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

I would advise calling ambulance & advising she is threatening suicide because of the pain. They'll have to treat her.

I have recently returned to Australia. I went to the GP yesterday at a time of my choosing, with no wait for an appointment. I told them I had not been able to arrange any yearly medical checks, asthma investigation etc due to the NHS being inaccessible because of Covid. I left with a pile of referrals and today took two tests, at a time of my choosing. By this time next week, I will have my results and all tests done as they provide quite a few if you are 40+. I will also have onward referrals to a physio for an ongoing issue.

The medical centres here are clean, not crowded, have modern equipment and are client focused. (I do not have private health insurance and am using the NHS equivalent). The NHS looks a sorry mess by comparison.

I would go to the press, this is unacceptable and fucking useless Boris and Hancock need to be made accountable for the pain and suffering millions of ignored patients are experiencing.

And @FuriousWithTheNHS you DO NOT DOUBLE HER MEDICATION

She is on Opiate based drugs, taking too much could suppress her respiratory system and kill her.

Polar 'I' am not doing anything. My son has been told that he can up her medication when he enquired once, when she wasn't coping with the pain. He has since done it having already been told it's fine to do so, that one time because he knows that if they call 111 or 999 or speak to her GP the best they can expect is to be told to up her medication, after hours of waiting for a doctor to call them back. So that is what he now does. He is well aware that she shouldn't be taking too many opiates. Hence why he's doing everything he can to stop her needing the fucking things in the first place. Shame the same can't be said of the NHS.

OP, it is truly awful that your sons GF is in pain however I’m not sure what your want. Warning long post!

From your original post she has had 9 medications (that I can count) and you’ve mentioned further ones later one. She’s had several assessments by HCPs at GP, ED and with physios. She’s had emergency ambulances attend to her. She’s had a diagnostic scan done and reported (this is confusing as at one point you say the scan has diagnosed a slipped disc but then you say your son is trying to get it reported? If it’s diagnosed something it’s been reported).

I know you’re not going to like this but I think they’ve bent over backwards to be helpful to her! They arranged a scan at a different trust so she could get one sooner. You didn’t like that but you don’t want her to wait? So what would like? Somebody else who’s waited for their scan to get out of the scanner? Them to build another scanner in a day just for her which just isn’t possible for many reasons?

Did your son ever think that the ambulance wasn’t attending because it’s attending to all the people who actually aren’t conscious and breathing.

Back pain is just awful and very painful but it is not a life or limb threatening emergency (unless cauda equina which the assessments and MRI have shown it’s not).

It is also really common, in fact it’s usually, year on year, the most common cause for presentation to medical services. Unfortunately, treatments aren’t brilliant. You can usually tell when there are multiple treatments that none of them work well because if there was a good one that’s the one that would be used and it would work!

Physio and pain meds for 6-12 weeks is a recognised treatment and is where you start. You need to give the body some time and tools to heal itself.

Then there’s injections which have some success in more problematic cases. Last resort is surgery especially as many research papers recently have found that surgery (except in cauda equina) can actually prolong pain in the long run. But obviously all that can be discussed with the spinal surgeon she’ll see.

She’s had assessment and treatment you just don’t like it. Medications have side effects and don’t work the same for everybody. There isn’t a magic pill (or way in this case) that will get rid of all the pain without side effects. It doesn’t exist.

I do feel sorry for her in pain it must be awful but there isn’t a magic solution and it isn’t life threatening. Getting control of spikes of pain is really difficult so keeping the pain on an even keel is key. This can be done with a mixture of different meds so she should talk to her GP and work out what works for her. Has she tried alternative therapies as a supplement? Such as acupuncture and a TENS machine? Obviously she’ll be engaging in her physio as much as possible. As you’ve highlighted in cars and in bed staying still for a long time (despite how much it hurts) is the worst thing for back pain and getting slowly moving is key.

Sadly, although you haven’t really said (I don’t think) her age or how long this has been going on for, there’s like to be a long road ahead and it will likely recur but there are things she can do to prevent that.

You and your son are understandably worried and upset at her plight but I honestly cannot see what the nhs has done wrong.

Sickofthesoapbox I agree. Back pain is utterly debilitating and treatment is difficult. I know it's distressing for the OP and her son but I can't see that the NHS hasn't responded and treated.

OP - I had acute disc issues. We called an ambulance as the pain was unbearable & I couldn't move. I was taken to A&E & left in a cubicle all night then in the morning they said I should take paracetamol & go home (!)

I paid for a private MRI & appointment with neurosurgeon which found I had many ruptured discs & severed disc - many were pressing on my nerve. I was given gabapentin, codeine & initially oramorph. After 4-6 of rest & drugs it started to improve slightly. After 8 weeks I saw the neurosurgeon at the NHS hospital to review the need for surgery.

I hope your DIL's appointment with the neurosurgeon is as helpful as mine was & they are able to get this addressed ASAP. I know only too well how horrendous this pain can be.

"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."

Your son is an absolute dick. Irrespective of what he is struggling with while supporting his partner; I've been with my wife during life-threatening conditions, extreme pain, and experienced both acute pain and mental health conditions myself, and have just about managed to retain decency, persepctive and not threatened violence in the that "alpha-male, aren't I the big man' type way.

He may struggle with this because someone must be to blame as he's experiencing something bad, but there's a bigger picture behind all this, and just saying "the NHS is shit" is missing the point by a country mile.

• Massive underfunding during a decade when increased funding was actually needed
• Reduction in nurses over the last decade
• Staff teams that have been pissed on by successive govt
• Austerity
• Global pandemic

This is what leads to bad end results for patients, and it isn't solved by shouting "The NHS is shit", voting tory again or thereatening violence like the "big man defending his woman".

OP that is absolutely piss poor. Your poor DIL and son.

The NHS is not perfect, but most of its faults are caused by lack of funding, and administrators having to decide what to fund, and what to abandon. That's why hospitals and GP surgeries keep throwing the ball back to each other. It's cost driven, and that leads to some bad decisions. So let's campaign to support it and its poor overwhelmed staff, who are going through hell right now. And no, I don't work there, but I have had to use them and I'm very thankful for them.

OP, I'm not having a go at you, it must be bloody awful for you all.

OP I know it's not the same but I had horrendous ear pain for a long long time and then it spread to the other ear. Then I completely lost my hearing, I couldn't balance or walk properly. I saw the GP who said they would send for an immediate referral to the ENT department as both my ears were inflamed and infected, they needed proper in depth looking at. It caused me severe anxiety not being able to hear either.

I lasted about 3 days before I went private as the pain and lack of hearing was driving me mad. To this day, nearly 2 years on, I never received my letter for my ENT appointment. Imagine if I hadn't gone private, I could of been left permanently deaf. So yes, you are right, the NHS is hideously underfunded and at times, not fit for purpose.

That isn't a slight against the actual NHS workers who have never been anything but great to me but yes, the waiting times is awful. I really hope your sons girlfriend gets sorted soon and I think it's great they have gone private.

I really feel for your son and DIL. My husband has had back problems for quite a while. He had spinal compression surgery that didn't really resolve his problems but he once again function around six years ago. Three years ago his back issues became acute again and he literally could not walk, he was in so much pain. He spent two weeks bedridden in agony, it was just horrendous to witness. He has private health care insurance but we could not physically get him to the hospital because all private ambulances were contracted to NHS work. None of the meds helped at all. Eventually our GP came out to see him and arranged a hospital admission via ambulance. He then had further compression surgery. It improved things hugely but he still has pain. It's likely to reoccur. They are reluctant to offer surgery for that reason. So difficult.

She’s had several assessments by HCPs at GP, ED and with physios. She’s had emergency ambulances attend to her. She’s had a diagnostic scan done and reported (this is confusing as at one point you say the scan has diagnosed a slipped disc but then you say your son is trying to get it reported? If it’s diagnosed something it’s been reported).

I appreciate that the details are a bit disjointed and difficult to follow but all the information is there, if you'd care to read it again.

She’s had assessment and treatment you just don’t like it.

She's had an assessment and a scan. (Eventually). She was promised a referral and told she'd need injections and possibly surgery.

She has not been put on the waiting list for an appointment with the consultant. SHE HAS HAD NO TREATMENT unless you count a couple of physio appointments before her scan, which I can only liken to putting an elastoplast on a bullet wound and leaving the bullet in there.

She hasn't been able to sleep in a bed since November. She sleeps on a mattress on the floor so that she can slowly slide her bum off the edge and my son can slide a pan underneath her to urinate and defacate into. She can't sit on a loo or a chair. She can only stand for short periods of time on a good day. She needs to be drugged up to the eyeballs to the point where she's incoherent and wobbly on her feet to get her down the stairs from their flat into a taxi to her appointments. Sometimes she collapses and my son cannot get her up by himself because it hurts her too much for him to try.

You wouldn't leave an elderly woman on the floor for hours after a fall with no help so why would you leave a young woman there?

The times when my son has had to stretch the truth slightly to get an ambulance out has been because when he was honest on his first call they refused to come out and were happy to leave her on the floor.

When he's called back and stretched the truth a bit by saying she's unconscious (as opposed to delirious, rambling and semi responsive which was the actual case) they have come out and the paramedics have assured him he did the right thing and they have taken her to A&E.

If they felt it was a waste of their time they would have helped her up, maybe with gas and air, stabilised her at home with more painkillers and left her there.

Sickofthesoapbox I agree. Back pain is utterly debilitating and treatment is difficult. I know it's distressing for the OP and her son but I can't see that the NHS hasn't responded and treated.

I'll say it again SHE HAS HAD NO TREATMENT. She has been told what treatment she probably needs but she was NOT put on a consultant's waiting list to receive it. She's been waiting for weeks, in awful, awful pain that is sending her to brink of insanity for absolutely fuck all.

Your son is an absolute dick.

He really isn't. He's been far to polite for far too long and now he's furious and just venting wildly to me. He's never been violent or abusive in his life and I doubt he is likely to start now. He's also far too intelligent to know that if he were to speak to anyone in the NHS in that way it would not lead to a productive outcome for her. So he vents to me instead.

As an example of the kind of frustrations they are dealing with, her mother who lives in another country was put on her notes as her next of kin.

When her scan appointment came through they phoned her mother on a FOREIGN PHONE NUMBER and asked to speak to my son's GF. They didn't even twig that it wasn't his GF's phone number FFS.

He's also far too intelligent to know that if he were to speak to anyone in the NHS in that way it would not lead to a productive outcome for her. So he vents to me instead.

That should say far too intelligent to not know, obviously.

A complaint about the dropped referral is a good way forward, and it is reasonable to push to be bumped up to where the referral would be if it was processed correctly.

You can certainly speak to a clin neg solicitor but I doubt you'll get anywhere. Clinical neglience tends to be about life changing injuries, not poor admin practice.

You wouldn't leave an elderly woman on the floor for hours after a fall with no help so why would you leave a young woman there?

Because an old woman is at greater risk. An older woman is at higher risk of physically deteriorating and dying if left on the floor than a younger person.

I can understand your son's frustration but he needs to realise that lying about breathing can result in someone else's death or serious injury. Fabricating an immediate risk to life that isn't there means that the ambulance will attend your DIL sooner, and someone in greater need might die.

You fundamentally don't seem to grasp the current demand on the NHS currently. GPs and paramedics aren't sitting around and failing to attend to your DIL just because, they are required to make sone really shit decisions due to woefully low resources. We will have a cohort of traumatised clinicians in 2022.

You can certainly speak to a clin neg solicitor but I doubt you'll get anywhere. Clinical neglience tends to be about life changing injuries, not poor admin practice.

Yes he realises this, again he was just venting out of frustration. And what's the point of trying to sue a broke, and broken system?

I understand how covid is affecting the ability to dispatch ambulances to help people who are not at imminent risk of death.

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

Because an old woman is at greater risk. An older woman is at higher risk of physically deteriorating and dying if left on the floor than a younger person.

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.

Does your son know you are posting his private messages to you, written at times when he is worried and angry and exhausted and experiencing a sense of desperation and hopelessness, on this forum to be picked apart by a bunch of strangers? I would be really unhappy if my close family took my venting messages and shared them on a site like this.

Have they made a complaint yet OP?

You said he claimed she had breathing difficulties/ stopped breathing to get the ambulance out, which wasn’t the case at all.

The paramedics will say he was right to get an ambulance because their role is to focus on the patient they are treating, not triage.

Someone lying on the floor in pain is not at the immediate risk of dying that someone with a breathing issue is. For someone with a breathing issue, every second counts in getting an ambulance there to prevent their potential immediate death.

OP I really think you’ve missed my point.

Pain meds and physio are a form of treatment for the type of back pain she is experiencing often recommended to be followed for longer than she has done. Surgery is not a first line treatment and often not right for a lot of cases. Obviously might be right in this case that’s up to her and the surgeon to decide together. Surgery is not a silver bullet many hope for!

She has all the pain Med she can possibly have. She is not without treatment. Pain management is clearly an issue but it’s not through the lack of the NHS trying they have literally thrown ever medication at her when she’s said it’s not enough. But then you’re not happy because she’s ‘drugged up’ due to strong pain killers. What’s more important pain relief or side effects? No pain relief is without side effects. Do you want them to magic her a new spine? I don’t get what your expectations are here.

Other than a referral being bounced because of duplicate NHS numbers (not really the GPs fault) I don’t really see what’s gone awry. Oh, and the next of kin thing which they didn’t make up the mums name and number so they must have been given as a next of kin at some point! And the MRI images that just need to be requested by the consultant to be transferred. It’s all electronic. Or you can go via the GP/patient records to request a copy for herself to have if she wants to take them along to her apts. I would say none of these are actually ‘errors’.

Obviously, the pain management is a problem but she has had help. Back pain as loads of PPs have said is difficult to manage but there doesn’t seem to be a lack of trying on the NHS’ part (multiple assessments by many HCPs and 10+ meds given to try and see what works).

You seem very annoyed at the NHS and are not objectively thinking about what has been done and the limits of what can be done for this awful affliction. Any point of view that is different to yours is immediately brushed off by you.

I’m not sure if your sons GF has looked at the cycle of pain and how to better manage chronic pain. These tools may be useful for her going forwards along side the other great suggestions PPs have already given in here.

Does your son know you are posting his private messages to you, written at times when he is worried and angry and exhausted and experiencing a sense of desperation and hopelessness, on this forum to be picked apart by a bunch of strangers? I would be really unhappy if my close family took my venting messages and shared them on a site like this

Yes he does and no he's not unhappy about it, just a bit ticked off by some of the less empathetic responses.

Oh, and the next of kin thing which they didn’t make up the mums name and number so they must have been given as a next of kin at some point!

Yes of course. But why would you phone a foreign number given for next of kin to confirm an appointment with the patient who lives in the UK and has a different name to the next of kin?