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

HelterSkelter1

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.

Although she had not told us, my mother had been feeling increasingly frail and went into hospital with a suspected stroke late at night after she had gone to bed, and after midnight they decided to discharge her by ambulance to an empty house. She asked them to call me and I got them to keep her until I arrived (I lived a two hour drive away).
The next day I took her to see her GP who saw she had deteriorated significantly since her previous visit the month before, and had her admitted to hospital. She died there three weeks later.
I wonder how many other people sit neglected at home alone because of this uncaring NHS? My mother was like so many of her generation, she would never complain no matter how ill she felt.

Hmmm....and certainly food for thought re MR X having been accepted as housebound though HE had managed to get himself to the barbers.

I would struggle with how to put what I would be about to say to those judging you not to be housebound as to why HE had been accepted that way. Could it possibly be because he is a man? and you arent.....

I would certainly be wondering if men were getting treated better than women in this respect after hearing that little tale........as it does still seem to happen a lot (look at how men get sterilised just by asking - a very different medical need...but it is a medical need) but women don't. I don't see a difference there - treatment required is treatment required.....but it's well-known women have a lot more problems than men in getting that dealt with still......

Still wishing you luck in getting this sorted.....and you've shown a LOT more patience with them than some of us (including me) would have and I'd have long since started dropping firmer and firmer comments of "I do have a life to lead - and without all this pain and hassle............"

Thank you for the update, ferry. It seems that, at last, some notice is being taken of your situation.
Keep us updated, please.

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.

Good morning I have just read this thread through and I am appalled at what I read.
One thing occurred to me is that you may be entitled to Attendance Allowance.
Certainly at the day rate.
This would give you money towards taxis.
Unfortunately it would not be instant but if it is awarded it is back paid to the date of applying and would replenish any savings you have paid out.
Get in touch with Age UK who will help with the application form which really does need experience to fill in.I really sympathise with the pain and frustration you are experiencing.

I am away with DD and GC, every morning before they are awake I check your thread ferry I wish you well 😘

Where are you living Ferry? I seem to have missed it but think I maybe read somewhere South East?

I'm sure some of us would help if reasonably close.

I would.

Just to say Good Morning Ferry and to hope that today is a better day. It does sound as if you are being taken notice of - at last!

Love from one of your Leg Watchers! x

Just to say Ferry23 that I have been following your 'posts' each morning to see how you have been getting on and I am so pleased for you that there has definitely been some progress and to wish you the very best .
I really feel for you in what must be very uncomfortable to say the least.
Please let us know how you go on in the next few weeks.

or even if we all lived CLOSER to each other

blue14

Thanks for the update ferry.
It all seems quite a mess.
However I'm pleased you were able to speak to the GP yesterday.

So sorry you're in such pain right now - let's hope that the morphine kicks in and helps.
I hope you're aware how many on this post are thinking of you and wishing you well.

Pain has eased off a bit now .

I shall be eternally grateful for all the support on here. Many people have sent me private messages with offers of help, with good advice and general support. I am truly touched.

When I first posted I never expected to receive so many kindly replies. I've taken on board some of the suggestions that are appropriate for me.

You are all a lovely lot of people and if we all lived closed to each other I would throw a big party and give each and everyone of you a heartfelt hug (As well as copious amounts of expensive champagne and Masterchef canapes ).

Thanks for the update ferry.
It all seems quite a mess.
However I'm pleased you were able to speak to the GP yesterday.

So sorry you're in such pain right now - let's hope that the morphine kicks in and helps.
I hope you're aware how many on this post are thinking of you and wishing you well.

Good morning leg watchers

GP phoned me yesterday evening. Spoke to her in some length but of course it's difficult to squash 8 months into a telephone conversation and I think face to face allows for a more open conversation.

She wants to see the effect of the this new course of antibiotics and get the report from the vascular nurse who I'll see on Friday. She's agreed to refer me to the District Nurse team but I don't hold out much hope for that - we'll see.

The liquid morphine hasn't quite been the magic potion I hoped it would be but it has made some difference. I did have a few virtually pain free hours last night which meant I was able to get a bit more sleep. It wasn't a continuous sleep and probably didn't amount to much, but better than the last few nights. I did still have a couple of hours of pretty awful pain and it's painful now. The good thing is you can take a dose ever 4 hours, the not so good being you can only take 4 doses in 24 hours, so you have to work out a balance so that you're not going 8 hours without it. From what I've read it has a cumulative effect so maybe it will be more effective tonight. Unfortunately I've already had 3 since yesterday evening so I've got to be really careful when I take the next one.

I've monitored the pain levels and frequency over the past week or so and it seems to start getting painful about 6 - 7 hours after the dressing change and reaches a really intense level about 3 - 4 hours later and stays that was for a good 15 - 20 hours. It's usually ok by the time I have the next dressing change and then we start the circle all over again.

I wouldn't dream of driving if I felt impaired in any way. I spoke to the GP about this and she said many people get very few if any side effects from this doseage of liquid morphine but of course one has to self-assess. But I don't try and pull the wool over my own eyes and I wouldn't go neat the car if I had any doubts whatsoever. A taxi is expensive - and they seem to be more so when you live a bit rurally - but I'm hardly living a life of extravagant spending right now so I would have no hesitation in using a taxi.

The District Nurse who came on Sunday phoned me on Monday afternoon to see how her bandaging held up and how I was, which was nice of her. One thing she did say is that even though the original person I spoke to from the DN team had put in a referral to the Wound Clinic, she thinks they only take genuinely housebound patients - it seems you really have to never go out here to get care in the community. Ironically, I was reading an article in a magazine in the surgery yesterday about our local wound clinic. In it, the nurse they interviewed said that Mr. XXXX originally came to the clinic as his barber had noticed a strange smell when he was in there last and he realised it was coming from his infected leg wound. So I'm going to pick up a copy today and bring it home with me so that if we start down the housebound argument again I can ask how it is Mr. XXXX was able to get to the barbers if referrals to the clinic have to be housebound.

I'm having to pick my battles at the moment as I want to fight the ones that will get me better the quickest now and move on to the general ones about quality of care etc, later on. But it's rather sad that you have to have any battles at all with the NHS. In my case they seem to go out of their was to find reasons NOT to treat me. I'm sure it can't be just me.

www.gov.uk/drug-driving-law
This is worth looking at with regard to morphine and driving.
However, you might not want to drive or feel confident to do so when taking morphine.
Of course driving is not recommended when in pain.
I sincerely hope your treatment continues in hospital ferry.

Ferry you really should not be driving with all that strong pain killing medication you are taking.
I do sympathise with the problems you are facing with having to get the latest medication from the pharmacy, but couldn’t you have taken a taxi to the surgery and then got the driver to take you on to the pharmacy?

I know taxis can be expensive but this is an emergency and if you really don’t have anyone you could ask, you really have no alternative.

There have been some suggestions that you should be in hospital.
How do you feel about that if it was offered?

Sorry that should read "albeit not close at hand." Blooming predictive text.

I hadn't realised you have children, al either not close at hand. How do you feel about involving them in trying to get you proper, consistent care? For what it's worth, I think you should let them know what's happening ... or rather what is not happening. It may be that they can provide some practical help if they know how things are.
Anyway, I really came here to wish you a good night. Hopefully you can at least get some rest. Xx

I know you said your children live some distance away, but my son and daughter would be absolutely furious with me if I didn’t tell them what was going on. And they would take up the cause even from a distance.
Also am a rather cynical person but I do wonder if the surgery want to keep you away from hospital because of any comeback over the nurse that caused all this and the fact they’ve let it get to this stage.

Your situation sucks, no two ways about it. This may be very annoying advice but in my experience everything that happens there is something to learn, whether it's patience or gratitude or something else

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.

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...

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.

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.

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

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