Reading through many posts of those who’ve suffered a TBI rehab is frequently mentioned. I was offered no rehab or OT and had to self-refer to Headway. I have no fine motor skills in my left hand since brain surgery and it is much weaker than my right. Thankfully I have a wonderful partner who is so patient and supportive. When I contacted my GP about my left hand issues getting worse rather than better I was told I would need to wait until the follow-up appointment mentioned in my hospital discharge letter. I was discharged in July ‘21 but my follow-up appointment is not until October this year. I feel that I have been treated very badly, am I wrong? Also, my TBI occurred in the kitchen but caused me to blackout about 30 minutes later while I was riding my motorbike. Needless to say the uncontrolled bike ran off the road then crashed into a road sign. Some of the ligament damage sustained in the crash was not discovered at the time, as no full body scan was carried out, so I was left with torn ligaments in my right knee and right shoulder for over a year before disgnosis. I’m sure this situation did not help recovery nor the frustration of not being able to do what I could do pre-TBI. I’m interested to hear your thoughts.
Rehab: Reading through many posts of those who’ve... - Headway
Rehab
Sadly Ftt, this is an all too common issue. My 3 month follow-up was arranged before my discharge but, after developing further problems, I waited 12 months for a neuro-consultation after a referral from my GP. And of course, since the pandemic, all waiting times increased to unprecedented lengths.
I hope your October appointment will compensate for the wait and deliver some helpful treatment and support. Take care.. x
Hi, I think you have been unlucky in when you had your accident, possibly before the covid thing, treatment may have been more joined up. Some of your injuries may have been missed at the best of times, ligaments possibly wouldn't show up on scans etc, but would have been discovered in physio rehab, again much of the rehab both physical and neuro have been forced to be done at arms length. I know this is no comfort. Regardless of covid, services have been asset stripped by poor funding and penny pinching due to government policy. We can hope that services will be given the chance to recover. I hope that you can get the help you need 🍀
It was scans that showed the ligament damage but I had to push to bereferred. The knee issue was evident while I was in the hospital. One of the doctors asked if it had been looked at but nothing more was done when I said no. With the extent of the bruising on my right shoulder it should have been obvious there was an issue. The damage was diagnosed privately. I’ve heard mothing about the NHS referral from months ago.
Covid was definitely an issue in my care but I feel it is now an overused excuse.
I had also developed an allergic reaction to drugs used to treat MRSA and, despite tests, have never had a definitive answer as to the cause. I was supposed to receive a dermatology follow-up but have heard nothing. It is important to know what caused the allergy, as it threw my body into shock. If I was to be given the same drug again it could potentially kill me.
It sounds like you have quite a list. Perhaps you need to put a formal complaint in to the Trust, and lay out exactly what you expect to happen going forward. The Patient Advice and Liaison (PALs) service can help you. A pain for you, and you shouldn't have to, but it needs to be actioned. If that doesn't achieve action, escalate it to the chief executive, failure at this point, you can take it to the CQC.
I am now paralysed from the waist down and will eventually become paralysed from the neck down because of uneducated medical professionals, I have had several brain and neck MRI scans since my brain injury in 2016 and it was only last year when I lost the use of my legs that i ordered copies of my previous MRI images and reports, every scan of my neck clearly shows broken bones on my c3 vertebrae and nobody from neurologists to neuro radiologists that wrote the reports mentioned it. My spinal cord is now so damaged that no surgery is possible for me. The rest of my cervical spine is also now damaged from this. I am now taking legal action against the trust . So although some people get good treatment from the NHS, some of us don't. I feel that the system is completely broken and its not about covid or underfunding it's outdated and needs a major change
I agree the NHS needs to change, but this requires proper funding and a government that is not hell bent on dismantling it. It must not become a profit at the point of need, it must remain to be free at the point of need. We cannot allow it to go any further into another asset that the government makes a short term profit from and damn the people to have or have not care!
I think we are going to have to agree to disagree on this mate. My life has been destroyed because of uneducated medical professionals and there are many more people like me.
Without the NHS, many of us here would not be alive. It doesn't detract from what you have experienced and the catalogue of errors. I fear the day that we no longer can look to the NHS at our most difficult time. I have seen the failure of private healthcare in the UK. There isn't one person in the country that haven't benefited from a free at the point of need health service.
I can assure you that I really wish the NHS never saved my life when I had my brain injury because i now live in horrific pain 24/7 because of my cervical spine issues and I am like a zombie all day living on morphine because of them. My apologies to the person who's post i have been ranting on.
I think we can all appreciate that what you have, and what you continue to live with is wrong. I can only hope that lessons have been learnt although I fear that there will be others that failed. I wish you all the best.
Feel free to rant. The one thing in my favour is tht I am reasonably intelligent and can fght my corner. Even access to Headway was arranged by myself despite there being a poster in the surgery waiting room. The whole thing is exhausting though and the after effects of the TBi are exhausting enough.
Privatising the NHS would play right into the hands of the Tories. Yet another division between the haves and have nots.
Gosh your situation sounds hellish.I was inutially told I had fractured a disc in my neck but it was later decided it was old arthritis. The steps in the disc are very obvious on the MRI.the orthopaedic sugeon referred me back to neuro because he think sme of my pain is coming off my neck. Still I have to wait untill October. I’m pretty sure I was written off as yet another idiot motorbike rider. The orthopaedic surgeon took some convincing that the sub-dural haematma was caused by bashing my head in the kitchen rather than when the bike crashed.if that had beenthe case my helmet would have been dmaged appropriately, it wasn’t.
Thank you for your advice. Another issue yesterday, one of my reoeat prescriptions was changed without discussion. I couldn’t understand why I’d received far fewer tablets, 30 instead of 100.I did look at thepackage ut the different dosage didn’t register, after all I have suffered a TBI and have cognitive issues. Thankfully I went back to the chemist to question the lack of tablets. If Ihad continued as i was doing I would have been very unwell, as I don’t tolerate the dose I’d managed to gve myself. My oartne said he probably wouldn’t have noticed the change ether. I think I need to start compiling a list for Digby Brown!!! 🤔
yes lots of reasons why you feel badly done to by lack of testing and treatment. I'm so sorry you were in hospital and not all of your needs injuries were looked at. As others have said i would write it all in a letter and try to get the relevant referrals.
When i was admitted to hospital my neck was never scanned and that had been the source of my pain from injury. I wasnt able to communicate this and my family did their best but i had collapsed at home and no one could go to hospital with me due to covid and communication by phone was sparse, therefore it got missed and they focused on scanning my head only. In hospital i took pain relief for my neck but no medic ever spoke to me about my neck! I was quarantined due to covid and no one came close to me except for taking my obs. My neck has improved over the past 9 months but the pain remains in some situations. I raised this with the GP and i have a phone consult with a physio tomorrow. Should i be asking for something specific? With no scan i feel that i dont want anyone laying hands on me...although I think they might email me some exercises! I will have to be assessed for driving in the future and I worry my neck will restrict me.
i have physio exercises for my neck, which do help especially with managing shoulder checks. My neck pain is made worse by wearing my motorbike helmet fue to the additional weight, this has been an issue for years. Good luck getting some sort of driving assessment, my driving license has been with DVLA for over a year and I’ve only just been notified that my GP and neurosurgeon have been contacted. I have been told that until they say I’m unfit to drive I can just keep going. I am sensible about it all.
I’ve just be reading your latest post and then looked at your previous ones .. and omg it sounds so much like mine with very little help from neuro .. I only got to see neuro physio and oT 9 month’s after accident and that was because the physio i was seeing about my shoulder injuries Said something .. very nice ladies but had already been doing my own exercises and cognitive work though books imi had got myself .. I was lucky enough to realise I needed help .. speech therapy was a year after the accident and again I’d been doing lots of stuff to improve that .. singing nursery rhymes to my granddaughter was the best 
. My torn hamstring was eventually scanned 22 months after accident .. to tell my there is scare tissue explains the pain I’d had in that leg .. so like and others in here I’m gobsmacked at the lack of care and support with TBI and other injuries that you may have from the same accident .. I actually saw a Dr at the neuro rehab 26 months past accident because of the long list of unknowns I had sent to my GP .. . She has got me in to see an OT with help to get back to work .. I’ve just had my second shoulder op last week which I paid for as I wouldn’t wait anything between 1-2 years for it to be done .. already been nearly 2 and a half years since accident .. sorry this has turned into a bit of a rant but your experience and many others on here are the same as mine and it truly is appalling .. sue x
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