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)?

[AgentProvocateur]

Sorry, but I see where they're coming from. I'm sorry you're so ill - it sounds awful - but they will be thinking if you can make it to the school, you can make it to the surgery. There will be bed-bound patients who need a home call more.

[Whatthefreakinwhatnow]

The thing is though OP, whilst I have every sympathy for your situation and how poorly you feel, I can see this from their point of view too.

If you were well enough to attend a 20/30 mim school performance then you should have been able to attend a 5 min phlebotomy appointment.

I'm not saying that you are not unwell and on pain, I get that and I too have a medical condition that causes me a lot of pain and difficulty leaving the house, but in terms of your ability to attend an appointment, a play is no different to shopping, makes no odds where you went, just that you were able to go out.
Hope you get this sorted soon thpughOP and you are more comfortable for Xmas.

[AgentProvocateur]

Also, I know you weren't shopping, but the principle is the same.

[bonzo77]

I'm an NHS hcp who makes house calls. Our service is obviously in demand and under resourced. It is not to be wasted. If you are able to leave the house in any way (apart from in an ambulance or a hearse) then I won't see you. If I arrive to find you out I will not return unless you have an really good reason and proof, like a hospital appointment. I also never give appointment times (because I'd expect you to be in). I do however always come the day I say I'm coming, avoid impossible times (like if you are expecting another hcp at a fixed time), and call to give you an approximate time in advance (eg am or pm, in one hour etc). All appointments are confirmed ahead of time, and if no one answers when called to confirm I also do not attend. Patients are made aware of this when referred to the service.

[Fizrim]

A district nurse refused to come out and see me after surgery for trigeminal neuralgia because of my age - I think they have a variety of reasons! I can see how it looks to the nursing service because you were out, can you speak to the practice manager perhaps to see if they can help your case?

Have they given you anything for the TN attack, what do you normally take? I hope it eases very soon.

[UpOnDown]

You should have just kept making phleb appointments. If they are only certain hours a week or booked up and the blood test is urgent because of meds, you can ask if you can be booked sooner, e.g. for the nurse to do the blood test at the surgery (because it's urgent).

[ElphabaTheGreen]

Another HCP here. Sorry, OP, but if you can get out to go to a school play, you can get to a phlebotomy appointment. Home visiting services are at complete breaking point because of the number of people they're needing to push out of hospital at the earliest possible opportunity, especially at this time of year.

I hope your pain is relieved soon.

[BlatantlyOutingPost]

I apologise in advance if i am going to sound like one of those OPs who refuse to acknowledge they are BU

But to answer the points here...

• My dh rang on the friday. Had they come on the friday, they would have found me in bed, and this is the same up to the day i went to the play. Had they been a day, or even two, later than arranged i would have still been there. I had no idea at this time that i would be up to going out on the thursday, and when i did go out on the thursday, i had no idea that they were still coming out to see me. Here is where i made a mistake - i assumed the appt for me to see them had never been made, so no need to cancel. Obvously with hindsight i should have called!!
  
• The difference between an appt and the play to me was the journey and time it took. Its a (min) 20 min drive to get to my doctors, then the wait to be seen, then the drive home. That all adds up to longer than we were out for the play, and it was nearly a whole week later. Had i been out for the same reason on monday, this post wouldnt be here, i would 100% BU and not even question it. Or even the tuesday tbh.
  
• i do think just going shopping is different to a one off 'momentous' (so people seem to say) occasion, which I attended still ill and in my wheelchair. Obviously not up there with 'sorry i was in a&e', but still better than shopping. I may be reading too much into it, but 'shopping' reads to me like i should never have had the appt in the first place as i am not worthy. I had only done what the phleb told me to :(

[thelouise]

In the nicest way, I am sorry but you are being unreasonable. The service is barely managing to see the patients who literally could never cross the threshold. I work with older adults and people with disabilities, which means I work in conjunction with the district nurses. It is really hard for them due to winter pressures. That said, I am sorry to hear you're so ill and can appreciate why you are frustrated.

[goodnightdarthvader1]

Sorry, no, you ARE BU. Home visits are for people who cannot leave the house. You left the house. The phleb didn't tell you to go the play.

It sucks that the district nurse didn't show up (we had the same problem when my mum had cancer and needed injections), but it's completely separate to the fact that you left the house for half an hour minimum when you were supposedly too ill to leave the house.

[BlatantlyOutingPost]

One thing i missed!
If i'd been remaking phleb appointments, i still wouldnt have seen her by now (as i still havent). She is only available in the mornings and it takes a long time for me to be up and relatively mobile anyway, which is massively compounded (right word?) with the tn attack

[BlatantlyOutingPost]

The phleb said when i am too ill to make her appts to ask for the district nurse. If i had done that straight away i still would have been doing what she said. Instead i cancelled her appts twice before asking for the DN

[BlatantlyOutingPost]

Ha, it has just occurred to me that had i asked for the DN straight away, i would have still been at the 'stuck in bed' stage when she came out to me.

[TheCarpenter]

I'm sorry things are tough at the moment OP, and I am glad you got to see the play. I'm sure when older your DC will remember how you got there hell or high water to see them.

But if you're able to leave the house and there's someone to support you doing so then you don't get the home visits. I'm not doubting just how rubbish it is to be told 'you're not ill enough' when you feel as poorly as you do though.

[DrGoogleWillSeeYouNow]

Even with your update, YABU, sorry.

[Musicaltheatremum]

Also the district nurses are not employed by the practice but by the health board /authority so the practice can't always sort things with them. We have a phlebotomist and if she is on holiday the GPs have to do any bloods that are needed as our district nurses will only visit if the patients are on their case load. We have a very difficult situation where a patient who goes out shopping with her daughter once a week refuses to bring her to the surgery. We have said we can do it to fit in with this but they refuse. Only had Practice manager have a go at her so maybe one of the GPs needs to tell her.
The trouble is there is so much complex care in the community now and no money has moved out into the community services to employ more staff. A GP going out just to do a routine blood is a complete waste of resources.

[Sidge]

The phleb can say what they like but it doesn't make it correct.

As previous HCPs have said, if you can leave the house you do not need the services of the community nurses who are under staffed and overworked. In my area the majority of their work is palliative care and attending to the truly housebound. I agree it was not acceptable that she should have come Monday and didn't.

I do understand how difficult it is, honestly. And TN is the most awful pain. But YABU and should acknowledge that if you can leave the house, even in a wheelchair, you do not need a home visit.

[thelouise]

You'd be shocked at how many people (mostly older) who cannot get out of their homes at all. They often have no local family members and live in inaccessible properties with stairs at the exit. I've visited a not insignificant number of people who haven't left their home for months on end. They only leave when admitted to hospital and it takes 2 ambulance workers to lift them and a stretcher. As difficult as things are for you, these people need to be a priority.

[BlatantlyOutingPost]

Can any of the hcps here tell me, if getting to my phleb is a problem, can i arrange to visit the drs surgery nearby for my bloods? Or would that be so difficult that it is just easier to wait til im physically up to the journey?

thelouise, im sure you are trying to help but i understand very much how some people cant leave the house, it is only thanks to my dh that i can.

[jorahmormont]

I think I get what you're saying. You tried to make the appointment for Monday, when you really were too poorly to leave the house. She didn't turn up until Thursday, when you were unexpectedly feeling ok to get out for half an hour. Making appointments is fairly pointless as you can't predict when you'll be well enough to leave the house, and had the district nurse come out on the Monday, there would have been no problem. However, because she didn't come until you were able to leave the house, they've decided you don't ever need the district nurse, which is obviously incorrect as you've said, the majority of the time you can't leave your house.

I think you've been criticised unfairly here and they're making a decision based on one good day, whereas clinical decisions should be made on the basis of your best and your worst days, not one or the other.

[VegetablEsoup]

I think yanbu.
what a sad state of affairs if people who need a service can't get it (at home/reasonably close and at a time that suits them and the carer) can't get it.

[Wolpertinger]

I'm afraid the phleb gave you incorrect advice - it's not uncommon in the NHS for one person to make somments about what another service will or won't do without being 100% certain. District nurses are massively overstretched and so are increasingly for people who never leave the house - not for shopping, nativity plays, hairdressers etc. Ditto home visits from a GP.

Whether you can have the bloods done at your GP or not will depend on local funding agreements - in some areas GPs will be funded to do phlebotomy and in other areas not. Also the GP may only do bloods for tests they want, not tests requested by a hospital consultant. So ultimately you would have to phone your GP surgery and ask as the answer is going to be different depending on where you live.

[VegetablEsoup]

and gp's who won't/can't take bloods. outrageous!

[BlatantlyOutingPost]

Thank you jorah, yes its the "you may never ask for us again" that has thrown me in particular. I do understand it is hard from the other side though, and why the DN would feel i am taking the piss.

But when this is your life - all of it, not the very end - there are times when you push through as much as you can. Clearly its a black or white issue though, in which case i shouldnt have been told it was the right thing to do.

Ah well, lesson learnt. Thanks for the responses everyone

[BlatantlyOutingPost]

So, now i am possibly going to get rounded on... But i have to ask or it will pick at my brain...

I have an elderly relative who has dementia. She is physically able to leave the house, yet has dressings changed on a wound by the DN. She has a carer and could get to the drs some days, if not all days.
I'm just wondering why the DN would say i was shopping when she was told something else, and ageism about my disability is something i encounter far too often. Do you think that may have been at play here? Not for a formal complaint or anything, just for my own piece of mind?
(I know mentioning an -ism on aibu rarely goes well, so will put on my metaphorical hard hat!!)