Rachel Green: Securing regular medications is a lottery every month

I have a severe mental illness—a diagnosis of schizo-affective disorder. Over the years I have suffered from prolonged episodes of psychosis, from which it takes me many months, sometimes years, to recover.  I have been on anti-psychotic medication, olanzapine, for about 20 years now.

I don’t like being on this drug because I’m concerned about its long term effects, but it is essential for me. A previous attempt to wean myself off it led swiftly to a psychotic breakdown. The medication has a soporific effect. If I forget to take it, I find it hard to sleep. Lack of sleep is one of the key triggers for psychosis. 

Given how traumatic the episodes are to me personally, but also how devastating they are for my children and wider family, you can imagine that I take my medications very seriously.  

Psychotic episodes and their aftermath affect your cognitive functioning and problem solving becomes harder, so when I started having problems getting my medications from the local pharmacy, I was driven to tears of frustration. I could not understand why this problem had arisen or work out how to resolve it.

In the old days, my GP put the medications on a repeat prescription and sent the prescription automatically to the pharmacy where I live. All I had to do was turn up when the previous pack had nearly finished and my prescription would be there waiting for me. It worked perfectly. Every six months or so I had to go to the practice for a review and blood test, but I was used to this system and it worked for me.

Then everything started to become more difficult. First I was told to ring up the pharmacy well before I needed the medication to check they had it. Then this irritation was swiftly trumped by the drug not being available at all, now a frequent occurrence.

I don’t find this out sometimes until I’m about to run out. The pharmacist tells me to try the practice dispensary, but if they have it they aren’t allowed to give it to me directly because I live in the same village. I then have to ring round all the other local pharmacies until I find one that has the right medication at the right dose.

Sometimes a pharmacy does have supplies of the right medicine, but not in the right dose. My prescription is for 15mg, but this dose is often unavailable. They may have 10mg and 5mg, 2.5mg and even 7.5mg in stock but they can’t give me any permutations of these to make up the 15mg because my prescription stipulates a 15mg tablet. It is so frustrating. 

I asked my GP to add all the different permutations to my prescription, but she was only able to give me one other permutation of 10mg and 5mg. Even with that extra option it remains a lottery as to whether I’ll get my month’s dose or not. Each month, I wait in the queue in the chemist, butterflies in my stomach, hoping that this month they’ll have them and I won’t need to worry. It is so stressful. 

No one seems to be able to explain what’s causing the problem. I’ve been told various things—manufacturing problems, Brexit, and so on. One pharmacist told me that the company do not make money out of the prescriptions anymore. Another said they were having difficulties stocking the drug. A third told me my medication was quite rare—it isn’t. Most of them had no idea why it was happening, but confirmed that it is affecting quite a few medications. Judging from the reactions of other people in the chemist’s queue, I am not the only one having troubles securing my regular medication.

The latest advice I’ve received is to phone to check whether the medications are in stock two weeks before I need the next prescription. I used to do it a week before. This requires you to be extremely organised (which I’m not) and to count all your pills regularly. And I haven’t mentioned lamotrigine, the other medicine I have to take, which is on a separate prescription leading to an additional set of problems.

I have two part time jobs and two children and am trying to keep a grip on a cruel and destructive mental health condition. Securing regular medications should be straightforward—surely I shouldn’t have to run the gauntlet each month?

Rachel Green works part time for the University of Oxford and part time at Oxford Health NHS Foundation Trust.

See also: Editorial: Crisis in the supply of medicines