Medication supply issues: have you been affected?

Have you (or a loved one) ever been prescribed medication that you were then unable to get hold of at the pharmacy? 

• Was there an impact on your health (physical and mental)? 
• Were you told the reason for it not being available? 
• Was the issue resolved? If so, how long did it take?
• If you are still impacted by medication supply issues, have you been told when you will be able to access them again?

To help us understand how these issues impact the lives of patients and families, please share your experience and insights in the comments below. You'll need to register with the hub first, its free and easy to do. 

We would also like to hear from pharmacists working in community or hospital settings, and others who have insights to share on this issue. What barriers and challenges have you seen around medication availability? Is there anything that can be done to improve wider systems or processes?

Please comment below or email us at content@pslhub.org

Shortages are an issue we hear about regularly from hospitals. Triscribe role is mainly about trying to give pharmacists and procurement teams better information to understand shortage risks.

My toddler had croup and developed very strained breathing so, being a Sunday, we called 111 and were sent to an out of hours gp based in a hospital.

They prescribed steroids, and told us we needed to start them straight away. We were told by the gp we couldn't get them from the hospital pharmacy because we had the wrong colour prescription. I'm assuming this was related to level of need but I don't know.

After driving to one pharmacy we were told the medication wasn't available and there was a shortage. We then called, or drove to, another seven pharmacies,  none of whom had it in stock. We were, however, told they had it in a slightly different form (can't remember the details) and that we would need to return to the gp to get a new prescription if we wanted that one. Three hours had past by this point.

Aware my toddlers breathing could potentially worsen and that we'd been advised to start the steroids immediately, I was quite concerned. I called the hospital and luckily we just caught the gp whose shift was finishing at noon. 

We had to drive back to the hospital, collect the new prescription and travel back to the pharmacy to get his medication. 

I was very fortunate that I have a car, a phone with credit, English is my first language, could pay the extortionate hospital parking fees (twice) and could do this three hour trip without having to bring several other children with me. Many do not have these privileges. It's a huge safety and equity issue. And I was actually able to get the medication eventually that day, many others seem to be facing issues that are leaving them without their prescriptions for weeks.

Someone close to me is prescribed ADHD medication. They were given a repeat prescription but told by the pharmacist that it wasn’t available in the dose prescribed. The patient and the pharmacy rang round other pharmacies to be told that this wasn't an isolated incident, none available. There was a slightly lower dose available but no pharmacy would dispense without a new prescription. The GP wouldn’t prescribe without going back to the Consultant who originally diagnosed ADHD and made the first prescription. Then a run around trying to get a prescription that managed to match the dose available; the later changing daily as the demand was so great that the drug flew off the shelves as if it was a prize Christmas present that all kids wanted. Farcical and hugely stressful. The outcome was the patient went without ANY medication for over a month. Now resolved but really worrying. No long term effect but it was having a negative impact on mood, motivation, employment etc. And the worry that will this happen again. 
 

Is anyone reporting this and if so where? Don’t think MHRA’s Yellow Card scheme would pick this up nor the NHS patient safety incident reporting system. So it’s a big unknown the impact on patient wellbeing and patient safety? 

Let me start this by confirming I am a pharmacist, and I practice in community pharmacy (high street chemist to some people).

I have a daughter who lives away but is on treatment for ADHD. I think I've drilled into her the importance of ordering her medicines on time and to never assume the items will be in stock. Up till now, she has been lucky in getting her medicines without too much of an issue.

This month was different - her regular pharmacy couldn't obtain her regular medication, and unfortunately pharmacists don't have any legal abilities to substitute or change brands or strengths. She rang around a number of pharmacies but none had any supplies. Luckily she had a week's supply left.

I could see that the pharmacy I work in 'might' be able to get stock from the wholesalers they use, but I needed to get the prescription from her regular pharmacy, and over to me - not impossible as it was an electronic prescription - but a bit of a faff. Then if I could obtain and dispense, I'd need to drive an hour and a half to take the medicine to her. I would of course done this as A) I'm her father and B) I understand the massive impact on her ability to function, and do the job she loves would crumble away without the medicines.

Luckily, I have a network of good pharmacy friends, and I put a call out to see if anyone in her town had the medicine in stock. Kindly someone responded, and said they thought they had some in stock, and would check on Saturday morning when the opened.

So my daughter travelled across the town, via a couple of bus changes to get to the pharmacy and collect her much needed medicines.

I am a pharmacist, with a understanding of how the system works, and a network I can informally utilise. We were lucky.

But what about patients who don't have this, or anyone to advocate for them in this respect.

Medicines shortages aren't just an inconvenience for some, it affects their quality of life, both mentally and physically.

Thank you @Darren for sharing yours and your daughters experience and insights. And for highlighting the wide ranging impact on people when they do not get their medication. Your perspective is of enormous value to this conversation. 

In your role as a pharmacist, do you get told the reasons for supply issues? Are there some common themes? Do you have any changes you would make to help the system run more smoothly and reduce supply issues?

MY own experience is when there are no supplies with the supplier so we are advised by the pharmacy to go back to the GP and look at alternative products. On a good day if the pharmacy have time they often tell me what can be obtained which helps greatly when speaking with the GP.

The issue of having some stock is also a frustration as they may be able to dispense 3 of 4 items but not the later and you are then not able to go else where for it but have to wait and hope that they are able to get  supply before you run out or go back to the GP for further prescription.

11 hours ago, Patient_Safety_Learning said:

Thank you @Darren for sharing yours and your daughters experience and insights. And for highlighting the wide ranging impact on people when they do not get their medication. Your perspective is of enormous value to this conversation. 

In your role as a pharmacist, do you get told the reasons for supply issues? Are there some common themes? Do you have any changes you would make to help the system run more smoothly and reduce supply issues?

The amount and details that pharmacies receive about shortages can vary greatly. Sometimes a manufacturer can have issues with their production, or raw material issues, or products can be withdrawn causing similar products to become exhausted as demand switches to them. These tend to be highlight grabbing big news stories, so we get the details. Other shortage seem to have no explanation.

There are sources of information we can use to try and determine when supply might return, but often it can be as vague as "the first part of the year".

There are lots of factors that feed into the shortages, a big one being, the UK isn't a profitable market for some manufacturers, and the demands for medicines outside the UK.

What could we do better? Share information between local pharmacies, but there is no formal mechanism for this, and it's reliant on the professionalism and goodwill of pharmacy teams to coordinate. Sadly chasing "stock" and trying to manage the needs of patients takes up significant amounts of time of the pharmacy and GP teams as we try and coordinate replacement prescriptions.

Thank you @Darren for sharing your knowledge.

Both myself and my daughter have ADHD and we have struggled to get prescribed medication for my daughter on a regular basis. This is particularly challenging because with the type of medication prescribed, it is not one that another brand can be prescribed instead because of the titration process and side effects. I am hoping to start taking medication but the Consultant Psychiatrist has said she is unable to prescribe the particular medication she wants to because it is out of stock and when it becomes available those patients already prescribed that medication will take priority which is understandable. This is via a private consultant as well, so not just something affecting the NHS. It makes a challenging condition to live with even more of a challenge. 

Hi @Kellie Wilden, thank you for sharing your experience. The issues you raise regarding availability of medication and the associated challenges of changing brand are really interesting, and very frustrating for patients who need their medication. Thank you also for highlighting that this was via a private route too as it helps us to understand the wider picture and all of it's complexities. 

Have you been given any reason for the medication not being available or indication of when it would be? 

The reason given for the medication being unavailable is that there are shortages due to manufacturing issues and it is likely to be several months until supply is back to normal. 

Hello ! We have a 27-year-old son who has complex needs and has a careful medication routine every 2 hours- which has now been running for the last 16 years or so.

he is on heart, lungs, and diuretics to remove excess fluid from his body, so it can become a life-threatening situ very quickly if meds are not monitored very closely by 3 checks or even 4 checks per medication.

we use more than one pharmacy as the meds he has are specials and cannot be sourced from the shelf and need to be made for him.  we suffer from his named brands running out or being out of stock, even if it could be supplier has moved and the pharmacy is looking to recruit another. 

so nothing straightforward, we are always chasing different pharmacies, online pharmacies are the worst because they send out the nearest which could be completely wrong as he is 27 years old but in a body of 8 /9 years old - growth development. hope this helps as I've been brief. mo . 

Hi @mo_hafeez Thank you  for sharing your information. It sounds that the supply challenges are long standaing, not just in relation to more recent concerns. Would you be able to share more information, either attributly or anoynmously? If so, a collegue of mine would be happy to contact you and help write up your experience in more detail for publication on the hub. It would be very helpful to share the personal impact of these challenges, it sounds very hard for you and your family.

Best wishes and thanks again

Helen

@Stephanie O'Donohue

My adult daughter has had significant issues getting her ADHD medication, which has been the case since last summer, and is a known issue. Each month she has to scour pharmacies across the county and go back and forth to the GP to change the prescription to something that might match available supply. She is unable to work without her medication as she can't focus or concentrate. I have heard that an ADHD person being without their medication is like a paraplegic being without a wheelchair - they won't die but their ability to function is significantly impaired.

I have had a shortage of Calcium plus Vitamin D tablets to go with my alendronic acid osteoporosis treatment. I wasn't offered an alternative, even though there are many others. and getting an appointment with the GP to request a change is almost impossible. So I had to buy my own medication from the internet. I was not warned of the potential issues of not taking the supplement while continuing to take the alendronic acid. Had I continued to take alendronic acid without extra calcium I could have developed hypocalcaemia. Others may not have been able to buy the calcium themselves or get the right dose. I eventually managed to get an alternative after 3 months.

Thank you @Suze for sharing your experiences. My family have similar experiences with ADHD medication, it’s so frustrating and debilitating. And clearly a risk to you too, without your medication. 

Im on salt tablets for really low blood pressure - without them I keel over. My nominated pharmacy hasn't been able to get hold of stock - bearing in mind I'm on 6 x tablets a day so 168/28 days. I'm feeling lucky if they have 60 at a time.... It takes a huge amount of 'patient effort' to navigate this. Eventually the request lapsed and they couldn't get anymore so GP had to issue paper script and after 7 pharmacies I found one with 96 in stock - so another owing slip.

Im not sure people realise the time implications this has throughout the whole medicines journey? My solution (and please don't try this at home) was to reduce it to 5 per day - plus lots BP checking, then went to 4 per day to try to ensure I had some supply left. I have a BP monitor and had my condition for around 10 years so I know what I'm doing - I couldn't go any lower or my dizzy spells kicked in. I then tried to reorder from GP again - second pharmacy were getting some but dk when.

With 7 tablets left.... scarily close to trying to negotiate with hospital pharmacy to get a cardiology prescription for me, I won the lottery and my nominated pharmacy tested to say they had some in for me. Ive gone back to 5 per day to be on the safe side but am OK now til start of April. 

Daren't even mention HRT patches shortage - only one type I can tolerate due to adhesive allergies. 

Hey, community!

So, recently, my mom was prescribed medication, but when we hit the pharmacy, it was a no-go – they didn't have it in stock. Cue a bit of stress. The impact on her health, both physically and mentally, was noticeable, and it left us wondering what went wrong.

Unfortunately, the pharmacy couldn't provide a clear reason for the unavailability. We had to jump through some hoops to get it sorted out. It took a couple of weeks, but finally, the issue was resolved, and the medication was in hand.

I'm curious to hear if anyone else has faced similar pharmacy adventures. Let's share stories and tips on dealing with these situations!

On 15/02/2024 at 15:39, Lisa Riste said:

Im on salt tablets for really low blood pressure - without them I keel over. My nominated pharmacy hasn't been able to get hold of stock - bearing in mind I'm on 6 x tablets a day so 168/28 days. I'm feeling lucky if they have 60 at a time.... It takes a huge amount of 'patient effort' to navigate this. Eventually the request lapsed and they couldn't get anymore so GP had to issue paper script and after 7 pharmacies I found one with 96 in stock - so another owing slip.

Im not sure people realise the time implications this has throughout the whole medicines journey? My solution (and please don't try this at home) was to reduce it to 5 per day - plus lots BP checking, then went to 4 per day to try to ensure I had some supply left. I have a BP monitor and had my condition for around 10 years so I know what I'm doing - I couldn't go any lower or my dizzy spells kicked in. I then tried to reorder from GP again - second pharmacy were getting some but dk when.

With 7 tablets left.... scarily close to trying to negotiate with hospital pharmacy to get a cardiology prescription for me, I won the lottery and my nominated pharmacy tested to say they had some in for me. Ive gone back to 5 per day to be on the safe side but am OK now til start of April. 

Daren't even mention HRT patches shortage - only one type I can tolerate due to adhesive allergies. 

Thank you @Lisa Riste for sharing your experience and the related safety risks of patients not being able to access their full prescriptions. Patient insights like yours will help to build a picture of the range of issues faced, and the impact these can have on individuals physical health and mental health. 

An interview published today on the hub that may be of interest: