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Chronic pain

My (private nerve root injection did not work) and my NHS referral is "waiting to be typed" does anyone understand the 18 week rule I've just discovered?

34 replies

Mxflamingnoravera · 10/10/2022 19:23

I suffered back spasms and then red hot pain down my right leg mid July. Saw Dr, prescribed codeine and naproxen. It didn't help, lost my job because it happened the week before I started and I tried struggling in working but the pain made it impossible.

I paid for a private MRI which shows a herniated L5S1 disc. Took this to nhs Dr who sent me to Muscular Skeletal interface service. The physio I saw agreed that my pain levels were beyond what physio could do for me and said I'd be referred to private hospitals for treatment.

I made an appointment with a private back surgeon who recommended we try a spinal block injection and had that last Wednesday. For a few hours I was in heaven, but once the local anaesthetic wore off I was back to pain, albeit slightly reduced. Until today, I reached to get my hairdryer and my back went back into spasm and the red hot pain shot back down my leg and into my foot, I can't walk, it's so painful, it's back at 11/10.

I called the "interface" team and they told me that my referral was dictated on 15 Sept and was "still on the list for typing" and that I will "hear in a couple of weeks!"

So today I googled waiting times as my consultant had said surgery if the injection didn't work (private consultant but works in nhs also). There is an 18 week rule apparently which should lead to treatment within 18 weeks, does anyone know if that is from the date I saw the physio and his referral was dictated OR is it from the date the referral actually arrives in the "choice of hospitals" I should be able access?

I have a first appt with the DWP for new style ESA, tomorrow, I cannot work at the moment, I can't even apply because I can't sit at an interview. I live alone so there is no one to help me with bills.

I'm at my wits end with this awful pain, can anyone clarify this 18 week rule, does the clock start on 15th sept when my nhs referral was dictated or when I finally receive it?

I cannot afford private surgery, it was a stretch to afford the MRI and spine block (£2.5k so far). I need to get back on my feet and find work. I'm 60, but my pension pot is not big enough to allow me to retire early, so I need to get back to work.

It's this 18 week rule that I am now focussed on. I need surgery and I need it soon if I'm to hold onto my home and my sanity.

Please, if anyone understands it (I've read it many times and cannot make sense of when the clock starts) could you let me know if I'm already five weeks in or am yet to get onto the clock.

And, has anyone had this surgery abroad and successfully claimed it back from the NHS, there are websites advertising this, but it looks dubious to me.

Sorry for the mega long post, I'm desperate and didn't want to drip feed. No drug combos take the pain away, it's beyond physio and needs surgery at this point.

OP posts:
Cocoaone · 10/10/2022 19:32

It's an 18 week target. It's in the nhs constitution that patients should be treated within 18 weeks of being referred to a consultant led service. It's not quite the same for physio, for example

However, I'm sure you've not failed to notice the NHS is on it's knees. Some services at my Trust have patients waiting two years. A 'good' service has waits less than a year

Chronic pain services have some of the longest waits.

You may be lucky and the service you need is good at your local trust, or they can refer you to another Trust with lower waits. But I wouldn't hold my breath, unfortunately

Cocoaone · 10/10/2022 19:33

Ps - the clock starts on the date the receiving trust gets the referral, or the date you booked an appointment, if it's via the choose and book system

MissLucyEyelesbarrow · 10/10/2022 19:37

Sorry to hear this, OP - your situation sounds totally miserable. I'm afraid @Cocoaone is right though: unless you're very lucky, you are unlikely to be seen within 18 weeks, and the clock hasn't even started yet.

Remona · 10/10/2022 19:40

Unfortunately, as previous posters have stated, the 18 week rule has gone out of the window as a result of Covid. Bearing in mind there are people who’ve been waiting for a couple of years, you need to forget all about when the 18 week clock starts.

Mxflamingnoravera · 10/10/2022 19:42

It's a referral into private. But as you suggest this 5 week wait for the referral doesn't count.

Of course I know the NHS is on its knees, so am I. I have no income, no hope and pain 24/7. I've used my saving to pay for the MRI and the shot, but that's as much as I can afford given my financial situation. I just want to get back to work to start paying tax and NI to fund the NHS.

Thanks for the clarification.

OP posts:
PeloFondo · 10/10/2022 19:46

If you can, offer to take any last minute cancellations. I did that (got a call to get there in 45 mins), and saw a consultant who "doesn't usually deal with this stuff", they took one look and put me on the surgery list
It didn't matter anyway as I developed cauda equina and needed a 5hr discectomy and laminectomy!

Nat6999 · 10/10/2022 19:54

Ask for anNHS choose & book referral to your consultant at the private hospital, you will get seen sooner than at the NHS hospital.

Mxflamingnoravera · 10/10/2022 19:55

Gosh @PeloFondo that sounds awful. I will of course take any last minute cancellations- good advice thank you.

OP posts:
Mxflamingnoravera · 10/10/2022 19:59

Thanks @Nat6999 I was told there would be options into private hospitals and my surgeon works in two local private hospitals so fingers crossed I'll be able to see him and soon.

I'm rarely one to criticise the NHS but five weeks to type a dictated letter sounds crazy to me when it could have been dictated directly into a letter with voice software.

OP posts:
Cocoaone · 10/10/2022 20:13

If it's a referral to private I have no idea why they are taking their time. Call daily to check progress, stressing how much pain you're in.

But if you can't afford the surgery privately - why are they referring you to a private hospital/surgeon? The risk is you'll wait weeks to be seen, they'll tell you how much the surgery is, you'll say you can't afford it and the best they can then do is possibly refer you to the surgeon's nhs wait list - where you'll start your wait again.

Can your GP prescribe some stronger pain killers in the mean time?

PeloFondo · 10/10/2022 20:14

I don't know what drugs you're on but I used
Paracetamol, naproxen, diazepam, codeine and oramorph (yes, all at once!)
Plus thermacare lower hip and back wraps (these kept me sane)

Lavendersummer · 10/10/2022 20:21

Im sorry you are dealing with this. A relative had similar. Strangely anti depressants can help.
Go and see your GP and see what else they can offer for the pain.

Mxflamingnoravera · 10/10/2022 20:39

The referral is NHS payment for private treatment not a referral for paying private treatment. He said I would have a choice of hospitals and surgeons in both the NHS and private- but all paid for by the NHS my private surgeon said he has 2 NHS slots a week but would make a third available for me once the referral comes through (because of pain levels).

I've tried all kinds of painkillers including amitryptaline which I'm currently taking 30mg at night and my dr today suggested switching to duloxetine. I was taking naproxen 50mg x2 daily but they make my skin hypersensitive so I've stopped those. I'm also taking a mixture of cocodamol and tramadol (each at four hour intervals). I've also tried morphine patches 10umg which were ok for an hour or so, but seemed to lose effect over the week of the patch being on.

I use ice and heat and I do physio on my good side only. I'm normally fit and healthy and carry no extra weight and I don't smoke.

I have my ESA appointment tomorrow in person, With a job coach- I'm signed off until at least 4 November. But £79 a week is not even going to pay my utility bills and I have some savings which preclude UC.

OP posts:
Mxflamingnoravera · 11/10/2022 06:03

Overnight my leg has kept me awake all night long. I can find no position that is comfortable and I slept for about two hours and woke drenched in cold sweat and absolute agony. My body was shaking and nothing I tried (moving, lying on my side, sitting) give any relief. After an hour of this uncontrollable shaking and pain I called 111 (2:00 am) they referred me to a clinician who called four hours after my original call to 111 (to be fair, someone did call to apologise for the wait). He said "no painkillers work for this, you'll just have to start moving, you won't do any damage and push through the pain". I literally cannot move more than a couple of steps, I can make it to my bathroom and back, and that's holding onto walls, banisters and anything I can grab.

His advice was to go back to the private consultant, I suppose I'll have to, but I can't afford another £300 plus £100 taxi fare to get there. I've been awake since 1:30 this morning with this pain, I want to sleep, I want some let up so I can get some rest.

I'm not expecting answers, I just needed to vent a bit here this morning. I'll start my morning painkillers now, but I can't remember what I've taken overnight so I'm a bit nervous of overdose (although I suspect I'd have to take a hell of a lot more than a dose of tramadol and a couple of neurofen plus between 1am and now). I am really at rock bottom. I'm starting to calculate how I can cobble enough money together to pay for private surgery. It's my only hope now as far as I can see.

I just want a bit of a handhold really right now, it's been a long, cold and lonely night. I hope any fellow sufferers are managing better than me this morning.

OP posts:
Marcipex · 11/10/2022 06:35

I’m so sorry you’re dealing with this.
I am afraid the situation is grim for many people now.
I take amitriptyline, pregabalin, duloxetine, oramorph, diazepam and paracetamol and yes, all at once.
My pain has reduced but it has taken five years and I can’t come off the meds without re igniting it. The duloxetine is helpful and I think it’s worth your trying it.
I’m sorry I haven’t any better advice. We have spent thousands on private scans and physio.

TheyreAllDeadDave · 11/10/2022 06:46

This sounds horrific and I'm appalled at the level of care you are (not) getting.

But if you have savings that "preclude you from UC" you must have a fair bit tbf. The savings limit at which you don't get any UC at all is £16k so I'm assuming you have more than that. So can't you use your savings to pay for treatment privately? I mean, it's shit and you shouldn't have to, but it seems like you have that option open to you...

Lougle · 11/10/2022 06:59

I'm also confused. If you have savings that preclude UC, then you have more than £16,000 unless you've misunderstood the rules.

Mxflamingnoravera · 11/10/2022 07:16

Yes, I do have savings over £16k but I have a leaky roof, no job, a boiler with a dangerous appliance sticker and a car that needs work, £10k on surgery will wipe me out. If I fix those things and
I'll have to live on savings and won't be able to fix the broken stuff because it will be deemed to be spending to become eligible. I'll be caught in a catch 22 situation. I also have money in an account in my name which belongs to my son, but it will be added in- but it's not my money, I saved it for him over the years when he was a child- I should have opened an account for him, but didn't. If I give it to him now, it'll be deprivation of assets. This money was to be a contrition to a house deposit and came from gifts etc from my parents to my son. I've been trying to get him to take it and use it for ages, now he stands to lose it if I need to claim- they won't accept that it's his money not mine.

OP posts:
Mxflamingnoravera · 11/10/2022 12:38

My referral into the private hospitals has come through, three weeks for an appointment and 48 weeks for treatment are the average waits. I will be bankrupt by then because all my savings will go on living because I cannot work like this. I will have to borrow to go private so I can get back to work.

I've signed up to retrain as a data analyst a three month boot camp, I'm hoping I can get work based at home on completion of the programme. It's a free course, probably coming out of those adverts suggesting a ballerina should go into tech. At least I'll be doing something more positive than lying on the sofa or bed all day watching TV.

OP posts:
Fearless9286 · 11/10/2022 13:05

I've been on similar timescales with an L5/S1 herniation that niggled from April and took me off my feet for weeks in July during a bad flare up despite weekly physio sessions and religiously doing daily stretches/exercises.

I had the nerve block injection at beginning of Aug, it can take 3 weeks for it to take effect so there might be some hope for you on that front yet. It definitely eased the pain to a more manageable level but didn't solve the problem. I found ibuprofen and 12.8mg codeine (available combined over the counter) did more for me than naproxen + cocodamol with amitriptaline but everyone is different.

I had discectomy/laminectomy surgery privately last week and have found post op recovery difficult. I don't want to discourage you but it is not an instant fix. I am as debilitated now as I was during the worst flare up and still have tingling and numbness. The burning leg pain is gone but having a lot of incision pain and unable to sit on a chair. In the midst of a flare up I'd have happily cut my leg off, now I'm 50/50 if surgery was the right choice. Perhaps in a few weeks I'll feel more positive though and the recovery will be a distant memory. For context, I'm otherwise healthy, moderately active and in my thirties.

Hope you get some relief soon, sciatica is horrendous and so much worse when you are exhausted plus trying to balance financial considerations too.

Mxflamingnoravera · 11/10/2022 13:48

Thanks for this insight, I know that surgery is last resort, but I can't see any other way out. Interesting that your shot took three weeks to work, did you get a worsening of symptoms before you got the relief? I'm going to speak to the surgeon tomorrow to see if this is usual or to be expected. It is way worse than my initial flare up and I've had to borrow crutches to move around.

I'm having to miss my ESA appointment today because I can't get there, can't walk, can't drive and there are no direct buses. I can't sit on a hard chair and the pain brings tears to my eyes. They are supposed to call me within 3 hours of me calling them, I've no idea what the impact of not going will be.

OP posts:
Fearless9286 · 11/10/2022 13:57

Yep, I was worse for a week or so and then slowly it eased off. By 3 weeks I was moving again, albeit very limited but not needing zombie amounts of drugs and felt a bit more 'functioning'. My consultant advised this was fairly typical in their experience.

I pushed on for surgery as I found I couldn't sit for more than 30mins without discomfort or walk for about 10mins max without feeling like someone was clamping my leg tighter and tighter. I figured that in my 30s, life was for living and I was just functioning.

Don't mean to sound negative about the surgery, I just found it a stressful experience and I'm a bit fed up of being stuck at home doing nothing! I don't think i really thought through what the 6 weeks after surgery would look like as stupid as that sounds, i just wanted the leg pain gone and figured everything else would be easy. Ask me again in a month and I'd hope I'm much more positive!

FixTheBone · 11/10/2022 14:01

Not sure if this has been mentioned, but if all of this was within the NHS, or care comissioned by the NHS, the 'clock' (RTT = real-time clock) may have been paused at several points during the process, so, for example the injection probably counts as a treatment, so the clock may have stopped from the point of the injection, to the point where it was deemed that another treatment was necessary.

FixTheBone · 11/10/2022 14:02

FixTheBone · 11/10/2022 14:01

Not sure if this has been mentioned, but if all of this was within the NHS, or care comissioned by the NHS, the 'clock' (RTT = real-time clock) may have been paused at several points during the process, so, for example the injection probably counts as a treatment, so the clock may have stopped from the point of the injection, to the point where it was deemed that another treatment was necessary.

meant to write "referral to treatment" clock... mind on many things...

PeloFondo · 11/10/2022 14:17

@Fearless9286 it gets better
You shouldn't sit for long anyway so make sure you're standing or lying down, and lots of gentle walking (break it up a bit)
I slept for about 3 weeks post op and watched Buffy and was fit for nothing
Then walked, and walked, PT, physio and was back on a horse at 8/9 weeks post op
That was 2017 Smile

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