To put in a complaint against NHS

[Vanillaisboring666]

My beautiful 14 year old dd attended hospital Tuesday last week to have her ACE stoma reversed . It was a simple 20 min procedure that was class's as day case surgery. We arrived at 8am and she went down to theatre at 12pm , arrived back onward at 1pm . At 230 pm she was discharged . She was un comfortable but managed to walk to car . Upon getting in car began to cry saying she was in a bit of pain . I got her home and into bed and gave paracetomol as per hospital instruction. At 4pm she was in agony and sweating. Took her to A&E as day case unit advised on phone they would be closing at 8pm . Anyways 2 hrs in a&e she was sweating , breathing fast and writhing in agony. After 2 hrs a paed doc came and gave oromorph and placed her on paediatric ward. She stayed overnight and was given regular oromorph but she was still In agony . The sister the next morning said it was post op pain and told me to take her home amd have a duvet day and give paracetomol. By this point she could not walk and looked gravely I'll with sweat running down her face. I took her home and once again tucked her up in bed. At 4pm wednesday (day after her stoma reversal ) she was in absolute agony so I called gp and he prescribed oromorp and we gave it her overnight. Thursday mornine she was unable to lift her head and gp advised over the phone i ring an ambulance . Ambulance arrived (after 1.5hrs) and she was once again took to a&e . A gastronsurgeon came immediately and she was then rushed to theatre . I was signing consent forms running along corridor. It was terrifying. Anyways she ended up having a full blown laparotomy after the attempt at doing surgery laparoscopically failed. She has 4 laparoscopically incisions and a huge vertical cut down her tummy from laparotomy and also a cut on right side of tummy from her ace reversal surgery and initial ace surgery. She has been through hell. She was on itu for two days and is now on ward but is still critically ill as having temps and heart rate fast. The surgeon who did the ace reversal was never informed dd was readmitted by the ward and has profusely apologised as he said this should never have happened. He is going to be looking into why he was not told dd was back in hospital with pain 4 hrs after his surgery and why the bloody hell she was discharged in such a terrible state the next day when she was very obviously seriously ill. She is so so so poorly now and is still critically ill amd at risk of sepsis . She will be getting ct scan tomorrow as nothing is bringing down her temps . I am furious she was made to suffer such pain for 48 hrs and has ended up needing full blown laparotomy. If her surgeon had of been informed on the Tuesday he said he could have managed to do surgery laparoscopically. Instead he said her abdomen was so full of puss and poo he had to open her tummy from top to bottom. I am heart broken and not coping well with seeing how much pain she is in. I am strong in front of dd but have to go to toilet amd cry every now and then. We have a huge long road ahead to get her better but I am now starting to realise just how appallingly she has been treat by the ward who initially discharged her. No doctor even examined her before discharge and the sister said it was post op pain amd to have a duvet day and paracetomol ? I can tell the hospital is shitting themselves as they rolling over me and dh now . Even my dds consultant has admitted this should not have happened amd has apologised . He came to see dd twice a day Saturday Sunday despite it being his day off. I pray to god she recovers as docs say she is still critical and may need more surgery amd to go back to picu if her temps don't drop. Sorry it's so long and I hope it makes sense. I'm in bits and can't believe our wonderful nhs could have gotten something so wrong. A routine simple procedure has ended up with 8 hrs of surgery ,paed intensive care for two days,severely in pain child that is bed bound ,catheterised and has no clue just how serious this situation is. Her whole abdomen was filled with puss and poo and her bowel had ruptured . According to ward sister though it was post op pain and all she needed was paracetomol and a duvet day. My dd is so lovely and never complains so I knew something bad was wrong but the sister said she knew best and discharged her ??? AIBU in going to pals ????

Oh OP, wishing you all the best

nothing helpful to add but I just want to wish your daughter a swift recovery

Thanks for the update Vanilla, if she does have a collection, they can often insert the drain under guidance of the CT scanner so fingers crossed she'll be feeling a lot better by early afternoon.
I hope you're getting some rest where possible and managing something to eat and drink. Remember you're no good to her if you sink too, please look after yourself

A1Sharon of course the discharges are due to shortages and staffing competence! Years ago, a patient (esp paeds) wouldn't be discharged after an hour or so after recovering from a general. They would be properly observed by nurses with, if not the full range of experience, backed up and supported by a senior member of staff who could spot any anomaly.
They would have a thorough senior medical review pre release.
They would have clear instructions in the event of a problem.
The consultant performing the op was called in all such events.
The bed had the patients' arses firmly planted on them until they and the staff felt them satisfactory for discharge, not because there were 49 TCI's for the PM list to bed, or AED on red needing to clear out because ambulances are stacking outside.

The 'pathways' box ticking sheets developed by people in suits to expedite speedy discharges are not remotely robust enough, it puts pressure on junior staff who are left to it without having the experience to deviate from the pathway, and our patients at risk

Hi Vanilla - yes I had something similar to your DD after having my original op (for intussusception, which is usually in infants and misdiagnosed in me as an adult, the first case they had seen in an adult as was so rare) I had to have a further op, and then another for small bowel obstruction from adhesions.

I think the priority is her care, and she is now getting appropriate treatment and they know what is going on, so even if there are problems they at least are treating her properly, now.

We found it important to keep up with follow ups and care with the surgeons after such extensive surgery, they and GP supported with dietitian, pain management and a care plan. She will always be at risk of adhesions and obstruction and surgery is much more difficult after a laparotomy due to the amount of adhesions. But hopefully things will improve from now on.

What a scary time for you all, that never should have happened. Hope all goes well with her scan and potential op today, and do try to look after yourself too.

Nothing more to add to the advice that you've already been given but just wanted to wish your DD a speedy recovery with the best possible outcome. Remember to take care of yourself too - being in hospital at a loved one's bed side 24/7 means your diet tends to be rubbish, you don't get much/any sleep and fresh air is lacking. Try and make sure someone else can sit with your DD and give you short breaks - even if it's only 10 minutes in the hospital grounds. Sounds like your DD will have a long road to recovery so she needs you in the best of health.

It is possible for PALS to come to you on the ward to discuss your concerns. I know our PALS staff visit patients and their relatives on wards to make it easier for them to complain. Their details will be on the hospitals website or the ward clerk can contact them for you.

You just need to ask them to investigate your concerns as you want to ensure that lessons are learned from yours and your daughters horrific experience!

I do hope your daughter makes a speedy recovery

I really hope you get some good news today OP. Your poor daughter.

Yes, the NHS is strapped for cash and staff are under pressure, but that never, ever makes it permissable for someone to disregard what is staring them in the face, and putting someone's life at risk, especially someone so young. Your DD should not have had to pay this price.

Definitely complain.

I'm being gently steered to making a complaint by individuals dealing with my case. It's not personal to the staff, but it is to me, and it's down to a lack of resources and communication.

They are not taking it personally and the view seems to be that the only way things will change is if people DO complain.

So go ahead OP, when you're ready. And don't feel bad about it.

Yes, the PALs office has an area in the hospital you can go see them for a chat usually. If that helps and is easier.

Start writing all this down. Write your timeline down of what happened. When you speak too anyone write down who, time and what was said.

I'd absolutely be contacting pals. Yes the nhs has its own in house - datix but you need to make your own complaint. NHS still isnt as transparent as it could be

I know you don't want to look at legal remedies, but please don't dismiss that idea permanently. If your daughter is left with long-term consequences there are things to make her life easier that the compensation to which she is entitled would help her with.

We will have to agree to disagree on that one FeralBeryl,.

Your poor daughter, I hope she recovers well the poor soul

Absolutely contact PALS, if staff are retrained and learn from this, hopefully no other child will have to suffer in the same way

No way near as serious but I had my 32nd surgery 4 years ago which involved removing some abdominal fat. It was a long operation but done in day surgery. Afterwards they sent me home with a couple of dressings and said something about 'look out for discharge'. After three or four days I was in so much pain, hot and sweaty and feeling awful so decided I had better get to the gp first thing. Luckily, as I realised later, the wound burst open in the early hours of the morning (alien style) and loads and loads of pus and blood poured out. I was terrified but for some reason politely called 111 to ask for instructions!!!
Went to a and e was hooked up to anti b's and kept in for three days. They had rushed me out as were so busy and I had got a dreadful infection.

I complained to PALs and wasn't really very impressed with their response to be honest. It was blamed on a busy day on the ward. It's left me terrified of getting a cut or any kind of infection. I have had so many operations before and never been so scared. They should keep people in for at least 24 hours after surgery I think. When I was little I was kept in for weeks at times!! It's awful nowadays.

Really hope your lovely girl is ok. It's a terrifying time x

Thanks everyone. There is a PALS office on ground floor of the hospital. The A&E staff actually handed me a leaflet with the PALS details on just as she was being whisked off to theatre (they toon said it was a disgrace and it should never have got to this point) . I am going to write a time line of events and once my dd is more stable I will book an appt with a PALS advisor and discuss my concerns . Once again thank you for all your kind words.

Definitely complain to PALS...be prepared for not a lot to happen though. I doubt you'll get anymore than what you've already received from the staff concerned though.

Firstly, I am so sorry about your DD and I really, really hope she makes a good recovery. It must be so hard on you. Poor little love sounds really poorly and it's horrible for her and for you.

I must say, I am a little shocked at your friends pressuring you to make a complaint, now is not the time to be thinking of this. You need to be looking after yourself and her. Good friends would be bringing you clothes and food and helping with any chores or childcare. This does need a whopping, huge complaint but you need to look after yourself first so you can be strong for your DD.

I wish her well and once she has hopefully made a recovery, build your strength and escalate this as high as you can go. For now, be kind to yourself. Hope you get some sleep too.

What an utter nightmare for you and your dd, @Vanillaisboring666.

I don't think there is anything more I can say, that hasn't already been said. I think you are absolutely right to put a complaint in - this should not have happened to you and your dd, and complaining may help ensure it doesn't happen to some other poor child and their family. And I say that as an ex-nurse, who knows that medical and nursing staff are only human, and do their best amid very difficult circumstances most, if not all of the time.

I hope that your dd starts to improve soon, and that her recovery is swift and uneventful - and I am sure I am right in saying we are here to support you as long as you need it.

Can i ask, did your daughter have to have another stoma or did they manage to join the bowel up again?

UPDATE -
Scan revealed 3 more pockets of fluid in abdomen where bowel has perforated again ?? Back to surgery this afternoon and then itu till she is well enough to go back to ward . I am so so terrified. How much can none little body take ? All this puss and poo in her abdomen can't be good for her . What if she dies ? I wouldn't be able to cope with that at all.

They joined the bowel back again using appendix but it burst along the join. They're stitched it back together so she hasn't needed a stoma. God knows what's gunna happen now. I am so so frightened

I can't imagine how frightened you are. I hope your dd is oblivious and comes through this soon.

Oh my goodness, you poor things x

Vanilla I am so very very sorry

She is in absolutely the best place, the team have a clear idea of the situation from the scan, they will be doing everything humanly possible to fix this as soon as they can.

Talk to them about your concerns - your mental health matters too, they will be supportive of you.

Good luck to you and your daughter. (((Hugs)))