Headway are compiling a detailed report on the ‘postcode lottery’ of post-acute rehabilitation – and we need your stories to show how high quality rehab is a crucial part of rebuilding life after brain injury.
Will you tell us about your experiences – good and bad – to help us make the case for better access to post-acute neuro-rehabilitation?
My first BI was in 1985. I had a craniotomy to repair my meninges that were ripped open. Since then in 2013 I had a subdural haemorrhage, due to being pushed over and hitting my head on the pavement. Then, a couple of years ago I was passing out and had an MRI scan, which found an haemorrhage on my frontal lobe. I know I'm stubborn and I enjoy life, but I just ride the storm. Since then I have had 2 heart attacks, 2TIAs and I have not had any help at all
Maybe it is I'm stubborn, but, I only want some when I need it. Oh by the way, I'm an old codger at the age of 65. Thanks Dave.
My initial injury was in 2012 after a fall. Because of the symptoms my balance was unsteady and consequently fell down the stairs, sustaining a further head injury.
As part of medico legal claim, I saw some specialists a year after my initial injury. Whilst they undertook diagnosis they weren't able to suggest therapy until the case ended.
It took a further year for an NHS specialist (locum on a queue busting initiative) and they had no knowledge of local services.
I have never received any rehab or therapy. All the improvements I have made are down to my own and families research.
My wife also received three concussions over the last four years and has never managed to receive any acknowledgement let alone any diagnosis / treatment despite having dyslexia & dyspraxia.
We live in the Hywel Dda Health board region which does not have any capacity for HI support but relies on Abertawe Bro Morganwg for services. However, this means that the limited team in Morriston covers an area between Bridgend, Pembroke dock and Aberystwyth some 10,000 sq miles ! Unless survivors have a really significant HI there is little chance of receiving a detailed diagnosis let alone any rehab
Hywel Dda's strategy for Neurlogical services was outlined here wales.nhs.uk/sitesplus/docu...
Which outlined two link workers to work with service users, Headway and other third party schemes. However, the team never had any development budgets and the staff have now left the role.
The services offered by the local Headway branch in Carmarthenshire is also limited offering more companionship than rehab services.
I spent 8 weeks in Salford Royal for a coiling of a SAH followed by observation and physio/cognitive/occupational therapy. I was discharged with a follow-up for three months hence, then another after 12 months.
My GP referred me back to the neuro-consultant 2 years post-op. as she had no experience of brain issues, and I was tested for endocrinological and vestibular issues thought to be resulting from the bleed. But no further rehab was available so like many others here I've learned to cope with the various after-effects through trial & error and exchanging ideas from forum members here on Headway.
I'm in South Trafford (twixt Manchester & Cheshire).
Regards, Cat...
I've never had any rehab, but mine was 98' and I think less was understood then today when you've had surgery. I do think this is why I still struggle massively today. I got GP's and consultants that don't give a damn about the struggles, even changed them and still getting now where. Some days I cope others I don't, this week i'm not coping but don't know what sets it all off
I wouldn’t know, I didn’t have any....
I had mine in my late 20s, I guess I looked fine, I knew my name and date of birth, so everyone must have assumed I was fine....
I had my eta in 1999. Did not get full bi diagnosis until over a year later.
This was to late to qualify for rehab ( post 12 months cut off).
I was lucky that I was referred to private treatment payed for by compensation claim. Received mainly cbt and speech. Took over three years before discharged.
Most treatments were successful a few less so.
Had little nhs treatment other than physio. As this was 20 years ago I hope things have improved yet due to cut backs I fear they have not.
Without the money from my claim I dread the situation I would now be in.
I am not knocking the level or quality of the nhs treatment but the availability of treatment.
Pax
I think this is a good idea, thank you for asking. We live in Liverpool, my husband fractured his skull in January, had bleeding and swelling on the brain, and spent 3 months in hospital, during which time he had a shunt fitted for hydrocephalus. He was discharged in April, and had a follow up appointment 3 weeks ago. They just said, Oh, you seem fine, but I don't think he is. We had also been to see the GP who was no help at all. Was I wrong to expect support when he left hospital? I have asked for physio, or if there is a specialist gym somewhere, as his walking is not good, and he is still very weak, but there doesn't seem to be anything. I don't want to just join an ordinary gym as I feel he could make matters worse if he doesn't know what he is doing. Some guidance would be good. I did put this on the forum, and some people answered that there were places elsewhere, Salford for example, so I think you are right about it being a postcode lottery.
Came out of Kings, Went to Maidstone Hospital as nearer I had hydrocephalus when I awoke my husband told me the OT's said I'd never be the same and to put me in a home. I never had rehabilitation only from my family I can remember holding my daughters hand, my daughter doing exercises with me but in my mind she was my little girl and wanted me to hold her hand ha !! Had shunt fitted and woke up and couldn't remember, but we had a laugh talking about what I came out with and I sung a lot..poor Family xxxx Makes you wonder how many people are in a home with hydrocephalus. I must admit, been told I cried whenever they/OT's came near me !! oops! They thought me hitting a balloon would help??? When better they/Family gave me pics to look a then ask me questions on them. Thank goodness for my Family, Sisters sang and I would open one eye and say wrong words. None of this as I say I remember xxxxx But I walked into Sainsbury's the other day ..only to cafe but BIT team said I might never walk again..Remember the Human spirit xxxxx
Our story of post acute rehabilitation has been nothing but positive. My wife's tbi happened whilst in the Midlands so emergency surgery was carried out locally. Once she was transferred from Critical Care to the step down unit we met with the consultant who discussed the rehabilitation process, we had the option of local rehabilitation or transfer closer to home. We chose the rehabilitation unit closest to the hospital and she was transferred there the day after the trackeostomy was removed. The decision was made purely on reputation of the unit. She had 4 and a half months rehabilitation, learnt to walk again, talk again, regained use of her right hand side. We had at least 4 meetings with the whole therapy team during her stay. Once discharged therapy was transferred to our local nhs authority (Gloucestershire), again we received on going support and rehabilitation. We are still in the early days of recovery but I cannot fault the treatment she has received. Maybe we have just been lucky, maybe it is a postcode lottery or perhaps the awareness and treatment of tbi has progressed over the last few years, without the immediate care she received following the accident I am positive she would not be with us today. The nursing staff surgeons at the Critical Care Unit at University Hospital Coventry truly are Angels of God.
I had an accident in 2010 and I got TBI. I lived in north Wales , but I was from Northamptonshire. I had a coma and back injury and stroke symptoms. I got lots of physio and OT. I was referred to the Brain Injury Rehab Trust, where I lived and I had really good treatment. They took me out and helped me to get confident back in the community. Also I had SLT because my speech was so slurred. And I had psychology to help me deal with everything and learn new approaches.
I had very good rehab and I'm very proud of how far I have come and how I have recovered.
My fall happened abroad. Not much i remember around it but no hospital.
Back in Cheshire A&E CT scan and nothing.
Months later i couldn't stand the pain any longer and took myself to opticians.
Opticians wrote letter to GP "non responsive pupil" still nothing.
Sorry there was an MRI and still nothing.
It was only when i had a GP appointment mid "headache" with one eye closed and not able to put two words together that the ball started rolling.
Referral to speech therapy. Wonderful
When i tried to explain what was going on a referral to neuropsychology and from that both occupational therapy and neurophysiotherapy.
The physio was fantastic and i still do the exercises to maintain my balance.
When i got frustrated that my eyes weren't learning then came a referral to opthamology.
Result was that 2years after my fall I found out what was wrong.
I cant speak highly enough of the therapists I worked with but getting to them was a looooooonnnnnng road.
My Son had his brain injury in 2017 and was in hospital in Cambridge after much “wrangling and reluctance by CCG they funded him to transfer to Liverpool (his family live in the North West) from there he has made amazing steps forward the team at his rehab are amazing. However Cambridge CCG ceased to fund him in June as he was no longer considered to need health care. We accepted this, but after all the money, Care, time and love was spent nobody wanted to take further responsibility with next steps. There has been no seamless handover to Cambridge Social Services from Cambridge CCG. There has been no helpful input and sharing of care by them and Liverpool Social Services. He is still in need of help with his day to day living but nobody from Liverpool SS recognise his type of brain injury and what effect that injury has on my Son, they don’t listen to the experts who have been caring for my Son. A total failure by all SS in their duty of care. Fortunately he is still living safely in the brain injury unit, but he is also taking up a placement somebody else could use through no fault of his own. There is a place for next steps he could move into to help him for 6/12 months with his transition to living more independently but Liverpool Social Services will not support this and it’s all down to communication breakdown, lack of understanding of my Sons brain injury by them and money. And so to go back to why I started to write this post initially Rehabilitation Unit is wonderful, my Don was so very fortunate to receive their input, they work so hard are so caring and patient and then next steps after their hard work begin to fall apart which we all know can lead to catastrophic problems.
Sorry to doubt blunt , but no rehab, apart from a few sessions on fatigue and with a neuropsychologist in my partners case. 11 yrs since TBI he still struggles with fatigue, mood swings,!insight and cognitive executive functioning.
My son was attacked 2 year ago he suffered a thi and didn’t have much hope of pulling though, 2 years on he’s doing marvellous he’s in a neo care home there the best , at the minute he’s having 12 weeks rehab at Walkergate Hospital, still not sure what the outcome will be but things are looking good, I’d like to recommend deneside care home, fellgate, Jarrow for there marvellous care which without there help he wdnt be where he is now
My son was attacked July 17 with a hammer to his head, we were told he wdnt pull though the night he did and has made a remarkable recovery , at the minute he’s doing 12 weeks rehab st Walkergate Hospital Newcastle there doing a magnificent job
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