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

Ferry am very happy for you that you had a helpful visit tiday, and hope the dressings stay out.
About shoes I wear crocs but cheap copies. . They are wide and easy to put on/ off and might do the trick over the bandages, they have a back strap which we can choose to use or not, whatever ,
Mine were about a fiver and found in many shops/ markets/ supermarkets etc.

The total lack of compassion you've received so far is disgraceful. I sincerely hope that at last someone will take your plight seriously and give you the care you deserve after all these months!

Now is not the time to be changing a GP surgery. The new surgery will ask why you are leaving and if you were truthful, the catalogue of disasters would put them off.

I started the process two days ago because I no longer have a licence and cannot afford a minicab each time. Although this was accepted, I was questioned.

I've just caught up with all this and am so sorry that you're still suffering. As well as keeping a log of what is (or is not) being done, you might consider taking photos ready for when you make a complaint. Evidence is crucial.
Meanwhile, I wonder if your surgery runs a scheme to give lifts to those who can't get to the surgery. That might be a better bet than asking on the local Facebook group where you could get any Tom, Dick or Harriet. I know you shouldn't need to ask because they should be coming to you of course, but that's something to raise later when you're healed and stronger.
Meanwhile, I hope you know you have a mighty army of Gransnetters on your side,don't you. Xxx

Maybe apply right away to swop doctors surgery? Given that the one you've got doesn't seem to have done very well by you to date.......

Would be an interesting exercise, I feel, if you found a way to compare notes with other local people in the same area - especially men (ie to see if they're getting better treatment than women)....

I do have suspicions at times that women are sometimes treated worse than men re medical care - maybe based on thinking that goes "Well - if they've gone through pregnancy, then childbirth, then sleepless nights = maybe this one will have lower expectations than a man would have" ???

How can ya' tell that it takes me two seconds flat to get the message over of - "Never wanted children/never had children" - so they know pretty darn fast that I've just found a way to tell them "I ain't putting up with any illness much....so don't even think of giving me lower priority than a man would expect....". I've read so many cases of women getting worse health treatment than men and wondered why this happens and come to the conclusion that may be at least part of the reason......

Allira yes I do have some slippers with velcro which I bought when they first started the foot to knee bandaging at the surgery. The problem is the one on the foot with the bandage is fine - but the one on the other foot is of course one size too big and 2 fittings too wide. I'm reluctant to use shoe/slipper combination as I won't be balanced and after all this time of not being able to walk very far I'm none too steady on my feet. I was measured for a stick by OT at the end of March - I'm still waiting for it! (The suppliers have a backlog of orders apparently - I would probably be looking for an additional supplier but that's maybe a bit radical). I'm using one of the crutches they gave me when I pulled the tendons in my good leg a few months back.

I'm sure I'll manage to work out something.

I have just phoned the 24 hour community nursing referral line and asked them to pass on my thanks to the lady I spoke to yesterday who accepted the referral (albeit what seemed a bit begrudgingly to me, but I suppose she was doing what she's been asked to do) and to the DN who came this morning. I made a big thing of what a difference it had made and how much better I feel for her visit. I thought that may give some credit for the future!

Excellent news ferry - this does sound like progress 🙂.

Thank goodness. You must feel there's a ray of hope on the horizon. Have a more cheerful sunday afternoon. Great that she will ring you tomorrow to check up.

Rather than cutting the dressing to fit your shoe on I would tell her in the morning that you are physically and mentally unable to travel to the health centre and you need daily nurse visits. If they managed it on a weekend when they have much less staff on duty they can do the same on week days. You’ve struggled on far too long and they really need to step up to the plate.

Yes, that would probably be best.
With luck you could get the same District Nurse.

I’m so glad to read your update ferry23 and hear that the district nurse has visited. She sounds very experienced in wound care and let’s hope has made a step in the right direction. The lack of care and compassion till now is shocking.

You mentioned that she will phone you tomorrow. Now that you’ve made contact with the district nursing team and have hopefully found someone with the compassion, skills and common sense so sadly lacking till now I hope she will keep in touch.

Rather than cutting the dressing to fit your shoe on I would tell her in the morning that you are physically and mentally unable to travel to the health centre and you need daily nurse visits. If they managed it on a weekend when they have much less staff on duty they can do the same on week days. You’ve struggled on far too long and they really need to step up to the plate.

Thank you so much for this update.
I'm so pleased to read this ferry as I wondered if you would get a visit or not.

Good news that the wound is eventually healing.
I think you need to now push your surgery for weekend visits referring to the conversation with this nurse.

I hope this dressing is more comfortable for you and then you can ask for the same one tomorrow.

Thank goodness for that District Nurse.
Your surgery needs a shake-up, they sound quite incompetent.

Do you have any sandals with Velcro? Could you get one on over the bandage? I really don't think trying to cut some away is a good idea. Or perhaps slippers?

Yes, I had a special 'shoe' given to me at the hospital when I had a foot operation with a proper sole but with soft sides and big Velcro straps.
Are you using a walking stick too?

That is reassuring to hear, and I sincerely hope that, with this new dressing, you have a more comfortable day and tomorrow’s visit to the surgery goes satisfactorily. 🙏

A lovely angel - in the form of a District Nurse - has just been.

Whilst she made no outward criticism, quite rightly, of anyone else who has dressed my leg, she said she's been dealing with wounds like this on her rounds for 26 years and diplomatically said she was going to use a slightly different way of dressing and bandaging.

I can't yet say if it's better or worse and to be fair nearly every different person I've seen has had their own views of how it should be dressed. However, she tells me that what she has used if far more absorbent than what was on my leg.

She couldn't understand why I've been left all these months with no dressing change over the weekend - apparently the surgery can refer to the District Nurse team for weekend care - it appears my own surgery doesn't know this as they always told me it's 111 or A&E if I need dressings changed.

I am to go back to surgery weekdays and she suggested that I if I'm happy with today's dressing, I request that they follow the same procedure at the surgery. She was aware that her colleague was referring me to the wound clinic and agreed that this is the most sensible route. I'm not sure how I'm going to get to the surgery as I don't think I'll get a shoe over her bandaging, but as a last resort I can cut what's covering my foot for the 20minutes it takes to get out of the house, get to the surgery park and walk in. Apparently you can get, on prescription, special shoes which go over the bandage so that you can at least move about a bit. And yet they stopped bandaging from my foot and only bandaged from my ankle upwards at the surgery as I couldn't get a shoe on to get there and back - no offer of any special shoes. Plus their way of doing it was sway more cumbersome than what is on there now. It was too thick for me to cut through in order to get a shoe on.

This lovely District Nurse is going to ring me in the morning to see how it's held up today and tonight, and to give me an update on the wound clinic referral.

She also, and most importantly, said it IS healing but being left in soggy nasty dressings sometimes for days on end won't have helped, which is what I've kept on saying but nobody wants to take heed of my view. And considering I'm the only person who has lived with it day and day out for longer than 8 months, knows how it feels, knows how it reacts to different treatments and dressings - I'd say that my view is pretty valid.

Anyway, onward and upward, tomorrow's surgery visit should be interesting.

Luckygirl3

My heart sinks listening to this sorry saga. It is not just the perfectly ludicrous absence of efficiency but the sheer inhumanity of it all that makes me so sad.
My late OH was a GP. He would not have allowed a patient of his to be treated in this way. I was a social worker in medical settings and we would have been on top of this, not just out of professional pride but out of simple humanity.
And anyone we we might have contacted to expedite help would have been concerned and keen to solve the problem.
I feel so sad that this sense of commitment and care seems to have vanished.

I agree absolutely! This is truly shocking and medical negligence.

I could have wept when I read your latest post, ferry23.

You should be having a doppler test to check the arterial blood flow and be referred to a tissue viability nurse who can provide dressings and compression bandaging (providing arterial blood flow is ok). The GP should be chasing up your appointment with vascular! I used to do this for many patients when I worked. The dressings may have changed but the value of compression bandaging I'm sure has not. Good luck.

Personally I would stick to a PALS complaint when you are feeling up to it. I think your 111 call details are passed to the GP so they will be aware that leaving you for a weekend without Saturday and Sunday treatment arranged is wrong.

I hope the DN is with you already or soon.

Timing is crucial re complaining. I would not be surprised if you change GP surgery but the next one may be reticent if you have been mentioned in the local paper etc.

Ferry, I have read through this thread and I am not surprised that you are thinking of lodging a complaint. What a bxxxxx shambles. I expect that you have considered copying your complaint to politicians and, if you are happy for publicity, the press. The front line NHS may well be under pressure but that is no excuse for neglecting you when you are in such pain and discomfort and refusing to treat you out of hours is inexcusable. I hope that today is a better day. 💐

Maybe also Age Concern and similar groups - again probably dependant on what the individual person that is head honcho there takes for an attitude towards this. But you might get lucky and it's someone decent and effective co-ordinating it.....

Ask in an obviously "I'm entitled - as are we all" tone of voice. Don't let them think "Oh - it's just another little woman........#shrug shoulders" at you. You are a "person" and not a "woman" in this context and you're probably old enough to remember Normal Times (ie up to around mid-1980s and before they started imposing all this rationing of resources onto people and expecting to get away with it).

You're entitled to not have your Life mucked-up by all their mucking-around...time for a bit of confidence and righteous anger I feel.

I wonder whether it's time to "Go Big" basically - ie a public appeal in the local newspaper for your area.

The Appeal being to mention what is happening - what you need on the one hand v. what you are actually getting on the other hand and ask for what you need (ie ask for a private nurse to come to your home and do what the NHS is refusing to do).

Also - I imagine your town?/village? has at least one local Facebook group (depending on just how many egos there are around that want to be seen to be "It - in charge of the local FB group"). Hopefully there is just one local Facebook group and no egos involved running it. You could put the same request up there and see what response you get - and, if the local newspaper doesn't print an article/request from you in the first place = they might do so in the second place (ie after being 'nudged' by the presence of your request on local Facebook group).

What have you got to lose by making such a public request? But you might have much to gain......

Sending (((hugs))) Ferry23 I really hope that the district nurse arrives soon x

Your treatment during this time really is disgraceful.

Of course this whole sorry saga is wearing you down.
The NHS is there at time of need but that seems not to be so in this case.

I really do hope the nurse visits today to make you more comfortable.
So many are following this thread and wishing you well so please do keep us updated as to how you are.

So sorry, as I mentioned earlier, I don't live nearby. I have the dexterity and expertise and ferry has the sight as I am partially sighted.

argymargy

Please don’t take this the wrong way, ferry23, but is there any reason you couldn’t be taught to change your own dressings and be provided with the means to do that?

If you read through ferry has severe arthritis in both hands and it’s just not possible.