Phase IV rehab

[Skulls]

Having been completely overlooked for rehab over the past 3+ years, and so remaining paralysed, is there any benefit to be had in attending a Phase IV session? Could it get me mobile again?

[cat3]

Sorry Skulls I know nothing of 'phases' of rehab. Mine was inhouse during a 3 month hospital stay and once I was walking and cognizant enough to make boiled egg & toast, take a shower and walk to the nearby tram station to pay for a ticket I was allowed home. But being home with no further support apart from a 3 month review was a different matter.

The fatigue, limited mobility and short term memory issues were isolating (for someone unprepared to accept changes) and friends didn't get how I struggled whilst appearing so normal. A year on, my GP referred me back to my original consultant who arranged endocrine tests ; these showed deficiencies but the only treatment was strongly advised against for other health reasons.

It's regular practice for brain injury patients to be discharged into their GP's care and, though many GPs are clueless, they have a duty of care to refer patients with ongoing problems to an appropriate healthcare dept. What has your GP had to say Skulls ? x

[Skulls in reply to cat3]

Hi cat3,Apparently phases I to III are supposed to be carried out in hospital but I don’t think they were in my case as the therapists just got me walking, firstly with a Zimmer frame then without, and climbing stairs solo. I was assessed at home by a neuro-physiotherapist but physio stopped because it was causing me pain and there was no pain management in place by the doctor. I wish I had a consultant as I haven’t seen one since leaving St Thomas’ care. Would you believe I had to suggest my brain was scanned to see how damaged it was as they hadn’t thought to do that…. I was punished by the appointments in radiography being arranged at lunchtime so I didn’t eat! The GP doesn’t say much at all. I haven’t seen her for 10 months and contact with the surgery is nigh impossible due to stupid vetoes on email. The NHS here is in crisis. I also suffer from lupus and the next appointment to speak on a phone (very useful for a skin complaint!!!) has just been postponed for SIX MONTHS! I am sure they want us problematic patients to go away and die!

[cat3 in reply to Skulls]

I'm with you on the last points Skulls ! My GP was clueless on brain injury and, like you, I had to suggest referrals for follow up care 15 months on from my brain injury.

And the NHS was headed for crisis long before Covid hit, thanks to this government's underfunding. I remember so clearly being in my local hospital in 1997 when results of Labour's landslide came through and the whole department, doctors & staff, were hugging & cheering.

Keep prodding your GP for extra help. Meanwhile take the PIP route and look after yourself as much as possible. Do take care.. Cat x

[Pairofboots]

Hi Skulls, like cat I don't know the term, phase lV. But nothing ventured, nothing gained.......if it has a chance of improving your life, why not?

[Skulls in reply to Pairofboots]

Hi Boots,Here is an explanation. The hall where the sessions are held is not local and I would like an idea of what is involved before contacting the organiser. I am so immobile I could not do gym exercises on a mat, for example. The CCU Outreach Team at our district hospital talk a good job but don’t actually do anything…

Link: rbht.nhs.uk/our-services/cl...

[Pairofboots in reply to Skulls]

Hi, well that makes it clear as mud. I can understand when you say they talk a good job. Because of the damage that has been done to the NHS, everyone has to justify their existence, and put in 'measurable stats', the easiest is that of time. Unfortunately this doesn't equate to quality.

When I had my hiccup, there was a joined up rehab service that started in hospital, and followed through in the community. It was without limit as long as you engaged. There wasn't an unnatural cliff edge to help, even if, as I did, resisted help for the first year.

It was only when I moved areas that I came across this weird disjointed approach of time limited access, which lead me into conflict between what I knew best practice, to what was being offered.

I have had many disagreements with some of these services. I eventually disengaged.

I can understand your cynicism, but if there is a miniscule chance it will help, I'd go back to my, nothing ventured, nothing gained. Sign up for it, if it doesn't help, you can say enough, but if you don't try it, you will never know either way.

Well that is me pennies worth.

[Skulls in reply to Pairofboots]

I have now found some BHF videos that put me off entirely. You know it isn’t for you if even the videos have a health warning! It is pretty apparent that one needs to move to get any benefit so damaged nerves etc. wouldn’t be helped. The marching on the spot reminds me of Benny Hill. With my poor balance, I’d probably fall over! 😄. There is a neuro-rehab clinic at a hospital 15 miles away so, instead, I wonder if I can get a referral there. In the meantime PIP here I come!

[Pairofboots in reply to Skulls]

Good luck with getting the right referral, any improvement will be hard work, with the caveat of what the heck?

Good luck with PIP, you shouldn't need luck, but having run the gauntlet, it can be a game of chance 😉

[Symundo]

Hi Heads, can you delve into what’s up a little bit. Are you totally paralyzed unable to move or upper or lower body paralyzed ?Have you got family, friends, other half assisting. ?

Cheers

Simon😁

[Skulls in reply to Symundo]

Skulls here. I think the term is spasticity. My core muscles don’t function so I cannot sit up or walk any distance without help. I also suffer weakness in my arms and hands. My wife helps me as much as she can e.g. getting dressed. Despite my complaints, when I see the degree of disability suffered by some people, I am very grateful to the Almighty for my miraculous recovery from an immobile, blind, locked-in lump of flesh.

This has opened my eyes to the real state of our NHS.

[Symundo in reply to Skulls]

Hi Skulls, I haven’t had much luck in pushing forwards getting help. 99% of GPs won’t read your notes. So will argue with you endlessly to reduce medication that’s keeping me alive. Even the GP stating my phantom pain is all in my mind, even though I have had nothing amputated and a high amount of pain coming from my actual body parts that are still connected to me. So he thinks I’ve had em hacked of.

Here’s what I know might help. Physio got me doing the wrong exercises that my surgeon said, no, that will make your injuries worse.

PIP at court has been the most understandable by reading reports about me.

There’s a Neuro Rehab team that can help a lot by helping with directions to best suit you to improve as much as possible. There should be one locally to you can call or email.

Exercise. Now this is the hard part. I’ve got a TBI so forget, get bored, have enough or pains to much.

I know your inner core muscles don’t work. But here ways I’ve learnt to improve my health. May or may not be best for you. Just to give you an idea.

I have Velcro weights around my ankles because of muscle wastage.

Static bicycle where you can hold on or strap yourself on.

Swimming is best to train a body, but I don’t because of the plague at the mo.

If you can’t swim or likely to roll in the water, but some flippers and webbed hands, there only cheap on eBay and will keep you level. Or on your back kicking the water. That’s not much drag or gravity to bother you so never give up.

Stretching your limbs can help.

Elastic Natural Latex Tension Resistance In all different sizes and strengths can help a lot.

Fasten one end to a door, or wheel underneath the settee Soyinka can strength arms and legs.

Seeing a GP to show your problems to get referrals to a Neurologist, have an MRI & or EEG done to show how and where it all started.

Your local council can also help with adaptions to your home to make life easier.

Best of Luck

And hope I was of little use

[Marnie22]

I asked my GP to refer me to the local neurological rehabilitation service about three and a half years after my injury. I hadn't realised that I could do this until a staff member at my local Headway group mentioned it. I was never assessed for anything originally because the hospital where my brain injury happened didn't acknowledge that it had happened. I eventually saw a neurological rehabilitation consultant and got referred to a hearing therapist; a speech and language service; an occupational therapist and a physiotherapist. All of these were based in a specialist neurological rehabilitation centre. I regret to say that only one of these referrals, (the one for the hearing therapist,) turned out to be of any help at all.

I completely agree that most GPs have very limited knowledge and experience of brain injuries. I had to change GPs, (within the same practice,) to find a doctor who would even believe that I had a brain injury at all.

Best of luck. 🙂

[Symundo in reply to Marnie22]

Hi Marnie, Did you manage to get a referral to a neurologist without asking your doctor ?If you did. How do I go about doing it.

GP’s are driving me mad knowing nothing.

Cheers

[Marnie22 in reply to Symundo]

Hi. No, I was referred to a neurologist through my GP at the time, but I didn't get to see one until eight months after the injury because it took me so long to persuade him. I think he agreed to refer me in the end to shut me up! I am a very stubborn person. You could either try a different GP in your practice or Google, 'PALS,' - Patient Advice and Liaison Service for your local area. PALS will sort things out on your behalf - they support patients who are having difficulties with NHS services. I have had great results with my local PALS. When the neurologist I saw tried to fob me off by saying I had migraines, (no headaches, no aura etc.) PALS looked into it and I even got an apology from the neurologist. You could also call the Headway helpline on 0808 800 2244 for advice.

Best of luck. 🙂

[Symundo in reply to Marnie22]

Great Marnie, thanks for that. I’m having an impossible time with GP’s since mine retired a few years ago. Just impossible where ow I have a GPs that think No medication at all is best for you. Where did you learn that Boll*ocks, I said, Medication is what’s keeping me alive. Then he said my pain is phantom, but I have all my limbs so not phantom pain.. Grrrr. Oh Well. GP’s these days it’s like arguing with a teenager. Just endless and getting no where.I get NICE rules thrown back at me. But NICE Guidance is just Guidance as it’s said in the name and not a total rule book that GP’s think it is.

I’ll try PALS. I just searched it, WoW, Cool, there’s lots of places.

Connect Pain cannot help due to severity of my injuries and TBI. So will try PAL and if no where I’ll see if Headway can help. Everyone’s baffled with me. Sounds like your having trouble to.

Thanks again Marnie.

Have a great 2022.👍😋

[Marnie22 in reply to Symundo]

Hope PALS are able to help. Let us know how you get on. Best of luck. 🙂 👍

[Symundo in reply to Marnie22]

Cheers

[RogerCMerriman]

I was initially sceptical of my rehabilitation which was done as a outpatient like wise the month long assessment both where done years after my injury.

But well in my experience it’s worth giving these things a go.

Doesn’t seem to be any time limit, and the specialist bods I’ve found know there stuff, some of it can be a touch weird, or seeming with out purpose!

Can’t say I ever really enjoyed being women handled by the physios, mine where all young women, but I loved the results, in that I’m much more able to cope now. Fixed I’m not!