Would you share your experience of Rehab Units Please?

[waterfalls19]

Hi All,

I'm new here. This is my very first post in my life! Please be patient with me.

After a Road Traffic Accident and a serious head injury I was left without any support or help whatsoever from my GP and other NHS Agencies for many years. I lost my job and any quality of life.

I've read about NHS places where there is help but I can't find any information on what to expect if I manage to be referred to one.

Is there anybody who has been to one of these Rehab Units? If you have, where did you go and how was it?

I would be so grateful if you will share your experiences with me (good or bad): were you tested by a neuropsychologist, what kind of assessments did you receive ( e.g. MRI, neuropsychological tests, anything else), how long it takes to go through the assessment, how long to receive the results, what help, advice and support was given to you during and after the assessment. After discharge did you have any follow up and if yes how long for? Thank you very much in advance.

Kind regards

[cat3]

Hi Waterfalls and welcome. My rehab was confined to the rehab ward in the hospital where my aneurism was coiled and lasted approx. 3 weeks. I spent 3 weeks in ICU then 2 weeks in the recovery ward followed by a month of physio and assessments by a neuropsychologist & neuropsychiatrist.

There were cognitive assessments (various maths and general knowledge exercises) as well as assessments of personal care, preparing a meal and mobility (walking 1/2 mile with nurses following).

Three months after leaving hospital I had an MRI followed by a consultation with the surgeon, and a further MRI six months after that. Twelve months on I had an appointment with the consultant and a final MRI. I've since had yearly check ups with a consultant at the request of my GP owing to ongoing dizziness, balance problems and hormone issues. But the majority of the time it seems we're on our own.

Have you phoned the helpline for leaflets and advice ? If not, their number is 0808 800 2244 (office hours / free calls). Hope you'll have further responses ; Any other questions don't hesitate to ask...……… Cat x

[waterfalls19 in reply to cat3]

Hi cat3 thank you so much for your kind reply. I will certainly ring the helpline as you suggested.All the best.

Waterfalls

[June2018 in reply to cat3]

I no what you mean my partner had aneruism burst last September had them coiled sent home in October had mri scan beginning of January still had no results back from the hospital she is very depressed her eye sight is going dew to the burst downtown get out of bed much or go any where your right you are just left on your own when you leave the hospital

[waterfalls19 in reply to June2018]

Hi June2018,

Thank you for sharing your experience. Unfortunately I am finding out that unless I ask my GP to tell me the results of tests done he/she will NOT tell me because the hospital SHOULD BY LAW now send a copy to patient and GP with the results of the tests done.

Only some hospitals/consultants do this the majority don't bother! With head injury the memory doesn't work well and I even forget what/when/where any test has been done,

unless a member of my family reminds me about it. Then I can ask the GP for the results.

It is good to share on this forum because I'm finding out it's not happening just to me.

[June2018 in reply to waterfalls19]

We get no help off any one she just lies in bed sleeping all day the crying as stopped now.its just her coming to terms with what's gone on in her life cause she's normally a active person but now doesn't go anywhere she says she's scared to go out in case it happens again she's been told its not going happen again by her neuro surgeon

[eileenleach]

Same here for my son, no help at all, I had to sit n learn a diff person n I contacted headway asking for help 3-4 years later as I was cracking up myself thinking i was the problem, thank god headway confirmed the things I’d described were probably the effects of his front lobal head injury n I should sue nhs for not getting him rehab n not preparing me for the life I’d av to face, n to get him to a dr to ask for help but even that would be hard as most injured feel there is nothing wrong with them which is my son too, 10-11 years on I’m no nearer getting him to admit he’s having problems n until he does I can’t do anything just put up with it n hope one day he does seek help x he’s 27 now so adult n can walk can talk n would appear normal to most people but he’s far from it

[waterfalls19 in reply to eileenleach]

Hi eileenleach,

Thanks for sharing about your experience. Is your son working or a jobseeker? At his age he can ask for the help of a Work Psychologist at his local jobcentre. This is very important for his future! He needs to be assessed and helped to cope with his problems.

About him saying he is ok, I've done exactly that when I was young. Now I wish I had at that time somebody telling me: shout and fight for help, before you get worse and it is too late. All the best.

[eileenleach in reply to waterfalls19]

No he’s got epilepsy, personality changes, forgetful, anger issues, n many many more traits, but he won’t go to drs Cos he doesn’t see he has any problems, I wish I could get him to read up on his type of brain injury, in fact I wish I coujd get him to read full stop, he doesn’t av the attention span to read very much past first few lines before it gets left to side, even a conversation with him doesn’t get his concentration for very long n u can see in his expressions he’s mind is elsewhere n he’s not taking any notice, yet day 8-9 in hospital after crash he could give u ten mobile numbers n tell u who’s they were n probs still coujd yet leaves Taps on, grill on, keys in outside of door or lights on

[steve55 in reply to eileenleach]

eil

een have you or your son been told what type of brain injury he has?

i have a frontal lobe brain injury, resulting from a stroke 7 years ago. like your son i have mood swings, which caused my wife to have a melt down, reulting in me being referred to a psychiatrist, who i still see.

also like your son, i cant concentrate for too long ( i started reading a book 7years ago and each time i pick it up i start again because ive forgotten what ive read, i hate crowds and strangers and loud noises. two years ago i was diagnosed as being epileptic and two years before that, i was diagnosed with adhd by the neuro psychiatrist.

i get fatigued very easily, but thats all part of the bi so i have a short nap in the afternoon.

i hope that helps you a bit eileen, anymore questions please ask.

steve x

[Jukieh]

It must be terrie I have no quality of life neither x where do you live

[eileenleach]

It was front lobal

[Lisers]

MyHusband haf a TBI nearly 23 years ago now he was in a full Coma for over 3 months and took months to come round fully .. he was left like a baby everything had to be relearned from eating talking walking memory toileting reading writing .. 6 months later he was transfered to the Bath brain injury unit under Dr Clark at the mineral hospital .I didnt have much hope but he had intensive therepy with physio speach etc and they were brilliant .. when he was discharged a year later he was taking a few steps on a very large walking frame that he was being strapped in , doubly incontinent and still trouble making coherant conversation . But the rehab made such a difference it wad unbeleivable , all types of physio was intense and brought hope to where we had none . When he came home i was given exersises to do withhim every day he would return for appointments to the Hospital and any concerns with his eating etc the Hospital would arrange xrays etc and any further treatments or whatever was needed . All these years on he has came so far it is unbeleivable . Dont get me wrong he still has plenty of problems and has haf plenty of struggles over the years where we have nearly lost him again but rehab gave him a life to live that he is content with and managable for me . I would say for anyone in the same position they should fight for their loved one to go to rehab ( i had to go to the (health commision ) in the early days to complain and to force the hospital to give my husband a chance . best thing iv ever done

[Leeds85]

Hi,

My partner had a tbi just over 3 years ago and following surgery 2 weeks post op he was moved to a district hospital where they couldn't deal with him he didn't know why he was in hospital, kept escaping from the ward, packing his bags and didn't know who I was. After battling with the doctors we finally got him moved to a hospital with a brain rehab unit (he wasn't under any consultants other than his surgeon). The next hospital was even worse but it was secure so we knew he was safe. He spent 6 months there and literally watched dvds day in day out, he was still in post traumatic amnesia so they just left him to it. They eventually got fed up of him and wanted to move him 2 and half hours from home. We got other agencies involved to stop it and got him moved to Daniel yorath house a brain injury rehab unit in Leeds, it was the best move for him. He learned to speak, do daily tasks, socialise, make small decisions and within a 6 month stay he came home. They did cognitive tests when he arrived then the same before he left, provided support to the family and assessed him all the time. However because we lived an hour and a half away the NHS had to keep applying for funding for him they funded his stsy 3 months at a time luckily. I think had we needed him to stay longer than 6 months it would have been difficult to get further funding. Its important to check the injury unit before making a decision because the first one they wanted to send him to would not have been right for him but when the family went to Leeds everyone knew it was the correct decision