Hi all, so pleased to say our son is continuing to do well. We have had a further review of his Baclofen pump and dosage slightly increased again. The improvement of the spasticity in his legs is more than we dared hope for. Physios have even managed to take him down to the gym and had him sitting on a bench and used the tilt and turn table. Aim of this is to try and improve his core strength - any small gains are big gains for him. He received another round of Botox injections last week which can now be concentrated on his upper body. Apart from the catheter blip son hasn’t needed any admissions to acute hospital since trachy was inserted 1 Dec - no chest infections or seizures since he has had it - as ever can’t take anything for granted but enjoying seeing son at his most comfortable since his injury happened.
Since we are in a stable period we have been able to turn our attention to the lack of care/neglect son received in acute hospital. Some may remember due to nursing failings he developed deep pressure sore and sepsis. Trusts own internal investigation report admitted their failings on several counts. In order to try and prevent other patients/families going through the distress we have we are taking a legal case against the Trust. We maybe a small voice but failings need to be highlighted and ‘lessons not just learnt’ but effective changes in place to protect people. This will be a long drawn out process but we owe it to our son to complete the process on his behalf.
Take care Nanapal. x
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Nanapal
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I believe you are doing the right thing with legal, I remember the pressure sores and the severe ignorance when you challenged and the necessary measures you had to go to prevent. I wish I had your strength to fight relating to negligence
We have the time to focus and address this issue, we are not under all the pressures you are. You are juggling everything and am sure never seem to have enough hours in the day.
I truly hope your husband, family and yourself are doing ok. As time progresses we live our lives as best we can - some days the sadness ‘of the taken life’ can still be overwhelming which I am sure you can relate to.
Time is major issue, I'm still having to wait until everyone asleep, everyday is still military operation, but the rigid routine does support me too. Our Son turned 18 yesterday, he's in London tonight. Our 5 year old keeps us both on our toes as she's pretty hyper and in process with assessments. Husband regressed last month, hurdle I thought was easing, still waiting on consultant to arrange meeting,.I think I mentioned late 2020 on here with bullying at work. They've wanted me out since I became a carer. With everything weighing me down with husband then moving, I now feel ready to tackle works behaviour. I've had union involved since December dealing with this. Sad part is I already evidenced in December to go towards Dignity at work policy and Whistleblowing legislation, my employers have ignored/delayed responding, to point Union don't know what to say as it's just being pure nasty or incompetent.
I literally don't know what to do, 2020-2021 was shock, 2022 harassed by neighbour to having to move, 2023 dealing with work bullying/poor practice, whilst still trying to figure my husband out and manage everything and make decisions on my own. Part of me wishes when house sold, we just went and I could of had a life in someway and the kids could explore, I bottled it and stayed safe now feel stuck, as when it comes down to anything, it's just me.
You use the energy you have to get justice. We know life likes to throw grenades in that makes moving forward difficult, so I wish you energy on this and prevent poor practice and ignored health core values for future patients
So sorry to hear how difficult your life continues to be. Just dealing with a family member with a brain injury is hard enough on its own without everything else.
I hope the work situation can soon be resolved and your working environment improves.
Not many of us could cope with what you have and mainly with zero support. Take time to look after yourself and relax ( much easier said than done in your busy life) but a necessity.
Hi Nanapal, that is brilliant news about the baclofen pump, and the release it has given your son, you can tell from your update it has also given you some peace. As regards the other news you do what you have to do, I feel in this day and age with all the new inventions for pressure relief that there should be less not more, when I was nursing it was down to basic change of position and pressure areas rubbed with soap, we had very little. I think taking legal action is the only way they listen lots of luck my friend love Alice xx
Thank you Alice. Yes feel so much more settled and had more sleep in the last 6 months than since son had his brain injury.
Yes nursing care surrounding pressure care should be much improved especially with the availability of pressure relief mattresses but when the basics don’t happen ( unbelievably our son wasn’t moved for 5 days!) it is nothing less than negligence. Unfortunately I was speaking with another mother two weeks ago whose son’s cardiac arrest also resulted in hypoxic brain injury. He was treated by the same hospital and also suffered deep pressure sores & sepsis 6 months after our son. She is also bringing a legal case against the Trust so hopefully both our cases will get them listening and ensure changes are implemented.
Hi Nan, I’m sorry to say that is just to say a lack of basic nursing care, repositioning every few hours, I worked in elderly care and they could develop a pressure sore within a couple of hours, their skin is so much thinner and circulation poorer, so you make sure you keep on top of it, but the amount of residents that came back from hospital with a pressure sore. This needs to stop. My dad went into a very famous cancer hospital in Manchester, his lung cancer spread to his spine and he became paralysed he was in five days for me to sort out looking after him at home and he came home with a pressure sore on his bottom you could put your fist in, it spoilt his quality of life he had left, with help from district nurses we managed to heal it just before he died, this was 1991, wish I’d have taken some action, but wasn’t done in those days, so you take up that fight for all those who have suffered lots of love Alice xx
That is absolutely great to her that your son his making some good progress honestly hearing that has really put a smile on my face as your son and my husband had the same hypoxic brain injury roughly the same time and I'm glad that your doing something about this stuiped hospital they put you through so much stress x
Thank you, pleased you can share in our sons progress and smile. We are able to smile so much more of late after finally breaking through the months/years of stress. I am sure our son also feels this as he no longer has anxiety in his eyes and he is also sleeping so much better.
I hope you and your husband are also in a good place and he continues to improve.
I am so glad things are going well with your son. It's been a long haul.
The only way things may change is if people really speak out. It ought not be happening, but it does.
I am hoping that since you and the other person had the same experience in the same hospital, you can somehow use that to both your advantage... I wonder if there are others...
Sometimes knowing an investigative reporter would be handy.
Good luck with it all - I am so glad you are better rested - that helps a lot.
Yes it has definitely been a long journey to get to this point.
This legal action will also be another long journey anywhere between 1 and 3 years per solicitor. I am sure lots of people are put off pursuing claims against hospital trusts due to the amount of information needed etc. We found it hard going back over everything our son has endured since September 2021 - as you know there have been lots of setbacks. So I can totally understand why some people don’t feel they have the strength to take any action.
Our son and his quality of life is our main focus and we will embrace this period of improvement and keep hope for future gains for him.
That's just so good to hear Nan. Let us hope the past 7+months is the pattern from here on in and that your son is now free to make many meaningful steps forwards.
You're a gutsy lady to take up the case of his former neglect ; mums' dedication to sons is legendary ! Wishing you the best possible results ......whilst hoping you'll keep some self-care in mind throughout the lengthy procedures ahead.
Just on way up to visit son now. Hoping we might get out in garden area - all depends on weather - showers are forecast!
A case of it needs to be done so have to see it through. To be honest after what we have faced this journey is an easier one on an emotional level as can look at the process differently. 🤞we eventually get a good outcome.
All my washing's dried ! .....so I hope the weather's been as kind to you today Nan.
I get what you mean on the subject of emotions. The legal challenge will be more head than heart but we'll all be routing for you knowing the importance of the issue and what it means to you personally.
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