Feeling angry - stoma supplies and dignity

[testarossa71]

Just had a bad phone call and am feeling so angry - I need to vent.

I ordered my stoma products as I have done every month for the last 18 months - through their online portal. Their system sends an email to the GP, they authorise, and the products are dispatched and arrive with me, usually not more than a week later. For some reason, the message didn't arrive/wasn't seen by the GP (I can see if it's been authorised on the portal) so I called to chase.

A woman called me back, announced herself as 'the pharmacist' (no name) and proceeded to tell me I was ordering incorrectly, and was wasting NHS resources by ordering the products I do. (These are the products that the Stoma Team recommended I start with, and which have been tweaked by them, me, and the stoma supplies people until we've found a combination of products that fits and functions well - it's been a bit of a process). She started by saying that I shouldn't deal direct with Coloplast and that everything should go through the surgery, to which I said that I liked the visibility that I get from the online portal and that this process had been ongoing since Dec'20 with the surgery's approval. She then told me that two products I use are very expensive compared to the next brand and that they would be swapping me over to the cheaper one immediately.

My brain went into panic mode - having a solid, reliable seal on the bag is the difference between living as normal a life as I'm ever going to manage, or soiling myself - in bed, in public, anywhere. I said I wasn't at all happy with being made to swap and would need to trial/sample any new product first to be sure that I was happy with it. She said they don't offer samples, to which I replied that Coloplast do, and that if she wanted me to swap, she would need to get the samples sent to me. She then accused me of not wanting to save the NHS money, and how I was causing her more work when she already had too many things to do this afternoon. All her own words. I suggested that she didn't understand how vital it is to know that your stoma is secure, and she finally agreed to send my full, usual order, with an extra box of each of the two new products so that I can try them for myself. (I have gone through this process previously with Coloplast and have been happy to change products a couple of times as a result, so I'm open to change and fully support saving the NHS money - just not in the way she initially insisted it be done).

Her tone was so sharp, the attack so unexpected, and she was so passive-aggressive - I felt absolutely ambushed by someone who is meant to be patient-centric. I'm a person first, a patient second, and a budget-user third. I felt and still feel dehumanised and degraded.

I would never dream of asking a man how many sheets of toilet roll he uses when he has a poo, and telling him he'll only be getting one-ply instead of two... or telling a woman she uses too many tampons and she'll only be getting pads from now on. Can you imagine? Where is the dignity? I am so angry and upset. My GP practice has been so supportive throughout my whole diagnosis and beyond so I'm just floored by the way this one person has treated me.

Has anyone else experienced this? Or am I just being a whiny a**hole?

testarossa71

[Lyndy]

First of all, well done for standing up for yourself! I note that many pharmacies now have a poster asking people to respect their workers and not to abuse them…well it works both ways!I would suggest you lodge a formal complaint about this person…maybe pals can help. Our lives are difficult enough, without being accused like this. I had similar problems when I had IPC drains.. I dealt with the suppliers direct because it was the only way to ensure I got the right delivery xx

[Journeytime]

What a horrible experience for you. Totally unacceptable to be spoken to like that. I would make a formal written complaint. I admire your strength in fighting for what you need. No one should have to justify why they need a product that has been prescribed by a professional. You have every right to feel angry, I feel angry just reading this. Stay strong and know you are worth every penny to ensure you live your best life. Sending hugs

[SASSY196]

That is appalling. I am a bit flabbergasted as isn't it the stoma nurse and GP who decide what products you need, not a pharmacist? . I would definitely put a complaint in in writing , it's important people learn from what they say and how they behave. I always suggest people walk in each others steps.

My daughter has type 1 diabetes. She was diagnosed at 9 years and has always been with same GP surgery. She checks her bloods quite frequently and gets through quite a lot of strip's but she has managed to not be hospitalised. Anyway when she was about 17 one doctor took it upon himself to refuse to give her her usual supply, he did this without discussion or consultation when she was unwell with a cold. She had no blood test strip's and could not check her blood sugar levels. . I was livid because they had for 9 years encouraged and supported her frequency of tests, so I did a' sit in ' at the surgery. I just sat there and refused to move until he spoke with me. It took I think about 3 hours, I think they thought I would give in but I just sat and sat ( in chair). I got him to revoke his policy. I didn't mind them changing things, they just needed to do it in consultation with her.

[testarossa71 in reply to SASSY196]

Oh my goodness. Congratulations to your daughter on being so mature and taking control of her condition at such a young age. And to you, for standing up (while sitting down!) for her.

Your comment about consultation is bang on. That's all I want.

If she'd started the conversation with a 'Look, you know that the NHS is strapped. We're under pressure here at the practice too and doing a budget review. We've found a couple of products that you use that could potentially be substituted at a lower cost to us. If we got you some samples, would you be open to trying those out? And my answer would have been - 'Yes, of course'.

It's so bloody simple.

[Summergold2 in reply to SASSY196]

GREAT JOB!!!!! I have been told on certain occasions that I don't need a PET SCAN and wouldn't authorize until I start telling them they want me to expire you get a kick back AND they don't have to pay me my retirement and how much of that are you going to get ........so amazing all of a sudden everything every time now is authorized. You really have to be your own advocate in everything!!!!

[Worrieddaughter95]

Be your own advocate, this is a very big deal and you deserve more X

[Neona]

Yes - very similar . First step - complain to the GP surgery Practice Manager- copy and paste the above. Totally unnacceptable. I used to get a phone call every month from the very efficient stoma company but my surgery decided they could save money by making me order dire ctly through the surgery. They then tried to force cheaper, poor quality products on me which came from their “ own supplier”. I complained. We ended up with a compromise: The surgery phone me every month to see what I need. I have only products from my original stoma supply company. The surgery have told me they are” experts” on stoma supply- truth is they have no idea and waste loads of money sending duplicates because they don’t understand what the products are for. Stick to your guns!

[Lizzieanne]

I can't believe what you have told us and well done for standing up to them. I just hope theyare never in this position. As for wastage just stay in hospital for a week and see what happens there.

[Davonian in reply to Lizzieanne]

Totally agree...

[Jayniiee]

Hi testarossa

I'm so sorry you had to go through that.

If it were me, i would be investigating who this person was and writing a letter/email, giving all the details of how this conversation made you feel, in fact much of the detail that you give above and copying in their mamager. I hate complaining, but I think letting them know how you feel will stop this person from doing it to someone else. Maybe your letter might also result in some extra training for her, which it seems she badly needs. Perhaps you could have a conversation with your GP about it, you could tell your GP how much you appreciate the support they have given you. I hope you manage to let this person know the impact of their attitude, if that is what you decide. Sending a big mahoosive hug to you xxx

[Loglady01]

I am so sorry to hear that you have had this horrible experience.As suggested above, definitely write to the practice manager, and ask for a meeting with them. You did amazingly well to stand up for yourself, but the next person might not be able to. Hopefully by bringing this to their attention changes will happen in the way the pharmacist treats patients.

[ZenaJ]

What a terrible experience, I feel for you.

When I worked in a pharmacy we were only allowed to fill the prescription as prescribed by the GP even if we knew there was an identical product that was cheaper. Occasionally, a doctor would accidentally prescribe the wrong dosage and we would phone the surgery to check which was much appreciated but we would never change a prescription ourselves. it would require the GP to send a new one. I think this pharmacist went beyond her pay grade.

I hope you're feeling calmer now and after contacting your GP and writing your complaint letter are filled with your old confidence.

[SopSinger]

Echoing what others say above, I'd write a formal letter of complaint (to the practice manager and also to the pharmacy manager) and cc your stoma nurse. I sometimes had to deal with this one-size-fits-all approach when I lived in the USA and had to deal with insurance. I didn't think I'd see it back here in the UK. In the US at least, a prescription is a legal document and a pharmacist cannot change it without consultation with a doctor. I think a GP can flag your notes with comments that your prescription cannot be changed. Let us know how things go!

[SUE7777]

What a cheeky rude idiot! You should tell your GP about this it is not her job to tell you what products to use. You can also change pharmacy so you don’t deal with her again. Sorry you had to put up with that and not even giving her name suggests she takes this attitude a lot. The NHS would save money by getting rid of her (sorry I’m making a gender assumption). Good luck I’m with you. Sue xx

[Yorkiepudd]

That is disgraceful and I’d certainly make a formal complaint. I know some surgeries have prescribing pharmacists (mine does and is the one who generally undertakes medication reviews) but it doesn’t sound like this was the case; in any event, change is/should be by consultation not shouting down. Well done you for sticking to your guns and getting what you need. Her comment about saving money would carry more weight if we hadn’t all witnessed ways in which they pee money up the wall on some things! I’ve also seen the notices about respect in numerous places. I wholeheartedly agree with this but it works both ways which sadly too often isn’t the case x

[Davonian]

I hear you and am personally understanding of the need to vent. Been there myself and you are definately not a whiny ar..hole. 😃 You explained yourself perfectly, calmly and not in an aggressive, sharp manner, unlike this 'professional' member of the gp practice.We all know and understand all about nhs budgets etc. We are not pricing these products or are even aware of each item's individual price but we are very aware of the high costs that pharmaceutical companies are charging and companies exploiting the costs for our medical necessities.

So, definately a written formal complaint to the practice manager and a copy of the email to your stoma care unit given this totally unprofessional attitude. I think they would be appalled. You are working with the stoma care unit who know what works best for you. Some cheaper products don't always provide the confidence for our needs and the samples that are offered by the companies are available for us to try before we can possibly change. I also use Coloplast so know they do this. A very good company that I can rely on and are happy with.

It's hard enough having a stoma and cancer, as I personally know. Our (very much needed) personal time writing formal complaints we can do without but unfortunately are very necessary to make a complete awareness and understanding for the personal issues we and others encounter at times.

All the best, Davonian xx

[Tulips66]

Hi I was just getting angry reading your post so I can only imagine how you feel. I am sitting here with steam coming out my ears I am so angry for you. I am not sure I have picked this up properly but this woman is a pharmacist in the pharmacy you use? Does she actually work for the NHS? If not she has no given right to lecture you on what products you should order & use 😤. When I started using colostomy bags back in 2019 the stoma nurse had me using a two piece bag & seal. I had several accidents where the bag parted from the seal which I found soul destroying. When I was going on my first holiday abroad I got in touch with the nurse & asked could she recommend other bags. She suggested the bag with the seal built in. To say it was the best thing ever is an understatement. I have ordered these all the time since & I have never had an accident with them. I am sure they are dearer but I am the one living with this. I am in Ireland but I ring my Gp & say I need a prescription for my bags. They in turn she faxes it to my pharmacy who order them from "Salts" in my case & I pick them up from them 2 days later. In Ireland the HSE (who pay for my bags) is the same as the NHS in the UK & not once has anyone said "those bags are not what was recommended by the hospital" & what you are now using are too expensive. If they did I would fight them all the way & I am usually a quiet person. You need to complain about this uncaring, selfish woman, as it sounds like she had a bad day & took it out on you. I hope this woman never ends up with a colostomy bag herself where her life is completely turned upside down & the one comfort you have is a bag that doesn't cause problems & which gives you the confidence to carry on with as normal a life as possible. Stand your ground on this & please don't back down. Let me know how you get on. Hugs from another ostomate Mag Xx

[Sherrym]

Human beings come in so many varieties! Of course u are not the a-hole, but that uncaring, unsympathetic EXCUSE for a person IS the a-hole.In our position it’s hard to accept, we meet so much kindness & assistance in most directions, then suddenly & unexpectedly are floored by just ONE individual.

U are strong & supported, forget her or report her.

Good luck going forward.