or is the NHS a heap of crap that's not fit for purpose and no-one gives a shit about anything but Covid?

[FuriousWithTheNHS]

Honestly, I'm so upset for my son and his girlfriend, they are at breaking point. I need to help them make a formal complaint. Where do we start?

My son's GF has had a slipped/ruptured disc for nearly three months now and has been in enormous, unbelievable amounts of pain. Because of Covid it took an absolute age for her to even be examined by a doctor in person, and since then her treatment at the hands of the NHS has gone from bad to worse.

Here are some messages my son sent me. I've edited out irrelevant chat etc, so if it seems disjointed that's way:

Me: Hi XXX how are you? Dad said YYY's back/leg is really bad at the moment
sent November 23, 2020

Son: Yeah it’s been really really bad. Been to A&E twice, the physio twice, a private osteopath twice. She’s been prescribed 5 different medications, none of them doing wonders so far. We’ve slept in 3 x 3 hr bursts for about 3 weeks now. Took us 3 days to get an ambulance after she spent literally 3 days on all fours. Unable to stand up, unable to sit down,unable to lie down. She couldn’t even sit on the toilet and has been reduced to going in a pan on the floor.

Been on the phone to her GP literally every single day. But the only way I can contact them is to phone and be given a phone appointment for the next day. So I’d ring 111 who tell me to ring 999. So I ring 999 and they tell me to ring 111 because apparently she is ‘not an emergency’, even though I’ve never seen anyone in pain like this my whole life. I even spoke to her GP one day when it was really bad, who told me to hang up and ring 999 right away. But because the 999 operators won’t let you talk, they just tell you to shut up and answer yes/no questions, they weren’t having it. Told me to ring the GP back, but to do that I had to speak to their reception and wait another 24 hrs for another phone appointment.

I had to lie to 999 and say she was unconscious and not breathing just to get an ambulance here after she collapsed on the door step trying to get into an Uber to get her to an ‘emergency’ gp appointment that they finally agreed to give us after me phoning twice a day for four days straight.

Pray to god you never need help from the NHS because I tell you now if you are breathing and awake you will not get it.

She has her MRI scan tomorrow morning. And she has slowly been getting better since she was last out of A&E over a week ago but the painkillers they prescribed her since then (which have been increased in strength already twice) are slowly starting to have no effect and she still has really bad relapses into really bad pain every few days or so. Last night being the last one.
sent November 23, 2020

Me: Oh god how awful. I agree the NHS is shit especially at the moment because everything is on hold because of Covid, not that it would have been much better before. You are right, it doesn’t matter what kind of state you are in, if it won’t kill you then you can just put up with it until they can afford to get round to you. Just dreadful.

It needs a serious overhaul. It was never designed to cope with the number of people in the UK now, they need to start changing the way it’s funded for a start, make the time wasters pay for appointments.

Has she actually been given a diagnosis?
What drugs is she on?

Son: November 23, 2020
She’s been given a couple of potential diagnoses but nothing for certain until an MRI scan. But at the moment either a slipped or herniated disc. Although there is a lump in her lower right back which according to the osteopath is neither muscular nor skeletal.

sent November 23, 2020

Son: First time she went to A&E I took her myself and she was given morphine and prescribed 2mg diazepam, naxopren and amitriptilyne, plus 100mg paracetamol every 4 hours...got her back high as a kite but still literally writhing on the floor in agony (worst night of my life) second time in A&E two nights later, she was taken in an ambulance and given morphine and intravenous liquid paracetamol, plus diagnosed 5mg diazepam (I have personally doubled her dosage since then to 10mg), a voltarol supppsitry (diclofenac sodium) and tramadol and her regular paracetamol

Me: Bloody hell. That’s some painkillers alright

Son: Yeah I know and they have been fairly ineffective so far.
They work a bit for 2 days at a time, before she had a serious pain relapse, and they wear off in half the time that I am supposed to wait before giving her another dose

Me: Thank god you are there, (he's out of work due to Covid) imagine if she was on her own

Son: Honestly no exaggeration my hair is going grey.. I give it another week before it starts coming out in clumps

Nov 28

Son: That coffee machine you got me has been a lifesaver because sleep for her comes in 2 hour bursts every 4-6 hrs and for me in one hour bursts because I can’t sleep till she stops screaming and crying, even though there is nothing can do except wait to give her the next round of painkillers

Me: How awful. No need to ask how the job hunting is going then. 🤯😩 It’s a blessing you’ve been able to be there for her at least. This is good practice for seeing the woman you love in labour 😬

Son: I've still been applying. But if I get any interviews in the next two weeks I’m gonna have to turn them down or say that I can’t start until she’s better. She can't be on her own she literally can’t even sit on the toilet
But worse by the sounds of things because labour is usually over within a day, this is like being with someone giving birth for 2 weeks straight

The thing is she had the ache in her leg constantly, but the extreme shooting pains are triggered by standing up or sitting down too long, and tomorrow morning we have a 45 minute Uber drive to get her MRI scan. I’m dreading it

Me: 45 minutes?! What hospital are you going to?

Son: It’s got to be done in Croydon for some reason. Yeah think they’ve fast tracked her to the only hospital available to do it ASAP

🙄

Me: Good grief what a shambles

Son: I honestly don’t know how we are gonna make it if it flares up

Me: Drug her up with diazepam before you get in the car

Son: She starts crying and trying to lie on the floor even in a 10 minute Uber to her Gp. I am literally dreading it so much

Me: If that happens then get the Uber driver to call an ambulance explain he’s bringing a patient to hospital but she’s too ill in the car to make the journey and needs a stretcher

Son: Nah, they’ll ask if she is awake and breathing and they won’t come. I’ve already learned that if you need an ambulance you can’t be awake and breathing

Son: And the hospital won't give her the MRI scan in A&E anyway, they’ll just put her back on the waiting list

Me: It makes me wonder if it would bet Better somewhere outside London.Just fewer people to deal with

Son: It probably would but I don’t fancy trying to get her on a train
Although it would be easier for her to be able to lie her on the floor

Me: How depressing. Anyway fingers crossed tomorrow is the beginning of a solution.

Son: Anyway I need to go now. We’ve had our TV show paused for a while and she’s waiting for me. I need to keep her mind off it while it’s not too bad and the TV show helps 😂

She says hello by the way 😊

Me: Of course, wish her lots of love and luck for tomorrow from me. xx

Schitts Creek is a great mood lifter although laughing might hurt.

Son: Laughing a lot does hurt at the moment 😂 makes it hard to find ways to cheer her up
24th Nov.

She was eventually diagnosed with a herniated/slipped disc and something else I can't remember, and was told she was on the waiting list to see the consultant for injections into her spine and/or possibly surgery.

Me: Hi XXX how did it go this morning? Has YYY had any news on her back injections?
December 15, 2020 at 2:18 PM
12/15/20, 2:18 PM

No news on her back yet
sent December 15, 2020 at 2:19 PM

Then there was a situation explained to me over the phone, where she'd been taken off one sort of medication as it was apparently dangerous for her to take too much for too long, and she was switched to something different. But because there has been no continuity of care and she never speaks to the same person twice, she was prescribed something that had a bad reaction in conjunction with something else she'd been prescribed and she was really ill. My son was terrified she'd OD'ed because she he couldn't wake her up and she was rambling incoherently. When he spoke to the NHS they said she'd been put on the wrong combination of meds.....

Then today I get this:

Today at 6:19 PM
6:19 PM
sent Today at 6:19 PM

Son: How much would it cost to sue the nhs for extreme negligence?

It turns out YYY hasn’t even been on the waiting list to see the neurosurgeon because after her gp clinic referred her to them, it turns out she has two nhs numbers for some reason, so the hospital sent it back to the gp clinic for clarification and they’ve just been sitting on it. Didn’t mention it to us even though we’ve literally been phoning them every other day for three months. So we’ve essentially been waiting since the 30th of Nov for a call we were never put in the queue for.

The last 48 hours she’s relapsed to being as bad or worse than she was when we had to take her to a&e twice. She’s now on morphine because nothing else works anymore, the ambulance once again refused to come out when I had to call them last night. They told me to ring 111, and because they are more inclined to listen to what you have to say than 999 are, they said, ‘okay that sounds serious’ I’ll speak to the ambulance / paramedic people and someone should get back to you soon. Two and a half hours later I get a call simply telling me to double her morphine dose and that’s it. I had already taken the initiative to do that before I even called them 😡

I swear to god i am so close to going down to the hospital with a baseball bat and smashing the place up until they do something 😡😡

You sent Today at 7:04 PM

Me: I don't know darling but you can make an official complaint, google it or perhaps go to a newspaper? Actually, I'll tell you what, let me put a thread on Mumsnet about it without actually identifying you both (or me) and see what advice people can give.

sent Today at 7:05 PM

Son: I’ll send you the whole story in detail tomorrow because there is so much they’ve done that has been useless / negligent
I’ll write up everything tomorrow and send it to you

The point is, they thought they were contacting HER, not her mother.

I don’t really see why phoning her mum matters as long as they phoned the patient afterwards. It is a simple mistake easily rectified.

Suggest you let your son know that if he calls the private consultants secretary and lets them know that she has had an MRI and at which hospital and when, the consultants secretary should be able to access it so the consultant can review it before her appointment.

Also, if she can, suggest she tightens her stomach muscles before trying to move, it might help just the tiniest bit. Are they using icepacks before she needs to move? Neither suggestion will have a huge impact, but at this stage Im guessing anything that helps a tiny bit is worth trying

Calling the secretary to let her know about the scan is a really good idea. These things go missing so often.

Suggest you let your son know that if he calls the private consultants secretary and lets them know that she has had an MRI and at which hospital and when, the consultants secretary should be able to access it so the consultant can review it before her appointment.

Thanks, I will.

I don't see how Covid can be directly blamed for a series of dministrative failures to process a referral to a neurosurgeon.

Almost every aspect of NHS care is effected by covid, I work in mental health and my job is unrecognizable to 2019. Each day there are tens of thousands of patients with covid admitted to hospital requiring acute care. Yesterday there was 30000. People delay presenting which means patients attend GPs and A&E in worse states, and so workloads are unmanageable right now. That said, admin errors certainly happened pre-covid, and you are entitled to push to be bumped up the waiting list.

And a young woman in constant unbearable pain who has collapsed and cannot get up is at serious risk of ODing on her opiates giving herself heart failure because it's the only avenue left to her that offers any respite, no matter how temporary.

She needed an ambulance urgently, yes. But your son's lie about her breathing may have deprived someone who needed immediate life saving treatment an ambulance. If your DIL had stopped breathing and had minutes to live, would it be ok for paramedics to attend someone in severe pain first?

The NHS has been appalling for years. Not uniformly- they do some amazing things, particularly in specialist care, - but in general we do not have a functioning health care system that you would expect in a rich country.
I have lost 2 family members to botched "care" and have others living with debilitating pain, needing operations they will have to wait years for.
And at the same time the UK is being bankrupted to protect the NHS ( surely IT should be protecting US??)
All that will come out of this whole sorry mess is that the population will finally accept that it's not fit for purpose and call for a EU style system, which might end up giving us better care I don't know, but to lose a free-at- the-point-of-access system breaks my heart, because I have been so poor in the past I genuinely could not have found 20 quid to pay for a GP appointment, and I know I'm not alone.
This is definitely 12 years of austerity coming home to roost. The worst thing for me is the vitriol directed at somone desperate enough to lie to get treatment. We shouldn't have to be reduced to that! Be angry at the decimation if our health services, not sick and desperate people!

There will always be people who will lie to get treatment in a triage situation, regardless of the health care system.

Many back issues do cause agony and don’t respond well to any of the available treatments.

I think it's time that people who are eligible to use the NHS carried a card to prove it. I know there is a whole ethical and moral argument over denying care but can we afford to provide care to those not entitled? I think not.

I totally agree silent.

We need to have a system more like France or Germany's with ID cards and each eligible person paying a top up insurance.

A week ago I would have absolutely agreed with you. On Tuesday DH had a funny turn and has received faultless care from paramedics, A&E and now the cardiac unit of our local hospital despite huge COVID pressure.

So that's great.

But the whole system is a patchwork matter of luck and lottery.

I wish we could just opt out of it. I have had 7 minutes of NHS care (other than dental checkups for which there is a charge) in the last 15 years only and pay loads of income tax. 20% of my income tax goes on the NHS so if we could opt out income tax bills could reduce by 20% for those opting out. Everything my son has needed in the last few years I have had to pay for so NHS never really there when you need it so might as well abolish it or let people opt out.

This was the same situation with back problems 20yrs ago. Once I didn't leave home for 6 months and dropped to 8st (5' 11') because I was unable to sustain the weight of clothing, pick up utensils or sit at a table to eat. When it first started I repeatedly went to GP and as a mature student my doc was based at university. I left one appointment at GP and went straight to talk to my supervisory tutor only to find GP was on the phone to her, breaking every concept of patient confidentiality, asking if my course grades were ok because he couldn't understand why I was getting hysterical. I stood at her office door and heard it all. It was only after that call I finally got an MRI, the waiting list at the time was EIGHT months and I didn't see a consultant for results for another 4 months after that. My MRI showed my disc had completely disappeared, zero disc space, scar tissue holding discs together. No longer amenable to any surgery due to scarring. I have taken prescription strength painkillers every day of my life since then and have periods of very poor mental health due to pain.

@Xenia
All you've done is describe exactly how private insurance works. Sure opt out of the nhs but your insurance premiums will still be wasted in exactly the same way if you're not using it. How many thousands do people spend in car/home/buildings insurance and never use it.

@silentpool
there's plenty of money to run it properly but the government chose other things to spend it on. You surely can't have missed the billions being thrown at private companies to deliver utter incompetent services.

Xenia hates the nhs but loves frequenting the nhs threads. Must be a hobby.

YABU. If you don’t like the NHS you’re very welcome to pay for private medical care instead.

@Pomegranatespompom
If my memory serves me correctly Xenia hates everything that might have the slightest whiff of collectivism.

On the whole the input we have had for ds from the NHS has been fantastic - when Virgincare took over the contract for children's services in our area, it was like falling into a black hole.

@Domino20, wider budgetary expenditure aside, it's expensive for what you receive as a "consumer" so it's hardly value for money. I think I only managed to get a dentist appointment in 2020. My GP was not taking face to face appointments from March onwards. So now I've moved back to Australia, I have gone and caught up on my healthcare, having missed all regular appointments and a much needed asthma check. No waiting time here for my appointments, no postcode lottery, it comes across as easy to access and fair in its provision. I think the system needs to be overhauled as when you compare it to other countries, it's an overwhelmed mess and because it's "free", we are expected to be grateful.

Your poor DS and gf!
Contact Daily Mail? Tweet your MP?

Good luck to you all, hope today's appointment is the beginning of the end. Horrible situation to be in.

I almost died in childbirth in the UK thanks to the NHS. I moved back to Australia a few weeks later because it was all so diabolical...I never understood this weird admiration Brits have for their health system. All countries have them, some better yours and they don’t clap and carry on about it..It is just because it’s free (not really, but you know what I mean). Cause I reckon a lot of people would prefer a user pays system and get better service. Or at least start charging Heath tourists for their treatment. The amount of patients at St Mary’s who got off the Heathrow express at Paddington Station used to astound me.

This isn't just a Covid related issue. Treatment pathways for back pain have been difficult and long for at least the nine years I've been navigating them.

I should be having spinal injections multiple times a year, and it'll be a year next month since I last had them. I dread to think how much longer it will be until things restart. They certainly do not work for everyone however, and are not a magical cure all.

I would strongly recommend doing all of the physio religiously, and also undertaking all of the non-medication suggestions offered on this thread eg. Heat, TENS machine etc

A quick google of chronic pain should give you some info to read. There's so much more to it than just being given a pill and it goes away (like you could for a mild headache). Certain things can make pain worse, such as not sleeping well, hormones etc. And some of it can be helped by a change in mindset (as BS as that sounds). Getting her to aim for a more manageable pain level, rather than zero pain, might help her reframe it in her mind, and might give her a different appreciation of the medication. For the longest time I was assuming they (opiates) would take away my pain, but actually they just took me to a different place mentally than where the pain was (if that makes any sense?)

I got through the first few weeks after fracturing my spine by watching The West Wing in its entirety. Was so out of it on meds that I couldn't recount the plot afterwards, but it gave me something to just focus on.

As a pp has said, scans are done and reported online, and both hospitals should have access to the same system to view the report. I hope that she isn't waiting too long to see a neurosurgeon.