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has anyone ever discharged/withdrawn themselves from an NHS service and gone fully private?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

Private can be very good for taking the time to talk you through the options and the pros and cons of each.

Are you sure?

If you need a pacemaker it's going to cost you the best part of £20k and an ablation the same. I speak from experience.

Your big problem is services where you live. Your situation could be hugely improved by finding a private cardiologist who you trust and having them liaise with the NHS over your care. That's what we do with my husband.

We paid for the operations (out of what was supposed to be our retirement fund) because the waiting lists were too long, not because the NHS didn't agree they were needed.

I don’t want to put you off pacemakers! They can do a very good job when appropriately used and well placed! Like all treatments it a risk vs benefits decision

this.

dont withdraw from care. just get better tests and assessments elsewhere. keep the nhs too. even a basic antibiotic costs over £100. i know youre not on about that, im just saying meds are dear.

if the private consultant you pay for writes to the nhs to tell them something you need done or whatever, if they do not do this then you could in theory get them for negligence or something. at least you’d have a professional saying there is a physical problem that needs treated and it’s not only anxiety.

id also consider moving house to an area where healthcare is better. how they could leave someone alone with a heat rate of 30 is beyond me.

id also go to some kind of mental health therapy if youve not currently got that. then they cant say it’s anxiety as you'll have nailed that issue. although the nhs nurses you saw are enough to give you anxiety.

You are understandably fed up ... indeed angry .... because of all this. I get it. I have similar heart problems and have found it hard to get consistent advice with opinions differing which does not instil confidence. And treatment in a & e always below par.
But I think it is important that you do thorough research before deciding what to do. There will be a way forward but it needs measured consideration.
I have gone on to have treatments which I know will have cost £10s of thousands so you need to be aware that a private consultation may lead on to the need for expensive procedures and have a plan in place for this eventuality.
I had pacemaker fitted for sick sinus and it effectively prevents my heart rate from dipping below 70 bpm. I also have permanent atrial fibrillation (fast and irregular) for which I eventually had an av node ablation which effectively has left me totally dependent on the pacemaker. I also have a stent and leaky valves ... so a full house!
I would suggest that you phone the British Heart Foundation helpline. They are always helpful and at one point put me in touch with a site where you can search for cardiologists in all areas who work both NHS and privately.
Also I have found that cardiologists vary in their patience ... PALS organised for me never to see one who had shouted at me and upset a whole ward and I now see a wonderful one ... but he is much in demand!
My best advice to you is to research cardiologists within a geographical radius that you are prepared to travel. Look at feedback from patients. Go for a private appointment ... ask for a double slot which will probably cost about £500. Use the NHS app to accumulate letters from the cardiologists so you can send these in advance by email. Tell the carfiologist calmly that you feel at a loss to know how to take things forward and that you feel unwell and need a proper treatment plan.
As to anxiety ..... finding you have heart problems is a psychological jolt and takes some adjustment and needs a cardiologist who does not dismiss this aspect. All cardiac patients are having to deal with their physical symptoms and the anxiety this triggers. It is normal. But anxiety does not cause the sort of low heart rates you are describing ... if anything it sets them racing!
You need to do some research and take this one step at a time.
Good luck. If you want to ask anything please do ... I have been dealing with this for a long time.

By all means find a private cardiologist, but I wouldn’t cut off NHS care entirely. You cannot predict if/when you might need it.

I would use private medical care as a supplementary service, in coordination with the NHS, rather than relying on it exclusively.

By the way a pacemaker is not "dreadful" in any way. It is a simple piece of day case surgery and absolutely routine. There are a few restrictions on what you can do for a couple of weeks, but I simply forget that I have mine. It does not impinge on my daily life at all.

I agree, it's a very quick qnd simple procedure, are you on lifelong anti coagulation for it. Whatever the recording device op has it doesn't make sense to record heart rate which is transmitted to hospital if there's no action taken, op I think you need to find out what device this is and possibly wear a medi alert bracelet. If you go private it may be the same cardiologist anyway and you need the nhs as you have been to a&e. There's no such thing as fully private in the UK.

I don't think you need to officially withdraw. Just go see a pricate cardiologist and if NHS makes you an appointment just cancel it. Like others said, get all tour records and go to a private cardio. I personally pick and choose when I use NHS and when I use private. I have had a surgery in public health care and then the other treatments for the same condition in private.

As there are no private A&Es, what will you do in an emergency like the one you described?

Op would just go to the NHS A&E or private urgent care. You can't really opt out from the NHS. You can withdraw treatment but you can't opt out from paying towards the NHS and they can't refuse to treat you.

Have they offered you a pacemaker?

Medication isn’t the answer here because you sound like you have long periods of time in a sinus rhythm, or at least a rhythm that is compatible with you feeling well.

In my (limited) cardiology experience, a pacemaker sounds reasonable. It cannot be anymore dreadful than what you’re experiencing now.

This was going to be my thought - no emergency care in private medicine and it could become incredibly complicated if they have no records for you, so I would think carefully on that one. Sorry you're in this position though!

Yes
you can opt out of treatment
and go where you like
look up mental capacity act
if you are of sound mind - which you clearly are, you can’t be made to engage in NHS services

lol

there is very little record sharing in the nhs generally and while my local a and e does have records of me they are in no sense of the word complete.

when I’m travelling they have very little access to any info.

Private is obviously faster (for non-life threatening treatment) with nicer facilities. The doctors are usually the same though, they just do a day or two of NHS work every week, so you may end up with the same ones.

It is absolutely possible, in theory, to have all your care provided privately. Though not all private providers can cover all conditions, so you will need to find a provider who can meet your needs. If you can, you just ask to be removed from the NHS list. Phone and cancel your appointment and tell whoever you speak to that you wish to be discharged from this service and not to make any more appointments. You could contact the secretary to ask how to return any equipment.

You should, however, be aware that the costs can mount very quickly if you need investigations or procedures. If you can meet those, it’s not an issue- but best be aware of what kind of costs you are looking at.

I say this because some patients think they can dip in and out- e.g. see the consultant for opinion but get investigations suggested on the NHS. The reality is that this is less and less the case. GP’s and other NHS clinicians are being told that investigations suggested by private healthcare providers cannot be completed by the NHS- if the private clinician wants it done, the patient pays for it to be done privately (even if it means travelling out of the area). Or goes onto a nhs waiting list for assessment. Similarly with medication- sometimes GP’s can prescribe but not if off-formulary or off-license, or not unless there is ongoing monitoring by the private physician (via a shared care agreement, which GP’s are not obliged to enter into with private providers).

I had a patient who did not realise this, thought they could use a hybrid, and got in a bit of a pickle as they could not afford the true cost of private care- paying for the outpatient appointments were fine but costs of investigations were mounting up. Then the private specialist wanted an investigation that was not provided by any local private provider and tried to get it done locally via NHS, which would have meant waiting on an assessment by nhs clinician, or going out of area and paying for it. What I am saying is that you need to get a good idea of what kind of costs you are looking at before making any decisions. You also need to look carefully into whether your chosen provider can fully meet your needs- and if not, are you prepared to travel to get additional care? Also, you may find your local specialist is the same as your local NHS one, especially if it is a sub-specialty area. Though less so I’m bigger cities like London and Birmingham, for instance.

And to clarify- A&E won’t contact your private cardiologist for an opinion in an emergency - they’ll speak to cardiology on-call at their own hospital. They will write your discharge letter to your GP, not your private consultant. You will need to facilitate information sharing between them. There is also some mutterings about GP’s charging for private referrals and correspondence with private clinicians- technically they already can do so, but most don’t in practice. But as the number of patients going private increases, that may well change.

private healthcare can work well, if you can afford it’s true cost. Best of luck with whatever you decide.

Yes, I'm more than aware of the communication issues and "silo mentality" in the NHS (been there, got the t-shirt!). However, my main point was that there will be no emergency care in private medicine (something that people like to forget when extollimg the virtues of private health insurance) and it will be much harder to get treatment in A&E, I imagine, if you have opted out of the NHS.

These are the guys to ring .......

British Heart Foundation helpline
Call 0808 802 1234 (freephone).
Our Helpline is open weekdays 9am to 5pm, excluding bank holidays.

They will listen, above all else, and will point you in the right direction.

At this point OP I think you need a friendly knowledgeable person to listen to your unhappy saga and help you to find the best way forward for you. They are very used to listening to patients who have had difficult experiences. They are objective and can stand back and help you plan what to do next.

I am so sorry, your treatment has been appalling.
Yes you can refuse NHS care. My mum had suspected cancer and she refused any further investigations or treatment.

This is so awful 💐

I am terribly sorry for your mum. This is about believing women and affording women basic dignity.

I am young with heart issues.

I can relate to a lot of this.

I'd really recommend asking for a referral and getting under a decent cardiologist
I researched mine and thry are both my private and nhs cardiologist iyswim.
So I am officially under their care via NHS but generally see they via private healthcare route.

A&E can be awful with chronic conditions. They are busy, but often don't read notes or talk to each other and basic care is often overlooked.
But private care may not be much better, will cost a lot, and thats even if your insurance will cover you properly. And of course if anything goes wrong, they'll dump you back into the NHS as most private hospitals don't have A&E, CCU or ICUs.
Im another one suggesting to get a referral to a specialist center even if you have to travel.

This doesn’t surprise me with cardiology unfortunately.

I’ve had palpitations that make me feel lightheaded and pre-syncope for years. I’ve seen private and nhs cardiologists from age 31 onwards (I’m 55 now).

Finally I had an episode of unexplained loss of consciousness w no warning last year and ended up in A&E, had to fight for a 7-day ECG, during which thankfully I did experience an arrhythmia, and a v detailed Echo but am now waiting for follow-up w an arrhythmia cardiologist. it’s all taking ages though.

i just don’t want you to think private will be better, just quicker. The first cardiologist I saw was private and he was so patronising, said i must’ve been stressed as a new mum but I have had these issues for as long as I could remember. He did a basic echo and 24-hour lead but that was it and said bye.

Of course you can withdraw. You don’t have to attend an NHS appointment ever again. I doubt anybody will chase you too much.

I have been a hospital consultant for almost 30 years. OP I would put in a complaint about the service you have received. It’s not good enough. The clinical care and the rudeness. I have zero tolerance for colleagues who do not treat patients and relatives with dignity and respect. Nope.

The only thing is, it can be helpful to have your records on your local hospital system. If you did have a crisis or emergency, then it is much easier to access the NHS notes. The private system requires the private doctor writing promptly to your GP and your GP uploading the letters. Having said that, as long as you have the private letters and investigations readily accessible to you, then that is also useful.

I would definitely pay for a one-off cardiology appointment at least. You can then go back to a different NHS consultant armed with that summary and plan.

Good luck. It does not sound good enough.