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