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

(420 Posts)
ferry23 Mon 28-Jul-25 07:08:04

Some of you will know my health problem from my thread in Health about a paractice nurse not reading my notes and administering treatment against my wishes.

I'll not go back over the whole thing but suffice to say I've been living with a wound to my leg since before Christmas which just won't heal.

I do have a referral to the Vascular Unit but no idea how long that will be.

We are starting a new treatment today of trimovate cream which has to be applied every day for the first 5 days so I have to get to the surgery every day (about 3 miles away).

I've been going to the surgery initially twice a week since January and three times a week since beginning of June.

Lots of troubles with dressings slipping away from wound and bandages falling down or unravelling.

Although I'm told they're using the most absorbent dressings, within hours of a dressing change, fluids from the wounds have seeped through 3 layers of dressings and pads & the stockinette. .The volume is so great that it starts to pool around my ankle and the weight pulls the dressings down my leg. It look like I've got a tyre around my ankle - if this makes sense.

Once I get dressed it seeps through the trouser leg and often onto my shoe. If I get the angle slightly wrong, than even getting my knickers off can mean the knickers get pulled over the wet bandage and I then have wet knickers for the rest of the day. I can't go out as everything moves down my leg and anyway, it looks as if I've wet myself as the fluid seeps through my trousers.

I've just entered the next three weeks appointments with the nurse in my calendar and out of interest, I looked back to see when I actually went out socially. I've been out twice since the end of February.

Despite agreeing with one of the senior practice nurses that continuity of care and treatment by qualified nurses only is number 1 priority, I will be seeing 4 different people over the next couple of weeks, one of whom is a Health Care Assistant.

So I'm basically stuck at home staring at the walls sitting with a wet, cold, soggy mess of dressings and bandages around my leg and ankle. In considerable pain as the fluid is toxic and burns my skin as it collects in the dressing and rests on my leg for two or three days. I haven't been able to shower properly for months. The leg cover that you can get for showering is no good for my dressings.

I've now got to go through the rigmarole of trying to get myself dressed and into the surgery - having to go via the chemist to pick up the trimovate cream as they didn't deliver it to me on Friday and can't deliver until late this afternoon.

So my question is, am I being unreasonable to expect a better quality of life? I'm quite down in the dumps about it this morning as I've had this soggy mess of dressings, pads and bandage bunches up around my lower leg and ankle since Friday lunchtime. I'm not sure how much longer I can live like this.

Honest opinions please, if you think I should just suck it up then please say so. I genuinely would like to know if I really am being unreaonable.

knspol Thu 31-Jul-25 14:35:37

I don't think you're being at all unreasonable in fact considering what you have been and are still going through then I think you're being remarkably measured.
I don't have any advice to offer but did not want your heart wrenching post to go unacknowledged.
I do just wonder if you're feeling strong enough to sit at the doctors surgery and demand to see a doctor and be referred to the vascular unit as a matter of urgency instead of what might be a lengthy wait? Easy to say I know. I wish you very well.

butterandjam Thu 31-Jul-25 15:30:49

ferry23

I was with the nurse for ages and also GP came and looked again. I said to them pretty much what I put on here this morning. Despite the pain I was in, they both said it's looking much healthier and is much drier than it was on Monday. The nurse left the bandages off for a bit then massaged with barrier cream and applied trimovate. It is actually a lot more comfortable now. I came home and fell asleep so it must have eased off for me to do that. We've agreed a plan of action for the next 48 hours and a contingency for the weekend. Pain relief will be prescribed by GP this afternoon.
District Nurse will not accept a referral for anyone who can leave the home even if it is by taxi or with the help of a career, friend, relative. However....it may well be of course, that by Friday I may not even be able to manage to get down the step from my front door, in which case, I shall technically be housebound.....

Play by their rules, ferry.

If I were in your state I'd declare myself "unable to exit home therefore housebound" PDQ, like in the next half hour.

ferry23 Thu 31-Jul-25 15:43:38

Hello everyone.

I've had a change of pain relief medication - but the good news is that I haven't yet had to use it. I'm not experiencing the level of pain that I was on Tuesday - in fact at the moment I've got no pain at all.

The nurse was happy today - it's altogether much drier and she does think that the trimovate cream is helping the healing process.

District Nurses won't come out to me despite lots of pressure from the surgery itself - and I can see that they really have tried. It means that I don't get a dressing change on Saturday or Sunday unless I can fiind somone who is prepared to be shown how to do it tomorrow- which isn't going to happen.

I'm looking into getting some kind of private nurse to come once over the weekend - it will be a bit costly but it is what it is. I could be in the US or similar and having to pay a fortune for all the different dressings etc I've had for the last 8 months which I'm sure would be horrendously epensive so I'm trying to look on the bright(er) side.

As the leg is ulcerated, it is going to be painful at times, the nurse said she quite understands how painful it can be I'm not the only patient she has that has to resort to heavy duty pain relief especially when dressings are changed. But she was optimistic - it's certainly drier than it was. It's a pleasure not to have to sit with soggy cold dressings and bandages falling down my leg.

I want to say a sincere thank you to you all - you lifted my spirits and made me feel not so alone when I was at a very low ebb. What a kindly lot you all are. smile

Norah Thu 31-Jul-25 15:53:07

Wonderful news. Thank you for updating. flowers

CariadAgain Thu 31-Jul-25 16:24:30

Fingers crossed that things will continue to go better in future.

Chocolatelovinggran Thu 31-Jul-25 16:35:30

Good news, ferry. I've PM'd you, so please keep me informed.

blue14 Thu 31-Jul-25 16:51:07

Thanks for the update ferry.
Good news that you have no pain at present.
Let’s hope that this improvement continues.

Allira Thu 31-Jul-25 17:11:28

Oh, progress!
Let's hope it continues.

I hope you can find someone to dress it for you at the weekend.
The District Nurses really should send someone out at weekends.

HelterSkelter1 Thu 31-Jul-25 17:24:32

Good news that some healing is happening and the pain has retreated. I cannot understand why a D Nurse cant come out at the weekend as it is ongoing treatment and needs daily dressing. Is there a walk in treatment centre for minor emergencies somewhere in your neck of the woods? Although you may not get a well trained nurse there who is skilled in dressings.
Did the GP nurse suggest or recommend a private nurse? Shame she can't pop in on Sat and Sunday as a free lance.
Good to read that you are a bit happier today.

Grannynannywanny Thu 31-Jul-25 17:32:32

Delighted to read your update ferry23 and to hear you are feeling more comfortable.

It might be worthwhile asking your nurse tomorrow for a supply of dressings for over the weekend. I wouldn’t be optimistic at this late stage that’ll you’ll find a private nurse who will arrive stocked up with what you’re currently having on your leg. Just when there appears to be an improvement you don’t want to risk another nurse doing her own thing over the weekend.

It’s very frustrating that your nurse is of the opinion you need daily dressing changes but that doesn’t include weekends.

Grannynannywanny Thu 31-Jul-25 17:44:50

I’ve reported the spam poster who has reposted my post from 10 mins ago telling me my account has been suspended because I’ve violated US law 😆

silverlining48 Thu 31-Jul-25 17:54:15

It’s good to read you have had some help and are starting to feel better.

Grannynannywanny Thu 31-Jul-25 17:54:34

Thank you GN admin. That was a quick deletion!

Patsy70 Thu 31-Jul-25 17:55:17

So very pleased that you are at last free from pain, ferry, and that your dressing remains dry. I think you’d be very wise to have a private nurse dress your leg at the weekend, and as GNW suggests, ask your NHS nurse tomorrow for a supply of dressings. I hope you have a comfortable night. 💐

ferry23 Thu 31-Jul-25 17:58:51

HelterSkelter1

Good news that some healing is happening and the pain has retreated. I cannot understand why a D Nurse cant come out at the weekend as it is ongoing treatment and needs daily dressing. Is there a walk in treatment centre for minor emergencies somewhere in your neck of the woods? Although you may not get a well trained nurse there who is skilled in dressings.
Did the GP nurse suggest or recommend a private nurse? Shame she can't pop in on Sat and Sunday as a free lance.
Good to read that you are a bit happier today.

One of the nurses does actually live in the same village as I do. I made a big joke of saying I'll be lurking near her house for a crafty dressing change over the weekend but she just laughed. The other nurse is not so close and I know she's a single Mum.

Said nurse in same village is a senior prescribing nurse so an extra few pounds is probably not majorly alluring, I'm guessing she'll be on a reasonable decent salary.

Don't think the thought hadn't crossed my mind!

They always make sure I've got a supply of everything I need at home in case I do find someone to help out with the dressings.

Allira Thu 31-Jul-25 18:06:50

They always make sure I've got a supply of everything I need at home in case I do find someone to help out with the dressings.
I hope they included surgical gloves too!

This really is a sorry state of affairs, though.
I think the District Nurses should be ashamed, but I suppose bending the rules to help a patient in need at the weekend is more than their job's worth.

Mel1967 Thu 31-Jul-25 18:12:03

As it’s becoming increasingly difficult for you to drive to your surgery, I was Just wondering, what reason have the District Nurses given for not treating you at home?

Lesley60 Thu 31-Jul-25 18:12:33

I can only say what I would do if I was in your situation and that is contact PALS which stands for patient advice and Liaison service.
The initial nurse was wrong and negligent in what she did and this has caused you physical and emotional pain, therefore your care should be priority to try and rectify the situation I.e home visits from the community nurse to do your dressings regularly as a starting point, and a specialist wound care nurse should be visiting.
The PALS team can give you more advice on this, just contact your local hospital and ask to be put through to them.
Hope this helps a little and hope it all gets sorted soon 💐

Allira Thu 31-Jul-25 18:21:19

I agree with Lesley60
Phone PALS.

It's hard when you're alone, in pain and feeling miserable but really, the care you were receiving was well below the standard expected from the NHS, even though the surgery is trying now, and the District Nurses are failing in their duty of care.

ferry23 Thu 31-Jul-25 18:22:40

Allira

^They always make sure I've got a supply of everything I need at home in case I do find someone to help out with the dressings.^
I hope they included surgical gloves too!

This really is a sorry state of affairs, though.
I think the District Nurses should be ashamed, but I suppose bending the rules to help a patient in need at the weekend is more than their job's worth.

I'm afraid I've no faith in the District Nursing Team here. When my Dad was nearing end of life - but still living independently and very stoic, I went to see him as I did every day and he was ashen and obviously in pain. He just managed to tell me that he thought his stoma bag was blocked. I called the District Nurse team as I knew from experience they would probably be quicker than a 999 call. The person I spoke to just kept telling me in a monosyllabic voice that I needed to get his carer to help. Well I was his carer and I'd no idea how to help him out at this stage. I kept telling her that, but she was like a stuck record.

So it was a 999 call which took ages. 8 days later he was dead. Just a 10 minute call from a District Nurse would have relieved some of his suffering even if the outcome had been the same.

I kicked up a stink and had various meetings with various senior people who gave me the same old platitudes "lessons will be learnt" etc. etc. Didn't really matter anyway, nothing was going to bring my Dad back to me.

And p.s - yes, they let me have half a box of surgical gloves smile

Patsy70 Thu 31-Jul-25 18:34:04

You mentioned your cousin in your earlier thread ferry. Is there any chance she could visit you again, at least to provide some company?

Allira Thu 31-Jul-25 18:40:14

Oh dear. Your poor Dad.

Ours are good - but 'rules is rules'!

Charleygirl5 Thu 31-Jul-25 18:48:18

ferry You should not have to pay for a private nurse at the weekend. I would ring 111 and I am sure they will get a District Nurse out pronto. They may also suggest you go to A&E, but please, keep your money.

ferry23 Thu 31-Jul-25 18:51:15

Charleygirl5

ferry You should not have to pay for a private nurse at the weekend. I would ring 111 and I am sure they will get a District Nurse out pronto. They may also suggest you go to A&E, but please, keep your money.

Will do, thanks.

ferry23 Thu 31-Jul-25 18:52:55

Patsy70

You mentioned your cousin in your earlier thread ferry. Is there any chance she could visit you again, at least to provide some company?

Not this weekend unfortunately, but she's phoning every day.