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has anyone ever discharged/withdrawn themselves from an NHS service and gone fully private?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

Because it’s a pre existing condition it will not be covered by private heath care.

The private drs will also work for the nhs.

i travelled 8 hours to see a private cardiologist who was the uk expert in what’s wrong with me - who then wrote the letter with what needs to happen next medication wise- and gave me a diagnosis. I moved nhs cardiologists from the local hospital who were awful (unless you are an old fat man with blockages they don’t seem to know what to do) and changed to another hospital. The private cardiologist told me where he thought would be best to go. The gp referred me to this hospital. I had to wait 12 months for the appointment but the private dr said I have to be under NHS care too.

I have a long term condition.

just go private. It’s worth it. Treatment for my condition on the nhs basically doesn’t exist.

in terms of withdrawing from the nhs

you can register at a private gp. Most st h recommend you stay registered with a nhs gp as well (dual registration) at least in part because nhs prescriptions are cheaper.

you can go private for most stuff - just research yourself or call the private hospital. Most private specialists will write to your nhs gp and keep them updated.

the only thing you can’t really withdraw from is genuine emergency treatment - eg you are in a car accident and unconscious - the nhs ambulance will take you to a nhs hospital.

I beleive there are private an and e s now but only on London.

Private health insurance only pays out for new conditions for a period of time. You already know it won't pay out for pre existing conditions but any brand new conditions you develop in the future will only be covered for a while. My husband had a mastoidectomy years ago. That requires maintenance because the ear is no longer self cleaning. His insurance company will no longer cover this and he has to pay privately every time. That's not an expensive procedure generally but can cost into the hundreds if he has repeated infections. Heart issues and other conditions you develop because of your heart issues will cost a huge amount as you age.

Btw - many people will post saying health insurance won’t cover pre-existing conditions etc.

this very much depends on how you are getting it.

i had health insurance through my husbands workplace and because it was a group policy they did cover existing conditions. They also covered chronic conditions.

health insurance terms and conditions vary massively.

these days I don’t bother with health insurance I just pay to see the people.

You are much better off trying to work with your NHS team and getting them to hear your frustration than to move private. Most of not all private cardiologist will be NHS consultants for a start.

Then it sounds like you need overall care with nurses etc... also likely that your case is being discussed at MDT.

It's unlikely a private hospital could provide the level of care you need. You can request a second opinion from another NHS hospital. It might mean you need a referral to a specialist NHS hospital.

You need to gather all you questions, concerns, frustration and ask to meet with the NHS team, including the manager, to discuss.

Opposite end of the age scale to you OP, but my mum was told repeatedly by her GP that her heart related symptoms were stress and she should listen to some mindfulness podcasts.

Then she collapsed one day and was blue lighted to hospital where they found a heart defect which was in effect causing her heart to work far less effectively than it should. She was fitted with a pacemaker and defibrillator and lost her driving licence because the defibrillator was kicking in so often it made her unsafe to drive.

Even the operation to fit the device was poor. It took a lot longer than expected and mum was refused additional anaesthetic because apparently it was almost over. She was in considerable pain for well over a hour.

The follow up care hasn’t been great either, mum being left semi naked on a bed whilst numerous staff come and go, most without introducing themselves. The door to the treatment room being left wide open so the entire waiting room can see in. Mum having various tests and things done to make her heart beat faster then slower which weren’t explained to her. The list goes on.

She doesn’t attend any appointments now without me or one of my siblings going with her. We just don’t trust the cardiology department any more.

First step is to find a private Cardiologist you trust and have confidence in and then take it from there. You need to do this first before withdrawing from NHS care really. In an emergency you would still be taken to A& E as emergency care is not available privately in the same way.
As others have advised, be wary of criticising specific doctors as the specialist ones will all know each other!!

If it's undiagnosed it's not a pre-existing condition yet. The OP does not appear to have a clear diagnosis. Plus she's had insurance a while, it's not a new policy. It's worth asking

My insurance covers up to one year after a diagnosis for a chronic condition. Hers might too.

I didn't mean just your heart condition sorry, I meant absolutely anything?

OP stated above she’s not insured by her existing insurance because it was a pre existing condition.

It is worth a conversation with insurer. They normally would check with gp if any related diagnosis or treatment has been received in previous six months or so, if not they may cover it.

Yes, of course, you can stop receiving NHS care and go completely private. The NHS is not a prison. You don’t have to engage.

But the private system is not a duplicate of what’s available on the NHS. You can have private consultant appointments and private tests done. But if you have one of these spells like when you were left in A&E with just a few check ins by a nurse, you still have to go to A&E. There is no private A&E.

The best thing you could do is find a private cardiologist that you like. I’m under NHS hospital care for several life threatening conditions and I really like my consultants and my hospital teams. They’ve been nothing but fantastic. The problem isn’t the NHS, it’s you don’t have someone you trust. So find someone privately or ask for a second opinion within the NHS (you are entitled to this and can also change your care). Make sure you find someone you also works in the NHS and ask if they can refer you back to their team on the NHS.

I will say though, just because someone works privately doesn’t mean they’ll listen or treat you better just because they’re expensive.

It’s undiagnosed but also diagnosed if that makes sense!

it’s a tricky one because it’s not a set overall condition causing it. Eg I don’t have cardiomyopathy which is causing all this. My original diagnosis was the tachyarythmia (avoiding saying which one just to stay slightly anonymous haha) but that was diagnosed and ablated. Now, there isn’t really a specific diagnosis for what I’ve got. It’s just different type of arythmias but they’re all on my medical notes from each time I’ve had it. Eg when I had 3rd degree block that was identified and treated and put on my medical record.

maybe there is an overall underlying condition causing it but so far my diagnosis is just my individual arythmia each time I have one (if that makes sense!)

so if I were to go for treatment for it, it’s technically on my medical record already (unless it’s a new arythmia but Jesus I hope that doesn’t happen! Already had enough so far 😭)

My heart doesn’t always sit at 30, it’s normally fine I just have episodes where it drops that low and that’s when I feel unwell

sometimes I’ve been treated for it- I’ve had various medications to keep it up. Then when the episode resolves it’s just a case of 🤷‍♀️🤷‍♀️🤷‍♀️ when it comes to being worried it happens again. Other times I’m just left to sweat it out.

I was mainly looking at private treatment to see if there’s any medication that can stop this happening or if I’d benefit from a pacemaker. That’s been suggested by DRs before- usually the initial doctor who admits me is flabbergasted I’ve not got one and they say it’ll change my life and stop this happening, then the consultant the next morning tells me I’m just being dramatic and hysterical and that the symptoms are psychosomatic because young people can cope with low heart rates. I appreciate this might be true for athletes but this isn’t from that.

obviously I don’t want a pacemaker if I can avoid it, but I’m going to ask privately if it’s something they feel would help me

Oh, just the same as normal I guess then. If I went to a&e for something that involved a different departments, eg if I had to see neurology, I’d be fine with that. It’s just cardiology I’m done with and want my care privately. I don’t have any poor experience with any other departments so don’t have any issues with them

Oh yeah absolutely! I definitely won’t be criticising anyone xx

That’s awful I’m so so sorry that happened to your mum💐 sounds terrible, I hope she is doing better now.

yep I fully understand not going to appointments alone. I take my husband and it’s night and day vs when I go myself xx

A few thoughts from an NHS nurse:

1. I’m so sorry you were gaslit by the nurses :( your experience sounds really unpleasant
2. You can opt out of NHS care though it might be that your consultants secretary advices you to speak to your consultant first before doing so.
3. it is unlikely your implantable device will be able to be monitored by a private provider (unless it you transfer to a large private provider like Harley street or the Cromwell hospital- but it depends on which brand your device is and what centres can accommodate it). It might be possible for another large/ tertiary cardiology centre in your area to monitor the device- again it depends on the loop recorder brand
4. Your Pacing team will have to stop monitoring your device if you choose for them not too - but be aware that they/cardio team they may not have had enough data yet to help with assessing your symptoms (need a large amount of data from your device to work out the burden of symptoms you experience)- this will depend on how long you have had the device in.
5. Have you already been given a diagnosis? If so then you can check the guidelines as per NICE and see if your treatment has matched national expectations
6. Depending on burden of bradycardia symptoms/experiences over time the cardio team may suggest a pacemaker- this is something that is better on NHS (unless you have £++++ available in your pocket). Pacemakers have their own risks and complications (infection/lead dislodgement/need for battery changes every several years) so there are good reasons cardiology would not rush to put one in a young person.
7. PALS/complaint route should give you a detailed response regarding your experience- it would be an appropriate way to escalate the lack of empathy you experienced

I wish you all the best x

I know that. I was asking @Beau30 what she would do as it was specifically the A&E experience that has pushed her into considering private care.

I didn’t have insurance at the time it happened. Now I’ve got it but it won’t cover it as it’s pre existing

its not there’s only one on the nhs, there’s only one in my area on the NHS. I can’t go out of area on the NHS as that’s only an English thing I was told, and I don’t live in England. I asked to be referred to a different hospital in a different area to get a 2nd opinion and was told no it’s got to be this hospital as it’s the one for my postcode basically. Can’t go out of area on the NHS but privately I could go to London or wherever else

What device have you got in your chest, if not a pacemaker or icde what's it for and how is it monitoed

Thank you so so much.

yeah I really don’t want a pacemaker, it sounds dreadful. If it’s the only thing that stops this happening then I’d consider it but I really want to avoid it where possible. I guess I was hoping there might be a prescription or medication that will help stop this happening because I’m absolutely fed up with it and the thought of having these episodes for the rest of my life is utterly miserable!

I think I’ve just had so many bad experiences that I’ve completely lost trust in the NHS cardiology department now, and even if they did have a massive overall and suddenly become somewhat decent I’ll never fully trust them again. A&e too but obviously can’t do much about that, need to go to a&e for emergencies but as far cardiology I guess I was just hoping I could go private and have a clean slate xx

Can’t remember the full name but it’s a recording device. It picks up heart rate issues and sends it to hospital via a transmitting box beside my bed. Without the box it’s just a dead device in my chest that doesn’t do anything so if I give back the box that would stop the recording and I guess I’d need to do if I was withdrawing from their care

Speaking as someone who has a pacemaker, book yourself a private appointment with an interventional cardiologist .. interventional is the key word here. Ask the consultant’s secretary to access/request all of your medical records from the NHS and sign anything that means they can do that. Then get assessed privately.

If you have even the slightest hint of 3rd degree block, you must have a pacemaker, drugs just can treat that. You are at a high risk of dying every time you go into 3rd degree block.

You can discuss with your private cardiologist the best way to get a pacemaker, if they recommend you go back onto the NHS for the surgery or stay private. Its not that complicated, is a day surgery and it will change / save your life.

share with the private cardiologist the names of the consultants in the NHS who have been messing you around so that if they suggest you go back into the NHS for the surgery, you can be referred to another location. I would consider asking to be referred to one of the Centers of Excellence for electrophysiology in London.