I know this isn’t the first thread, but the NHS is close to collapse

[Adropintheocean1]

I don’t want to be to outting, but basically I have some symptoms. GP suspected a condition due to these symptoms, and referred me to the hospital.

My hospital (large city) said we don’t test for this condition, please refer to x London hospital. London hospital said we are the only hospital dealing with this diagnosis, we are overwhelmed, we can’t see her. Suspected illness is not life threatening or limiting however does cause horrible chronic symptoms that need to be managed. So that’s it… GP seemed genuinely embarrassed. Basically if I want a diagnosis I need to go privately (can’t afford it.) GP said for a relatively poor area, his making as many private referrals as NHS ones.

Is it not time we got angry about this?

That's what I think as well

It’s not close to collapse. It’s there. It already collapsed about 10 years ago.

There's a thing called right to choose. Your GP should be able to refer you to any service anywhere in England. I'd ask on the group you're on if anyone has had sucess and how long it took them to be seen. Even if its a few days away somewhere for it. A cheap travel lodge and it may be worth it to you. Google right to choose and have info to hand. You'll be surprised at how many GP's arent aware of it.

I know for some conditions i.e autism and ADHD the services with low wait times on right to choose were online. May be for yours if you google.

As for your question. Yes the NHS is in crisis. But it won't get any better. The labour goverment have so far made decisions that threaten the NHS, not ones that strengthens it. But i can't say i'm surprised. The only way to fix it is to make some tough controversial decisions and no one seems happy to do that.

Can they give you at least medication for it or what it is? Do you need supplements, wheelchair, help with physio....can those be put in place anyway and still be on the waiting list?

@Antsinmypantsneedtodance thanks that’s really helpful, I’ll look into it. I agree completely, no one seems comfortable speaking up about it.

It would be highly unlikely there is only one place in the UK who can see you in relation to it. Who did you see at your local hospital? If it wasn't a Neurologist I would insist on re-referral to them as a starting point. Sounds like your GP is guessing re possible diagnosis anyway, a Neurologist would be much better informed re differentials. I'd be very surprised if they wouldn't see you. If it was a Neurologist you saw I'd ask for another review by them to advise you on management now you've had the feedback from the London hosp. As others have said, it would be far easier to advise if you shared the condition and the degree of unreasonableness does depend on what it is really, but of course up to you whether or not to.

Yes.

I’ve been saying this for years and getting piled on for daring to suggest that the US system isn’t the only option. Well, we have sleepwalked into it over 13 years and it’s too late to change course now.

Yeah this is pretty bad, you should be seen but it’s the reality now. If you can afford the private test then I think it would be worth it.

I had to go private last year for a serious health issue and I was surprised by how full the booking list was for appts. And the dr commented about how it was his busiest year at one of the follow ups.

@RudbekiasAreSun Yes the gp has prescribed some medication. But there is no cure for this illness, just management. Which is presumably why they are comfortable
to not diagnose it, just treat it as if they have. But then you never know for sure that’s what it is? I will probably end up costing the NHS more, not knowing and trying to treat this than if I had a diagnosis and could manage it myself tbh!

I have endometriosis.

In 1995 I was suffering from severe painful periods including vomiting and diarrhoea and slowly the pelvic pain became permanent, not just when my period was.

My GP at the time said that it was probably endometriosis but it would need an operation to diagnose it and I wasn't yet in enough pain to be referred. The waiting list once referred was years long.

My grandparents kindly paid for a private operation for me which resulted in a diagnosis and a lot of the diseased tissue being cut away.

It's not new.

It is a lot more widespread that it was.

Surely you just ask to be referred to another hospital? I doubt there’s any CNS conditions that can only be dealt with by a single London trust throughout the entire country….

have you specifically requested the hospital you view as best and won’t go anywhere else?

certain people only want to go to one trust for MS say as they’ve seen the specialist on TV programmes - just wondering is this is the type of thing that’s happened?

It’s broken

the government are not brave enough to move on to a different healthcare service so parts shall be improved for the sake of saving the NHS

we need a cross party committee to work on our future health care but unfortunately it will not happen

To be fair the public could help reducing waiting lists by turning up to their appointments.

I deal with letters EVERY DAY patient xyz did not attend three appointments, we have discharged them etc etc.

The public need to stop making excuses and turn up.

People lie to your face. I didn’t get that reminder…but you got this letter? Oh yes. I put them in the same envelope/same email!

Everyone knows it is OP.
The Tories ran it in to the ground for so many years.
Labour are trying to sort it but it will take years and people are moaning about having to pay more towards improving it.

You're coming across as small minded. Are you a medical professional? There is thousands and thousands of medical conditions that you couldn't possibly "fathom" as they are rare and unless you have direct experience with them, you won't know about them.

Op I also have a rare neurogical issue that affects my nervous system. The test to detect it was only developed in 2017 and at the moment, the only place in the uk that can carry out the tests, is a hospital in London (Oxford) They specialise in new and rare (and the more common) neurological issues, so this might be why you are restricted? My samples had to be sent away to them from Scotland and I waited 10 days for the results.

According to my support groups, the US the only reliable place that carries out the same tests are the mayo clinic. They have people travelling from all over the world to get the results tland treatment they need. Much like myself and others in the UK with Oxford.

I have been very lucky with my area of the uk and the NHS care, as we also have a specialist here that is doing research on my condition. I'm basically like their little 'lab rat' and they get to learn about my condition along side me.

I'm sorry to hear they won't even refer you or add you to the list. Please ask your GP if they could research other areas that might be able to offer you the help and treatment you need. Good luck

@SErunner i haven’t seen a specialist at all, just a GP who has referred me twice and basically been told no twice. This is something the gp suspected by the way, based on my symptoms and his own simple tests - I didn’t even know what this condition was until he mentioned it.

Pootle123 - im a person who did not get the letter or email and missed a scan (my scan was arranged Friday for the Saturday) letter arrives the following Wednesday and I ended up being referred

I do see both sides to this!

We now have private healthcare, DH was always against it but agreed when I asked him that if one of our children became seriously unwell could he trust the NHS to treat them quickly. Lots of our friends have done the same.

Not sure why your GP is referring you to a tertiary centre if you haven't even been seen by your local neurology department. He is not best placed to make judgement on a potential neurological diagnosis - a neurologist is. Ask him for referral to your local Neurology team for an opinion, not to investigate whatever condition he's decided you've got. I'd be amazed if they don't see you.

@advarksnoutstronaut I would travel to any hospital in England if I was offered an appointment with a specialist. Maybe I will
soeak to my GP about that. Can they do that? Are hospital referrals not based on people within a certain radius generally? No idea.

The private system is already struggling - there is often several weeks wait to be seen.

For me it’s that medics are now basically shrug their shoulders when you ask for help. They’re not even embarrassed to be offering something so unfit for purpose.

@SErunner he did refer me to my
local hospital, with the suspected diagnosis and they said we don’t diagnose that here refer to London.

@bellsbuss Not everyone can afford that, and we have children too.

And don’t even start me on NHS inefficiency costing them more. I asked for an appointment to be cancelled and they said it was but then didn’t bother. So I was recorded as a no show.

Gynae appointments where you can’t schedule but if you have your period they can’t go ahead. Brilliant absolutely brilliant just keep cancelling and hope you get one when you one have your period.

I don’t even feel bad about taking up an appointment now - I used to but then I realised so many of the fuck ups were internal it hardly makes any difference.

Id rather give up my shoes than my private healthcare policy.