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

Friends are never to be found in these circumstances, you should have a better life but it rarely happens. As I've mentioned before I've no social life whatsoever because of a skin condition. Sometimes we can't change things. Wish you well.

I'm very sorry you are going through this. I suggest contacting your GP and asking them if it's possible to expedite your referral. I would also ask if you could have the out of hours contact details of the District Nursing service, who may be able to help you when the dressing has leaked. If all all fails contact PALS, I would be keeping a record of the problems you have encountered which will be the evidence you need to support a complaint.
I wish you well

I do remember your last post and, after having a similar wound myself, suggested a zinc based dressing that worked for me. Did your nurse try that?

How very kind of you.

ferry23 - so sorry for your situation. You are not being unreasonable to think this should be managed in a more professional way. Frankly, I would send a formal letter of complaint to your GP, to the local NHS Trust, and to your MP. The community nursing service should be involved to give your wound chance to benefit from the treatment (your bandages wouldn't fall down on the way home) but also because you could remove the dressings before they arrived so that at least some air could get to the ulcer (if that's what it is).

No- it is totally unfair that you are living like this!!
Your health centre sounds awful- I’m sure there is more they could do - eg putting you in touch with services/ charities that could help you with transport, get prescription items delivered to you etc.
Have you spoken to the practice manager?
Also would be worth trying your local MP, Parish Council, County council

Age concern, Red Coss etc may well be able to help! You need someone to argue your case for you!

I’m sure others are here will know of other sources of support?

Good luck!

OMG this is disgraceful! If it’s mandated that no one but a qualified nurse should attend to your wound then it seems to me that you ought to be visited at home daily to have your dressings attended. It makes economic sense, as much as anything, because the current situation isn’t helping either your physical or your mental health. Your predicament is utterly, utterly unacceptable and unfair.

Please let us know how you get on. My mother had several nasty wounds to the front of her leg on the bone. She had frequent visits from district nurse. They just changed the dressings, no special creams. Her skin was very fragile by this stage as into her late 90's. Another wound that was on an arm about to have a plastercast applied had a manuka honey dressing put on it under the plaster and all was well when cast removed weeks later.

How do you manage to get to the surgery for all these visits. Expecting yoh to travel with a lump of bandaging fallen down to your ankle seems rather unprofessional if not just plain uncaring. You say the cream is toxic and burns your skin for tgat aline I'd be telling tgem you are scared to walk about when the bandaging has slipped and will not be attending until it is fixed. I know it seems rather dramatic but the way you are being treated is just awful.

petra

Morning ferry.
I can feel how frustrated and sad you are from reading your post.
What I’m going to suggest might sound bizarre but I do know someone this treatment worked for. She was in your same situation for 2 years.
It’s leeches.
I listened to this program on radio 4 some time back.
It’s worth a listen.
www.bbc.co.uk/sounds/play/b07m5gwr

I was going to suggest the same.

I had a bad leg wound, that wouldn't heal. Not as bad as yours. I ended up taking antibiotics and prednisolone, which cleared it up quite quickly. The first cream, and dressing they were putting on, I turned out to be sensitive to, and was making it worse. Maybe check with your doctor, if a course of antibiotics would help, and a different cream.

I’m so sorry you are going through this nightmare. I think you are very brave and my heart goes out to you xxx

How did you get on with the doctor today Ferry?

So sorry. I don't think you are being at all unreasonable. Make a fuss. Tell your GP how awful you are feeling. My neighbour has home visits from a nurse to dress a wound on her foot that will not heal for a long time now. My husband had home visits from the district nursing team to change his catheter while he waited for a prostate operation. We are in Scotland.

I'm sorry you having so many problems with your leg ulcer @ferry23. When I worked in a district nursing team, I used to see patients in a similar situation. Bed rest would be recommended so a patient's legs are as high as their heart, to reduce the fluid. Understandably, most did not want to do this and the issues continued. Only when they were admitted to hospital and they spent time in a hospital bed would their legs start to show a reduction in the leakage, and, healing. Leg ulcers can be present for years as underlying health issues also affect healing rates.

Sorry to hear of your woes. Hope you are keeping your leg elevated and are taking water tablets. It may seem nevervending but these things can heal with time.

I understand what you’re going through more than most. I am currently having daily dressings on my leg and it’s not much fun. On a practical note I use an inco sheet or puppy pads under my leg , particularly when I’m in bed, so that I am not constantly wet. I know it’s miserable but I do think it’s important for your mental wellbeing to try to focus on any positives, even if they’re few and far between. It honestly does help. I know it’s hard, but it does make a difference. Wishing you a speedy recovery 💐

Sorry to hear that you are in this situation, Mamma66, and I wish you, too, a speedy recovery.
How are you today, ferry?

Chocolatelovinggran

Sorry to hear that you are in this situation, Mamma66, and I wish you, too, a speedy recovery.
How are you today, ferry?

After such optimism on Monday I'm afraid things have gone downhill. Since my dressing change yesterday the fluid discharge is ridiculous and the burning pain is just dreadful.

I haven't managed to sleep at all and at sometime during the night I banged my head against my glass conservatory doors because I just didn't know what to do with myself. In the end I was a bit sick.

It was painful when I left the surgery yesterday and putting pressure on my foot makes it worse, so I was seriously worried about driving home - I was grinding the gears and I stalled the engine because I just couldn't press the clutch down enough. Fortunately I chose to come home via the country route thus avoiding dual carriageways and 2 roundabouts.

Sorry I must sound as if I'm constantly complaining which is why I thought I wouldn't post unless someone asked. Which you kindly did.

ferry23 I think you should ring 111, you cannot continue like this.

Please ring them 🙏🏻

This seems truly awful to me. There has to be some alternative for you. Is it possible to see somebody privately if you can afford to? At least you’d get continued care with a specialist. Should you be driving? Could you get to A&E or call an ambulance? Others with better knowledge than me in these situations will surely come up with advice.

Ferry23. This is a totally unacceptable situation. Please seek assistance without delay, either by speaking to the lovely nurse you saw recently, ringing 111, as suggested, or contacting the very kind gran who offered to help. You really cannot carry on like this.

I'm so sorry to read your update.
The whole situation is just terrible and can't go on.

You certainly can't continue like this.
What did the GP say/do yesterday?

Please do ring 111 and tell them the whole sorry story and they will need to react to get some help for.

..... help for you.

I'm due to see the nurse later this morning. I'm going to press her into referring me to the District Nurse Team. That way I can get out of hours and weekend help with the dressings. Plus I don't think driving is an option right now and I can't really afford £100+ for taxis if I have to go every day.

It's the fluid burning back into my skin that's causing the problems. At the dressing change yesterday the nurse remarked that she could see the the wounds actively discharging and she was having trouble keeping the discharge at bay so that she could clean the wounds.

There's no way I could go from Friday to Monday. Everything is wet and heavy and leaking within a few hours. I can't tolerate another weekend like last week. It's difficult to move around or stand for any length of time and I do have to eat and make myself a drink. Sometimes medical staff seem to forget that when they wave you goodbye you have to go home and manage by yourself.

The GP has said he's going to expedite the referral - which is good and bad - it seems likely they'll give me an ultrasound but the thought of the probe being pushed around my leg is making me feel nauseous. I can't bear anything near my leg right now, the dressing change is bad enough.