Trouble with illness and the district nurse

[BlatantlyOutingPost]

I suffer with trigeminal neuralgia and my meds stopped working, and i've been having my worst attack ever since. Not only was it my worst attack pain wise, but it affected my vision and i've been dizzy constantly.

I have other ishoos and have to have frequent bloodwork done. If i dont get my bloods done, my repeat prescription cannot be issued (it has been refused before when i had bloods done late), and my phlebotomist has told me before that should i be too ill to go in, they can send the district nurse out. Having had to cancel two appts with her due to the attack (at this time i made an appt with my gp, which i had to wait til yesterday for) my husband asked for the district nurse to come out. This was a week ago yesterday. By this time i have already had to cancel a physio appt too.

He is told the nurse will be out monday, and will call before she comes. Monday there is no sign, i am still ill. Tuesday, no sign, i am still ill. Another physio is cancelled, two in a row meaning they want to discharge me, so dh has to convince them not to. Wednesday, no sign, i am still ill. Thursday i am still ill. But it is my dd's first nativity, the school is 2 mins walk away, so i wrap up and go in my wheelchair. While we are out (for 45 mins) guess who comes!!

Dh calls her, apologises and says where we were. As my doctors appt was tomorrow anyway, we suggest that we ask for bloods while i am there and she agrees that this sounds like an easier idea as she is now out of our area.

Drs appt yesterday, i tell her how ill i have been, she changes my meds and says that she heard all about me being out when the nurse called. I didnt make much of this at the time. She says i need to see the phleb to get my bloods done next week as the nurse doesnt like people being out when she calls - as they are supposed to be too ill to go anywhere - and gives me my repeat prescription. This is only the second time i have crossed my threshold in a few weeks (wish i kept track of dates!) and was BECAUSE of the thing that has kept me housebound.

Today i get a letter. Saying that the district nurse will not see me again and i have to get all bloods done in the drs surgery in future. As they have to see terminally ill patients who are housebound and do not have time to waste on people who are well enough to GO SHOPPING

I'm livid. Was i in the wrong or have i massively interpreted something (i have asd, if that ends up neing relevant)?

To the OP and people who 'see where [she's] coming from' - patients on a home visit list are for people who can't get out of the house, ever, at all, not even on their very best days. I can fully appreciate that Monday, Tuesday and Wednesday, you were completely housebound by your illness. Thursday you clearly were not, and attending your child's nativity play really is no different to shopping (e.g. shopping for food? Picking up essential prescriptions? I'm sure many would see those things as even more of an excuse to becoming un-housebound than going to a school play, even if it doesn't have the 'life event' clause). If the home visit list had a section for people who were sometimes housebound and sometimes not, it would be 50 times longer, 1000 times more unmanageable and a million times more abused.

YA still BU, sorry.

Maybe it's also post code dependant?
You have to be half dead here to get any sort of home visit.

CPTart we used to get patients phoning for a home visit for their flu jab - "but not on Wednesday because that's when I go to bingo and not Thursday because that's my shopping day and Friday I'll be in for the morning but then my daughter's taking me out for lunch so I won't be home after that"

....and those that were cagey about insisting on knowing what time you might visit.
Why should it matter if you ain't going anywhere

As a hcp who does home visits we are so strict re home visits for obvious reasons. If the patient can get out in a car they have to come in. The doms are only for those who are completely bed bound and i f you seethe people i see you understand why we so strict. There are so many in great need who can not get out full stop. Sorry but yabu in this case as you can get out.

Forget to add we never say what time we coming as never know how long the previous patient will take. Ive had to calll ambulances before and wait for them before leaving my patient which of course takes time. Something i do not minddoing. Once I even had to climb through a downstairs window to get to someone and then again had to wait with my patient until someone came. If you housebound you in anyway no matter what time i come.

CPtart - it does matter, or it does to me. I've recently had to make use of the DN service, in fact every day between mid August - mid October, then following another op in Nov, was generally every other day until about a week and a half ago, when the chronic fatigue I was left with following surgery finally lifted and I managed to drive the short distance to the Dr's surgery, so I cancelled the DN visits.

I wanted to know roughly what time as I was struggling to get in the shower, and would take me quite some time. I wouldn't want to be in the shower when they came, just as an example. Or when I was having to have a sleep (or two) during the day, it would again be useful to have a rough idea of when they were coming so I could try and plan not to be asleep.

I totally understand its hard to give an estimate of time, and most of the time they didn't! I would just leave the front door unlocked, and they would come in, as even getting downstairs was quite tricky for me for quite a while.

I do consider myself lucky reading some of the stuff on here. I had no difficulty getting the DN to come out following my surgeries, and they've provided a fantastic service for me changing dressings every day, and stoma bags for a while. I took them in a tub of chocolates and a card last week to say thank you. Its still not that easy for me to get out as it makes me very tired, but as I can, I cancelled them as I'm sure the service is very pushed. It makes me sad that other people don't get this kind of service though. Although my GP's surgery is great as a whole, and again, I read some real horror stories on here of people not being able to get appointments for weeks.

I'm with you, OP. If the DN said she was coming on Monday, she should have come on a Monday. She should have at the very least texted you to say she wasn't coming.

It's all very well them going on about you being well enough to go out on the Thursday, but the truth is even people who are very ill indeed (yes, even those who are terminally ill) can sometimes rally enough for very short periods if it's a special occasion, as it was in your case. So they can fuck right off in my opinion.

You sound in genuine need fluffy.
More than once I had a patient on my list for the day, and would drive past them trotting the grandchildren to school!

OP, out of interest, if you are so debilitated by your horrible illness why are you going to a GP surgery that is a 20 minute drive away? You mention a local surgery and ask if you could attend there for bloods...why not just go there full stop?

Another thought is that can you find a phlebotomy service which offers a drop in facility? Our local hospital does this and accepts GP requests. If you could find such a service you could go on a day when you do feel able to get out of the house.

I don't see the point of writing to the nurses correcting their reason for not seeing you. Shopping vs school play, they will be a bit .

I'm sure you didnt mean that quite as condescending as it comes across, matilda.

As you asked though - I have a rare condition that my gp is particularly understanding of. Plus there is no female gp at the local surgery and it is a lot harder to see a doctor at all. And on top of this, i deal a lot better with a familiar person when i do need to see a gp.

I think YABU, although I can see why you might be a bit peeved about the fact the DN's told your DH they would be out on the Monday but did not come. I think it's the only thing you have a valid complaint about. In your shoes, I would have called to ask what was happening and remind them I needed the appointment- although I get that people might feel they shouldn't have to remind the DN's that they are to visit, it just makes sense to call to find out why they didn't come.

The DN service is vastly over-stretched, wasted/unwarranted visits are a waste of resources they can ill-afford. The DN service and GP home visits are often abused for patient convenience (or the patients family's convenience) rather than for those who really cannot get out of the house. In an ideal world, the DN's and GP's would have enough time and resource to do more visits for people who can get out but for whom it is very hard, as opposed to very strictly for those who absolutely cannot get out. Unfortunately, we don't live in an ideal world and often the resources simply don't stretch far enough as it is.

I suspect your phlebotomist was trying to be thoughtful without realising the reality of the service the DN's can realistically provide. When the DN came out to find you were able to get out, it makes you ineligible for their services. They will have fed this back to the GP.

Although I can see you have reasons for going to the GP you are with, that choice means that you have to travel further. Unfortunately, this means that getting to the surgery may be more difficult for you than if you went to the surgery closer to your home- but this is a choice you have made and that means you have to work round it.

You can't go to another GP's to use their services when you want to. You are not their patient, they don't get paid for providing a service to you and they don't have any of your details. Our blood work (both hospital and GP) is requested and reported via an on-line system, charges are tracked by the same system. It may seem like a small thing (and in the grand scheme of things it is) but if everyone could do this tracking who should pay for what would be a nightmare (and expensive) to administer.

That said, I hope the change in medications help and you feel better soon.

As a HCP I call the DN service and ask for urgent bloods and expect them to be done that day BUT I would only do that with patients I know cannot go out. The service is stretched beyond belief.
My patients are terminally ill, and most of them offer to get to their GP surgery if they can. Some I have to say no stay home I will call the DN for XYZ. You are too unwell to get out of bed.

Also OP you are lucky if your GP will drive 20 mins for a house call - where I live you have to register with your nearest one (but we are in the city).

My DH is a District Nurse. He was very forgiving to a patient he went to visit once to find that he had gone out for the afternoon. That patient was 102 years old.

Unless you are over 100, YABU.

If i had been told the service was available if desperate, but massively overstretched, i would have waited til i could make it in, going without my repeat meds if that is what it came to. As i said, i know better next time, though i dont think it is fair that it comes at the cost of me being refused the DN in the future.

Contrary to what some seem to think, I'm not some entitled bitch who sees it as my right to my own personal nurse on call, and though i assume the intent is meant to be positive i dont really appreciate stories being shared of people trying to arrange their similar appts around their weekly bingo.

I asked about the nearer surgery as i was able to use their HV instead of the one at my surgery after having my DCs.

Seems if your dh was my DN then, i'd be on to something with the ageism query.

Another AIBU who is certain they are not. Any ask?

Another possible issue with you being at a GP further from where you live is that the DNs, although not employed by the GP surgery, usually cover a patch of several GP surgeries.

It's possible that you live in the patch of the next group of DNs. So to come and do your bloods the DN from your GP's patch has come a long way out of her way only to find you not in.

It's nice you have found a sympathetic GP but being out of their usual home visiting patch brings a lot of problems as soon as you start using other community services that are commissioned to provide services to that GP's patients but in their own homes.

Sorry goodnight, i seem to have missed my post where i said IANBU, since i said i would write to apologise? Could you possibly point it out?

Wolper, my house is actually closer to the DN 'base' than to my doctors, though obviously i don't know where that DNs rounds go.

I think your best bet is a grovelling letter saying you are so sorry you were out, you assumed they weren't coming as it had been nearly a week since you'd called. You were feeling better but didn't cancel as you thought they weren't coming. I think if you grovel like this then they miiiight take you off their black list, which is the result you want, right?

You're still coming across as defensive and I totally understand how awful it is to feel misunderstood when you are in so much pain and trying to negotiate a system that doesn't always work as well as we would hope. But I would drop the defensive tone when talking to them about what happened.

I know it's upsetting that they thought you were out shopping. But to the nurses it really is all the same. The district nurses were absolutely amazing when my mum was dying of cancer last year. She didn't leave her bed for six months, except to use the loo. It was terrible. I know you understand this, but I'm just trying to convey that in the breadth of ill health that the district nurses see, "well enough to go shopping" is only a a sliver away from "well enough to take a carefully planned trip for a momentous occasion on a good day".

I asked about the nearer surgery as i was able to use their HV instead of the one at my surgery after having my DCs.

The DN service is not paid for by the GP practice, it is paid for by the health trust. They work out of the GP practice, but not for the GP. This means it can be possible for DN visits to be arranged from another practice.

YABU. If a 20 min drive is too much for you but you aren't properly housebound ( and you are not ) then you need to change gp to a closer practice.
Talk to your GP about it and they may be able to be flexible eg " come around 10amd well fit you in Monday or Tuesday " rather than 8.40 on the dot or else.

If people make an effort to overcome problems and get to me I can be very flexible !

YABU

I'm disabled, housebound unless someone can take me out and our GP is a 20 min drive away, too. I don't have home visits, DH either goes to work late or comes home early to take me to my appts.

The DN has visited me twice in 10 years, once when my catheter was blocked and another to take my staples out.

If you can get there, and you can, then you should.

jacks, thank you, i asked and got my answer, i was just pointing out why i asked

Helen, i did speak to my phleb about it before, the advice was to ask for the DN! My gp is in great demand (a lot of people want only her as the only female there), i dont imagine there is much she can do. But i will ask.

Huddle, yes that is what i want. Im hoping it will be a very long time before it would even occur to me to ask for the DN again, but i want the option to be there if it has to be. (If im defensive its coz i have learnt to be over many aibu threads in my usual name it is easiest to be on the back foot from the start!)

When my my was dying of cancer we had to wait an hour before a DN could come out to administer pain relief! Can you just imagine it!!!! Don't want to??? Nope ... Neither did me and my two brothers!
I sorry but be realistic here!
I'm sorry you have a chronic condition...I understand my DH has MS, but.... The NHS is a wonderful resource and we use it regularly as we have disabled DS too!
Don't take the piss!