The NHS don't make this easy..

[DaveT81]

So I had finally managed to get an elusive appointment with the Walton Centre here in Liverpool, which specialises in neurology. Having been investigated for multiple different things over the past 18 months to 2 years, I was basically resigned to being diagnosed with FND and chronic fatigue.

My GP agreed to refer me to neurology. I made an appointment for next week, very quick by today's standards. Only, that dept. have now cancelled my appointment and decided that rheumatology would be more suitable.

I may be wrong, but I've never expressed any part of my current symptoms would require me to be looked at for arthritis, joint issues, etc. there is literally nothing in my medical history that suggests this!

I actually work in the NHS, so I feel like I shouldn't be saying this, but it truly is a bloody shambles at times.

It's like they're required to implement these delaying tactics to stop you getting on to the treatment pathway you should be on, or even getting an actual diagnosis. I am now going to have to be re-referred and spend another 2 months + waiting for an appointment. Absolute shambles. I'm furious.

[M3rry]

I can understand your frustration with the NHS it never seems to be able to make your life easy. Saying that a change in specialty looks odd. The GP has to send you to each consultant separately and even the procedure for a consultant to send you to another in a different department is quicker through the GP - at least that's always the reason I get for going back and forth so often.

As you're on the inside of the NHS (I know they'll treat you just a badly as anyone else, it can be slightly amusing when the NHS staff are on TV in shock when they finally get 'real' treatment) is there anyway to chase down the logic of the decisions? Find out who made it and maybe see if there is a way to argue with your GP that they went out of remit?

[DaveT81 in reply to M3rry]

I'd actually be delighted if they explained to me their reasons for this new referral, but as always it's all done without the knowledge or consent of the patient.

As an NHS employee (who works closely with consultants and nurses) I've used my position to get 'a leg up' a couple of times but I've also found the frustration of unnecessary waiting times for appointments, and poor treatment from Drs to be a terrible reflection on the institution that the UK has so much to be thankful for.

I was supposed to be referred to a neurologist and chron fatigue teams last month, on my follow up general med appointment, a different Dr decided that a 5-day tape of my heart (I also had an ablation for afib) would be a last check. They said 'we'll see you in 4 months'. I've been struggling now, in various ways, for almost 2 years. I'm just lucky my new GP is receptive to my suggestions.

[grahamhg]

What is wrong with the NHS? They've been pissing me around and fobbing me off for 20 years now, and just as my health starts rapidly deteriorating they ramp up this nonsense. I've encountered nothing but lies, obfuscation, refusal to investigate and treat. Is it money? What exactly?

I'm of the opinion now that the NHS needs to be abolished. This situation is a joke.

[DaveT81 in reply to grahamhg]

I can understand your anger and frustration. I ended up going private for about 6 months, such was my lack of getting any where with my old NHS GP. I had to borrow most of the money from my retired, widower mum. It wasn't a situation I wanted to be in.

I love the NHS, it's done a lot for the UK but it's being run into the ground and it's only the patients who are suffering. I've been in your position myself for the best part of 2 years. Despite all of my many symptoms my old GP spent 18 months telling me it was 'just' anxiety. He said the same thing before I ended up in A+E prior to my afib diagnosis too.

[M3rry in reply to DaveT81]

The NHS can be great but it needs a radical change of focus. My brother is a pilot and their attitude of 'no blame' means 'tell us what happened so we can prevent it' actually works. (Well except when Boeing decide that they know better than pilots on their 737max).

I've had a bad GP - I went in worried about some symptoms he decided I was depressed and gave me diazepam - this was 1998 I shouldn't have had that drug then. A few months later I was admitted into hospital for liver failure - turned out I was depressed due to lack of sleep, I wasn't sleeping because something was wrong - the 'Wrong' was my immune system thinking my liver was evil and had to die. Strangely enough autoimmune hepatitis doesn't respond to diazepam. I and all my friends stopped using that GP.

The only big stick we as patients have to force the NHS to treat us 'properly' is to demand we get treated according to NICE guidelines - guess what FND doesn't have a NICE guideline, this puts us in a very messy position. We cannot demand a quality of treatment, we cannot even expect to get the same treatment as the next patient. We are in the worst diagnosis for 'postcode healthcare' as we cannot even hope for something that helps, which is why we're all here hoping for a thread of possibility to make a difference.

[0101 in reply to M3rry]

It does. It's just how without destroying it bed by bed, person by person as seems to have been happening. You're not alone in this and I'm not sure if mass civil disobedience, or voting, or writing letters, or witholding labour is part of an answer!

They/we are/have been trying to do this for a while. A very long while. We have sat various departments, teams and people around the same tables, from the NHS, PHE, trusts, authorities on and on and with a 'health' focus or duty with those from other 'safety critical industries' like air and particular engineering fields like oil or nice fast race cars that have these systems. Different government departments work or vie with each other for funding or who knows. Then there are agreements and promises and announcements. And standards and laws and...then?

NICE guidelines and pathways do not work. I have helped in trying to ensure some of this - and know from the inside. It's not just FND it's many pathways for many things!

Yet as a patient I'm invisible and still waiting. Please keep your hope alive. A lot of this is luck.

[grahamhg in reply to 0101]

In my case I have neurological damage caused by minocycline. I was actually lied to by the toxicologist last week that minocycline cannot cause this, despite my symptoms all being side effects of this drug. My concern is that the drug is still in my nervous system after 20 years, as its highly fat soluable and is slowly killing my neurons, yet they refuse to properly investigate.

[DaveT81 in reply to 0101]

That's sort of the route I'm keen to go. I want an OVERALL diagnosis, but I then plan to look at each set of symptoms individually and see what can be done about them via separate specialists.

[Batty1]

That's absolutely awful that NHS can cancel your appointment. Govt needs to get out of the healthcare business.

[Redbeard_33]

Hi Dave, yeah that is odd 🤔. Get back to that doctor or maybe, a wee change of doctor might do your case some justice. Ask for all medical records too, see how they came to an odd conclusion like that.

Lee

[DaveT81 in reply to Redbeard_33]

Yeah, I was initially referred to general medicine. They cancelled my appointment too. But I work at the hospital where I was due to have the appointment, so I found out who the secretary was and hassled her until she reinstated it.

This time, I'm away from work so I can't go that same route. Shocking though, that they can do it without notifying you or explaining themselves. Bloody rheumatology?! Maybe I've got arthritis that I hadn't know about!

[0101 in reply to DaveT81]

Hi. If you have a local Healthwatch it's worth trying to speak to them. They have a role to highlight where things like this are happening. We need the data collected so the picture across the UK is clear and can't be hidden. I've had random cancellations, reschedulings, waits when it turns out I'm not on any list, been 'lost' but not informed, so have to then wait another 18 months, referrals to the wrong doctor (Mr Cohen not Ms Cohen), hey boom you're back at the back of the list it'll be another 2 years. Referrals rejected because the GP wrote them 'incorrectly' then on tracking this reason down I have been unable to find out what the 'correct' referral form is. Turned out it was the same one, but the two year delay had voided it, so the same one was viewed as 'acceptable'. It's truly madness.

Local Rheum cancelled my long awaited appt this year to wait for an RNOH appt that came and went three months back...and referred me repeatedly for hydrotherapy that doesn't exist, at a pool that is shut apparently unbeknownst to any local referring staff, and I was discharged from without anyone's knowledge...to which my GP asked me 'what should I do now? It makes no sense. Why are we referring and told to refer into a service that doesn't exist?'. How can she not be depressed as she admits she can do 'nothing' in this current system.

Try not to doubt yourself and to keep as sane as you can through all this. It would try the patience of a...

[bobbybobb]

They don't do anything for FND at Walton, their hopeless. They give you the diagnosis then discharge you with no follow up or help.

[DaveT81 in reply to bobbybobb]

I know, I think I really just need a diagnosis right now. Believe me, I've been through them before, 18 months ago. I was told I was having migraines, despite never expressing anything even remotely like migraines.

Was just hoping they'd see the extensive things I'd had done and realise that FND is the fairly obvious answer here. My own GP (new one) seems really keen so he could at least suggest individual specialists to help with the varying problems afterwards.

[0101 in reply to DaveT81]

While you wait for whatever it is they do...how are you managing and managing your symptoms? Is there a way to do what you might be referred to if it had a name/pathway? Any treatment or exercise or care programme that you can put together through other services - perhaps through the GP or community or council or charity services? Don't mean to annoy, I hate seeing others stuck in the waiting purgatory. I had meningitis and encephalitis and each new person decided it was organic/non organic/functional/neuro/psychiatric and when I asked for my records to be looked at and specifically my lumbar puncture results and anti-viral treatment it was met with blank responses. Good luck. If it helps - try to have faith in your own judgement . Good doctors and services admit when they're wrong or where they don't know, or don't have the answers.

[DaveT81 in reply to 0101]

At the moment, I'm off work (again). I've been doing all I can. I've changed my diet to accomodate the gastro issues I was having, I'm getting exercise, but not over-exerting myself and I'm trying to get myself started on some form of medication for the minor stress and anxiety that my symptoms are causing me.

The whole plan with my GP was to get a diagnosis and then he said we would look at what we could do about the individual symptoms then.

I'm also trying to rest as much as possible. Due to my re-referral to a different clinic I've had to book another appointment today. Only problem is, there are no appointments for 3 months. I've decided to seek out private help again and hope my NHS doctor will work with them. Most of the Drs at the local Spire hospital are NHS registered anyway, and many work at the hospital I actually work at myself. I'm at a point now where I need some results soon. This has been dragging on for almost 2 years and it's ruining my life.

[bobbybobb in reply to DaveT81]

Good luck with it all.

[0101 in reply to bobbybobb]

I'm sorry to hear bobbybobb , but it's useful to know this. It's happeing with stroke, neurological and other things too. Rehab is really patchy or community treatment options. I wish I had known I would fall off a bit of a cliff, even after waiting and fighting to get my results and diagnoses.

[DaveT81]

Hi, I very much appreciate you taking the time out to reply.

When I got told about this re-referral, I was very angry and frustrated. Even more so this morning when my - previously really good - GP just went along with it. But you've given me a bit of hope, at least, that some good may come of it.

The only problem now is that it appears that there won't be any appointments available for about 3 months!

In the meantime, I'm due to have a 7-day tape fitted in a couple of weeks, to make sure that some of my symptoms aren't being caused by my afib. I'm pretty sure they aren't but it can't do any harm. After that, I'm being referred to the chronic fatigue 'team'/dept.

Maybe they or the rheumatologist cant shed some light on this and point me in a positive direction.

[Jillymo]

Me too ! I was referred to heamatology waited months to be seen - instead all I received was a phone call from the consultant after two cancellations telling me I have got to go back to my Gp to be referred on to a neurologist. This means going through the channels of the choose and book garbage. What a sad sick joke the NHS has become. Grrrr

We are all like a load of headless chickens going round and round in circles achieving nothing for out efforts of chasing our over due appointments.