Sorry, this is going to be a bit long:
About three years ago, my sister had a cardiac arrest - luckily help was at hand immediately and she came through the other end without any major damage.
She was diagnosed with an arrhythmic condition and had a defibrilator implanted.
As this is usually a hereditary disease, it was suggeted my brother and I get the genetic test she had as well. This was in May 2019.
My brother and sister are in Germany, I am here in the UK.
In July 2019 my brother got the "all clear" both from conventional tests and his genetic screening.
I discussed the issue with my GP and was referred to Genetic counselling. Ther I was told no genetic test would be paid as it is too expensive. Once I had all the other tests that can detect this syndrome and it was found I had it, they might reconsider.
Not ideal, but with limited NHS resources fully understandable.
The genetic counsellor "passed me on" to cardiology at the same hospitel (big London teaching hospital). This was now over two years ago.
I had several ECGs since, blood tests, MRI etc. but not seen or spoken to a cardiologist yet. Almost suspect that some of these will have to be repeated due to when they were taken.
Had an appointment last year, but then the pandemic hit and it was cancelled as it would have been a few days after lockdown started.
In September last year, I had a treadmill ECG and was told that once the results were in, I would be contacted by the consultant, that would take no more than a few weeks. Despite chasing this up several times, I only - finally- got a response from the specialist nurse in July this year.
Recently I bought a smart watch that can record ECGs, my sister has the same watch on the recommendation of her cardiology consultant. Since having the watch, I recorded ECGs when I had palpatations or felt "out of sorts" and sometimes those readings showed signs of arrhythmia.
Sent some of the readings off to the email address I was given as a point of contact for the department, got an automated message back that I would hear back within two weeks, which are now up. Not heard anything back, which, honestly, didn't come as much of a surprise.
Does anyone have ideas how I could get answers or would you think it best to contact PALS?
No one could have foreseen the pandemic and it has hit NHS very hard with many specialists were seconded to other parts of the health service. These delays were expected and understandable.
What I cannot understand though, is why the consultant doesn't see NHS patients when sees patients in his private clinic. It's the same for the final test I would need, the clinic is not run on the NHS at the moment "due to the pandemic" but is done privately.
I would go down that route, had my insurance not said no and these are definitely not costs I can bear.
This is honestly not NHS bashing, even if it might seem as such. However, after over two years, I would like to know what is going on and take the necessary steps sooner rather than later should I have the same disease as my sister. And, quite honestly, I am pulling my hair out.
Thank you for reading that novel and any advice you can give me.