NHS waiting list!: So I have been told that I... - Pain Concern

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NHS waiting list!

Shakou profile image
18 Replies

So I have been told that I have to wait 12 weeks for a root nerve injection! This is total **** I can't even walk properly let alone anything else, which includes work. I'm totally screwed being self employed, benefits take months to happen now, you don't get much either...

Has anyone else had problems with this? I was told by the bookings people in the hospital it isn't their problem & that I had to wait. Is there anything I can do get around this? I really can't live in constant pain for this amount time, my GP said the only thing that could bring relief is the injection, my pain medication is ineffective, medics aren't happy to put on anything stronger due to that it doesn't work out that well for me. Thanks

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Shakou
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18 Replies
Bananas5 profile image
Bananas5

I hate to be the bearer of bad tidings but we have waiting lists for all hospital procedures in the UK.

12 weeks is actually quite short. Most people wait a lot longer. I presume this is being done by the pain consultant at his day clinic?

As regards benefits it would be worth your while seeking advice from the CAB. They will be best placed to direct you. Yes out of work benefits are pitiful but people have to manage as best they can. There are also disability benefits whiich can be applied for whether you work or not.

If you have a long term chronic injury this may be worth applying for PIP anyway.

Oh yes. If your nerve block is successful and you feel you need another in a few months - the waiting times are even longer. 12 - 18 months.

Pat x.

lowlife profile image
lowlife

I had to wait six months for mine. Ask if you could go on the cancellation list. In other words if someone cancels you can take there appointment at short notice. You'll be suprised how many people cancel as like you they have waited so long that the injury has healed or they chicken out. Good luck and I hope your seen sooner rather than later.

RAYJAYC profile image
RAYJAYC

I've been waiting since 2nd December for my SI joint injection; the date for it isn't until 29th June so you've got a short wait in comparison!!

Many people have a much longer wait than 12 weeks for this sort of thing - you're one of the lucky ones......

You can apply for ESA straight away if you're unable to work through disability or illness. Yes the payments aren't great but better than nothing if you can't work!! It's a basic payment whilst your case is being assessed (called contribution based) and if you're successful, it changes over to income based which in your case, from your post, will be nothing so you go onto that payment. You'll need good medical evidence to get ESA so get applying!!

If your condition is likely to last more than six months then you can also apply for PIP but as you'll have read on here, it's a minefield but again with good medical backup, you stand a chance of getting something.

 What have you got to lose by applying? Like I've said, the benefits don't amount to marvellous amounts but better than zero!!

RAYJAYC

Cmc43 profile image
Cmc43

You don't say what causes the pain. A nerve block is not usually a permanent solution and it can be essential to identify the reasons why you   are in such difficulty.  It's no comfort to you but I waited many months for treatment. Actually years for a proper diagnosis. One medication that four years ago lessened the intensity was Pregabalin. Not a conventional painkiller it taking it gave me a small part of my life back. It may be that you need a referral to a Spinal  Specialist.

nodmeister profile image
nodmeister

I feel for you. I can only suggest you contact the clinic directly and say you can accept a cancellation and get yourself a TENS machine. Either may not be of any use to you but it's all I can think of.

Good luck.

Nod x

Sarahk1000 profile image
Sarahk1000

Hi, I agree with nodmeister. Get a tens machine. When drugs fail, tens machines are the next best thing. I have 2 machines are permanently.  One on my neck and shoulders, the other on my lower back. My whole body buzzes with electrical pulses.  Feels quite nice to be honest.  Good luck! 

Sarah x 

coffee_luvvie profile image
coffee_luvvie

Hi,

I had the SI diagnostic nerve block injections in October last year after waiting since June. I had the denervation done in February this year and have been almost pain free since. These things do seem to take a wee wait for but totally worth it if they are successfully. Hope you get seen soon 👍🏻

J. 

Shakou profile image
Shakou

I have a prolapsed disk at L5/S1 which makes it very difficult to walk some days I limp, it is very painful also walking incorrectly will affect my entire body. In turn this nerve also controls the bowls etc so going to the bathroom can be difficult. Yup its being done by the pain consultant its a day thing. I just want them to get on with it, if there is answer/solution to the problem then it has be done right away.

I can't take anything like Pregabalin without some very nasty side effects, the medication I do take when its bad doesn't cover the pain it just blast right through I hate being druged up all the time it isn't a solution. 

I have applied for PIP, but I don't hold out hope cause when CAB helped me fill in the form it they were like 90% of them have to appeal it can take 6 months just sort it out, great more stress. ESA is like £80 something a week right when you first start out? I can't live off that, I earn far more working hence why I need to work get back asap. 

Bananas5 profile image
Bananas5

Shakou there is a lot of anger in your post and yes I can understand the difficulties of apparently not getting the treatment you want./need.

I can also understand your dislike of  benefits.

But......

Anger is a waste of any energy you may have. As you have attended the pain clinic did you have the process of 'pain management' explained to you? How you have to pace yourself? How to meet your pain half way and not let it rule your life? How to develop coping skills?

It is not just one injection and you will be able to return to the life your previously had. Chronic pain is that...chronic which means it is likely to remain with you forever. The pain clinic is lovingly referred by the staff as last chance saloon.

You may well feel better after this injection but it is only a short term fix. You must learn to change your life. Chronic pain is like a bereavement where you long for a past life. But that is where it stays...in the past.

You are going through the anger stage. There is also blame which at the moment you are blaming NHS waiting times. This is all perfectly normal and I would suggest you google it. Somewhere on your journey you will hopefully reach acceptance. Some never do.

You are also angry about lack of any more than a pittance in the benefits system. Some of us have been fighting this for years and beliece me it is going to get a whole lot wrse.

If you need some money then this is what you have to do. Being angry with everyone gets nowhere.

I don't know who long you have been going to your pain clinic but if the pain meds they have given you don't suit speak to them or your GP. It isn't one med suits all and there are a wealth of meds and therapies to be tried.

Most on this forum have been through what you are experiencing and have come to terms with their future. Yes damned hard but you can do it.

Sorry this is long but do listen.

x

AndrewT profile image
AndrewT

I don't know if this will apply here, actually I doubt it but....A few years ago my then new Consultant, wanted a scan carried out.  A few weeks later  it still hadn't been 'done' so he spoke on the phone and suddenly...I was booked the next Wednesday!  Can you maybe contact a Doctor/Consultant?  Just a thought.

Best wishes, to you shakou.

AndrewT

onamission profile image
onamission

I had my last spine block April 2015 mine last 6-8 weeks I'm still waiting for mine

Bananas5 profile image
Bananas5 in reply to onamission

Can I ask where you live and have the pain clinic given any reason for the wait?

Pat x

onamission profile image
onamission in reply to Bananas5

Hi Pat I live in Shropshire our hospital became a trust when we were forced to join a hospital up the road, ever since we have been fighting to save our services and a long line of managers who have come from engineering. They have just took on 3 more doctors for the pain clinic making a total of 4 and now they have no theatre time like I said bad management  

Bananas5 profile image
Bananas5 in reply to onamission

4 wow that's some increase.

Yes it seems the same across England although I only deal within Scotland. No theatre sppace.

Our consultant only uses theatre once a week for CP so how they suddenly find it 6. 9 or 12 months down the line doesn't ad up.

We do have a vey active cross party pain group so our MSPs are well clued up. We have on going investigations as to why shortage of theatre.  Chronic pain has a very low priority when if comes to treatment even though it is much better than in past years.

Still appalling though Keep fighting

x

teadrinker profile image
teadrinker

Unfortunately I've had this happen in the past & more than once. As far as I can tell the medical staff in the clinic had no control over the waiting lists and times because the people booking the appointments were employed by a different organisation to the hospital - an example of how non NHS services are being brought in to run NHS services.

I ended up phoning the bookings people and asking for a cancellation. As it was I waited 8 months instead if the 11months (that's right 8!) they initially quoted. 

Can you ask for a cancellation?

Shakou profile image
Shakou

Well some good news, I'm going to have the spinal injection done before the end of the month, I got a cancellation so I am happy about that. My pain levels have dropped a bit, so I can now push on with physical therapy which I have do everyday, before it was too much to do that but it helps now that I can do it!

Yes I'm not happy with how long things take, it is annoying to me that my friends are going out there smashing it at work, whilst I'm sat here. I have even put development off my own projects until I know when I'm going to be healed. Living off benefits for me isn't an option because, as it has already been mentioned they will cut even further, besides I need work, I like what I do.

I think I can make a very good recovery from my injuries, especially once I have been through the pain management course, been treated for PTSD. This is totally separate from the disk prolapse, which you can fully recover from which then aid healing from everything else. 

I have TENS I use it.

The one thing I have noticed is how much pain affects your mood. I feel better now the pain has reduced a bit.

Recovery is a state of mind too, I have a strong desire to get better, plus I believe it is possible. I would rather try, than just give up & never try at all.

I hope everyone this gives others hope.

NinaCatLondon profile image
NinaCatLondon in reply to Shakou

Great news , I hope things improved

NinaCatLondon profile image
NinaCatLondon

I know this is an old thread but I'm at my witts end with this chronic pain. Similar story but mine is my rotator cuff. I haven't slept since 20th November apart from maybe 2 to three hours broken per night and its now 14th December. I've been on every so called strong pain killer with vert little success. I seem to get slight relief for 2 hours max and thats it, so I'm spending most of my time in pain so I don't I don't over dose. I recently had to stop naproxen because my throat was feeling closed and I have asthma. Now I've got withdrawal symptoms. Tramadol seemed to make the pain worse. My left arm and hand is buggered due to the connection to rotator cuff. My friend suggested a tens pain pen the other day so that should come tomorrow. I can't wait to try it. I just feel wrecked and should be a work but can't physically do it. I'm luckier than some I've read other people experience for wait times and I've been told I have another for weeks before I'm considered for the injection. I just needed to shared and support any one else in chronic pain. I have never felt pain so bad and I can't understand how we are expected to live with it. Its beyond exhausted and effects so much. Quality life has gone. I'm probably rambling a bit thus is 2020 surely there should be more that can help us all who are trying to get on with our daily lifes in chronic pain 😔

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