Can you withdraw yourself from NHS care ??

[Beau30]

Hey,

has anyone ever discharged/withdrawn themselves from an NHS service and gone fully private?

im currently under NHS cardiology and have had one too many awful experiences. I’ve been gaslit and treated like shit on the basis of im a young woman. I just accepted it over the years because I didn’t want to complain or be difficult, but after yet another shitty experience I’m just completely done and do not wish for them to be involved in my care at all anymore

i have a recording device in my chest and frankly no longer wish for my NHS cardiology team to be recording or involved. Do I just call them up and hand back the equipment for the recording device (obviously cannot hand the device back as it’s in my chest, but I would give back the rest of the equipment like the transmitting box for it which usually sits beside my bed

the device itself is fine to stay in my chest, it just becomes useless if the NHS team are no longer monitoring it. But I was planning on requesting all my medical records and seeking any further care privately

not sure why I’m nervous about it but for some reason I’ve got myself worried! Is it as simple as just calling my consultants secretary and telling them to withdraw me?! Has anyone else done this before?!

thanks so much in advance x

Is there a private service that provides the monitoring service that you've been provided by the NHS? It may be worth checking the provision in private sector, and the cost of that, before terminating your treatment with the NHS

I think so. If the private doctor felt it was necessary then I would get it again and happily pay for it but I’m not sure they will. I’ve had multiple things caught on it already so not sure if they have enough information as it is, I guess I’ll just need to show them and see what they say. But if I did need the same monitoring device it’s available privately anyway thankfully! x

I would seek advice from a private provider, who medically and legally qualified to advise you. Maybe phone some?
Really sorry this has happened-just reading that article about a doctor struck off for messing up a stomach operation at a nearby hospital. It's terrible people are dismissed when they complain-this was a young man, so I don't know if it was anything to do with his age as with you. Do make sure you follow up on what happened-it might stop them hurting another person next time,

It’s probably unlikely that you will get an exact replacement for your NHS care from the private sector. Any treatment you do get will be extremely expensive. Surely if your device has picked up “multiple” events this indicates that it’s important that you continue to have it. What is the issue with your NHS care?

I'd pause and seek support to switch consultants within the NHS. Removing a device is an extreme move. Do you have a lot of money? If so it is less risky, but if not proceed with caution.

Have you pursued any complaints?

In this instance I’m not sure you can, have you formally complained? Is there another NHS cardiologist you could ask to be referred to.

Have you thought about raising your issues with PALS to see how they can be resolved? Fully understand your frustration though.
https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

Rather than such a complete cut off from the NHS could you ask to move your treatment to another hospital.

You could say it's easier for you to get to or nearer your work.
Generally it's not a good idea to criticise a doctor to another doctor. Ime.
That's what I'd try first.
All the best.

Honestly it’s been a shit show from start to finish, I don’t want this to become really long and boring to read so I’ll try and summarise it!

i was basically having life threatening fast arythmias which i was told was just panic attacks and I was referred to a psychiatrist by cardiology because they didn’t believe me and said I was clearly extremely anxious. Once they actually took me seriously they were like oh shitttt

I’ve had on and off issues for years. At first it was too fast so they ablated that. Now it’s too slow. It comes in episodes where it will suddenly drop down to the 30s and stay there for hours/days. I feel so sick, exhausted and just generally crap with it. Sometimes it’s sinus bradycardia, but I’ve also had 2.2 and even 3rd degree block where I had to stay on medication for days until it resolved. These slow episodes make me feel awful but I’ve just been told I’m being dramatic, young people can cope with low heart rates and that my episodes don’t last for long so i need to put it out my head. Meanwhile im vomitting and feel like utter shit with it

had an episode recently where I felt dreadful, went to a&e, my heart was sitting around 32, they called cardiology who said to let it settle itself, so I was left in a room with literally nobody. I couldn’t get up because I felt like I couldn’t walk, I’m not exaggerating when I say a nurse popped in maybe once every 3 hours. In fairness, they were busy with other stuff so I get it, but it was awful and they were brutal. I was crying because I felt unwell and the nurse slammed tissues down and told me to pull myself together. The rare time someone did come in I was literally begging for help because the nausea was overwhelming- they would say that they’ll check if the doctor has written me up for anything, then just not come back. I asked for a call bell or something and again they said they’d bring one but nothing. My phone had died so I just tried to sleep it off. Then a nurse came in and told me the machine was set to automatically beep if it went below 30 and at this point it had gone to 29 (briefly but enough to set off an alarm) so she said when that happens I was to press a button on the bottom left to silence it or else they’d have to keep coming in. I asked for help and said I felt really unwell and asked to speak to a doctor, she said the doctor has said I’m fine and there’s nothing wrong. Then she said my issue is I keep looking at the machine. I then said, but wouldn’t that make it faster and the issue is it’s slower? And that I’ve had heart issues for years and I KNOW looking at the machine isn’t causing this. She just moved the machine back and walked away saying I was being difficult. That went on ALL night, and in the morning I was told by the first doctor I saw that cardiology were aware of me and they had discussed me and he basically said I needed to consider a pacemaker. Then an hour later the consultant (not my normal) came round and told me I’m just very aware of my heart rate and that’s why i feel unwell when it goes low. I asked why am I having these episodes and he said sometimes it happens in young women and that my symptoms are just from anxiety. At that point I just gave up and said to myself I’m never putting myself through NHS a&e or cardiology ever again. A&e unavoidable because no private emergency care but im fed up of being treated like a hysterical young woman (ive had those exact words on my notes before) when i know for a fact something isn’t right. And I totally get doctors have different opinions but it’s so frustrating when initially you’re told ABC, then the next person has no clue about this and says XYZ. Then the next person has no clue about it other of that and says KLMNOP.

sorry that ended up so long! Basically a series of shitshows and frankly I’ve lost trust in them altogether

Thanks so much. Ah you’re totally right about not criticising and I honestly wouldn’t. In fairness part of it is the fact it’s easier to get appointments for private care and the nhs has such a long wait to be seen for stuff, so it’s also about convenience for appointments and treatment x

Yeah I did, I’ve complained before and got an apology about the psychiatrist situation but I’ve just never fully trusted them after that and every bad situation has chipped away at that trust even more and I’m just fed up now x

Can you afford the cost of private care because insurance won’t generally cover pre-existing or chronic conditions? You can certainly blend private and NHS care.

Ahh that’s what I was worried about, that I can’t withdraw from their care or have them take me off their books altogether.

nah there isn’t one that deals with this branch of cardiology in my area, and even if there was I’ve just completely lost faith in it altogether x

Yeah I can afford it. It’s not so comfortable that I’d be in a rush to spend the money but at the same time I need this issue sorted so I’d make it work xx

I’d ask for all the results and take them for a private second opinion before withdrawing from your nhs care.
we mainly use private care but it’s not always the best for complex or long term conditions.

Many nhs doctors also jabs a private practice and so it won’t be anyone different. Plus private hospitals don’t always have the equipment that nhs ones have - plus it would be mega expensive. With a pre existing health issue you’re not going to get private healthcare. If things have gone wrong then raise a complaint…

So as far as I know the device can stay in (I was advised when I got it that they would only remove it if I wanted it out, otherwise it can just stay in and it will only work for a set time and only if it’s all set up with the equipment beside my bed. I don’t care if it stays in me deactivated because nobody can see it anyway xx

Yeah I was going to make sure it’s a different cardiologist, even if that means going further out of area.

yeah it’s going to be expensive but at the same time I cannot have this going on any longer, it’s awful

raised a complaint and literally nothing changed! I’ve just lost faith in it altogether now tbh x

It sounds like the problem is more the nurses than the doctors.

I would move hospital. Near me I live in the middle of 3. Honestly I have been in life threatening situations and declined ambulances because if I get an ambulance from my home address it will take me to the shitshow one.

Find the good hospital. There will be one.

Ah thanks so much. If I was happy with the private care and did want to just withdraw altogether from NHS, I’m guessing I just call them and say that? And they will probably tell me not to etc but if I understand the risks etc then I’m guessing they’ll withdraw me if that’s what I want? Just so unsure because I’ve never heard of anyone doing it before xx

It’s both unfortunately. The consultants just say it’s anxiety, it was them who missed it back at the start and told me I was clearly a stressed young woman (I wasn’t) and made me go to a different psychiatrist instead of just listening to me

honestly I’m just exhausted being robbed off. And if I go to a different hospital the cardiologist there just says they’ll send a letter back to my cardiologist at my hospital and request another appointment for them to see me. That takes ages, then when I’m seen I’m just fobbed off again. And repeat

I’ve just had it to here with the entire system and I’ve lost faith in them altogether and I honestly don’t think anything can recover it now! Just been one failure after another x

What would happen if you needed A and E for any reason though?

Honestly not any less than what happens now 🤷🏼‍♀️

I’m guessing if it was heart related and they actually believed me, they would discuss with on call cardiology for any immediate advice just like normal, but for any letters back or requests or ongoing stuff etc that would go to the private cardiologist for if further treatment is needed.

but I guess I’m hoping there’s something the private doctor will be able to do to help so i feel better and don’t have to go to a&e with it ever again😅 (touch wood!)

Yes, of course you can refuse NHS care if that is your choice, though I would expect them to make sure you understand any potential negative consequences. But, honestly, I'd try asking for a second opinion first. You have a right to a second opinion. I do note that any private cardiologist in the UK who is even remotely up to date will also be working in the NHS. So I would suggest that the most important thing is to see a different cardiologist from the one you have encountered so far, rather than necessarily going private. I am sorry that you have had a bad experience. I certainly can't get my head round the suggestion that anxiety was giving you a low heart rate!

It's very easy to withdraw. You just tell them you want to discharge yourself from their care.

But as a prolific user of private healthcare myself, I'd recommend getting yourself established with a private consultant first. That way if they need any additional information from your NHS treatment to date it will be easier to get. It may also be that you end up needing something that can't be done privately in the UK, then you have a NHS consultant in place that your private consultant can loop in to. E.g. if they identified that you needed highly socialised heart surgery or whatever your private consultant would write to the NHS consultant to recommend that.

If you're anywhere near London I'd highly recommend Professor MacCarthy. He's such a lovely consultant and I've never felt dismissed by him as a young woman with weird symptoms. In my experience it is worth travelling to private consultants in London as they tend to have access to much more comprehensive facilities so it tends to be smoother.