AIBU - Is it fair for me to live like this?

Ooh I reckon one black slipper and a pink loafer would get you noticed!,

cleoryin388

Nah, this is BS. You’re being let down by the system, plain and simple. If the wound’s been open since Christmas and they’re still fumbling around with random staff and half-assed dressings, someone needs to get their act together

You've put it very bluntly- but I agree 100%!

Why don't you ask for home delivery ?
I am housebound and my medications delivered free of charge ?


ee

Fidelity2

Why don't you ask for home delivery ?
I am housebound and my medications delivered free of charge ?

ee

I get home delivery. Unless the prescription is urgent and needed on the same day.

Definitely you should not have this going on without some further help. When I was doing hospital car service there was a patients group, where if you had any problems about your situation or thought that the treatment was not right or going on for too long or whatever, you could contact them and they would help you. They knew the hospital and the system and would be able to suggest the best way forward and be able to direct you to the right department, and also be a back up for you. I suggest that you look at the hospital departments where you visit your consultant and see if they are any help.

Other than that , again could you look at your doctors surgery and see if there is something similar there, or a support group for your particular problems? Here quite separately we have a community group called Upreach. They do all sorts of things and a lot of places to help, so I go to a womens group where all are welcome no matter what age or situation. They also have a car transport system where you can get someone to take you to whatever you need. You pay for the trip of course, but these drivers are volunteers and can take you at the time you need not on a bus time or an expensive taxi, and we dont just do medical trips but whatever you need us for. They also have group meetings for specific illness groups and have one here for fibromyalgia etc. So I would look around locally and see if there is something like this that might be available.

If you draw a blank there then my next suggestion is going to your library and looking up the up to date contacts for people like the WI, the Rotary group, church groups etc. Many of these organisations have support plans and may be able to help you with both transport and things like collecting prescriptions.

The other thing you might need is someone like me!! Do you have a friend or acquaintance who you know is good at dealing with people like the council and the doctors or whatever? If you had someone you trust, you could explain all your situation to them and what is the most relevant at that moment and ask them to sort it on your behalf. Usually there is no problem so long as you give permission for them to speak on your behalf. So on a telephone I would ring the Water board, state who I am and who I am speaking for. Then hand the phone over to the person for them to give their permision for the company to speak to me about their situation and we go on from there. It usually works very well as a) I know the facts and am ready and armed with what questions need to be answered etc, and will not be fobbed off until I get the answers I need. b) I am not personally affected or involved, so am able to be calm and in the chess mode, where I can counter any move they make to put me off. I make it very clear that I shall be continuing to sort this out to my satisfaction whether it takes 10 minutes or 10 months! c) I keep notes and ask for names of people, any letters that are important I send recorded delivery so that they cannot say they have not received them etc.

This , in a polite way, shows them that I mean business and will not be giving up until the situation is resolved as much as possible or I have got the right service my patient needs organised. Being able to get someone else to do this for you also helps you. They will be supporting you, and confirming that you have every right and need to get this situation sorted. You can talk to them and it will allow you to be less stressed by having someone else involved and being there for you. You should then be able to relax a little when you dont feel it is all down to you on your own, and that in itself may help you physically anyway.

If you lived in North Yorkshire I would offer my services but I am sure that there will be someone in your area. Wishing you the best of luck with getting some improvement both physical and mental and at least we are here and available to be in touch at any time.

Dont know if you bake much or are able to do so but I had a great bread recipe that only needed to rise once. It was a brilliant thing to make when I was angry and frustrated with things like this. I could bash the bread and knead it very well , thinking of the person or dept that I would rather be bashing! I occasionally do it now when Nigel Farrage drives me mad, and get a great loaf to eat too and release of tension!!

ferry23 how are you doing today?

Cressida

ferry23 how are you doing today?

Oh dear, not so good I'm afraid. Intense and excrutiating pain from around 5pm yesterday. I did a ready meal around 7 but I just had a couple of mouthfuls and threw the rest of it away in the early hours. Took tramadol and paracetamol but they didn't touch the sides. It was scary and I'm ashamed to admit I had a bit of a panic attack. I managed to doze on and off from about 6 -8 this morning. Everything is so much more scary in the middle of the night and you're on your own.

Before my dressing change today I sent an online form in explaining all this. I actually got to the surgery an hour earlier so I could sit in the lobby as I didn't want to be on my own. Believe me this is absolutely NOT like me at all.

By the time I got to see the nurse she'd had a message from one of the GP's. She took photos of my leg and sent them straight over to GP. I've now been prescribed liquid morphine and yet another course of antibiotics for 10 days as the last swab came back with pseudomonus again. (My 5th course this year ). I am taking probiotics and to date haven't had any side effects from the antibiotics but having to take so many is worrying me.

I've just phone the chemist to make sure they'll deliver today but they don't know so I have to call back later and then I'll just have to get there and collect the prescrition myself. Can't do many more nights like this.

ferry23 I might well be misremembering but I have this niggle that the DN who treated my pseudomonas infection said that it is difficult to treat with antibiotics and that frequent bathing the wound was the way to get rid of it.

I now realise how fortunate I was that I only suffered a couple of really bad weeks with the excruciating pain and thank my lucky stars that Debbie realised what was happening to my leg and it got the treatment it needed.

I think you should be in hospital.
How would you feel about that.
Is it safe to drive on opiods. Morphine. Tramadol.
Ring 111 and let them send an ambulance.
Lean on the chocolate granny who lives nearby and has offered

I'm so sorry to read this ferry.
It really is one step forward and two steps back.

Do be very, very careful with the liquid morphine.
I'm sure you've been advised not to take it with the Tramadol.
I hope the chemist deliver it with the antibiotics this afternoon.

I hope you have as peaceful a night as you can in the circumstances.

I agree with welbeck. I think you need inpatient care to get this under control. It's been 8 months ferry.

Dear Ferry you need help.
Medical. Nursing. Domestic. Practical. Logistics. Transport.
It's so difficult when you live alone and have been struggling for so long.
No wonder the wound keeps getting re infected
With inadequate dressing regime. And having to drive.
Unravelling bandages trailing in the dirt and exudate burning.
Ring 111. Break down and cry. Tell them what you are enduring. The daily details.
How you feel you can't go on.
If they
the NHS generally
can palm you off they will.
Don't let them.
You've worked hard all your life and cared for others.
Paid your dues.
You need help now. Proper help.

Oh dear. Ring 111 and tell them how you feel today. They will have your record from your previous call. You can't drive on morphine surely. It all sounds so ridiculous. I feel so sorry for you. Like others on here I think you should be in hospital.
In your shoes I would be telling 111 I feel suicidal. And I think by now I would be.
If the surgery can't deal with this they should be getting you to hospital. It would be bad enough if you were not on your own, but to be coping on your own is so unfair.
Apart from your cousin, do you have any other relations to argue on your behalf or just support you?
Did you let the surgery nurse know how you are really feeling. If you don't want to ring 111, can you ring the surgery and say you just can't take any more?
I am so sorry after all this time you are not healing and out of pain.

I feel like ringing 111 on your behalf...this is too much for you to deal with for soo long...pls get yourself on phone or to A&E

I did break down and cry with the nurse this morning. The GP who prescribed today has messaged me and asked if I would like to speak to her and I've said yes so she is calling me this afternoon. If I could get the pain under control I would better be able to cope. It's starting to hurt again and I need the prescription now, I am going to chase up the chemist again.

Ferry23 I haven’t contributed to this thread before because I don’t have anything of use to add but I want to say that my heart goes out you. You’re being treated appallingly and I am another who thinks you should be in hospital so they can get a grip on your health situation.

I think I must be carrying some unlucky gene at the moment.

Phoned chemist. Asked if prescription was ready. Was told they've got my prescription. Asked again if it's ready. Mumbling and shuffling in background. Yes it's ready. So I ask if they're going to be able to deliver it this afternoon. Can't really tell me but they'll try. Tell them I'm in consderable pain, can't get out, please I'd be very grateful if it could be delivered. Have I got someone who can pick it up? NO! If I did I'd send them. OK, they'll try.

Couldn't risk it. Phoned them back and said I'm going to have drive to them and if I call when I'm outside can they please being it out to me. So hop into my gardening shoes, lock up, gingerly slide myself into car and drive to chemist. Phone them - I'm outside, on the main road side - please bring prescription out. Oh sorry, there was a bit of confusion, the driver's got your prescription and will deliver later this afternoon.

F×*"*!!
(Sorry)

Show your GP this thread when she comes.
Tell her you need to go to hospital in an ambulance.
This has gone on long enough.

Oh my, I have to recognise this as being funny otherwise I might fall off the edge of sanity. After all that -

the chemist has just phoned me to tell me my prescription has been done and it will be delivered later today.

I'm beginning to think I'm existing on some kind of parallel universe and nobody has given me the rule book.

At least you're still laughing (or is it hysteria by now?)

As others have said, I'd definitely ring 111 and say you need an ambulance. I wouldn't say you are suicidal though, as someone else suggested upthread (you're not are you?) as that could start you on a whole new pathway where I'm sure you don't want to be. Good luck this afternoon - we've all got your back. X

ferry23 I just want to apologise for my earlier comment, which was insensitive and unfair. I had misread something you said about cutting and thought it was the footwear but obviously it was the dressing. The only point I was trying to make was about people being trusted and trained to do their own procedures where appropriate - when I had cancer recently I was doing my own injections and dressings, as I was happy and able to do this. Saves relying on people who may or may not turn up. Anyway, I realise this is not appropriate for you so again, I apologise unreservedly and I hope you get some relief very soon.

The trouble is ferry that you are appearing to be coping as far as the medics are concerned. You are getting yourself to the surgery and to the pharmacy. Albeit at great effort. So they will treat you as if you are coping and there is no problem.
I think you have to say "I cannot cope with this anymore. I am at the end of my tether" no explanations, "I am on my own and I cannot cope". The ball has to be in their court to do something.
During my chemo treatment during covid lockdown I was ambulanced to another hospital with possible sepsis. After spending several hours on an IV antibiotics they felt it was safer for me to go home with antibiotics to take because of the risk of covid in the hospital. As I was finding it difficult to walk because of my reaction to the "sepsis" I was in a wheelchair and thought I would be taken home by ambulance. But no the "kindly" nurse said if you can get into a wheelchair you can get into a taxi. And I was shipped off home in a taxi and luckily the taxi driver helped almost carried me to the door. DH housebound and unable to help. And it was freezing cold in a strong wind in December at 9.30 at night. I suppose they thought I could cope at 72.
I will never not stand up for myself again.
I hope when the GP rings you, you are able to tell her how it is. And how the pharmacy screwed up. Dont laugh about it to her. It is appalling and sadly not uncommon. I expect their calls are monitored/recorded so tell her you can no longer cope with the pain.

I am beginning to think this chronic infection should be treated in hospital now.

Pseudomonas is a water borne bacteria and loves warm moist, damp places inside or outside your body.

It is also incredibly difficult to treat. Mine only got treated after a stay in hospital for a few weeks.

I think you need a course of IV antibiotics- but I'm not your GP, I'm only speaking from my own experience.

I would watch for any sign of fever, you are at risk of sepsis through this.

I always watch this thread with interest because I expect at sometime, someone will get you sorted Ferry but it seems to be taking way too long...

I can’t believe this is happening. I agree that you should be treated in hospital as you need IV antibiotics and IV morphine. This situation cannot continue. If there is nobody able to drive you to A&E, then calling 111 is your only option, and I sincerely hope they respond urgently and send an ambulance. I agree with keepingquiet that you should watch for any sign of fever.