Can you withdraw yourself from NHS care ??

As per advice, I would look to see if there is a specialist hospital or clinic further away that might be suitable (NHS). I would then arrange a one-off private consultation with the lead consultant from that clinic and see how you get on. If that works out, ask your GP to refer you into that hospital via choose and book. If there is a waiting list, you've got the option of staying private until the NHS referral comes through. I've had to do this with ophthalmology clinics twice over the years. The consultants have always been happy to see me privately until they can accept me into their NHS clinic, and because of choose and book it doesn't have to be the nearest hospital.

Sorry to hear of your issues but 100% can relate, its frustrating and upsetting to say the least.

Maybe ask for recommendations for a good private cardiologist in your area and go from there.

I know lots of people who mix private and nhs as its frankly expensive especially with pre existing issues.

I've told my kids to get private insurance soon as they start work. The NHS is getting worse and discrimination of being young is very real. I was 24 when I had multiple organ failure, I was told it was a stomach bug even though my liver function was in its thousands.

Husband drove me to a different hospital in another area and thankfully I'm still here 10 years later.

Could you try going elsewhere? I drive a few hours to a specialist hospital now but the care and understanding is great. Getting the diagnosis is the hardest part but once you are referred to a specialist consultant, they are brilliant.

Sorry- that was longer then I intended!

What would you do next time you felt you needed urgent care though (i.e. that you would have gone to A&E for)?

Go see a private cardiologist or cardio physiologist. If you’re happy you can then just decline any appointments from the nhs that come through.

Do you think it’s POTS that you have? My friend was treated dreadfully by her GP etc, told she was anxious etc etc. and it turns out it’s POTS.

No advice just sympathy and understanding. I had a heart attack at 35, after reporting high blood pressure, fast heart rate, tight chest and repeated chest infections for over a year beforehand. I was continually fobbed off as anxious by GPs. I was eventually referred to long Covid clinic and for asthma tests, but had the heart attack before either appointment happened.

Even when I was having a heart attack, the paramedics didn’t know, ECG a bit ‘weird’ but I didn’t have any pain, didn’t collapse, just couldn’t stop vomiting and was verging on hypothermia despite feeling like I was boiling alive. Thankfully they took me to hospital anyway. The cardiologist didn’t think there was anything serious going on but did a angiogram “to be safe” and then had an “oh shit” moment too during it when they found a 90% blockage. Blood tests revealed it was intact a ‘full’ heart attack, thankfully function is fine now, just on a shit ton of medication for life.

Now, when I tell any medical professional I had a heart attack 3 years ago they are completely gobsmacked. I genuinely think most just don’t consider that, other than those born with them, younger women can have heart conditions and are just hysterical. It’s so depressing! Hope you can find the care you deserve

I am so sorry you are going through this, I had years of being disregarded until I had a heart attack and then they took me seriously , ablation, feel much better x

How you've been treated based on what you've shared is awful.

It sounds to me like the treatment isn't successful, so you maybe need additional meds or, if all you have is a monitoring device, a pacemaker.

I would go private for a diagnosis and health plan. You can just do this, you don't need to tell anyone. If the private provider finds issues they can resolve them or send you back to your GP with a letter/diagnosis etc.

I would change NHS Trust too.

Best of luck.

Google estimates that private pacemaker surgery would be between 12000 and 20000 pounds. Is that something you could afford if needed?

As someone who spent years being fobbed off as anxious when I had a heart issue you have my sympathy but I'm not sure that going private is the answer. For me learning to be straight talking and advocate for myself was what helped. I learnt to not care if a Dr thought I was just a hysterical woman but to keep pushing anyway.

I’m not sure that the private sector would manage your repeated crises so you would still be reliant on NHS care, eg A&E as you say. They may be able to provide more investigations and another opinion.

They surely wouldn’t have done an ablation if it was just anxiety! Although I could understand why you might be anxious now and it could well be a factor in some of your episodes.

I assume the implanted device is a loop recorder. If it’s already been in for long time and they’ve not found any pathological rhythm what are you expecting to happen?

You can still go to A&E. There is no private emergency care.

OP, I know you say you can afford it, but if you need help long term it’s going to get very, very expensive and potentially unaffordable.

I have private insurance for both me and my child and I absolutely would not want to be without it.

My dh has heart issues but he's many years older than you. He's had 2 ops, and 3 visits to a&e, one was via 999 and that one time was a life saving procedure.
We went private this Saturday, heart beat all over the place. He had contacted his NHS consultant, but no interest. His heart beat varying from high to low.
DH is ok, the private consultant was excellent, he had time for us, he was thorough and clear.
We feel reassured and listened to, also now have someone to call if he worries again.

You need to find that safe space, given this thread you obviously can afford it, find a private consultant that you feel comfortable with. They can arrange monitoring or any other need you have, but will very much be thorough. Also be aware that a private consultant can put you on a NHS waiting list. It's all very flexible.

Don't opt out of the NHS totally, love it or hate it they will be there for you in an emergency. Xxx

Wishing you best of health OP. Xx

With apologies to other MNs who can't afford private health. I hate the two tier system, and I vote consistently for the party that I think will best provide free health care for all. But when it comes to your loved ones health I'm afraid principles can disappear .

I was told my palpitations, chest pain, and high CRP was anxiety, menopause, stress, costochondritis. Forty eight hours later I was in resus with fast AF and needed an ablation. Still having regular palputations four years later, on BB, but as it’s not AF no one’s bothered.

It’s very unlikely there will be more than one Cardiology unit in an area. Services are concentrated in one hospital to ensure depth of expertise.

Where abouts are you? If you’re in commutable distance even by train you can ask to be transferred to specialist cardiac hospitals, London for instance or Papworth in Cambridge. A lot of patients travel miles and you have right to choose on the NHS so you can ask for your care to be transferred.

You could start with a private consultation, ime they cost from around £120 plus any tests. Most hospitals offer payment plans for self funded treatment. Not all offer emergency care though.

You're jumping to the conclusion that all future treatment needs to be private and never NHS.

Go privately and see a specialist, Have some tests and scans to get a diagnosis. It sounds like you don't yet have one so your insurer might cover initially until diagnosis.

Once you have a clear diagnosis and treatment plan the NHS can pick this up for you and your GP can issue prescriptions etc

I'm not sure why you haven't used your insurance previously if this has been ongoing for years to get to the bottom of it

As you say A&E is there for everyone when things go wrong urgently but for everything else you can chose private.

I'm unsure how you expect theres a specialist consultant privately though if there is only one via the NHS. Most work both IME.

Good luck.

This is a really difficult situation. You can definitely refuse NHS care, you simply decline any further appointments, don’t accept phone call and don’t attend A&E. Nothing will happen. It’s not compulsory. You have capacity therefore can make your own decisions.

Is your plan for when you’re in crisis not to seek medical advice?

When you have been in A&E have the symptoms resolved without any medical intervention/medication or have you been discharged still symptomatic?

Does your HR ever go above 30bpm?

My DH recently went private for a medical issue that wasn’t life threatening but life debilitating. He was fortunate enough to be able to access private medical care, his bill was £16k within 3 months. How long is it sustainable for? FWIW every Dr/consultant he saw worked in the NHS, although he could choose who he wanted to lead his care.

It might be worth booking and paying for an initial consultation to check your priorities align with what the private sector can offer you.