Sickle cell anaemia sufferer Juanita Adams cannot get a powerful painkiller

By Sam Strangeways

A grandmother who lives with “excruciating pain” due to sickle-cell disease has been told that the one drug which eases her suffering is being phased out at the Island’s only hospital.

Juanita Adams regularly visits the emergency room at King Edward VII Memorial Hospital when the chronic pain caused by her hereditary blood disorder gets too much to bear.

In the past, the 56-year-old has been given shots of a powerful painkiller called pethidine — a drug which can also be administered during childbirth — which provides some relief.

But on recent visits she has been refused the narcotic — and yesterday Bermuda Hospitals Board told The Royal Gazette that pethidine would soon be phased out altogether.

Ms Adams said she was first told last November that the hospital was out of the drug, with ER staff informing her on subsequent visits that they didn’t know if it would be available again.

“I feel like I have nowhere else to go and no answers,” she said. “I have been fighting this all my life and my pains have really, really been excruciating.

“As you get older, the pain gets worse. I’m about had it. I’m really, really had it at this point in my life.”

A Bermuda Hospitals Board spokeswoman said yesterday that KEMH did run out of the drug at the end of last year but restocked in January.

She would not comment on Ms Adams’s case but said: “I can confirm that the hospital is not out of stock of pethidine.

“It is administered only with physician approval. A patient cannot simply request it. It is also worth noting that the hospital has a small supply of pethidine and is phasing it out as this is best medical practice. When the current supply is finished it will not be restocked.”

The spokeswoman said the pethidine supply ran dry in December due to “exceptional utilisation”.

“BHB regularly reorders stock based on usage patterns,” she added. “However, in the event of unforeseen spikes in demand, there is a risk of stock-outs for some narcotics.

“BHB recognises this possibility and works to manage procurement logistics, while also conferring closely with local physicians and the Chief Medical Officer to secure the volume of controlled narcotics available to Bermuda on an annual basis.”

She said some patients had to be shifted to “substitute therapies” to preserve narcotics for patients with the “greatest clinical need”.

The spokeswoman added: “It should also be noted that some patients are not supplied with pethidine when other medications, such as hydromorphone, are the first line therapy.

“BHB physicians address each patient’s primary medical complaint and will recommend clinical monitoring, which is the appropriate medical protocol.”

Ms Adams said that didn’t help her, since she was allergic to alternative painkillers containing morphine, codeine or etoricoxib.

She said on her most recent visit to ER, in the early hours of Friday morning, she was given an alternative to pethidine which has since caused an outbreak of painful blisters.

“All of a sudden the hospital says they don’t have the drug for pain relief,” she said. “I’m in constant pain every day.

“If I could get the injections, I could go out and live my life.

But due to them not having it, I’m coming out still in a whole lot of pain.

“It’s really a rough, rough life to know that when you wake up every morning, you are in pain. My legs are hurting. I’m crying because I’m in pain.

“I feel that there should have been some kind of notification to let the public know what’s going on with the drug.

“To not have anything [to help me]? I am not accepting that. I feel that they should have the generic drug or something similar to it.”

The BHB spokeswoman said it was clinical best practice internationally to move away from pethidine due to the “neurotoxicity of its metabolites”.

She said: “As a result, BHB will recommend that some patients follow up with a pain specialist so that alternate therapies can be considered.

“Patients or family members who have concerns about their care or treatment at the hospital are encouraged to contact our quality and risk management department, which has a robust process in place for dealing with issues raised by patients or their families.

“This process includes a thorough investigation into the facts, with the results reported back to the patient or family member. BHB would urge anyone with a complaint to contact us through our patient advocate office.”