There has to be a light at the end of the tunnel surely

Having worked for the NHS for a number of years up until my accident I have always been an advocate to the point that I'll be shouting at the tv whenever the NHS was slated in the news or documentaries

My local hospital which Ive had to attend numerous times frequenting various departments most notably orthopaedics with various sports injuries and accidents seriously I have been spoilt with the care I have received there over the last 12 years that I've lived in the area

The hospital that I'm under for my brain and spinal injury is well regarded and is a teaching hospital and recognised as a neurological centre yet they are so incompetent its untrue

1) as an inpatient I was wrongly advised to take off my soft collar by a head injury nurse and I got a ticking off by the staff nurse in charge when my head got stuck looking at the ceiling when I thew my head back unintentionally taking my evening meds cue x-Rays and MRIs at 1am then a hard collar this hard collar slapped on me at 3am

2) was discharged from ward after 2 weeks with the view that I was reviewed and re-X-rays 2 weeks later this didn't happen I got lost in the system my gp had to chase my neuro had to chase

3) eventually see a terrible registrar who hadn't bothered to look at my notes and having waited so long for the appointment I was discharged in July and finally had my review in October it's apallibg treatment he promptly said he wasn't sure what to do and that he would have to spreak with his seniors and the team he couldn't even read my xray properly he thought it was c4 that's dislocated its c6 and he would have known that if he'd checked my notes it's clearly documented on my discharge summary He also said that until I see the consulyant he can't authorise taking off collar it's 13 weeks I've been left like this my neck had atrophied and I feel dizzy and nauseous when the collar is off for the brief time I'm washing I'm also experiencing a lot of neurological symptoms blackouts seizures etc

3) after 3 weeks not heard from hospital regarding follow up with consulyant so gp chased guess what they've come back with


:( :( :(

11 Replies

  • Hi Emma

    Unfortunately the lack of after care appears to be frighteningly common for a lot of us. I was told the results of my 6 month scan over the telephone by a specialist nurse - wasn't even given an appointment at any point to discuss things with a consultant. My BI was in May (same as you) and I still haven't had any neuro assessments etc done.

    That is why places like Headway are so important in supporting us where the NHS fails!

    Good luck with trying to get support.

  • Thank you hedgehog

    Yes I totally agree with you regarding aftercare I experuenced 3 failed discharges with my tbi

    Unfortunately with my neck it's like a job half done I'm still in a hard collar that is meant for short term use and here I am still in it its worn I've got plastic digging into my chin and its gone slack

    They don't consider me to be safe without it but they won't face up to their mistakes


  • Sorry you are having such trouble re your neck and collar. Would it be worth contacting PALS - patient liaison, you only have to mention the word complaint and it's amazing how quickly people step up!

    Good luck

  • Hello hedgehog

    With help of a friend written letter to secretary I'm going see how that go down first it was polite but firm

    That way I figure I have somewhere to go if not success

    What I mean is that then I csn contact PALS stating that I have approached the department directly first

    Hope you catch my drift


  • Oh Emma what a catalogue of failures of care and competence. I agree NHS can be brilliant or terrible. Same hospital different departments/wards etc can vary greatly. However the general level of ignorance and neglect among medical staff around brain injuries is a major failing it seems. I can only encourage you to keep nagging, have you thought of putting in a formal complaint? Sometimes going that way is a way to get results. I was phoning Consultants PA to get appointment always got voicemail until I tried another number then got transferred internally and she picked up. I reckon she just put external calls straight to voicemail. Wasted months waiting. Tiny example of the way obstacles are put up. I was given date long wait she said no other appointments sooner. I rang again and persisted in asking and got it brought forward a month. Get your GP to try again say it is urgent? Go to A & E about blackout from collar being on too long?

    Sending cyber hug and comerisations.

  • Thank you tortie

    Receiving cyber hug

    I tried to call the secretary but typically she's on annual leave until Monday I find phone calls very stressful and because I am albeit mildly aphasic I struggle I also have slurred speech and stress makes it all worse Niro tried at least

    I was very angry too so I'm glad in a way that she wasn't there because she would have been on the receiving end of some rather foul profanities I jyst can't controll myself once the red mist descends

    However not one to give up a friend has helped me compose a firm but polite non threatening letter

    I shall start here see what happens then if that fails I will contact pals

    Was found on floor again this morning by partner he'd gone out food shopping and I had been on the floor unconscious for an unknown amount of time wedged between the bed and the wall

    I hope you are enjoying your weekend xx

  • It's an issue which rankles with me still, after almost three years................this complete lack of aftercare. The in-patient treatment (for me) was second to none which made it all the more shocking (and ridiculous) that, once discharged, I was on my own.

    Apart from periodic MRIs and results by letter, I was told my GP would be responsible from then on for my care. And as she was/still is utterly clueless about brain issues I feel I've been, along with many others, completely abandoned.

    So, yes Emma, a formal complaint seems your best option, although I would always approach your consultant's secretary first. It's pot-luck with these people but on 2 or 3 occasions I've found them very helpful and efficient in getting things moving. xx

  • My original ct scan went missing. I got discharged 12 hrs after I was admitted , without neurobex. I could not count from 30-1 I did not know the year my address .

    When I left the ward I got to the coffee shop asked the receptionist for my address . They sente back to the ward escorted as I could not remember the number. Nurse wrote my address down:

    I found a taxi.

    When I got home my wife notedy speech was wrong.

    It was 6 months before i say neuro..

    My mother in law is a doctor she was fummimg..

  • I agree that services vary from hospital to hospital. Earlier this year I was admitted to hospital by Paramedics after I pulled my back after about 3 days after pulling my back I awoke one morning feeling physically sick,and after having pathologist varices if I feel sick I panic. I told my Nephew and he promptly phoned for a ambulance.

    I must of been sedated,but from what I have been told in was admitted to hospital about 9pm on the Thursday. All I can remember is being woken to be told I was being moved to a ward,I was very confused. Apparently I had been left in a cubicle since being admitted and when I was told I was being moved to a ward it was 5pm on the Saturday.

    When it was breakfast time I was awoken, I asked why I was there but got no answer. Sister I asked a nurse when I would see a doctor she said Monday. I actually felt well by then and asked to see a doctor ASP. I was still told it would be Monday. I eventually discharged myself later that day and I was fine.

    A few days later I realised about a weeks supply of medication was missing the. Paramedics took them when I was admitted to hospital and it was not returned. I seen my GP to explain and he had no idea I had been admitted to hospital. I vowed never to go to that hospital again. I have been admitted to 3 other hospital,s in the last 2 years and they were all faultless

  • In my days of hospital admin we were expected to jump through the hoops as soon as we had a request from Pals for information relating to a complaint. For some reason it never occurred to me to go down that path myself when it took months to get appointments which were supposedly urgent etc.

    I wouldn't hesitate to contact them if one of my family was messed about and we got no joy.

  • ' experts ' eh ???

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