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

ferry23 it seems that your practice nurse isn't really taking any notice of the way your leg is reacting to the dressings she is using.

Can you make a note of the dressings so you can prevent her from using ones you already know won't suit you?

Hopefully vascular will get you on the right track at last.

It might be more painful because it's healing? The nerve tissues are regenerating??
So pleased it looks better.
How's your general health ?
Taking some vit c might help.

I can understand you not wanting to go down the hospital route if you feel it’s not the solution for you.

I’m a bit confused after your post yesterday about whether or not you could refer yourself to a local wound clinic.

I don’t claim to know anything about them but I know they exist so wouldn’t it be worth trying to make an appointment and then get there by whatever means is available ?

Who knows, if you went and were in their system, a home visit may be possible if someone took pity on you.

They are bound to be experts there, aren’t they as they are seeing wounds day in and day out.

Some positive news today.
So difficult, though, for you to be in so much pain.
Interesting to see what the vascular nurse will say tomorrow.

Can you contact the very nice district nurse who came out to you last weekend? It will be good if you can arrange someone to help you this coming weekend although I realise that, according to them, you’re not housebound!

Just back from dressings change. The nurse I saw I haven't seen since last Thursday. When she took everything off and looked at my leg she gasped. My heart sunk.

But no, she said she was astonished. One wound is dry and healing well, the other (nastier) one is half the size, drying up and there is no granulation. I too was astonished! Half the size - but double the pain. She can't work out why the pain level is so high.

She said I must emphasise the pain when I see the vascular nurse tomorrow as it's a lot of pain for what appears to be an improving wound.

I'm now preparing to do battle with the District Nurse team who I'm sure will refuse me as I'm not housebound enough. I shall then be asking them which member of their team I should direct the invoice for taxi fares of £100+ for one week as I can't afford to pay that any more. Plus I tripped up the step to my front door today.

There is a spray which was given to my dh after prostate surgery which stops dressings from sticking. I am sure the nurses will know what it is called and can bring along.

Sorry just realised that the district nurse isn't visiting today but that you are waiting for a decision about home visits. Hopefully they will do the right thing and agree to those.

I understand your reluctance about hospital admission. Hope I didn't upset you by mentioning it again. You have to do what's best for you. Hopefully the nurse's visit today and the vascular appointment tomorrow will at least start you on the path to being fully healed. X

Why can’t they use a dressing and then bandage the leg instead of anything that sticks?
You will def have to ask for something different.

Nanato3

I take 6ml of Oramorph and still don't get much pain relief.

I was given Oramorph in hospital, it worked but then the itching was unbearable and they gave me just paracetamol which did nothing much to relieve the pain.

I'm not a nurse but there are dressings that you can put on a wound that don't stick, such as Aquacell Extra, which I have used when DH has a wound as his skin is very fragile now.

I take 6ml of Oramorph and still don't get much pain relief.

I'm not going down the hospital route. I'm hoping there will be some decision on the District Nurses coming to me today as the one I had over the weekend was clearly very experienced and was confident she could deal with it. I have my vascular appointment tomorrow, hospital transport is booked and I just n eed to get today out of the way.

I'm taking 1.5 - 2.0 ml morphine sulphate - but it has no effect on the pulling of my skin from the dressing.

I sympathise with you regarding being recognised as housebound. I have several different conditions causing me to be housebound, I can't even get to the surgery for a blood test ! I've been in severe constant pain for the last 3 years plus other conditions that make it impossible for me to leave home. After 3 years of trying to get the surgery to recognise my situation, at last I've been accepted as being housebound .
I've had a home visit for a blood test and a home visit GP appointment. It's so frustrating to have to deal with all of this and being genuinely ill and getting no treatment.

I take liquid morphine, what dose do you take Ferry ?
I don't drive but I certainly couldn't after I've had a dose of my Oramorph, makes me very sleepy though it only just takes the edge off of the pain.

I'm not a nurse, so I can't advise on the sticky legs thing, but I really think you need to shout LOUDLY now about this whole situation.

I was wondering how you feel about phoning 111 and asking for an ambulance??? Sounds a bit drastic and I know others have mentioned it, but you really need 24 hour care - in hospital. This is no longer something which should be dealt with at home, and especially alone.

Hope today is a better day. xx

If there's any nurses -current or ex - around this morning I wonder if I could ask for some advice? -

The dressings on my leg are sticking to my skin, presumably because of the fluid discharge as I have no adhesives on my skin. Yesterday it was very painful when she tried to get them off to apply new dressings and I can feel they're stuck again now - in fact I knew after a few hours of getting home yesterday that they were sticking.

Not only is it incredibly painful to have this pulling at my very vulnerable and not yet healed skin all the time, but this was part of how this sorry tale started. Pulling an adhesive dressing off of the original cut which ripped my skin off. The original cut is at last healing but the cuts caused by the rip are the ones giving the problems and where it's now ulerated and now here we are having to pull the dressings off.

Is this an inevitable outcome of having such leaky legs or is there something else that could be used to stop them sticking? I just want to be prepared when I go for my dressing change later because I'm just in a constant spiral of dressings on - they stick to legs - they have to be taken off and then we start the circle all over again.

It is shouty angry time, ferry. You can do it but it shouldn't have come to this. Here's to a better outcome. 💐

I've tried to play the good guy from the beginning but enough now. I've done the bursting into tears, the 'I can't go on like this any longer' whilst wiping my furrowed brow, the wobbly voice and gulping on the phone. Now it's shouty angry time.

Charleygirl5

ferry it sounds as though the GPs are waking up to your existence and lack of care over so many months.

It sounds like many GNs, if they lived locally, would help if they could. Please make use of the kind offers.

I made my original statement over a week ago that you should be hospitalised. I stand by it, and you would receive proper pain relief.

I would pack a bag, go to A&E, burst into tears and stay there, saying it is too painful and you need the wound dressed more than daily.

The treatment beggars belief.

It really does, and in my view ferry you shouldn’t be stoic at all but do like Charleygirl says and cry in front of nurses/ GP and medics generally.
I won’t go into details but some time ago one of my DD’s had real problems and got nowhere until she burst into tears in front of her GP. Then she got results and an immediate referral.
Glad you managed to get some sleep, but a situation like this is scary when you live alone.
Meanwhile call this The Leg Diary and keep us updated.
The other thing to do is now claim that you really are housebound as your leg has become far too painful to go outside.
Them that shout loudest are the ones to get attention!

We're all right there behind you!!
A posse of Gransetters 😀

Yes tomorrow I shall be on to PALS, MP, Uncle Tom Cobley and anyone else I can think of.

This latest pronouncement just beggars belief, ferry23.

Have you contacted PALS? Tell them you are in despair and believe this could be medical negligence.
You could contact your MP or copy them into the message to PALS.

Does anyone care in your neck of the woods? No. It gets worse.

My real name is surely Alice and I've disappeared down the rabbit hole......

"Only District Nurses can refer you to the wound clinic, the surgery doesn't have access to it. You can't be referred to the wound clinic as you have to be housebound."

" I am - I can only get there by patient transport?"

" Oh, if you can use patient transport you're not housebound enough to have the District Nurse team change your dressings daily."

" So really, I can either have the District Nurse or go to the wound clinic?"

"Yes"

"So all the District Nurse's patients, who I would hazard an educated guess are 99% frail elderly don't ever have any hospital or Doctor's appointments because if they did, and they managed to get to them, then they wouldn't be housebound would they?"

"I can't comment on individual cases. And anyway I was only talking about the wound clinic.. You can make yourself an appointment at the wound clinic".

"Right, and could I then have a District Nurse come every day to do my dressings?"

"No"



I think Kent missed the memo about integrated care systems -

Joining up care leads to better outcomes for people. When local partners - the NHS, councils, voluntary sector and others - work tohether, they can create better services based on local need.

Integrated care systems (ICSs) have been set up to make this happen. Their aim is to improve health and care services - with a focus on prevention, better outcomes and reducing health inequalities. (NHS website)

That is so sad cc. I’m sure this is quite common now, and very scary.