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

Want to point out that pain can be life threatening. It can trigger cardiac arrest. In addition, it can make you suicidal. I broke my spine and damaged my spinal cord with a CSF leak after I got injured. I tried to kill myself by repeatedly smashing my head on the metal of a hospital bed as they were waiting to get government authorisation for hydromorphone. I just wanted to stop the pain.

I’m so glad you can get her in a private system. It can also pay off to be persistent. She goes to A&E and refuses to leave until she is able to manage her pain consistently beyond the initial period. She may also find luck directly emailing a specialist. I hope she can work something out, I’m so sorry this is happening.

Pain management for me was a mix of OxyContin, Valium, hydromorphone, and fentanyl patches for about a month during and post surgeries. If she’s open to travelling beyond the U.K. for treatment, DM me for recommendations for excellent spinal surgeons.

My 34yo cousin died 18 months ago due to an accidental overdose he took for back pain. It could so easily have been me

That is absolutely awful and after this experience I'm sorry to say I can totally see how easily it could happen.

Want to point out that pain can be life threatening. It can trigger cardiac arrest. In addition, it can make you suicidal.

Exactly. I think both the above points demonstrate clearly how short sighted it is to consider this as 'non-urgent' just because it's technically not life threatening.

I can also suggest offering to take any cancellation appointment even at short notice. Ask about being admitted for pain management and explain not coping with pain (might need to be done via GP)
I told a&e I wanted them to cut my leg off as I couldn't cope with the pain

No sitting. Stand or lie. If lying on side then pillow between knees, or on back with pillow under knees. Try to move very very gently so she doesn't get stuck in one position

The NHS is being slowly starved to death.

Ten years ago I waited less than a year for surgery on my wrist. I was referred in Sept 2010 and had the surgery in May 2011, so eight months.

In 2014, I was referred for a shoulder problem and took over 2 years before I had the surgery.

In April 2019, I was referred for a knee problem. I finally saw a consultant early in December last year and am now on the waiting list for surgery.

It's entirely understandable that Covid takes priority over orthopaedics imo, but even pre-Covid the NHS has been getting more and more overstretched and under-resourced.

The sooner they start pumping in that £350m a week we're saving by not being in the EU the better.

Or they could close some tax loopholes and raise the money that way,

even pre-Covid the NHS has been getting more and more overstretched and under-resourced

This, my MIL died purely down to the above

So sorry about your son and his girlfriend furious really hope it gets sorted 💐

What is that MumW?
@FuriousWithTheNHS, gabapentin is actually a drug for epilepsy but it is also prescribed for nerve pain. It may or may not be appropriate in this case but you can say that you've heard it can help and see what happens. It takes a while to be come effective but it did helped me. It didn't stop the pain altogether and I still couldn't sit but it did make things more bearable.

This has obviously been an appalling cock up but first and foremost, I really hope gf can get some help soon as I can vividly remember how bad it can be.

As a doctor I would try every avenue before spinal surgery but it depends a lot on what the actual disc problem/diagnosis is and those other avenues have to be made available. I am horrified about anyone being left on the floor for days in pain.

I have to admit that I find neurosurgeons move like treacle unless it is a life threatening issue or cauda equina. I don’t think it is unreasonable to complain.

Yep, every single health care worker is useless, lazy and cares only about covid.

If only you could go to medical or nursing school and show us all how it’s done.

It needs to be funded better like the Germans do. I worry that people will use this as an excuse to change to a US style system which would be awful for a lot of people.

That is bloody awful. That poor girl. In agony all that time. They need to kick up a shit storm that's far beyond neglect.

Furiouswiththenhs :- I have 2 ruptured discs and a large build up of scar tissue. I had an operation 8 years ago to fix a previous disc prolapse. The sciatica was so bad I was on morphine and the whole process took almost a year. This time round it's been a year. I have had 2 mri scans, a nerve test, 4 phone consults and a couple of face to face appointments and I'm still not sorted. I am taking cocodamol 30 /500mg and have refused morphine. It definitely does feel like my really bad pain is not enough for things to hurry up.

[quote netsket13]@humptyrumpty is a nasty little tard. the son did what was right. The person having a heart attack most likely either has an underlying condition smoker etc. The person having an asthma attack isn't treating themselves properly and likely aren't going to die[/quote]
Odfod. I'll make sure to update the family of the 12 year old that died from an asthma attack during my shift that they clearly weren't managing their condition well enough.
Its despicable to say someone isn't breathing to get an ambulance. And yes it dies take it away from someone else in a life threatening position. (Trust me, I know)

OP. I'm sorry your dil has been in so much pain. I'm sorry the services are overwhelmed. I hope she gets the long term treatment she clearly needs. But please, please don't lie to 999.
If we lose all trust in what the callers are telling us, well we will all be truly screwed.

@sergeilavrov It most certainly can

www.dailymail.co.uk/news/article-2365464/Man-41-died-gallstones-begging-999-operator-GP-ambulance-told-bath.html

@TheGoldenApplesOfTheSun

999 is for emergencies only - you suggest "charging time wasters" yet by your account your son has multiple times lied to the ambulance service in an attempt to jump the queue! He is not helping here.

Obviously his partner's situation is horrific but she has been getting some treatment just not at the pace you want - multiple contacts with GP, seen at A&E, given painkillers and booked for a scan at the nearest available hospital. The NHS is on its knees right now with covid - cancer surgeries are being postponed in London and ambulances are barely coping - so that sounds pretty fucking good given the circumstances tbh.

I speak as someone planning a home birth who now knows full well I might not be able to do it safely as the ambulance provision simply might not be there due to the sheer number of emergencies (and I guess some people randomly calling and lying because they can't be bothered to see a GP!). That's not the NHS's fault. We're in a pandemic, and they've been underfunded for years. They're doing the best they can for all the people in the area in their care.

This ^

While the situation of course sounds horrific for her, she is getting treatment. Obviously the times aren't ideal but the NHS is under a lot of pressure just now.

You say that you know the issues are due to not enough funding then go on to wanting to sue the NHS, what do you think that will do for their funding?

You mentioned in an above reply that you shouldn't have to pay privately - that's exactly what you would have to do without the NHS, your full OP is slating them but then you're wanting to use their services? They're underfunded and overwhelmed at the moment, treatment isn't going to happen instantly, if that's what you want then it does need to be paid for privately unfortunately, as many other countries do

I'm sorry for your son's gf pain. It sound as uf it's the gp that is the issue though not dealing with the paper work, not being available for 24h.
Our gp killed my mother, the emergency treatment in icu was second to none. We had mistake after mistake, from initial appointment to gp's coming to the house and veing told what was happening but refussing to refer to hospital. 2 weeks from normal 50 year old to being dead.

If you can go private, when you are paying there is less chance of stuff being overlooked. Perhaps your son should be speaking to the gp about failures in their practice.

OP i sympathise. I had gallstones in 2002/03 due to losing weight too fast (doctors told me that is what caused it. SW)

I lost 10 stone 18 years ago.. I got gallstones and it got so bad i couldnt eat SOLID food. i went through months and months of excrutiating pain and A + E admission. In and out of A + E for TEN MONTHS. then doctors coming to my home to give me morphine injections whenever i had an attack . Finally a doctor prescribed me morphine pills which melted under the tongue that i took every time i had an attack. First attack was 3 July 2002 Scan was on 19 Dec 2002 after months of A + E admissions Christmas Day 2002 was spent in hospital. After being injected with morphine on Christmas Eve i got up the next day and my legs kept giving way and i kept collapsing. Eventually i was given morphine pills which melted under the tongue. Early Feb 2003 i got a letter telling me id have to wait for ANOTHER YEAR. I cried my eyes out and actually considered suicide. It was only after a private consultation with a surgeon and then another admission to hospital and an NHS appointment with the same surgeon that my op was promised within 6 weeks It was done 5 weeks later on 28 April 2003.id lost 8 stone by the time i had my op. The surgeon and two doctors told me it was caused by losing weight too fast. (slimming world) The pain was excrutiating and the first attack appeared after id lost nearly 4 stone. Back then i had no idea fast weight loss could cause gallstones I was losing a stone a month and whenever i did try to slow it down i either stayed the same or gained.

I actually did seriously consider suicide especially after i got the letter telling me id have to wait ANOTHER YEAR. I thought it was beyond cruel especially when id lost the weight by myself with willpower.

i believe due to mixing tramadol with as many over the counter drugs as i could in the early months to stop the pain i have been left with long term issues and its also left a bitter taste in the mouth TBH. Im grateful for the NHS but i was in so much pain i was thinking of overdosing (which i was bloody close to anyway)

I know what its like to be in excrutiating pain and your DIL has my sympathy. Cant believe some of the callous responses on here.

She needs the MRI scan ASAP
The scan will confirm how serious the slipped disc is and in that case, they will operate immediately. If it's that bad, and it sounds like it is, they literally wheel you into surgery from the scan table.

In surgery, they chip away the escaped disc matter (leaked from the torn disc) that has been pressing on the nerve and causing so much pain. The relief from pain, after waking from surgery, is instant.

Agree with a pp, that it could be the GP at fault here. The vast majority of slipped discs will heal themselves over time, but a small percent will not and will require surgery. The MRI scan determines this. But I think some GPs might have a tendency to dismiss just how serious some slipped discs can be

Good luck, because the pain of a more serious slipped is absolute fucking agony!

Mercybooth that's so sad The call handler saying to call 999 if he became unconscious!

[quote netsket13]@blueleonburger

"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."

Are you mentally stunted. He's changing the doses out of pure desperation because the fucking NHS isn't providing the urgent care needed. When you're being medically abandoned you need to take matters into your own hands.

You pure fool. Hope covid comes your way.[/quote]
Opioids easy to overdose. OP mentioned the gf looked like at one point she went drowsy and confused. Dangerous game they are playing. Could’ve asked NHS 111 gp what to do with meds in the meantime.

Nice one. Aren’t you a gem.

Hi, OP here again. I've spoken to my DS at some length since I posted and he's also reading this thread to take some of the advice given.

To clarify on the drug dosage front, she was initially prescibed 5mls of morphine but when that wasn't working he was told by one doctor to raise it to 10mls. After that he felt safe to raise it to 10 mls (with her permission obviously, but he's been administering it to her) when she needed it as he'd previously been told it was safe to do so and could not get hold of a doctor.

One time when even on 10mls she was not coping at all she was told by one doctor over the phone to raise it to 15. Then when this was relayed back to her own GP he said 'no, don't take 15, that's too much.'

She has now been prescribed Gabapentin but has not yet taken it because they are so nervous now after the scary overdose experience that they read all the small print carefully, because a) she's been told to take too high a dosage before and b) she's been prescribed something that had a bad reaction with something else.

So the Gabapentin says not to be taken with opiates, which of course she is rattling with. So at the time of talking to my son 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.

When they had an appointment the other day with what they had believed all along would be the neurosurgeon consultant they'd been waiting for it turned out to be just a physiotherapist. The physio wasn't even aware that she's already had an MRI. Due to a complete lack of communication between the GP and the various hospitals involved she had never even been put on the waiting list for a consultant's appointment let alone any treatment.

My son says he tries to advocate for her because she's either drugged up the eyeballs or her morale is now so low that she can't cope with dealing with all the admin/phone operatives who are the gatekeepers to everything basically, as they keep giving her the runaround. Some of them have been rude, dismissive and useless to the point of negligence. At one point the woman couldn't even find her on the system and got really arsey with her when she asked to please keep looking. This was after she'd already had her MRI scan so there's no way she wouldn't have been in the system. The onus is always put back onto them to sort it out themselves instead of being offered any help.

She just doesn't have the energy to be assertive and it too easily fobbed off. She gets sent around in circles, A says ring B, B says ring C, C says ring A again....you get the picture. Somewhere along the line there has been a major cock up but it's been left up to my DS and his GF to do the detective work to find out where they have fallen through the net. It's just an utter shambles.

She has bad days and REALLY BAD days, so when it transpired that she was in too much pain to get to her hospital appointment on public transport or even in a taxi my son requested transport but it was refused. They were told they needed to book it 2 weeks in advance. But you don't always know 2 weeks in advance what you are going to need on any given day. That was the time she was told to take extra morphine in order to get into the taxi but she collapsed on the doorstep and was semi-responsive. When the ambulance arrived they told my son he'd done the right thing to call them and they took her to A&E. If they hadn't thought it necessary they would have treated her at home and left her to it.

I'm sorry OP. What have PALS done to help with the lack of a key worker/care co-ordinator here?

Nothing yet, Jobshare it's not been taken further yet, they are just focusing on getting through each day and praying for the next appointment to come through soon. But my son lost his rag after finding out she hadn't even been referred when they went to what they thought was their consultant's appointment, that's when he asked me if I knew what he could do to complain.

He has even had to offer go to one hospital to pick up her MRI scan and deliver it to the other hospital in person so someone would actually look at the damn thing because for some reason they couldn't/wouldn't send it themselves.

Sorry if any HCPs are reading this and thinking some things don't add up - I am just trying to remember and interpret what he has told me. I might be getting some detail wrong.