I never had rehab

[spideyman]

The first time in 1987 I was given physio for a few weeks but in Oct 2013 (I think) I was barely able to walk and I was on the list to go to rehab in Leeds. The authorities were waiting for the funding but they needed my bed.(I don’t know why they didn’t get a flat pack from Ikea).

Hull hospital said Scunthorpe would take over.

I was sent home

I live alone so someone was sent to fit and extra bannister up and cot sides for the bed.

Scunthorpe hospital never did anything.

My Mum got on to the physiotherapist and eventually they came but by this time I’d done most of the work myself with a Wii and a balance board. Highly recommended.

If it wasn’t for family coming by then I don’t know what would’ve happened.

I eventually had an appointment to see a doctor for the rehab place who said I was too good so I never went

[Stu_Leeds]

Getting rehab is very difficult, I got 12 weeks back in 2018 and I am pushing for more. Like you it's like they (the NHS) believe I am too good for rehab as in my case my issues are much more cognitive/ mental thank physical.

Pushing myself and trying to move forward is the reason I joined this group.

[sospan in reply to Stu_Leeds]

The NHS is brilliant when you are critically ill. However, when you are "walking wounded" you become more of a problem than a patient.

[Stu_Leeds in reply to sospan]

That would very much seem to be the case and I am very grateful for the care I received from them.

[Marnie22]

Very tough for you. Such a hard thing to deal with without the right support. I didn't get any assessment, support or rehab because they wouldn't believe that I had a brain injury, despite, (well, actually, because,) it happened in hospital. I fought for over four years and finally got referred to neurological rehabilitation last spring. I have just recently been getting access to different therapies. It's appalling how the most vulnerable get left by the wayside.

[paxo05]

Seems a common theme of being a lottery if you get rehab. I missed out on nhs rehab ( supposed to be a good rehab from what I am told). This due to not getting full diagnosis until just after 12 months after my rta. The cut off being 12 months.

Lucky for me my solicitor pushed for rehab being part of my compensation. It turned out it was basically all my compensation.

I attended a rahab center in York a hour and a half drive away. This helped with walking and talking and cognitive therapy.

I'll admit at times I hated it and wanted to give up. My wife kept pushing me and thanks to her I improved dramatically.

The advice I would give anyone is keep pushing it's worth it. It's not always easy but worth it in the end.

Pax

[Marnie22 in reply to paxo05]

Hi. I am not sure what you mean about there being a cut off? I have never had a formal diagnosis of brain injury as mine was caused by a surgeon and no one would acknowledge this. I was advised by Headway that as I hadn't had any assessment/rehab I could ask for it at any point. My brain injury was in 2016 and I had a referral to neurological rehabilitation in 2020. My GP did the referral. I had a call from a doctor with that service and he referred me on to four different services which I am now accessing.

[paxo05 in reply to Marnie22]

At the time I had my rta the local rehab centre had limited funds so implemented a 12 month cut off period from sustaining bi.

This was done under the premises of having a limited time of having an effect after a bi. The recovery is still I think classed as 3 years in which to try and recover from your injuries.

This 3 year period I have never agreed with. As maybe medically your brain may only physically be able to recover within this time frame, I feel you adapt and learn to do things differently but this still advances your recovery.

I have now asked around and now it has changed the local rehab centres have a different criteria for admissions.

Hope this clears up the cut off issue.

Pax

[Marnie22 in reply to paxo05]

That was very unfortunate and not good for you. I agree about the three year thing.

[paxo05 in reply to Marnie22]

Luckily for me I was able to use any payout to fund my rehab.

I'm glad also rehab centres are now more flexible in their approach to treatment.

[Marnie22 in reply to paxo05]

Yes, I agree. I fought a medical negligence case for three and a half years, but unfortunately it didn't work out in the end, so as I couldn't return to work, I couldn't afford to pay for any support/rehab.

[paxo05 in reply to Marnie22]

Like I say I know I was fortunate to win my case . The payout covered my medical bill ( private medical may be good but VERY expensive) . I had to finish work due to the rta also.

At the time of my recovery I was very annoyed at having to use my compensation to cover the medical care. But over the years I have realised no price can be put on my recovery.

Pax

[sospan]

So many surgeries, concussions, broken bones including a neck, severed the fingers on hand. The closest thing I had to rehab was a sheet of exercises to do at home!

[spideyman in reply to sospan]

Exercises like that are boring but using a Wii balance board is really good cos you’re having fun and you don’t realise you’re actually retraining your brain

[sospan in reply to spideyman]

It is much like the post about the benefits of canoeing. Doing something positive and engaging is the best form of rehab.

[Amber-11 in reply to spideyman]

I did not get rehab for the tbi. The best rehab I have had was for my back which got better, I even had hydrotherapy and weekly physio and acupucture with the nhs. Now in my area the physio is being run privately for the nhs, and it is much less frequent, then when run by the nhs, you get an appointment every 6 weeks now, when it was once a week in the 1990's, and 2000's, when run by the nhs at two local hospitals. I think I have more back problems beacuse of rta and tbi, I wish I did not.I asked for neck physio for migraines which was listed as available in the Neurology dept at the headache clinic, but I was not referred for it. I wish I had been given rehab straight away for the tbi, like I had for my back, which did get better, and I wish it was offered now for my tbi too.

[Chelle3069]

I never had any rehab, always been left to deal with all this on my own. I don't have any family as such all my friends disappeared because I wasn't the same person they could rely on upon anymore. The worse thing that was ever done was having this stupid brain surgery. Even now on my worse days, I can't get any help or support from no one. I would have much rather not have the surgery and taken my chances as some days I really can't cope with stuff.

[spideyman in reply to Chelle3069]

I found so called “friends” left like rats leaving a sinking ship.

I now find it hard to trust ppl but there are a few genuine ppl. The hard bit is finding them

[Chelle3069 in reply to spideyman]

Same here I trust no one anymore, including family is grouped in with the so-called friends. It's not as if I agreed to the surgery it was everyone else that decided it for me, and I'm the one that has been left with the consequences of the surgery, while they are getting on with a 'normal' life.

[123Bereft in reply to Chelle3069]

Hi, I think this every day, my partner had elective surgery on his aneurysm and he is hemiplegic with no speech and in a prolonged disorder of consciousness. He had been waiting for surgery for over 2 years and just wanted to work and drive again. I dropped off a fit and healthy man and I'm still, 8 months later, very sad. I wish we'd have taken our chances.