You can't make this sh*t up. Have been trying to get my repeat since 25th November.
I usually use Echo as the app has a nice simple interface, I find the text based chat help useful as I can't do phone calls for various reasons and they deliver my medication to me. I had a nice structured system in place, important for someone with autism, severe anxiety etc.
I have mobility problems, am unfamiliar to the area (literally know no one and nowhere), am agoraphobic, have no one who can just go collect my prescriptions for me etc and the last time I tried to go anywhere on my own I had a full blown meltdown in tears in a pile on the road lost whilst it was pissing down with rain until a stranger had to pick me up off the street and help me get to my destination.
Not only did they change my nominated pharmacy without asking/telling me twice (I found out on the 25th that they had done this on the 13th) but straight up rejected my prescription request because I did it through Echo, but when they notified me that they'd received the prescription request from them a few days earlier there was no indication this would be a problem. They also didn't indicate an issue when I asked to double check Echo was still my nominated pharmacy mentioning that I'd noticed they'd changed it and had changed it back- no explanation as to why). Then on my 3rd attempt at ordering when I used their own system instead of my app, they STILL went ahead and sent my prescription to Boots. Only they didn't tell me which branch of Boots, so I spent hours on hold with an assistant from Relay UK (textphone service) who traced the prescription and said it had been sent to some surgery and not a Boots store. They gave me the number to call.
I called the number- it said number unobtainable. So I found another number for the surgery which was hard to find as the building had been renamed/rebranded under a merger with two other surgeries and after another hour on hold that the Boots was apparently next door to them, but a) Boots told me it was the surgery that had my prescription not a Boots branch and b) the surgery could have told me that they had sent the prescription next door to them instead of leaving me to guess which Boots. They didn't even send it to my nearest pharmacy or a LLoyd's who probably would have delivered to me from there as an Echo customer as I made it very clear that Echo was part of Lloyd's.
After much arguing I finally go them to agree to send my prescription to the pharmacy I bloody asked for in the first place, but I still have to individually type out every single medicine and dosage on their system every month instead of just using my nice NHS approved streamlined app.
Also they sent me an asthma review to complete, which they wanted me to bring back to the surgery in person! Why are you asking asthmatics to come in to the surgery just to drop off a form when they could complete a questionnaire online?
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Taima
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Goodness me! None of that is a reasonable way to treat someone who has autism. Well done for persevering!
Are you able to reiterate with your surgery that such unexpected changes are challenging for people with autism/anxiety?
Do you have a social worker? Anyone else who could advocate for you? That must have been a very difficult process to go through.
I got a little lost and am not quite sure what point you are at now with it all (I could probably figure it out if I read your post again, but duty calls at my house right now.) I think I would try to contact your surgery, from where your prescriptions are issued, and ensure that you get a satisfactory system set up for you for all your repeat prescriptions.
They need to know how difficult changes/speaking on the phone/going out are for you. Could you email or write to them?
Hi, thank you, I really was at the point of tears by the end of the day... I have been emailing them nearly every other day since the beginning of November trying to get a system in place anticipating these sorts of shenanigans and wanting to avoid them in the future but I might as well be talking to a brick wall. It's just nonsensical.
Trigger warning:
I have been trying to get help from a social worker my entire life. They have never once ever done anything to help when I was faced with severe domestic violence, sexual abuse etc as a child and even after becoming homeless multiple times as an adult, ending up in yet more situations with gratuitous domestic and sexual violence etc. I was repeatedly told they either would not or were unlikely to pick up my case and that is is with constant badgering over the last 2 years as a lot of things happened to that I can't even repeat. Even after I got a care act assessment that concluded I needed help with most daily tasks, can't access services in the community, struggle immensely to interact with people face to face and can't maintain a tenancy on my own they still decided I didn't need support. I had been allocated a support worker when I was in a homeless hostel and she's been forced to help me out here and there because I was SUPPOSED to be the responsibility of social services yet again, but even after having a very stressful meeting with my current support worker (who helped explain my support needs for the 500th time) and a social worker where they decided 'oh, she actually does need help' they've just stopped responding to all calls, texts emails etc. Haven't heard from them for a month. I'm not surprised because when I told them I'd just been violated so badly I couldn't go to the toilet but couldn't leave as I didn't understand how to get help from the council or apply for benefits- I told them I has self harmed and was contemplating another suicide attempt- they just didn't respond at all for a year, until my next employer was calling them herself as she'd had to call the police and am ambulance for me as I'd had a nervous breakdown working a job I could not handle in my condition for £3.90 an hour simply because it came with a room to sleep in and I needed to get away from the sexual exploitation. Even then they didn't do anything to actually help me and my ex apprenticeship assessor ended up working with me every single day to get through the mountains of paperwork, apply for benefits and took me to the doctor to get medical evidence I needed for the homelessness application as no one else would do it. Or then I'd get told actually I have been allocated a social worker, here's their details, I contact them and they never get back to me after months, so I get 'allocated' someone else ad infinitum. Even when she contacted SS they never responded or called back when they said they would or anything that was asked of them they just said 'oh we don't do that'. My ex apprenticeship assessor and I shared the sentiment of 'so what DO you actually do then? How many times does someone have to end up homeless or in modern slavery or nearly murdered or repeatedly ra*ped with multiple disabling conditions before you care? My whole life has been one train wreck of an abusive, exploitative, downright dangerous situation after another and they've never helped. I feel like things could have been so different and I would be in a completely different place today if they'd have stepped in earlier.
Sorry, rant over.
Yes I have told the surgery MANY many times in no uncertain terms the issues I have with unexpected changes speaking on the phone and going outside and not having any friends or family that can do these things for me. They always say they put a note on my file and my support worker has also reiterated all this to them on the phone for me twice. but they still phone me instead of email me as agreed, tell me to phone them to book a telephone appointment to tell them something minor, send me questionnaires asking me to deliver them to the surgery in person in the middle of a pandemic no less ask if I can just get someone else to collect my prescription and just go ahead and do things without asking or telling me. To not even tell me which Boots they sent it to and then not respond to messages for days afterward... All this could have been avoided if they just sent the prescription where I asked them to weeks ago.
The support worker was only supposed to be for when I was in the homeless hostel and even then she could only manage to see me for maybe an hour every month or something and often had to cancel because there's just one for the entire hostel. She's agreed to try to come out to me on Tuesday though to reiterate some things to the surgery for me (she'd very good at using a loud voice on the phone) and make sure they figure out some way I can get a review done as they've now told me they won't issue the next prescription without one (why not mention this two weeks ago). They still can't give me any good reason why they couldn't let me order with my app or have my prescription sent to the right pharmacy even when I ordered through their system.
In any case my pharmacy has the prescription, but because of the timing I have to wait for them to restock now. I gave myself PLENTY of time to order and still here I am suffering because I've been off my medication for over a week....
It sounds as though you have been really trying to help yourself, yet keep getting ignored or forgotten.
I just don’t understand why it’s so hard to get a little support. I can empathise as my daughter has autism and learning difficulties and I have had to fight for everything she has needed, Although it has been strangely far easier, since accessing adult social care for her.
I can’t think of any other helpful suggestions at the moment. You are doing the right thing to ask for help. Albeit hardwork. I am so frustrated for you. All I can say is to do your best to take care of yourself, and when you feel up to it, keep asking for what you need. Surely someone will respond favourably at some point.
You have an awful lot to cope with and to sort out. I wish I could be of more assistance. Sending positive thoughts and energy your way.
Oh Taima what a ridiculous way to treat you! Sounds like you have the prescription matter sorted, sort of. So stressful though. My surgery is signed up to Patient Line and when I tried to get onto Boots Home Delivery it just didn't work - the surgery just ignored all requeststhroughthe system. I suspect that whatever system your GP surgery has may be the issue, but at least you've got to an acceptable resolution.As for the asthma review, can you post it? If there's no available freepost return envelope with the questionnaire then you can buy stamps online. But I'm amazed that such forms aren't available in digital format, especially ten months into a pandemic.
I must admit that my GP surgery does stop prescriptions if asthma reviews are overdue. But they don't tell you that they've done it. It keeps us on our toes but at the time it's more than frustrating.
They didn't specify whether this is just a medication review or asthma review but I suspect general medication review because I'm new to the surgery. I don't know why they ignore me when I outright tell them I'm self harming, suicidal, can't think straight and haven't slept in 5 days when on a course of steroids with extensive psychiatric history but they think it is better to just abruptly deprive a patient of their medication when they report no issues and as you say, they don't tell you when they do these things. In the past I've logged in to my medical record online and seen entries indicating that had happened, but no attempt to contact me was made most of the time, or they tried to phone me once, when they already know that I do not speak on the phone and actually provided a number for a colleague at the time who was willing to authorised and willing to handle that sort of stuff for me.
I'd actually done a review for my old GP literally 1 or two weeks beforehand which was done online using the same patient record system so they should have been able to see those responses anyway.
That's really annoying their system didn't even work with Boots home delivery- they're such a massive and ubiquitous chain! It was annoying enough when I ordered through Echo, my surgery assured me that they had my prescription request and then I just got an email 2 days later saying your request has been refused because your GP doesn't work with 3rd parties. It was the fact that I ordered again through SystmOnline only for them to send it to a random Boots and not telling me which one that was just too much..
My current GP surgery (my last one closed) doesn't have a good reputation re prescriptions. Boots pharmacy staff had suggested that they have quite a few issues with my GP surgery and suggested good alternatives. I thought they were trying to divert the blame for a couple of delays. But one day while waiting in the queue at another pharmacy I overheard a frustrated discussion between a customer and the pharmacist. It turned out to be a failure on my GP's surgery to send them a digital prescription. The pharmacist was explaining that this was a regular occurrence. I stepped up and and said that I too have these problems but with Boots (the customer was so agitated I thought it best to confirm what the pharmacist was saying). Everything has settled down, but only because I use the surgery's preferred Patientline system, but it means I have to collect my prescribed meds from the pharmacy myself - it just doesn't work with home delivery systems.
Looking at the NHS website, it does seem to suggest that not all GP surgeries are yet signed up for all digital services and that the GP website will indicate whether or not they offer the electronic prescription service to approved home delivery providers. nhs.uk/nhs-services/gps/onl...
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