Please help Joey fight this fight

Hi! My name is Robyn and I’m Joeys wife.

We have 5 amazing children aged 6-17 and these children have been on this fight with their Dad the whole way along, giving us amazing strength, showing their Dad their love and support without showing any sadness or resentment of the things they have had to miss out on in this time.

we have a Daughter Daisy who has also been fighting since 3 months old she has a very very bad chest and has ended up in hospital on oxygen many many times, she stops breathing in the night on her bad days and Daisy herself when seriously poorly can’t walk talk or eat herself

this is her the last time she was in hospital.

Joey has been fighting leg issues since 2006 and since then has racked up a huge 33 operations on just his knees and ankles alone!

A lot of his surgeries have failed leaving him in a worse state than he was before.

BUT it was his last surgery back in November 2023 that has left him with the most damage of all…

Going in for his surgery as normal in the early morning, we sent him through the doors like we have done on all his other surgeries.

I drop the kids to school and head back home, I put the car on charge so I’m able to get to Joey when they call me to say he is ok and in recovery ready for visitors…

not 10 minutes later do I receive the worst phone call I have ever received in my life… They tell me to sit down to try not to panic and worry and then continue to say Joey went into surgery only straight away have a reaction to what they think was the anaesthetic…

he had stopped breathing his heart had stopped but they managed to resuscitate him but were not able to wake him for some reason so Joey was put into a induced coma.

little did we know this was not the worst of it and for 43 days Joey was in this coma fighting for his life!

I was not able to get to Joey straight away the silly car did not have enough charge and I knew the hospital had no charges, I rang his sister and mum straight away who lived close to the hospital so they were able to get there to him whilst I sorted the car and getting our children home!!

There were wires, cannulas and machines everywhere!!!

He was on a ventilator and 100% oxygen

They could not give us any reason/any answers to why this happened and to this day he still doesn’t know why or what caused it.

Along his Journey in the ICU they gave us many reasons why this happened including bronchia spasms, a chest infection he came in with (although his chest was cleared the day of his surgery), hypothermia… the list goes on..!

Although we are so very grateful they were able to save his life that day, the care that followed was and is still the worst I’ve ever heard of i would not wish that care on anyone it was terrible from start to finish!!

There is honestly so so so much! I will just mention a few things as we will be here a very long time if not!

They did try and wake him on a few occasions but they said he was ‘inappropriately’ waking up so put him straight back to sleep! No explanation, no chance!

I did explain that he has woken up a few times as what they call ‘ inappropriately’

in the Norwich hospital and as far as I knew they had those notes from Norwich so they could see he had before taken hours and hours to wake up instead of 20 mins! He had pulled cannulas out, accidentally gave his self a nose bleed…

BUT no matter how many times I said it no matter how many doctors heard me say this over and over no one listened!!

It turned out that they did NOT have his notes from Norwich hospital as they had once told us!!

He was left in his own poop for hours and hours on end and a few times whilst they tried to wake him up so of course he would be uncomfortable and try to wiggle away from it!! I think anyone would!

They would wake him whilst we were there and everything was going great as soon as it was time to leave an hour later they put him back to sleep…?! They have no reason on most of those occasions BUT one nurse did let it slip they are short staffed so Joey was easier asleep than he was awake!!!! Absolutely shocking!

this happened on many many occasions waking him then straight back to sleep when we left so in the end we told them we were not leaving and one of us would stay with him so they were able to keep him awake!!!

I was there one night until 4.30am but had to go back to the kids to get them all ready for school, the nurse asked where was I going and said can you not go as it’s easier if your here he won’t have to go back to a coma if i m was to stay?!? I mean really?! What choice did we have?! I called his mum right away who was thankfully there only 30 mins after I left!!

he has given a infection in his blood (sepsis) because every port and his pick line on his body had germs going into him!! Thank god his mum mentioned this to them as soon as she mentioned it only about it an hour later they took out his pick line??! What on earth would have happened had she not said anything??

BUT even after being told he had sepsis and an infection in his ports he was left 3 days over the weekend without the antibiotics he should have started on the Thursday!!

he had scans he had a brain scan and we were told he had unusual brain waves

During the brain waves scan the lady was in a huge rush so again he was left for 4 hours in his poop!! She told the nurse if he was to clean him up, Joey would not be able to have the brain wave scan as she was only in the hospital able to do this as a emergency and she had many other patients left to see at a certain time and if it was not done right now he would have to wait until next week!!

He lost a huge 5 STONE!!

he went from a healthy size to this..

Joey finally out of ICU!!

He was given the wrong food in his feeding tube!

I watched an agency nurse nearly give him his food into his cannula and his medication into his feeding tube!!!

He was nearly burnt to death by a cooling machine his temp hit 41 degrees!!

thank goodness we were there to pull it of him! Apparently it was set wrong the nurse Joey had wasn’t trained in this machine and didn’t ask for help!

the same machine also nearly froze him!! Again thank goodness I walked in, I asked for blankets but was told to wait…! I covered him with my coat a scarf and sheets and blankets from the next empty bed!

bearing in mind it’s supposed to be 24hour care!

he was left 1 nurse to 5 beds and was told if he needed suction I was to shout to the nurse on 4 beds up to come and suction him so he didn’t choke to death!

he apparently knocked his tracheotomy out…? So had to wait 7 days even though he was a ‘emergency’ he wasn’t a emergency enough and was also told it wasn’t safe for him to be back on the ventilator down his throat… but he was able to wait 7 days in that time he went downhill big time again!

sorry this isn’t in order…!

he was given medication that he was allergic to and the hospital knew he wasn’t allowed it and it was in his notes DO NOT GIVE HIM MORPHINE..!

This is Joey and our youngest Daughter Daisy having their first cuddle out of ICU❤️

he also died 3 times in their care…! Which we only found this out when we left and Joey discharged himself out of the ward due to very very poor care! Unfortunately a lot went wrong in the ward too… no staff to help him to the bathroom so he was left to wet and soil himself over and over again!!

I was told to take him to the toilet on one occasion on this walking thing what he had to support his own weight this did not go well at all he fell while I tried to move him to the toilet and he damaged his ankle, foot and toe in the process poor man he was just a heap on the floor and I felt so guilty! He had to be hoisted back to bed but again had already wet himself!!!

mess given the wrong dose of medication making him act very very funny! The list goes on…

these are only a few things that happened but the biggest problem now is the after affects…

MOST days he is or able to walk, he can’t talk, he gets confused, upset and angry, anxious, scared, worried…

we don’t have a downstairs toilet or bathroom so he has been left to carry on using a commode and i strip wash him in the downstairs sink where he sits on a perching stool!!

since November the only time he has been able to have a proper shower is when I hire out our local swimming pool!! Which because of costs has not been that many times bless him!

The money would help in so many ways it really honestly would not only would he be able to hire a proper solicitor about the lack of care the hospital gave him/did not give him but he would finally be able to get the answers he so very much does deserve!

joey has said how very confusing it is not knowing what happened in those 40+ days! He would really like to find out everything that happened BUT by looking at his hospital notes he isn’t able to do so!

As we now finally have his hospital notes but there is so much missing from the notes! Every time they tried to wake him the notes are all missing!! It really has been covered up!

Every time something went wrong in there that’s when the notes are missing…why?

It will also help to get him some sort of adaptions to the house, he needs a ramp at the front door also at the back! We have to use a commode around the house as a wheelchair as he can’t use his wheelchair in the house it’s too big!

financially it’s a strain on the family, the amount of hospital appointments he now has to have to before this happened has tripled!!

he worry’s as he now can’t work he feels guilty about the financial strain on us as a family is his fault but it really is not bless him no matter how many times we tell him!

we all love him so very much and want to see him happier and healthier and I will do everything and anything in my power to help him!!

This whole situation has had the biggest impact on not only Joey but us all as a family too! The kids have just been the most wonderful and supportive kids I could ever wish for! Nothing is to big of a job for them to do to help I’m so thankful for the children I don’t know what I would have done without them!!

His mum Lorraine was also such a huge huge support being there everyday with me I felt I wasn’t alone in feeling so sad and worried!! She also witnessed a lot of the bad experiences we had!! She was and continues to be wonderful thank you ❤️

my mum also flew back from Portugal to help with the kids which was such a huge relief and less of a worry to have to figure out!

Joeys sister Bella was a huge help with me and the kids supporting us all, all the way! She is still a massive massive supporter to us all and has been and is still amazing thank you ❤️

A huge thank you also to the whole of Joeys family who visited him very often and were a huge support, also asking if we needed anything just to ask!

So a huge thank you to those who have been there for us at that time and to those who continue to help and support us throughout Joeys recovery which is proving slower than the hospital originally thought!

please please please help Joey to continue to fight this fight and for Joey to be able to have just the basic human rights anyone should be able to have (a proper toilet and a proper wash!!)

we honestly thank you in advance for any help advice or support your able to offer!

We would hate for any other family to go through the pain and worries of being intensive care anyway but for it to be as bad as it was in intensive care and the worry of fully leaving Joey in ICU alone should not be another worry anyone should have to deal with, you leave your loved one in their care in the hope they would take just as much care of them as you could do, but for them to neglect and miss treat someone only to make things worse should not be something you need to worry about but for us it unfortunately this was the case!

PLEASE don’t be afraid to ask questions! please don’t hesitate to say you think something is wrong or you don’t agree with it!

please speak up for your loved one!

Thank you

The whole Bruce family ❤️

Just to add we have tried to approach no win no fee BUT they have all said pretty much the same thing that it’s either to complex for them or we need to hire a solicitor that specialises in missing notes and terrible NHS hospital care.

below are some other photos of before and after ❤️‍

The first time he ever sat up after he finally woke up

Joey before at a healthy weight

Joey on Christmas Day only a few days out of hospital

Our amazing family the first time we were able to all eat together again!

I never thought this day would come ❤️