks it.

This means signals from the brain struggle to get through properly.

Northern Ireland's Department of Health (DoH) said both licensed doses of Nabilone were out of stock from wholesalers across the UK.

It said the shortage began affecting 1mg capsules in July, with the 0.25mg strength becoming unavailable more recently.

The DoH said it was working with the UK's Department of Health and Social Care and health trusts to manage the disruption, and that guidance had been issued to healthcare professionals on alternative treatments, including unlicensed imports of Nabilone where available.

A spokesperson said the DoH recognised "that medicine supply disruptions can be concerning for patients and the healthcare professionals who care for them".

"If patients cannot access their prescribed medication or have concerns about an alternative, they should speak to their specialist healthcare teams for advice about their treatment options," the spokesperson said.