Long wait until neuro appointment normal?

[mikedthorpe]

I suffered my tbi via assault in york. I was taken by ambulance to hospital in york where "they couldn't help me" and I was moved to hull where I underwent surgery on arrival. My mother, next of kin, was unavailable at the time and after the use of a randomiser I was on the asdh trial. 10 days later I went home and was discharged 8 weeks later after returning for a consultation. My question is, it took over a year post surgery before I seen another neurological practitioner other than the discharge consultation. Is this normal?

I am hearing I may be the victim of an NHS trust areas issue that lead me to being discharged to my local gp rather than a hospital with the more experienced neuro departments, which is a concern given I am unwittingly participating in a trial.

Any different or similar experiences would be appreciated so I know where I stand, thank you 😊

[RogerCMerriman]

Its 4 years for me! due to various reasons starting with there being no space on the Neuro wards, so was in the Trauma wards, and so missed being seen by various services, admitly I wasn't keen at that point anyway, and though I was fine!

And I also go lost as they trasfured from one site to another, luckily I'm high functioning or quite possibly because of it, I only learnt this last Wednesday with the Nero Psych.

I think a lot depends on where you are and who you see sadly.

[moo196]

Morning,

I would ask my GP directly face to face and then back it up in writing.

I'd also never heard of things like community neuro rehab team until my sister insisted I couldn't be left like I was after my illness.

Since that day I found that I had to seek out any help required.

Good luck

[Gaia_rising]

Hello, mikedthorpe and welcome to the forum.

I'm going to guess that most of us carrying brain injuries are likely to give you similar responses. Unfortunately, most of us are likely to say "If you don't chase it, you won't get it."

(Subarachnoid haemorrhage as a result of a ruptured aneurysm 28/2/15, released into the wild 14/3/15 with no care-plan, risk assessment, or formal discharge process, I had to give my GP my discharge note to photocopy so he could issue a sick-note for work...)

My follow-up with the Consultant Neurosurgeon was cancelled three times, I was already back at work full-time by the end of May, when I eventually saw him. (I'll admit that I was quite snappy with him, I was in the angry/denial phase, and EVERYTHING hurt...)

I realised that I really wasn't coping in December 2015, and asked my GP to refer me to neuro-psychology, awful timing, with additional surgery and some 'personal circumstances' distractions. I was determined to prove I could cope, so the neuro-psych only got part of the story, my fault. He discharged me after two appointments, and the report is full of 'denies any concerns about...' statements, about the things I might rightly have been concerned about. There wasn't any after-care after the second surgery in March 2016, I was re-called for the standard 6-month scan in September, no follow-up appointment. I only know that the March surgery was successful because my GP screen printed 'good occlusion, re-call for MRI September 2018.' for me.

I'm now awaiting another appointment with neuro-psych, at my request, there's never been a formal assessment of my cognitive functioning, I was just patted on the head, and told I was 'lucky' to have survived. It's a worrying state of affairs when so many of us are wandering around with brain injuries and no real advice, and that we're the ones who have to push/chase for referrals. Brain injuries don't come with a how-to handbook, and a lot of us normalise/minimise issues, in the face of that "You survived, some people aren't that lucky!" guilt-phase.

[Nikkisue in reply to Gaia_rising]

So bad I had a Tbi Nov 16 and just starting cognitive behaviour therapy now this week tbh for me that’s not too bad as was too exhausted to cope before that not back at work full time but tbh again that’s ok for me as so so tired and still getting memory issues I know it’s early days but am determined to keep at it xx

[EffieGee in reply to Gaia_rising]

Appalling indictment of what too many have to endure when in their most vulnerable state.

[Hidden]

We had to wait 18 months - and that was with chasing. It seems there aren't anywhere near enough neuro doctors available.

[cat3]

Sorry to say Mike that this is the norm for most of us. I was allowed home two months after a Subarachnoid haemorrhage and, after a recall appointment with the surgeon three months later, I was discharged into the care of my GP.

One minute we're receiving full-on, specialist, round the clock treatment ; the next we're on our own (my GP was in 'La-la-land' where brain injury was concerned).

If you're concerned, you could ask your GP for a referral back to the neuro consultant. I asked for a referral at the 3 year point, leading to a consultation plus Mri scan, which has been repeated annually and is ongoing.

Good luck............... Cat x

[EffieGee]

Me too, a neuro appointment almost 3 weeks after the event, when he said he didn't want to see me for 3 months (Jan 2018).

I'm still waiting for a holter test (4 and 5 Dec).

No support or advice given about dealing with the after effects, ditto my GP, just drugs prescribed, that made me feel worse with blood in the urine etc.

The only formal support I've had is from the Stroke Association (wonderful people) when I self referred after finding them online. From their advice and contacts, the local OT came last week to help with bathing aids. The OT is referring me to the physio for walking aids and for balance etc.

I look OK but inside me is a different story. Overall, uncaring and inhumane treatment, more shocking as this is the first time in 70 years that I've had to depend on the 'state' and come to learn first hand of its shortfalls.

All other contacts, factual and emotional support have been made through groups like this and they've got me through this frightening isolation. So thank you!