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?

[Mxflamingnoravera]

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.

Thank you, that's so reassuring. I'm walking up and down the driveway in my dressing gown a couple of times a day, I'm sure my neighbours think I've lost it 🙃

I can recommend a shopping centre when you feel better
Flat surfaces, benches and usually a coffee shop for a handy break. I was really worried about people bumping me too, that hurt for a bit
I built it up so I was walking 5-10km

Yeah that 18 week wait is not being adhered to at the moment. My DD has a 54 week wait for cardiology and that is an urgent appointment!!

I've just looked at the booking in for an appointment and treatment average times for NHS patients in Nuffield hospital. It's 3 weeks for an appointment and 48 weeks for treatment. I cannot live like this for 48 weeks, so I'll have self refer to go private and set up a payment plan that (hopefully I can pay off when I'm back at work.

Today has been another wasted day on my sofa, while I let this new flare up calm down. I can start doing some exercises tomorrow.

OP I’m so sorry to hear you are suffering.
I have a cervical disc herniation (C6/7) and have been in a lot of pain same as sciatica but in my neck and arm.
I also have a big herniation L4:/5 which was debilitating off and on for ages but no longer gives me pain.
Obviously for some people surgery works well and is needed but my Consultant said only around 1% of people need surgery, the rest will get better with time and supportive measures alone. The body does have some capacity to heal these issues, resorption and immune response but for some people it just takes longer.
if you do end up needing a surgical intervention Its probably worth paying and then reimbursing your son once you are well. The DwP slso wont consider paying for a faulty boiler and your car as deprivation of assets either so pay for tjose things now.

Have you tried a good cbd? String one? You sound like me and I couldn’t sit or move without going into excruciating spasm and the only thing that helped was good cbd and a high strength / quality omega 3 which I took 5 a day. I slowly began to move and get swimming to help.

Things have speeded up since I wrote my original post. The referral came through two days after I wrote my original post. I've now got a date for surgery - microdiscectomy on 16 November. In the meantime I have had a nerve root block which was partially successful but will wear off. My disc has not shrunk away from my nerve at all so the awful pain will return in my leg once the block wears off. Unless I have surgery. I'm terrified but relieved.

Sorry to hear this OP - it's utterly shit. Just wanted to give my two pennies worth.

1. Look out for Cauda Equina symptoms - and sniff of them and you go to A & E immediately.

Urine retention. Loss of control of bladder and bowel. Numbness around the saddle area (any part of which you would sit on a horse.

1. My L5/S1 went from being bad to CES. Had to have emergency surgery on it 3 times in 2 weeks as my spinal cord was being crushed. Ended up in a spinal injuries unit after. I'm 3 years on now and although it's not been an easy ride, I'm doing very well in the grand scheme of things, my pain is controlled most of the time and I've had great help from the pain team. Has a spinal stimulator fitted and gone back to work. This is after quite an acute spinal cord injury, so whilst I fully understand if all feels and looks bleak currently there absolutely is light at the end of the tunnel! X

@Mxflamingnoravera glad to hear you have a date sorted !! My nhs “ urgent” consultant appt was again last min postponed for another months which I am beyond frustrated with. My private spinal injection hasn’t worked well and I’m back to quite high levels of pain at times but trying to get on with things. Going to speak to gp about a swap from amitriptyline if possible, I tried to reduce it after the injection but pain was terrible but can’t cope taking them longer as it’s impacting my blood sugar levels daily among other things. I will be thinking of you going for surgery , hope it’s a success for you!!!