Nabilone shortage leaves multiple sclerosis patient with uncontrolled pain

A UK-wide shortage of Nabilone has left one woman with multiple sclerosis in severe pain after years of stable symptom control on the drug. For Jill Kenning, the disruption has been immediate and brutal: she says she has spent most of her time in bed since running out of the medicine last Tuesday, with eye pain so intense she compared it to being stabbed with a hot poker.

Her experience exposes the clinical fragility of patients who rely on a single medication to keep chronic neurological symptoms tolerable. When a drug that has worked for 17 of 18 years suddenly disappears from the supply chain, replacement prescribing is rarely straightforward. The pain syndrome returns at full force, sleep collapses, appetite falls away, and the patient’s functional reserve can disappear within days.

Kenning, from Coleraine in County Londonderry, was diagnosed with MS in 2008 after visual symptoms first signaled that something was wrong. She later developed numbness down the left side of her body and was treated by a neurologist. After a severe relapse that led to a four-week hospital stay, she was prescribed Nabilone, which she says transformed her quality of life and made it possible to get out of bed in the morning.

Supply disruption and the consequences at the bedside

Northern Ireland’s devolved health department said both licensed strengths of Nabilone are out of stock with wholesalers across the UK. The 1mg capsules began running short in July, while the 0.25mg strength became unavailable more recently. Availability is not expected to return until December.

That timeline matters because it turns a short-term dispensing problem into a prolonged clinical disruption. For a patient with chronic neurological pain, a gap of weeks can be enough to unravel mobility, self-care, and mental resilience. Kenning said the alternatives she has been given have not worked, and her condition deteriorated to the point that she needed several nights in hospital.

“I don’t want to be here any more because the pain is so bad,” she said. She described living on painkillers, unable to sleep, feeling sick, and unable to eat. Those symptoms are not minor side effects; they are markers of uncontrolled pain severe enough to drive dehydration, nutritional decline, and further loss of function.

The short-term clinical reality is stark. A patient who had managed to live at home with a chronic neurological disorder is pushed back toward hospital care because the medicine that held symptoms in check is missing from the market.

Why the drug mattered in multiple sclerosis care

Multiple sclerosis damages nerves in the brain and spinal cord when the immune system attacks myelin, the insulating layer that helps signals travel properly. Once myelin is injured, conduction slows or fails altogether, and patients can develop weakness, numbness, visual disturbance, and pain. Chronic neuropathic pain is among the hardest symptoms to control because it reflects aberrant signaling within the nervous system rather than inflammation alone.

In that setting, a medication that reliably blunts pain can become central to daily functioning. Kenning’s account suggests that Nabilone was not an optional add-on; it was part of the treatment structure that allowed her to function with dignity and relative stability. Losing it has exposed how quickly long-standing symptom control can collapse when supply falters.

A substitute can sometimes be prescribed, but equivalence on paper does not guarantee equivalence in the real world. Neuropathic pain responds variably to different agents, and patients who have spent years on one regimen may find alternatives insufficient, intolerable, or both. When pain remains uncontrolled, the downstream effects reach every part of life: sleep, nutrition, mobility, mood, and the ability to remain at home.

Health system response and the wider shortage picture

Northern Ireland’s Department of Health said it is working with the UK Department of Health and Social Care and local health trusts to manage the disruption. Guidance has been issued to healthcare professionals on alternative treatments, including unlicensed imports of Nabilone where available. Officials said they recognise that medicine supply disruptions can be concerning for both patients and the clinicians caring for them.

In practical terms, the response depends on access to suitable substitutes, continuity through specialist teams, and the ability of pharmacists and prescribers to navigate a shortage that has hit more than one strength of the drug. Patients are being told to speak with specialist teams if they cannot access their prescribed medication or if they are worried about an alternative.

The wider shortage context is equally concerning. A tracker published by the industry reference guide MIMS shows that the average number of drugs in short supply in the UK has been trending upward this year. The number reached 157 this week, up from a low of 107 in January. For patients with chronic disease, those numbers are not abstract policy data; they translate into missed doses, emergency calls, and avoidable suffering.

Kenning said more should have been done to prepare patients for the disruption. Her comment points to a recurring problem in medicine supply management: patients often learn about shortages only when a prescription fails at the pharmacy counter. By then, the therapeutic gap has already begun to bite.

Neurological pain, access, and the cost of delay

For people with MS, pain control is not cosmetic or secondary. It is often the difference between staying mobile and becoming housebound, between sleeping and not sleeping, between eating and not eating. When a stable regimen disappears, the burden is immediate and personal, but the damage also accumulates across the health system as patients seek repeat visits, rescue prescriptions, and inpatient care.

Kenning’s case shows how a shortage can become a neurological emergency without a new lesion, a new scan, or a new relapse. The trigger is administrative and commercial, yet the clinical fallout is real. Her experience is a reminder that medicine supply chains are part of patient care, and when they fail, the consequences are measured in pain, loss of function, and preventable hospital time.

The unanswered clinical question is not whether shortages cause disruption; they already do. The issue is whether health systems can build enough resilience into supply, substitution pathways, and patient communication to prevent one missing medication from turning chronic disease management into a crisis.


Reporting by Dr. A. Manasa, MBBS for Medicine World Foundation, with additional data provided by BBC News — Dentistry.