Neurological Rehabilitation Centres

[Clgn83]

Does anyone have any experience on any excellent neurological rehabilitation centres? And any we need to avoid? Please help - very limited information out there x

[Kirk5w7]

Hi what are you looking for?

I am 6 years post illness and have been looking into the provision of functional neurology.

I see the rehab unit I spent time in post Hospital is listed as a rehabilitation centre and a brilliant one. But I feel I need more now, I have been taught to walk and have gained a good quality of life back, but it needs fine tuning now and that’s not necessarily done on the NHS.

So, I used a vision therapist a couple of years ago who worked wonders on my spatial awareness and visual problems, just last month I returned to her to ask if she knew where I could now turn. As it happens she had attended many lectures and courses on functional neurology and we have embarked on a programme that will hopefully help me.

But as you say there’s not much help out there, this is a part of brain injury rehab that is done routinely in the US but not so much over here yet.

I took a leap in the dark with the vision therapist and I was lucky, although to be honest she was the only one I found at that time in Manchester.

So, not sure I can be of much help, scour the internet I would say if I can help I will as I am sure it is the way to go.

Janet x

[Clgn83 in reply to Kirk5w7]

Hi Janet,

Thanks for your reply. We are looking for an intensive rehabilitation centre that needs to start at the very basics; walking, talking, feeding, drinking and cognitive stimulation. We are two years post hypoxic brain injury and not had a very lot at all.

There are quite a few on the internet but finding one that does what it “says on the packet” is another matter.

Heading towards London way x

[Hdo115]

Hi there

We have gone down the route of funding for this but have been denied. Our 39 son has a hypoxic brain injury and has fought to get back but where he was left to sit in a chair for hours on end in a so-called rehab ward in the local hospital for nearly a year with half and hour physio and OT Monday to Friday he has spasticity/contractures in his arms. We had to fight to get him out of hospital and they tried to put a dols in place but thankfully his social worker intervened and instead of heading toward a nursing home he was discharged home to his wife. At present he only has 2 hours of neuro physio per week and half of that we pay for ourselves and both the neuro physiotherapist strongly believe he has so much more to gain and are really shocked that his funding was turned down after so much time and effort had been spent compiling his case and after explaining how much he has improved and is likely to improve more and more with intensive rehab.

We are going to appeal but how much more time are we going to waste as this is a lengthy process. We have decided to sell our home to fund it ourselves but this is also a lengthy process and then there is the problem of which rehab facility to choose. We live in the South East so London is not too far away. So please if you find somewhere can you keep me posted

thanks

[Clgn83 in reply to Hdo115]

Hi Helen,

Thought this sounded familiar. It’s Char x

[Hdo115 in reply to Clgn83]

LOL Hi Char

Hopefully we can get some good advice about the best rehab centre x

[Kirk5w7]

This is so heartbreaking I know I was lucky, but so much more could be done to help brain injury survivors.

From whayt i have read and researched i would start with hyperbaric chambers for all, but particularly hypoxic brain injuries.

And vestibular rehab seems to be needed by all too.

They refused to accept i had visual deficits because i tested “within normal parameters” in their tests but i knew i wasnt seeing like i did before and tests done by a he neurological optometrist showed this as true.

Plus i have a degree of visual neglect, i see things but my brain forgets they are there, all these things can be lived with but it helps to know how ti live with them.

I am in Manchester and hope you can find the right place soon.

Janet x

[Hdo115 in reply to Kirk5w7]

Hi Janet

Fortunately we have a hyperbaric chamber fairly local to where we live and he has been having this since he came out of hospital and we would recommend that also. We will keep looking and trying as we know there is so much more gains to be made with the right input and rehab.

Helen x

[Kavib]

BASIC charity in Manchester have rehabilitation facilities. Otherwise call this number they will give you somewhere local to you ! Helpline 0808 808 1000

Link is below brainandspine.org.uk/