Dad and expectations of District Nurse. What do I do?

Paul, I know that you get support from the forum for the difficult situation you are in with your father, but this is getting a bit awkward. Your father complains all the time. He wants other people to solve all his problems for him in exactly the way he wants, without him having to do anything he doesn’t fancy. It would be a great pity if you developed your own habit of complaining all the time. Even worse if it involved wanting other people to solve the problems without you having to front your father and sort him out yourself.

Ours aren't attached to GPs, though the GPs obviously liaise with them and vice versa. They hunt in packs, across the county. First they sliced the teams north to south, then East and West, then linked to the social care teams, City and county, heaven knows where they're at now.

But whichever way they sliced it it was still the same salami with the same ingredients/nurses. One of them turned up one day to give my neighbour (another neighbour, funny lot in that village) an injection for a tropical disease he'd picked up in the Far East and was so furious to find him out that she told me all about it before I could say 'confidentiality.'

Your father's what level is between 3 and 4 what units?

If you want to know what medications are available on the NHS you will find them in the British National Formulary. The fact that there are currently handbags at dawn over medicinal cannabis and childhood epilepsy does not imply that doctors are forced into the fray armed with nothing but aspirin and a trepanning chisel.

No Dad hasnt got heart valve. For some reason I've never understood his level is between 3 and 4. warfarin he takes - not even sure if the nhs use the newer ones - cost more maybe?

Also, not sure if related but he cant use the quick test machine.

CM - carers were organised by on call social people when he was last in hospital. Of course, when hes out and cancels them then they are out of the picture never to be seen again.

DN visit I understand are organised by staff at a GP surgery so my wife tells me. (DNs are allocated to a surgery). Winds the DNs up no end - do gooder at surgery allocates someone elses time (i.e. the DN) when patient doesn't really need it. Because they can.

Of course, people like my Dad think "ooh this is good I don't even have to leave my house now" and then the DN has a battle to get them off the list knowing full well they're NOT housebound.

Interestingly soon after my DH's valve surgery, he WAS going to a lab for blood draws.

At 5.30 AM in the middle of the last NYC transit strike, our phone rang. It was our PCP. He'd just gotten notification from the lab that DH's INR was 15 ( it's supposed to be between 2.0 and 3.0). And that I should get him to an ER immediately. But, said Dr. W, it's probably an error because if it was 15, he'd be dead.

Cheerful news on a December morning. So we run to the ER in last night's clothes. Triage nurse measures DHs bp which is quite high. " You should really look into getting meds for that". He smiled.

INR was 1.5. Maybe that's why insurance company provided the home machine!

I wouldn't say so round here but there is an element of K.I.S.S. thinking behind prescribing practice if not policy. You'll see lots of wistful articles about self-monitoring and pilot research and exciting technologies in the papers, but most GPs wouldn't trust their patients to find their own backsides with both hands, and you can't say they're entirely wrong.

Time was, not so many decades ago, they all had to troop in to outpatients to have their levels checked there. Those clinic mornings were horrendous. My ex won fame/notoriety for taking the patients' chair away so they didn't waste time sitting down.

My mother was on Clopidogrel but heaven knows that has its drawbacks too. At least Warfarin is comparatively easy to tinker with - to stop, in particular.

That's interesting, Shane. I don't recall having to fight with insurance over DH's self test machine at all.

Perhaps Paul's dad has an artificial valve. You can't use the newer blood thinners in conjunction with those.

INR Self test machines are super expensive, BB. The strips are expensive as well. I was a Home care nurse and used to love that machine but we had to share it with 6 RN’s b/o the cost (one machine per team). Then there was a time the strips were on backorder from the machine manufacturer and we had to draw the INR & take it to a lab.

Because of the cost many insurance companies won’t approve a person to obtain a portable INR monitoring device unless it was well documented the person was homebound, that the INR was essential & needed to be done, etc.

Wondering, in the NHS, why they are using warfarin vs the newer Eliquis/Xarelto. My guess is the latter as too expensive for the NHS so warfarin is cheaper and prescribed more, which is actually less cost effective due to having a pro draw blood at a lab.

Is Eliquis & Xarelto widely prescribed in the UK?

As for the OP’s father, the father sounds as if he can get himself to a lab for a blood draw. The father is wasting someone’s very valuable time (the “District Nurse”) as he is NOT homebound.

District Nurses are a bit of an anomaly nowadays, in their range and degree of autonomy. Ours were brilliant, I loved them. My neighbour over the road conned hers into handling her IV antibiotics and hip drain at home, God knows how she wangled that one. But then again, Daughter shadowed one who expected an uninitiated 90 year old man to handle his stroke patient wife's incontinence pads and refused to entertain that this might present any problem for him.

I'm not sure the bulk of the NHS customer base realises that they still exist, and it's probably just as well or we'd all want one. With a proper hat, and a crossover cape, and a bicycle. And that little silver upside-down watch pinned to her apron. Ah happy days...

Paul. If you EVER find yourself explaining the same concept to your father more than five times at the absolute maximum, stop. Repeating the same action and expecting a different outcome is a working definition of madness; only in this case it's not your Dad who's nuts, it's you.

Forgive me, but I don't think you are clear enough on who is involved in doing what exactly across your father's weekly schedule. If he was assessed as needing carers, and he cancelled the service, and the district nurse has him on her list, then *somebody* is organising all this and you need to find out who and liaise with that person. They seem to restructure community services four times weekly so it might be tricky but persist - it's always the same people, only under different team headings. Stalk and capture the named lead individual and stick to her (probably) like glue. And for God's sake stop taking your father's word for anything you need to rely on.

You also need to turn your phone off more.

I must have told him 20 times that he can't demand an appointment time (having inside knowledge of course). I've told him that he really can't insist on a time because hes going out.

Hes phoned me again today to ask me if I've "Told them what they need to do". I had to say no dad they refused. (I haven't phoned), so hes off ranting now. I feel sorry for the next one to visit him!

CM - yes if I said this to him he would say "yes why can't they come at 9am". He did it when he had carers. Wanted them there dead on 830am - to help him get dressed and get his breakfast. Of course, not everyone can have the ideal time - it was more like 945am. He gave this poor lady some stick, wanted me to put in an official complaint because she wasn't coming at 830am like he'd asked her.

Both her and I explained that she had a few people to see, she'd been told what times, and, of course, not everyone could have the time they wanted. In the end, he phoned up one day and cancelled it because he couldn't get his own way. I don't think the department providing the carers complained about that too much.

I know what you mean about him being old etc but honestly the more you do for him, the more help he needs if you know what I mean.

Like I said my wife is a DN. They see it all the time. She once visited a woman who was "housebound". Saw her drive up, carry bags of shopping up the stairs to her flat. Not only could she have driven, but she could walk fine.

The DNs "try" to say they don't have time for patients like this but half the time the patients or their families moan and management back down. Its the "I've paid tax all my life so the NHS can do something for me attitude I think".

Paul, CM's response made me think...could it be that your dad is more fragile than you think he is? I somehow doubt they would agree to send a district nurse for INR testing if THEY thought he was " perfectly capable" of getting to the office.

It sounds (and I'm basing this on your other posts) as though you are having tremendous struggle with accepting the fact that your dad, while annoying, is also getting older and more frail.

And yes, commiserate about how terrible it is!

"You want me to ring the surgery and explain to them that it is essential that the District Nurse, who is coming to your house because you are 'housebound' and unable to go out, arrives promptly at nine so that you can go out?"

If he wants to go out, he can go out via the surgery where the nice practice nurse will be happy to take blood for his warfarin tests.

However. Paul, why do you keep expecting your father, who is old and increasingly frail and fretful, to think and talk in a way that is rational and considerate of others?

Personally I wouldn't even bother. I would just use 101 variations on the theme of tut-tut, dearie me, and join in with his enjoyment of complaining. Or, tell him you can't get through. Or, tell him the surgery doesn't have phone lines, like it's not online and they don't have email. Blame the NHS, that's always good for a juicy five minute grumble at least. Whatever - just AGREE with him instead of trying to tell him he's wrong the whole time.

Consider what is valid about his complaints. Waiting for people and not knowing exactly when they will arrive is annoying, isn't it? Having to have your blood taken is not fun. Having to take Warfarin is not fun, and even less fun is the reason that he has to take Warfarin in the first place.

Your father is not an able bodied, independent person who is free to please himself and enjoy life to the full. He is an elderly man, living alone, with chronic heart disease. He feels like crap. Stop expecting him to be different from what he is actually like.

You say " No dad, I won't do that".

You don't need to explain it to him. He can get his own explanation when he calls.

Don't they have self test machines in the U.K?