You can only get so much out of the NHS because of the lack of funding for research, services and expertise. In 2021 the government announced all services for diagnosing, treating and caring for ABI patients are not fit for purpose.
So far all that's happened is that the panel who will decide the way forward had been appointed, NICE has added a hypopituitary test to the current head/ brain injury assessment and has advised that research into rehab techniques is required.
Nothing is going to change for at least 10 years.
People may not realize that the advice and rehab tips NICE are going to research already exist and there are other practical tips for preventing symptoms getting worse. All these things you access or you can do them yourself.
I've tried some of these, some of them work; here's what I found out:
Behavioral optometry reduced my visual symptoms.
Cervical/ vestibular/ ocular exercises sorted out my balance, head tension, facial paralysis and spatial awareness.
Mindfulness helped me accept and realize the reality of my BI and nature of my being.
Practical concentration meditation helped to recover my ability to pay attention, concentrate and switch between brain function networks (monitoring and executive functions).
Walking barefoot on the grass helped with psychological and physical well being.
Avoiding LED lights and limiting screen time reduced fatigue and brain drain.
Going into an educational program helped rebuild my cognitive abilities.
Fitting solar blind screens on windows and sound absorbing material on the walls reduced direct sunlight and room echoes, it all prevented sensory fatigue.
Getting rid of LED lights out of my house made the house bearable to live in.
Getting a 144hz monitor with an off screen filter reduced screen overload.
We are all different and while these helped me they may or may not help you. What have you found that helped you?
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If you do some digging, you'll see that it's used for blast traumas. I was given it by the A&E doctor. Then by my GP. My whole head feels like it's going to explode without it. Certainly does nothing for my psychiatric state, which isn't great. I take it quite low dosages.
and it's also used for migraines and labyrinthine disorders, these are also caused by vestibular issues.
Did you get any vestibular physio or manipulations because these are also treatments for blast injury. The noise can affect the inner ear, the vestibular system. The drugs may be blocking the effects rather than solving them. Obviously the test would be is the condition better after a course of medication. If it's not then the problem is still there and your psychiatric state may be the side effects of the drug.
That's just the way I think about these things - if the treatment does not fix the root cause then it's just a sticky plaster and there may be another way to do it.
Hi PV, Do you have more info on the hypopituitary test and what they look for and what they do? I may be able to ask my doc for one and I would like some literature or some idea of possible next steps before I ask.
I found someone youtube who says restoring balance happens with simple exercises- behind able to stand heel toe each way round, being able to stand one one leg (both ), then walking heel toe, then walking backwards. I am just trying it these days to see if it makes a difference. Balance is still an issue for me and vestibular exercises are way too intense.
Here's the NICE guidelines for assessing hypopituitarism after head injury, your GP should have heard of NICE, it is a UK institution but is world renowned and Canadian Health Services are similar to UK ones.
Notice it was only introduced last year 2023 so it's new.
If you look at the recent BMJ guidelines 2022, there will be an equivalent in Canada and I suspect it has the same info, you will find head injury as a cause is not listed.
That's pretty interesting because GP's don't really know anything about head/ brain injuries and they are meant to follow a course of action set out in the guidelines. when people go to see a GP you may notice they will do a quick search on their computer, they are looking at the guidelines to find out what to do.
The interesting thing is what guidelines are they looking at because if they look at the NICE guidelines they will see head injuries can cause hypopituitarism (which can cause a low mood, fatigue, memory and cognitive issues among other things). The GP should conduct a hypopituitary test.
If your GP (in the UK so probably the same in Canada) is looking at the BMJ version of the guidelines the hypopituitary test does not exist for head injuries.
I haven't looked but I'd stake my house on it that the BMJ guidelines will say the symptoms describing hypopituitarism are caused by depression or mental health conditions and they should prescribe antidepressants.
Anyway lets get back on track; show your GP the NICE guidelines from 2023.
Vestibular issues.
Those heel to toe exercises etc are standard practice and work. The head extension ones are meant to be done very slowly to start because vigorous exercises just make you feel worse. Many physios and chiro's are idiots and force you to start with vigorous exercises.
I'm now qualified, registered and insured as a provider in the UK so check out this video to get started. You may want to look at the previous one first to get an idea of why and how to build up a cervical/ vestibular/ occular rehab routine.
Remember this video is a prototype, there'll be a much better, less boring version coming at some point.
Oh while I remember the heel to toe and other exercises need to be done daily for months to retrain and hardwire the neuroplastic effects into the brain. Once or twice a week just won't do it.
Is it still down the GP’s discretion to organise a hypopituitary test, or are they required to do this if you’ve had a tbi no matter what?
My injury happen in 2007, and I was recently refused to be referred to an endocrinologist. I’m currently paying for TRT privately and have been prescribed sertraline by the GP - which I think both are helping
Nothing stopping you from asking. 2007 is a long time ago and your brain would have adapted by now in some form or other. But it may have adapted to function with lower and higher levels of hormones to try and counterbalance effects. Think it's still worth asking because if they are off this could be corrected by HRT or simple dietary changes.
You could tell your GP about or even give him the link to the NICE guidelines. They are new so most GP's won't know about them.
Let us all know what happens.
If you have been prescribed sertraline they are treating you for depression not for hypopituitarism.
Oh before I forget ask for a vitamin b12 test because quite a few people on here have reported that low b12 levels were causing fatigue/ low mood. People get b12 injections every few months and apparently it works to boost your system. write a post and ask about it, ask if anyone had other vitamin level tests etc.
I take a b12 supplement weekly, it's sublingual and over the counter here in Canada.Mine tests high but the gp days it doesnt matter.
The exact form is methylcobalamin.
Since it goes under the tongue it's better than getting injections - cheaper, no trip to the office, no scar buildup from multiple injections. (Cheaper - well maybe not for you - here we have to buy the B12 and take it in for injection and it's cheaper sublingually.)
I definitely will ask for the hypopititary test because it would explain some gut events and chest pain I had to go to the ER for and they could find no cause. I also have some other symptoms that are on the list. I can suggest it as a possible remedy for fewer ER visits and that usually gets attention.
My parathyroid levels are also very high and so far that's just been ignored, even though it causes kidney stones.
When I was injured I was told it took 6 months for a concussion to heal and was given pain killers and anti anxiety/depression medication which just made it worse. (Concussion = conversion disorder = psychiatric was what was in dinosaur gp's mind, I understand now.)
I did see two physios- 1 regular and 1 vestibular - only because I insisted for the referral.
In Canada medical service delivery is provincial rather than federal, so every province is different.
I will have to do some digging for best practise guidelines here.
The one I found for Ontario is basically a list of symptoms, info that says most concussisons go in 1 month, and here is a clinic to refer to if it doesn't. I'll have to see if the clinic is willing to share more info with me re tests.
For BC, all I could find was instructions on when to remove access to a drivers license and info that a doctor is doing a 3 year study for best outcomes although she sees this happening at the intersection of Brian Injury, Mental Health, and Substance Abuse. This is the big problem here, Mental Health and Substance Abuse get the funding and brain injury gets almost nothing. There are, it is rumored at the local bi association, a lot of people with plain bi being told they have bi polar and other mental health issues when they don't. The docs here get symptom overlap wrong.
I need to find specific tests because when I look at the system here, if I ask my new GP (it's only taken 10 years to get one) I actually do *not* want her looking at the mess that is considered 'best practice' here.
I am pretty much on my own, the most I can hope for is the new gp will agree to me self directing some testing.
Jeez the 'public health' aspect in Canada sounds grim.
Think I sent you a link for St Josephs that has a pretty decent outline of what they do but I think you said it was a very long way from you. Different province?
Yes, that's Ontario - 6 hours by jet away. And no guarantee they would have anything , anyway. It's hard to find out what standard testing they do.
And, since I'm well over a decade out from the injury, most docs seem to assume I'll stay where I am.
There is neuro rehab at the local hospital for instance, but it's only available to freshly injured people. (I couldn't tolerate being in the environment when I was eligible so I never did it.)
From what I have heard is now they have just taken FND to be a different name for convergence disorder (never the intent of FND), slap the label on , and leave people to their own devices.
morning pink .. I never stopped writing everything in my diary , taking photos of my car once I could drive again . I didn’t let my bad memory stop me trying anything , I forgot loads but carried on .i think this has helped with the constant notes including writing on here with my memory which isn’t I don’t think as bad as it was .. short term is my biggest problem still working in that .sue 😊
That's interesting. Note taking and photos are used as memory aids in what's called the compensatory approach to rehabilitation where you become reliant on the aids.
The second type of rehabilitation is called the restorative approach where rather than using aids you do repetitive memory exercises to prompt your brain to start storing memories as if from new and the brain adapts.
The compensatory approach is used by mainstream health systems because it's cheap but it does not restore your ability to store memories because you rely on the aids.
The restorative approach is used in private and independent health practices and costs lots of money but it restores your ability to remember.
These two types of rehab were described in 2002, here's some info, it's an abstract, you'll have to pay or ask someone with an academic account to access the full version
Very interesting from two different approaches .. I did the photos and diary as it was me who decided to do it as no rehab available .. my memory has improved and I don’t need to photograph my car and the road left it in if u parked in the street .. this is only in places I know as I don’t go alone to not known places .. . If I am going to somewhere that isn’t familiar to me I check maps and timetable and street maps several times before I leave .. like a couple of times weeks checking the routes until I can remember them .. alone with my medical notes that I have read what s ems like a thousand times just to know what happened to me .. ( god I sound like a hypochondriac 🤪) funding this out help me process the new me and find ways to adjust .. know I’m at the acceptance stage 🥴🤪🤔 😁 will get there in the end Sue 😁
Brilliant, preplanning, going through scenarios before doing them. I had a system of thinking it, writing it, saying it and doing it. Then return and write what I did, say what I did then do it again.
Eventually it sticks and it becomes you!
Ah now we are getting into creating automatic functions. Most of us hardly think or remember what to do at all. Our repetitive activities are hardwired and require no thought. Making a cup of tea, driving and general back and fore chit chat for instance. after a brain injury these things go awry. The big question is have we lost our memory or is it simply that our automatic functions are disrupted?
Yeah that is a good question .. 🤔I have also thought about anxiety getting worse after TBI is that the brain injury that causes the anxiety and anger or is it the fact that our lives have been ripped apart ( ; the short version ) we all know the list ) that causes the anger and anxiety not the brain damage … 🤔🤔🤔
If the brain can be re trained then even more train to have better rehab as this may cost to have the government to have the rehab but I’m sure the benefits system wouldn’t be needed so much and the cost that goes into the tribunals etc ??
I think your ability to self- organise and educate is quite something.
Like Teazymaid I keep a diary. Mine is more to keep me in line and possibly it may be helpful to somebody in the future although that's not very likely, I'm hardly a Pepys or Frank.
I have a plan in my head and despite life beating me up pretty often and severely I remain optimistic I will make it wherever I can.
Thinking about what I will do, writing it, and reading it aloud five times. That helped me a lot. I sound like I have lost my marbles, and my family often think I am talking to myself. But I forget less. Now lots of things are automatic.
I do this, because 'learning' is a skill known widely in India - children are taught to repeat something out loud five times - particularly spellings - to make the writing down of the right spelling automatic.
You remember tunes better.
Sometimes, the less bright child is asked to write something out five times, and read it aloud - in a sing song voice - in the longer run, they actually remember it right more often.
I made my son repeat it five times, as he learned how to spell longer words.
I remember the silly tune we invented to 'alpha-beta-gamma-delta-epsilon' as he learned his Greek alphabet for one year's worth of Greek - turned out to be really helpful when we went to Athens. Slowly, but successfully we found our way to the Parthenon.
Well, I found myself having reverted back into a child - so treat myself like one.
Thinking-feeling-being-doing - a selection of pictures to illustrate these
Brilliant. I did it 10 times each time and used it to reconstruct all my daily living routines like having a wash, cleaning my teeth, doing the laundry, cleaning, getting my clothes organized, making tea, cooking etc.
I found that when a few things become automatic if you add two or three of these together to integrate them multifunctioning develops.
You can use this technique to totally relearn, organize complete all your daily skills until it all becomes normal again and you don't have to think about it.
I think a common mistake people experience is that when you have learned to do things around the house you think you are recovered and that all things will work again. Unfortunately you have to do this technique for everything. So if home life improves it won't work for work because you have to relearn all that as well.
Tell me about it !! How to remember what the youtube video told you to do is still challenging. So is remembering some commercial and financial regulations. Some of them get muddled with others. Some of it I have simply handed over to others - my clients are buying these services from other sources, and finding out what incredibly good value I have been over the years. I refuse to engage with it any longer. And happier to live a narrower life.
I am re-learning how to sew: how to sew on buttons even. Some of home life and some of work life is becoming automated.
Doing this has made me re-evaluate what information I want to populate my life with. I am flatly refusing to engage with some things now, and doing more of what I know serves the inner person. That too is satisfying.
Actually writing this has made me consolidate what I want to do next. This has been a really useful thread, R. Thank you for starting it.
I got to a point where I was reprogramming auto functions but they were all kinds of things but I wanted to generate a useful set of skills that could be integrated and adapted to do anything.
That's why I decided to do a master's research degree and to make it interesting to research my recovery in real time.
To do this I had to focus on all the basic skills to do the research and course work, reading, writing, organization, communication etc. To be honest I never thought I'd get through the first year because when I started I could only pay attention and concentrate enough to read 4 pages, then I'd forget the details of what I read. It was the same for lectures, I just could not concentrate. The uni was good I did not have to go to any lectures because the lighting and noise crashed my brain. I got access to videos of the lectures so I could watch them in my own time as many time required. I attended tutorials and group meetings via zoom so I did not have to travel in and deal with lighting noise etc.
I understood my limitations, the uni were amazing, I set my own program and just committed myself to do the best I could over the first year (the course was part time but I used all my functional time to do it, I just abandoned everything else).
I just had a daily structure and just did it every day 7 days a week and it worked.
Hats off to you for doing all of that. And cudos to your university for accommodating you.
The daily structure is a good thing, isn't it. It kind of gives you a pattern, which reinforces itself every day.
Current issue is that some of my sleep problems are returning, for some reason. I have to find a way to cope with these. Started just after the last eye treatment, which incidentally is still working - visual acuity improves every time. BUT if I can't sleep, I am a lump of lard the next day.
Any tips on sleeping that works for you, or anyone else here, would be really good.
Earplugs have changed my life, actually. Wanted to add that. Carrying them everywhere now, and putting them in as a matter of routine for supermarket and coffee shop visits.
Deliberately learning new things - attending a class on zoom. That helps.
Giving a talk this coming week for an hour - now that will be challenging. But scheduled it, and doing it. I will explain that I can't recall things easily, so will be reading the talk... but it will be a boost to my self confidence. I used to stand up and speak in front of people all the time. Lost my bottle after the accident.
Re-learned how to make a padlet, step by step, because Lucy, a fellow TBI sufferer on this platform, is trying to put together an exhibition of writings and artworks. Do you know padlet? Its padlet.com - have a look. That is a good tool to remind yourself what you HAVE done before, by making an entry - and adding a picture of you doing it. You can also have audio uploads - its basically like a big empty canvas - so repetitions of your own voice learning a sequence of things can be uploaded.
School teachers use it to show off their pupils achievements..... but three or four padlets are free to each free account holder. Nice guys - the makers. I was in early.
Never heard of padlet, but I write, create artworks, take photos, make films and record audio as well. In fact did writing and flow charts and kept a journal of altered states of awareness through my BI and used it as raw data in my thesis. It's amazing when you compare it to with diagnoses and what the science says. You get a realistic picture of your progress, mistakes, misdiagnosis leading you down blind alleys etc.
I have no idea on how to improve sleep, I have hypersomnia and still sleep or go into a trancelike state 14-16 hours a day.
A masters degree wow what an achievement. Amazing 🤩
I get what you said about reading a few pages then forgetting what u’ve just read. The same thing happens with what people tell me I need to do if I have a nap it’s gone. I carry a little note book with me everywhere and have post it notes everywhere.
The think it, write it, say it, do it, write about it and say it routine described above does work if you keep it narrow and targeted on specific things or themes.
Decide what you want to improve, set a time table and do it every day for a couple of hours and keep going for 8 weeks. Try it.
Thanks, a few replies are shedding some light on how people approach recovering their functions, it's interesting, gives hope and shows there are other options.
Funny what you say about tunes. Not that exactly, but I've been struck more than once that my brain forgets how to spell things, what I've just done, and all kinds of stuff, but seemed to develop a remarkable ability to come up with song puns at a minute's notice. Not a clue why I suddenly have a song for every occasion but no idea where I've just left my phone/water/marbles... But it is the lyrics, not just the tune. Brain must process them differently somehow. Fascinating.
You are touching on the different functions between the left and right brain hemispheres. The left hemisphere deals with language and language memory and it is the only hemisphere that talks. The right hemisphere can only sing. sounds like your brain is adapting to using the right hemisphere by making up sentences in song formats.
Interesting. It's just remembering pertinent lyrics really. Remembering where I've left my cup of tea would be much more useful, though probably less annoying to other people!
You could add dance routines to float between one place and another, may be good for multifunctioning. Then when people say you are making a song and dance about everything you can say 'exactly.'
The tea making song and dance.
Keep us all informed about your singing and rhymes etc, sounds like you have made some kind of a breakthrough that could help others. Maybe you could sign up and do a research course on it, you'll be experimenting on yourself. Would be good knowledge and you'll end up an expert in the field because you will have and know the real experience not just what the science delusionally thinks it is.
This sounds really, really good, interesting and original. Wonder if you could get onto something like a performance related therapy course somewhere, performance rehab, you'd get a place no problem simply because it is working for you. That makes it real and not theoretical. The application would hinge on your experience and knowledge.
Avoiding the most disorientating supermarkets in favour of local shops or online shopping on my phone ( even though it takes me ages)
Endless lists. Keeping a diary on my phone with lots of reminders. Setting alarms to keep me on track with timing.
Talking to new people who didn't know old me. Very challenging at first -now much improved with practice - can now hold conversations, and remember things longer than the the average goldfish - have several new social tribes now, even if they're older than me. U3A and church are good.
Graded exercise on the Leddy Buffalo treadmill protocol. I dealt wth initial deconditioning with support, although have backslid considerably after Covid last year. The challenge will be build up fitness again I think.
Vestibular and oculomotor exercises made a vast difference - well worth doing.
Keeping a weekly fatigue diary - and analysing what caused most problems and how to get around them in future with my (private) neuropsychologist.
Taking first an hourly break for 10-15 minutes, and then just the two half hour brain breaks morning and evening. Can now get away without these. Though wonder if it would keep me from crashing out on the early evening?
Mindfulness ( MBSR course) gave me different strategies for meditating/ resting and also detecting the signs that I was getting fatigued early enough to deal with it by having a break.
When I'm tired, re-reading books or re-watching tv programmes is easier than new ones.
Not one you agree with PV, but low dose duloxetine (normally given for fibromyalgia pain) wiped out the anxiety I hadn't realised I was dealing with - it was a relief when it lifted, and my headaches abated.
This was interesting - wasn't actually aware how many adaptions I still actually make on a day to day basis.
Have quite a nice life now though, so worth doing I think. The interesting thing has been building up my capacity to have conversations, however trivial - though it was so very hard at first, particularly with new people - that seems to have been something that has dramatically improved with practice - whether that's from brain plasticity or just practice, I don't know.
Thanks. And probably quite an important one - identify things you can do even when tired (usually away from screens). Doing my nails works for me - it's something you have to sit still for.
The painting worked because it is something I could do even when fatigued. It's a pretty neutral activity. What I found was that I could concentrate on it for longer periods than anything else. I've had some educational training in special needs in the past, and one principle is that if you can get a child to concentrate in just one area , on anything - even if unconnected with a specific learning focus, that all areas will improve. Talked this over with a friend still in education who agreed. So I painted a lot, for the sheer pleasure of being able to focus and feel normal in one area at least. I note that my neuropsychological assessment picked up that visually I was still above normal, while other areas were below normal - which may have helped. I chose watercolour and because lockdown started, taught myself from library books. It's technically more challenging than other mediums which I really like. On the plus side you have to have drying time when working in watercolour so it builds in break times. Lessons were and are seriously hard work, but provide company and a fairly quiet environment. Painting for pleasure groups without tuition ( with the u3a) provide the gain without the pain.
rather depends on the person and the brain injury, I’ve certainly got huge amounts out of the local Headway Groups, be that the weekly meetings or occasionally social events.
In terms of hacks and tricks I use technology so my memory or lack there of isn’t so apparent!
For me the NHS has been eventually fairly successful in that the Vestibular physio was able to teach me how to cope better and understand it. Was very clear she couldn’t fix it but she could improve it.
Yes or one side of the vestibular system is damaged I think from memory it’s on the side of my head that took the brunt of the impact, The Vestibular does the majority of the work for the balance system so even no can’t use tolerate the tube for anything but the briefest of stops, and requires a huge chunk of cognitive effort.
It means I have slower than average walk, though silver lining is I don’t get travel motion sickness, though get vertigo fairly easily ie world spins and so on.
Was thinking of how the problem could not be resolved and the only options really was physical damage to part of the canals or the otolith organs.
Did a quick search for a possible implant.
Seems it may be possible, did not really read it, just skimmed, but it may be worth having a read and follow up. This is 2019 and more research may have been done by now.
The Caveat seems to be the surgery to install the implant has a high probability of damaging one’s hearing which does limit its application.
Be interesting to know how much balance is reclaimed, it appears to give some very significant impairment some improvement but not close the gap from more moderate to mild impairment to normal levels.
May I ask what the 144hz monitor with an off screen filter is please?
Ironically have a (further) occ health assessment of my DSE set up for work today and have been wondering if a more expensive monitor would help with my screen issues a little (as well as separate help with eyes) - but I am a technological dinosaur... Trying to explain that it's not exactly the brightness of the screen as such that's the issue, but not sure how to articulate it any better than that. Wondered if something with better res etc might be kinder on eyes.
Ta.
Many things that have and haven't helped for me, but learning how to push for what I need - not with the NHS, but with friends and family - learning that it's ok to cancel plans, to be firm that I need certain adaptations, and feel like I'm being difficult or letting other people down - has probably been one of the hardest, and most useful, things for me.
That's a really good point, learning to live with your symptoms and designing your life around it. I learned that very early on and it may be why I never had any real mental health issues, I got anxious and angry when dealing with the system, but other than that I immersed myself and was interested in the good aspects of BI.
The screen thing came from a thread on a US BI site (no longer running) that had mostly people from the US, Canada, Holland and Israel.
What people had realized was that those that got gaming monitors had less visual stress. what was further interesting was that the gaming industry knew about visual stress being an issue for everyone not specifically BI.
To counter the visual stress they researched increasing the refresh rate on monitors. The slower the refresh rate the more flicker comes from the screen. Oddly many fluorescent lights were banned at the same time because they had a 40hz refresh rate (it means the light flickers 40 times per second) that was causing epileptic seizures. The industry standard increased to 50hz which reduced seizures because it's meant to be outside of human perception. But the gaming industry found it may reduce seizures but it maintained a high level of visual stress and wiped people out.
This meant gaming time was reduced (less money for the gaming industry) so the industry invented monitors with higher refresh rates - 120hz and 144hz.
These reduced visual stress and people could game for longer.
A lot of people with BI said these screens were better but the was another problem, the higher the refresh rate the brighter the screen.
There's software to help reduce the screen brightness but it's not very good for BI's
To counter the brightness in a different way people put large neutral density filters over the screen instead.
I got myself a 144hz monitor and bought a neutral density filter that's used for film set lighting and put it over the screen. I noticed the improvement immediately.
It gives me 2 - 3 hours of stress-free screen time.
I've been trying to find these in off screen filter form to stick on my monitors because it would be easier but can't find one as yet.
Neutral density lens glasses would also work but I have not got around to finding them yet. (they are not sunglasses but more like professional aviation glasses).
Thought of some more...Early on a neurologist suggested I got a secondhand exercise bike/elliptical via social media and did a minimum ten minutes a day ( I got one for free that way). There's a risk of deconditioning after a MTBI which adds to your other problems.
I would add that you should exercise Below the heart rate level that you experience increased tbi symptoms and to stop altogether if you get any increased symptoms, nausea, headache etc.
My short term memory was terrible - so I used to walk to the corner shop and try and remember just one item to buy. When that worked I went for two items, and so on. In the end I remembered most of my shopping lists even if sometimes I had to go through the till twice in one visit.
I started Italian on Duolingo early on when I read that learning languages was good brain training. It's based on repetition. I now know that it probably impacted my fatigue levels adversely - so it wouldn't be my first suggestion to anyone else. The interesting thing was that when I picked up the app the other day, I could remember a lot of the Italian vocabulary. Interesting that even when things are really quite bad early on, that with repetition you can still retain information and get it into long term memory?
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Would you share your experience of Rehab Units Please?
