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

So would you see her lying on the pavement/doorstep then humpty? How long would be long enough for you to be satisfied that she is in excruciating pain and can't get up? An hour or two? A day or two?

I'm not defending it, I'm saying it's disgraceful that desperate people should feel the need to do it in the first place.

Op, please try to contact your Care Quality Commission. It should be accessible via the NHS website and they have to respond within a certain time.
I really hope the poor woman gets treatment soon.

@FuriousWithTheNHS

So would you see her lying on the pavement/doorstep then humpty? How long would be long enough for you to be satisfied that she is in excruciating pain and can't get up? An hour or two? A day or two?

I'm not defending it, I'm saying it's disgraceful that desperate people should feel the need to do it in the first place.

Yes they should not have to be that desperate that they have to say that to get help. What else was he to do?

@FuriousWithTheNHS

So would you see her lying on the pavement/doorstep then humpty? How long would be long enough for you to be satisfied that she is in excruciating pain and can't get up? An hour or two? A day or two?

I'm not defending it, I'm saying it's disgraceful that desperate people should feel the need to do it in the first place.

Yes I would rather see the poor woman lie on the doorstep than know that someone’s husband or daughter had died from a heart attack or an asthma attack and the ambulance didn’t go to them because your son lied. Obviously

Yes I would rather see the poor woman lie on the doorstep than know that someone’s husband or daughter had died from a heart attack or an asthma attack and the ambulance didn’t go to them because your son lied. Obviously

As of course we all would, in theory. When it's your loved one lying on the floor in all sorts of pain and you are scared and desperate, you do what instinct and adrenaline and fear compels you to do.

As the fifth richest economy in the world we shouldn't have to lie to get help, should we? If she'd been treated properly weeks ago there would be no need for ambulances at all.

I have been waiting 10 months for a skin patch test. Fair enough it’s not urgent, but it’s very annoying when I accidentally trigger my skin by unwittingly using something I’m allergic to. It’s not even an easy process of elimination, I seem to get a reaction to unconnected products like eye drops and waxing strips.

Yanbu. There are some wonderful people doing incredible work in the NHS and I have huge respect for anyone working in it, but the system was already broken pre-covid. Decades of underinvestment and generally being treated like as too hard to fix / political football by the various governments.

I was misdiagnosed by nhs GPs and consultants for years. An overseas doctor I contacted online spotted the problem straight away 😭

A relative spent over a year in 2016 waiting for an urgent operation because it was not ‘emergency’. Obviously it became an life threatening emergency at which point she got treated.

We don’t have Western standard medicine in this country anymore.

Very sorry I hope she gets the help she needs.

I'm a medical negligence solicitor. Suing the NHS takes years and won't get the help she needs now.

The quickest way to get sorted is to go private if that's an affordable option.

Make a formal complaint in writing to the Trust's Chief Executive office. Bullet point the chronology and set out what you want to happen. Ask PALS to help you too.

My first thought reading the history was cauda equina too. I'm assuming she doesn't have any loss of sensation over buttocks/ legs or continence issues..?

pinot No, I've asked and apparently not.

He needs to contact PALS. Unfortunately pain in and of itself isn't necessarily an emergency or meaning that someone needs specialist care that day. Sometimes it is painful but going to hospital doesn't achieve anything if she needs to be on a surgical list.

@FuriousWithTheNHS I had emergency surgery last year for cauda Equina, and after hearing some horror stories not dissimilar to yours regarding agonising pain I'm glad my disc slipped fully to need the surgery! I still had to cough up for private physio post-op as the nhs physios just didn't have time- it was rushed and every concern was just "well you did have spinal surgery". £600 of physio sessions later and I'm 90% recovered.
My dad paid privately in lockdown for steroid injections in his slipped disc as the hospital cancelled all appts and he was left a unable to bend at all. I think it was about £400. He will eventually need surgery but nhs prefer pumping him with painkillers to delay expensive surgery.

The nhs is totally overstretched and covid is being used as an excuse for everything. I don't blame the staff- underfunding and understaffing of frontline staff is the problem.

I realise pain itself isn't life threatening but it is SO debilitating that it takes a toll on your mental health, and of course staying on high doses of a cocktail of morphine/diazapam/tramadol etc long term is not ideal either and can have its own consequences for your future health.

I've had the injection she is waiting for. It's not a quick fix, and won't magically cure it and it will reoccur, so just bare that in mind OP when you speak to your son.

They inject prednisolone (sp) which is an anti inflammatory which reduces the inflammation in the discs to untrap the nerves, but sadly it wears off.

With regards to the situation you describe, been there. It's shit. I think I fought for a year to get the injection, so she has my full sympathies.

A relative spent over a year in 2016 waiting for an urgent operation because it was not ‘emergency’. Obviously it became an life threatening emergency at which point she got treated.

This is what seems to happen - things that could be treated early and nipped in the bud are ignored and left to fester until they become a major emergency and only then do you get the help you need. Surely that is more expensive in the long run.

My friend is awaiting surgery for the same thing. She's had this for around 3 years, so even pre-Covid. Gabapentin helps her function each day. She takes it several times a day, every single day. It helps her a lot.

Emily I know someone else who has had surgery and the injections, and they said the same, although the last injection they had worked wonders and they've been a few years with no recurrent issues now.

That sounds dreadful, your poor daughter in law 😢 I had a terrible experience at the hands of the ambulance service - badly broken leg, bones trying to puncture skin. A random GP had heard the fall from his garden and rang the ambulance service to explain severity of break and to confirm he couldn’t find a pulse below the break. The result? 5hrs in the recovery position, on concrete, outside, at night with no pain relief. The paramedics and consultant when I got to hospital could not believe how long I’d been left. I was rushed straight to resus and thankfully they saved my leg. I complained, was told the call handler didn’t pass on the info about no pulse, and there was high staff sickness and low crew numbers that night 🤷🏼‍♀️🤷🏼‍♀️

I think the NHS is good and bad in equal measure. It can be completely random in this respect depending on where you live.

I had nine referrals for SPD while pregnant and they literally just kept binning them until the local MP got involved. But I've also had world class care for other things.

I think it sounds like this person needs admitting and seeing to properly and the local MP might be the way to do it. She's lost most day to day functioning and that's pretty serious. Don't let them hide behind Covid. And it's not a zero sum game - treatment for her doesn't necessarily mean no treatment for someone else.

Also we lost my MIL die to negligence the following yr after she suffered a cardiac arrest after routine elective surgery. She had angina (surgery nothing to do with this) and we have letters and a transcript of appts between her and the consultant prior to the surgery where she tells them she has increased chest pain. No action was taken, and we found after her death that her angina was much more advanced than initially thought. They proceeded with non urgent surgery on a patient reporting increased chest pain 🤷🏼‍♀️ Our complaint is still ongoing...

• due to negligence! Also both our experiences were pre-covid 😢

Jesus Christ Allsizes that is horrific. Even without the no pulse element to it, you should not have been left like that. I despair, honestly.

And to think it was only 30 years ago that Dr Legg in Eastenders still came out to the bedside of anyone with the flu and you could get a doctor's appointment that day without having to sacrifice your first born to the devil.

Your son and his gf should go to PALS and book a private appt. The private doc can refer for an emergency NHS surgery if necessary.

I was absolutely floored when your son lied to 999. Life threatening emergencies. When you are close to death within minutes or hours. He could’ve diverted an ambulance away from a patient that was actually dying. Immense pain is horrible to bear and witness but sounds like she would live to see another day.

And why is he changing medication doses on his own? Is your son medical? Does he know the risks associated with that (opioid toxicity, respiratory depression) THEN your son would have a valid reason to call 999 but it would be from his own doing.

I hope this teaches everyone that if you think covid doesn’t affect you. You’re wrong. It does. God forbid you need an ICU bed if you had a heart attack, stroke or asthma attack. Because there are no beds to spare.

@BlackForestCake

That's what years of underfunding gets you. You didn't vote Tory by any chance did you?

There’s always one.

Congratulations @BlackForestCake - it’s you.

@BlackForestCake. Seriously have a day off from your spiteful bullshit. The OP is in a terrible situation and you ask who she voted for. WTF?

OP. I have no advice other than there are procedures to follow. The sooner you start the complaints procedure the better. Your son needs to be keeping a diary both physically and picture/video.