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

Do you suggest they let people with Covid die rather than trying to save them then because the incompetence of the government to put in place effective measures has meant numbers have spiralled out of control? That would free up staff I suppose, I didn't really understand your timeline to be honest, but yes, complaints can be made through PALS, they could try and sue I guess, but his calls to 999 will have been recorded and he might be left explaining why he lied to them. Yes the NHS does require improvement, they do care about more than covid, but that's pretty hard when it's overwhelming a buckling service bursting at the seams. It sounds like the private consultation wasn't much help either.

It sounds like the private consultation wasn't much help either.

She hasn't had one yet.

I had a slipped disc a few years ago. I literally couldn't move without screaming in pain and couldn't go to the toilet unaided. In desperation I went to a sports physio I had used previously and he cured the extreme pain although I then suffered from sciatica for months.

I'm not saying it's the answer in this situation but I was getting desperate and was willing to try anything.

I don't think this is a covid thing. Exact same thing with my other half. Whilst I would say that a slipped disk isn't ambulance worthy, everything else is a shambles. Other half had sciatica for almost a year, getting progressively worse. Palmed off, though no painkillers worked. One day he sneezed and that was the end of that. He said he could actually feel the disk rupture and the heat move across the area. He couldn't move for the whole day, so I drove him to A&E. After about 7 hours of waiting, and a telling off from the triage nurse for it not being important, he was seen. Put on the list for an MRI. I think that took 6 months. By the time that was done and results were back, the pain had gone and he had no feeling in his one leg anymore. Cue a second MRI as the first was out of date. By the time the second MRI was done the consultant advised they can see the damage, but it's too far gone even if they operate (which they would do) as the feeling in his leg won't return. As he's not in pain anymore he opted to not have surgery, and instead deals with daily pins and needles in his leg, but no actual feeling.

Unless it's routine, the NHS is reactive, not proactive. A change in attitude wouldn't probably save them money. I'm sure it would have been cheaper to fix the sciatica 3 years ago, than the subsequent MRIs, A&E blocking, and consultants.

Apologies, a private oesteopath

I'm sorry you are in this situation.
Unfortunately the NHS has been underfunded.for years and is now on its knees.
People keep voting for this. So it will only get worse unfortunately. You only realise what's happening when you need the care.

So sorry OP that is absolutely awful. I don't have further advice beyond what's given but I just wanted to sympathise. Unfortunately my Dad died in December, we now realise he was ill from April to November but he never saw a doc for a face to face diagnosis, only phone consultations. Only 7 days after his GP told me "I have spoken to your father over the phone and there is nothing wrong with him, apart from he is a bit frail" we received a terminal cancer diagnosis as I managed to get him to hospital as he collapsed. He then caught CV19 in there, but passed away due to his original cancer. Utterly shocking, I'm not saying it would have changed what happened the the stress and trying to get help was awful. Keep going OP and keep supporting.

I had a very similar experience with back pain two years ago, so I don't think this is because of Covid. The NHS in my experience is good for life threatening emergencies. Much, much worse for long term stuff.

@FuriousWithTheNHS

We could pay for her to have her consultation speeded up privately, but I believe once you've done that you can't then jump back onto the NHS wagon for the treatment, right?

Even the injections we could pay for but paying for surgery might be beyond us. And why should we have to, for God's sake?

Well the last sentence of this is irony. Your title is frankly disgusting to me as an NHS worker who is slogging their ass off, not just because of covid but becuase my team always does. Yet you are apauled at the thought of paying for treatment? What do you think would happen without the "shitty" nhs?

PALS is the way forward, I'm not sure why your son isn't trying this option. Individually I'm sure almost all of the staff are doing this best, but that doesn't mean that mistakes don't and haven't happened and someone needs to be assigned to care co-ordinate it seems. Where is the GP in all this?

The private doc can refer for an emergency NHS surgery if necessary.

Er, no, he/she cannot. If they also work in the NHS as a consultant, they may be able to (on receipt of a letter from patient's GP, sent to consultant at his NHS hospital address) arrange to see the patient on the NHS and get them on their list (already knowing how urgent it is, they can schedule it when it can be fitted in around their other equally or even more urgent patients and thus hurry things up as much as possible). BUT it has to be done in the appropriate formal way (ie with the right paperwork/sequence of events - letter/appt/list) - they aren't allowed to just slip someone onto their NHS surgical list themselves.

If, however, they are wholly private specialists and have left the NHS completely, they can't do much except recommend patient gets GP to refer them to another consultant and undertake to provide information to that consultant if it helps (it may be a consultant they know personally).

With back problems, etc, if you are awaiting a scan on the NHS and can afford a private MRI scan, a private consultant can refer you for that, which would save time when you then get onto the NHS ladder. Some private GPs can also refer you for a scan. Some scanning places offer much lower priced scans than others - there are one or two in Central London that do reputable scans and have neuroradiologists reporting them that are trustworthy but also offer a low price range (a bit like a budget airline - depends what time of day you can go and how much of a hurry you are in). There are also cut price scanning places in the suburbs (I forget the name of the company) that do REALLY AWFUL IMAGING and don't get actual neuroradiologists to report them. A complete waste of money.

they were waiting YET AGAIN for a doctor to call back to clarify whether or not it was safe for her to take the Gabapentin.

If they have not heard back yet, tell them to call the prescribing pharmacist - their telephone number should be on the Gabepentin packet/bottle. The pharmacist has a legal obligation to check prescribed medicines, and should be able to do so a lot quicker than a GP. They will advise whether it is safe to take or not.

@Viviennemary

Only Covid matters if seems. Who cares about other illnesses. It's a disgrace.

That’s not true. Not only covid matters, but when you have patients in A&E dying before your eyes of covid you have to treat them and someone not dying in pain/cancer etc you absolutely want to treat but triaging your have to treat the actively dying one first. Staff don’t want to ignore things but it really is a battlefield situation

Op I’m sorry to read your situation. I just wanted to add an opinion that I know might be unpopular on here , but the NHS isn’t completely staffed by angels either. Like any other walk of life there are some employees who simply don’t give a stuff. I don’t doubt that underfunding etc adds to it but sometimes it’s just a case of people who shouldn’t be in the job.
When I had a relative in and out of hospital I was shocked at the way a couple of members of staff treated him.

This is today's update:

Me: Hi any more news? Did you manage to get her scan and take it wherever it needed to be?
Today at 7:23 PM
7:23 PM

XXX sent Today at 7:23 PM
We’ve found a private / nhs nuerosurgeon and got an appointment with him for a consultation on Friday. Cut the waiting list down from 2 months to two days. It’s 300 pounds. He’ll advise as to whether she needs injections or surgery. Won’t affect her place on the nhs waiting list. But it’s still a huge step forward as it’s essentially two waiting lists. One for a consultation, and another for actual treatment. As of Friday we’ll be on the waiting list for treatment so still a huge step forward.

More grounds for complaint though, in that I was once again a tennis ball between two phone numbers this morning. Given that she somehow had two Nhs numbers we need to get them merged so there are no more fuck how. So I phone the hospital that noticed the problem to get them to me the the numbers. They tell me to ring her GP and get them to do it. So I phone the GP clinic and they tell me to call NHS digital and get them to do it. So I phone NHS digital and they tell me to contact her GP clinic (again) and get them to contact something called Nation Back Office and get them to do it. So I phone the GP clinic again and they say they can’t do it, please email our request to them so it can be passed on to the clinic management. So we email the request to them and get a response basically saying that they can’t do it.

I swear to god the next person who tries to defend the NHS to me In any way, shape, or form, xxxxxxxx (redacted so no-one accuses him of being a voilent person ) NHS so they can see how useless it is.

It’s absolutely undeniable now that their tactic is to give every patient six months waiting, hoping they’ll magically get better on their own, so they they don’t have to do their fucking jobs to treat half on half of them.

It’s not even the pain that is the most pressing issue anymore, it’s her morale and mental state. Go back a month and she was already begging me to drag her out and throw her under a bus so that she’ll be seen quicker. Half her tears at this point are due to mental exhaustion as much as pain.

And as much as I appreciate it, I’ve stopped reading the mums net thread because the comments that piss me off, piss me off a lot more than the comments that help, help.

Fingers crossed we’ll get comes here with this private neurosurgeon on Friday. We better for 300 quid for a consultation!

You sent Today at 7:28 PM
Ok darling well that’s progress at least. As I said, document everything then once you’ve got the mental energy after she’s been seen, take it forward via an official complaint. I’ll get Dad to put the money in your account. Let’s hope this is the beginning of an end to her trauma. 😘

I agree with others who have said how someone else could die if you lie on a 999 call. It is a terrible thing to do. My life has been saved due to prompt ambulance responses on multiple occasions, but the whole system will break down if people lie.

A family member broke their back and went through years of pain on various waiting lists, cancelled appointments and various mix ups. I wouldn’t wish it on anyone.

My dad has had a consultation today and is booked in for an op in four months, so some NHS services are still running despite COVID.

The NHS seems to be collapsing.
GP's don't seem to be doing anything, their doors are locked you cannot get through by phone.

The mantra from the Health Secretary: "The NHS is open" and "It is better to use the NHS than suffer at home" seem to utter nonsense.

If you are seriously ill your chances or dying from lack of NHS help have never been greater.

I feel awful for her but have been there

The even sadder part is that even without Covid slipped discs don’t seem to be a priority . I waited the best part of a year to get a procedure done on my back. Constant pain ever day , up to the eyeballs in codiene . It was soul destroying .

It’s all well and good having free healthcare but if we can access it and can’t afford to go private in a country that isn’t really set up for it then it’s not much consolation when in constant agony .

Can’t access it

I swear to god the next person who tries to defend the NHS to me In any way, shape, or form, xxxxxxxx (redacted so no-one accuses him of being a voilent person wink ) NHS so they can see how useless it is.

He can go private then if he thinks the NHS is so shit. Fucking hell.

Very dehumanising for the poor girl OP. It’s “tick box” and computerisation gone mad I was thinking. “Computer says ‘no’ - says it all. Luckily £300 is not too much to take things forward, considering. I hope you get some answers and some solutions.

Start It's not too much if you've got it, or you've got parents who can help.

She's on SSP, he lost his job due to London going into Tier 4 and now full lockdown and he hadn't been there long enough to qualify for furlough. They've promised to take him back as soon as they are able to trade again but that doesn't help pay the rent.

The longer she is unable to get treatment the longer she has to stay off work and the quicker they will sink into debt.

I agree the NHS isn't great generally at chronic pain management (and I say that as an NHS nurse and someone who slipped a disc a decade ago and knows how painful it is). The problem with these types of injury is that due to poor blood flow to that area they are very slow to heal. All you can really do is get appropriate pain management in the meanwhile and try to move as much as the pain allows so you don't seize up too much whilst awaiting possible the op / pain injection. Even then I'm warning that the ops / pain injections aren't miracle cures. My advice would be try to liase with just one person rather than multiple different services which just adds to the confusion / mixed messages and potential for bad drug combinations to be prescribed. She needs to be really clear that her current pain meds aren't working, although I would caution she's already on a lot of pain meds and a lot of doctors will be reluctant to prescribe more than she's already on.

Unfortunately the NHS is in meltdown right now. There aren't the ambulances or staff to manage anything that isn't a life threatening emergency, due to massive numbers of seriously ill inpatients and the number of staff off sick / self-isolating. I know that's shit. Please tell your son / his girlfriend not to tell the ambulance service that she's not breathing though in order to get her seen quicker. That ambulance was possibly diverted from someone who really couldn't breathe.

This is what happens when successive governments cut funding to the NHS. They’ve deliberately done this to break it so that they can whip up public sentiment to privatise healthcare which will mean more fortunes made by corrupt politicians and their friends.