When I applied to work voluntarily with Action for M.E. I told them about a project I’d really wanted to do which I’d had difficulty getting off the ground due to various problems, like not being well enough at the time to get on with it! For a year or so I’ve been wanting to put together a guide to M.E. for pharmacists, to raise awareness of our illness within my profession. I’d like to help fellow pharmacists to understand our illness and the part they can play in our care. Now that I have the support of Action for M.E. with this project, I’d really like to make a start.
I want the Guide to M.E. for Pharmacists to contain information that people with M.E. are happy with, so I’ll be asking for your suggestions while putting it together.
Firstly, I’d like to ask,
How has your pharmacist or pharmacy team helped you?
I’ve had some great chats on Twitter with some examples of best practice. I think it will both help pharmacists to understand our needs and to show others with M.E. the sort of things pharmacists and pharmacy support staff can help with. It can be anything they have done as part of the care they provide you, such as answering medication queries, giving advice, making it easier to take (or remember to take) your medication, prescription delivery or just being a listening ear. Of course, if you think there was something that could have been done better, I’d like to hear that too.
You can remain anonymous, of course, but you might like to give your email address where it asks if you’re happy with me contacting you for more details at a later stage, for example, to ask permission to quote your comment in the guide or if I put together some anonymous case studies.
The deadline for submitting your suggestions is 26 October 2015. Although the comment sections on the blog posts will remain open after this date, from that point onwards we will be moving onto the next stage of developing the resource. If you’d like to write a more detailed guest blog post, that would be great, and you can contact me if there’s anything you’d like to ask.
I’ve started a separate post for your tips for remembering medication, so if you’d like to share yours, you can add them to help others with the illness.
If you have any specific queries about your own medication, please ask your pharmacist or GP and please do not stop taking your medication without talking to your GP first.
Comments will be moderated and all views will be respected.
Thanks in advance for your help!
Emily
P.S. There is now a post asking What would people with M.E. like to see in a resource for pharmacy professionals?
A Prescription for M.E. 
I’ve had a mix of experiences if I’m fair. Good ones include:
– in store drug reviews with a pharmacist I see regularly and knows my circumstances. This means not having to trek to the surgery as often.
– being able to discuss possible pain relief / anti-vertigo medication before going to GP, which helps me go with relive my information and make an informed choice.
– General willingness to fight my corner/dispense emergency medication when GP practise has failed to send across repeat prescription (as pharmacist can see what I’m on regularly from their computer records).
Could be improved upon:
– Trying to remember to take correct medication at correct time is challenging. When I read about pre filled packs in a Boots leaflet, I decided to ask the pharmacist about them. They basically looked down their nose at me and told me I wasn’t sick enough to need them
LikeLiked by 1 person
Great feedback on the easy access to advice and reviews and that your pharmacist fights your corner! I’m disappointed to hear that as far as I can gather, you apparently don’t *look* ill enough to have the support advertised. Hopefully we can raise some awareness so that pharmacists can be more understanding about the sort of mobility and cognitive difficulties we can experience. Thanks very much for commenting, Clare 🙂
LikeLiked by 1 person
My Medication comes in Blister Packs for breakfast, lunch dinner and bedtime. They have an arrangement with my Surgery so I don’t have to remember to order them. They also deliver them to my home. I’m also on Oromorph, which when I’m running down I send an email to the surgery who then forwards it to the Pharmacy and that gets delivered on the same day as my weekly packs. I go away for a month at a time and they will give me as much as I’ll need before I go. I get stopped at Security who looks at my Bottled Oromorph but I now put three bottles in sealed plastic bags and no problem getting through. They couldn’t be more helpful and though I’ve only been using the surgery and pharmacy since we moved last September I’ve had no problems for either of them.
LikeLike
Thank you for adding your comment, Moira. It sounds like your pharmacy and GP surgery work very well together to make sure your needs are met as conveniently as possible, which is great to hear. I’m also pleased to hear that you’ve worked out the best way to avoid problems at airport security. In some countries it is illegal to possess these medications but a doctor’s letter and/or repeat slip and keeping the medication in its original containers with pharmacy labels on helps with that issue, for anyone else wanting to know about this. Thanks again for commenting, Moira. All of these comments help pharmacists better understand our needs and they also help others with M.E. 🙂
LikeLike
It’s really admirable that you among a rare bunch of health professionals that take time to listen to and understand the need if the patient. ME is exactly the type of disorder that pharmacists in the community can support. I look forward to reading more of the feedback you receive. Well done! Best, J
LikeLiked by 1 person
Thank you, Johnathan, your support in this is very much appreciated.
LikeLiked by 1 person
Since getting sick I have used 3 pharmacies. We started at a chain drugstore pharmacy. They were challenging to work with. I require strong opiod medicines and get then every month.
They would require a call to my pain dr to fill it. The problem is pain drs have to see me every 30 days on the button. We ended our relationship ship after I called to tell them to order my special pain meds because I would refill then in 3 days. They told me that they can’t because I could be setting them up to be robbed. I said this is my scam. I get the same legitimite script for 3 months then rob them the 4th time.
I took my 3k per month biz to another chain pharmacy. At one point they told me the dea requires I be present to pick up my meds. They said they would be calling the police in my wife. She waited for the cops but they didn’t call them
The GM of the store said they fired her and begged us to stay but we took our biz to a grocery store pharmacy.
We have been so happy with that choice. They don’t have a drive through, they are often slow but are super nice and pre order whatver when needed. The head pharmacist has helped get us meds from other places if needed. My wife picks up all the medicine l
LikeLiked by 1 person
When they see my wife they grab the medicine before she says who she is. They call us and are really great.
If I didn’t have my wife (who doses all my meds, my cognitive issues cause me to forget) I would go through a company that makes the daily packs of medcine or buy a unlocking lockbox.
LikeLiked by 1 person
Thanks for your comments, Duder. It’s showing the difference in health systems but there are still lessons to be learnt from your experiences.
LikeLike
Not really helped at all to be honest. But then the one time I went in and asked them about pain relief for ME they just hadn’t a clue. Found out myself by trial and error.
LikeLiked by 1 person
Hi Sharon and thanks for your comment. M.E. isn’t mentioned in pharmacy literature or training at the moment, other than the NICE guidelines, so I’d like to see an improvement in access to info about M.E. for pharmacists.
LikeLike
Brilliant initiative Emily. I could have hugged my local pharmacist when he delivered a repeat prescription to my home when I was too ill to get to the chemist and pick it up. However, sometimes I am well enough to collect it myself. I worry that if they get to recognise my face, next time I’m too ill to collect and I phone to ask for delivery, they’ll think “Oh but we’ve seen her come in to the chemist and she doesn’t look ill or disabled. Is she just too lazy to pick up her prescription?” I don’t think I’m alone in having these anxieties about having an invisible, fluctuating illness or in tying myself up in knots about asking for help. Thank you
LikeLiked by 1 person
Great to hear your pharmacy have been so helpful, Catherine! I share your concerns about the illness fluctuating so will I be believed when I really need help. I’ll definitely be covering this in the guide, so thanks for the tip and thank you also for the feedback about the project.
LikeLike
My local pharmacy is 10 miles away, 2 villages north. I live in a very rural area of the Highlands. The staff know me by sight & usually start looking for my meds (& my sister’s) before I need to ask. Always a pleasant chat. If they haven’t got something in stock, they’ll come to our house to deliver it asap.
LikeLiked by 1 person
Hi Jan, great to hear that your pharmacy go the extra mile (or 10!) 🙂
LikeLike
Hi Emily – As we’ve discussed on Twitter, a lot of people with ME find that amitriptyline is very helpful with pain and sleep, and pharmacists could help by 1) making sure that people with ME start on a low dose as doctors often don’t understand this and 2) reassuring people that at low doses amitriptyline is not working as an antidepressant (in case people are put off by this). Trouble is that as things stand, most pharmacists won’t know much if anything about the use of this drug for ME, which only goes to show that your guide will be invaluable.
The other drug I’ve found to be useful is baclofen for muscle fasciculations (however you spell it!) That was originally recommended by Prof Pinching when he did the doctor column in the AfME magazine.
I often recommend people to consult pharmacists if they’re uncertain about their drugs, though now I think about it I rarely do it myself. I guess it comes back to the same thing. I don’t expect them to know anything about ME so I’d be more likely to research it myself or ask you or ask Mike who runs the Doncaster group (who is also a pharmacist). It really does highlight the need for more education of pharmacists and other health professionals.
I’ve found my local pharmacy to be very helpful about delivering drugs, though that has been more in response to my other chronic condition. I’m not sure if they would do it on the grounds of ME, though I suspect it depends how you ask. If you explain about your mobility problems rather than just assuming they will say ‘yes’, you are more likely to get their co-operation.
Good luck with your guide!
LikeLiked by 1 person
Thank you for such a detailed comment, really helpful. Yes I’m planning a blog post about amitriptyline because of the problems of it being seen as an antidepressant. Pharmacists will already be aware of the low dose indication as it is also in the guidelines for other chronic conditions which have pain as a symptom. However, I think this stigma issue is definitely worth writing about as I have seen a lot of concern about this from patients. It hasn’t been prescribed because the patient isn’t believed, or because the doctor thinks the patient is depressed rather than having pain. The fact that it’s been prescribed at the low dose actually means the patient is very much believed. I’ll also definitely be covering mobility and also the variability of symptoms between patients and within the same patient, and how deliveries are helpful. Thanks again for taking the time to write this lengthy comment, it’s very much appreciated.
LikeLike
Hi Emily
My local pharmacy are really good. They deliver my medication and I can order a prescription through them. If there’s a delay in getting my medication, I can call them up and they will chase the surgery for the prescription. A few weeks ago I hadn’t received one particular medication, and when they called the surgery, the doctor hadn’t prepared the script. As I was out of the medication, the pharmacy sent me seven tablets to cover me, and when they got the script they sent me the rest.
LikeLiked by 1 person
Hi Charlotte, good to hear your pharmacy are understanding and helpful when there are problems. I have to say that strictly speaking, they aren’t supposed to dispense without a prescription, in case the doctor was wanting to review your repeat medication and possibly make changes but most of the time it is just an administration error at the surgery which can be checked on. It also sounds like they deliver your medication too, which is also very helpful. Thanks again for your comment, Charlotte.
LikeLike
Hi I have week day boxes and all day box and they help its ordering my prescription that is a problem my memory is not good and my surgery has really tightened up on ordering so that I have a few days left as I am on a few different things it’s difficult I have spoken to the surgery prescription person and explained that I only go out routinely on a Monday so I order ahead sometimes they withhold the prescription and I don’t know if I have sent it or not it’s all such a pain trying to get it right as I “look alright ” it’s hard to get help ? ?.
LikeLiked by 1 person
Hi, sorry to hear you’re finding ordering meds difficult. Have you spoken to your pharmacy about this? Many pharmacies now run what’s called a managed repeat service, where they order and collect your prescriptions for you, so this might be an option. It’s definitely worth having a chat about the problems you have with your health and ordering prescriptions to see what they can do to help you. I’m hoping that the Guide to M.E. for Pharmacists that I’m writing with Action for M.E.’s support will make it easier to explain your needs, so that people can take it in with them for a chat with their Pharmacy team about the sort of help needed. Kind regards, Emily
LikeLike
My pharmacist is always helpful too. Even had one of the two pharmacies I use ring me to see if I was OK a week after I started new meds because they could interact with other meds I was taking.
LikeLiked by 1 person
Thanks, Sharon, that’s a really good example of good pharmaceutical care. Thanks for sharing it. Best wishes, Emily
LikeLike
Old thread but still within your deadline, followed link from Phoenix Rising.
Thoughts:
Most pharmacies in the UK will home deliver without any justification needed. That is, you don’t need to tell them what your condition is, whether you are housebound or anything like that.
In fact I would NOT want to tell them I have ME, partly because my actual diagnoses are none of their business and partly because the ignorance around the condition still does us harm. Why would it help for them to know ? Anything I need to discuss that is within their remit can be discussed without them needing to know all details of my condition. Obviously, some meds are a giveaway – I get inhalers for asthma, but others are not as specific other than eg “pain relief”.
What would be more useful is if pharmacies were able to 1) tell us what the full range of services is they offer, even little things like free or cheap plastic syringes for low dose liquid meds, 2) provide other mobile services, delivery of non-prescription items, home flu vaccine, etc. for the housebound, and again they don’t need to know why, just that we need the service and 3) link in with other non-GP NHS such as physio for advice on support strapping or that sort of thing
I’d also note that most of the problems I have run into with pharmacies over the years (including some downright unpleasant pharmacists) are general attitude/disorganisation issues, which would not be helped by ME training.
I would also like a lot more transparency as to what they actually do with our personal data, how they vet their staff, who has access to what and so on.
Finally, you say you have posts about the role of community pharmacists, I can’t find these, do you have a link ? Thank you.
LikeLike
I’m in the process of writing the posts about pharmacies and services, as I mentioned. They will also include how we are trained as health professionals, including other pharmacy staff. We are bound by a Code of Conduct, Ethics and Performance in the same way as doctors, so your information is treated confidentially. I have written an article on pharmacy access to medical records, which you can find a link to in the list on the right hand side of the page. Unfortunately I can’t change how the NHS is run and how the services such as physio are integrated but what I can do is try to improve attitudes towards M.E., which is what I’m working on, in conjunction with Action for M.E. Thanks for your comments. Best wishes, Emily
LikeLike
“what I can do is try to improve attitudes towards M.E., which is what I’m working on, in conjunction with Action for M.E.”
I’m still not quite clear on how you think the pharmacist being told we have ME would help us. How would their service be better – how would it even be able to be better – for a known ME person vs for any other patient, condition unknown who needs their meds just the same as we do ?
LikeLike
It’s entirely up to you whether your pharmacist knows your diagnosis or not. If people decide to disclose their diagnosis, the pharmacy team can then make reasonable adjustments for you in the services they offer.
LikeLike
I can’t say I’ve ever asked, or expected my pharmacy to help. What could they possibly offer? Maybe pharmacies are different in the US to the UK but I don’t know of anything that a pharmacy could offer. At present we don’t have any medication for ME/CFS. I take a lot of nutritional supplements which do help but I don’t get them from a pharmacy. My experience is that GPs know nothing about this aspect of helping people with ME and i would expect a pharmacist to be the same. There is a parallel health service in the UK offering nutritional supplements and behavioural ways of improving functioning that the NHS is not interested in and in fact in my experience the NHS is extremely scornful of these approaches
LikeLike
If you don’t understand what pharmacists know about, and therefore, how they can help, well hopefully I can help with that. I am in the process of writing a blog series for patients about pharmacy and the services offered so that other patients can make the best use of their pharmacy. It’s not true that there are no treatments – some of the symptoms can be managed by medication, such as pain and sleep. I’m unaware of what the US offers because I’m in the UK though, so I can only give UK-specific information. I have ME myself and found my pharmacist to be the most useful and least judgemental health professional, before I did my degree and qualified. I see it as a duty as a health professional with ME to educate my fellow health professionals about our illness. I find it hard to see why that isn’t a good thing? You can read more about my background on the following posts:
World Pharmacists Day 2015
Studying with M.E. – The proudest day of my life and my struggle to get there
LikeLike