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Brian M A

SAH (Subarachnoid Hemorrhage) Hull and East Riding Yorkshire

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Hi all,

As you know or may have known I have for some months now, well, before the end of last year been going on about support for SAH (Subarachnoid Hemorrhage) survivors in our area... As I believe that they should have the same support as other stroke survivors ... I also believe this should happen across the whole of the UK.

Well, I am pleased to say it is also the view of the Nurse Consultant for Stroke she also believes this, for on the 28Th May 2009 at a meeting with her on my own I again mentioned SAH survivors... And was pleased to be informed that we already pick up SAH survivors, and they get the full backing of the stroke service once they have been discharged from Neuro, if that is needed... and Neuro also inform the stroke service of all SAH patients that need further input or they should do ..... SAH patients also go, and have gone through our stroke rehabilitation units if they require more rehab in their treatment programme, i.e. Physiotherapy, Speech and language or Occupational Therapy ..... They are also picked by the Community Stroke Team....... who can and do help with psychological problems....

A key point is that is they are symptom free then the stroke service don't get to know. But if they have problems physically or cognitively then the stroke service do

Now all we need to do is make sure they know about the different stroke clubs we have in our area, they should have been told this, but has it been backed up at a later date? ... as all stroke survivors forget things and misplace information at some time.... (we all do this )

This information has been read and cleared by Dinah Fuller the Nurse Consultant Stroke, Kingston upon Hull and East Riding Acute Stroke Service..... Thank you for your time Dinah

We have a good system in place here for SAH Patients/Survivors, but we must make sure that it is built on, as, are other parts of our excellent stroke service year on year!! ......

Kind regards

Brian

Copy to Dinah Fuller Nurse Consultant Stroke

Brian M Archibald

Stroke Survivor

USER/CARER representative for the Kingston upon Hull and East Riding of Yorkshire Stroke Service

User representative Stroke Working Group Hull and East Riding Stroke Service

Public representative Raising awareness World Class Commissioning NHS Hull

User representative on ESD team (Early Supportive Discharge) NHS Hull Stroke Strategy World Class Commissioning and :-

User representative on ESD team (Early Supportive Discharge) NHS East Riding of Yorkshire

User representative on TIA team (Transient Ischemic Attack)

User representative on Hyper Acute Stroke Unit Team

HAIG (Hull Access Improvement Group) member for access issues

DFG (Disability Focus Group) member for disability issues

Choices and Rights Disability Coalition Management Committee Member

01482 820570

Webmaster http://www.strokewatch.co.uk

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Hi Brian and thank you for your post.... which is most encouraging..... :)

Unfortunately, if you ask the majority of SAH survivors if they've had a stroke, then they will tell you "no" ..... it's something that I've come across on this message board, time and time again ..... I only realised that I'd had a stroke, many months after my brain haemorrhage and that's through info from the web...... When I set BTG up, I still wasn't sure whether a SAH was classified as a stroke....

I like, the majority of the population, believed that a stroke is caused by a blood clot ...... I was never made aware when I left hospital, that I'd actually had a stroke as well as the brain haemorrhage..... If I had been given that information, then it would have helped me to adapt.....as well as my family.....

I really believe, that SAH survivors often get a raw deal with aftercare post SAH and that because many of us are younger than the normal strokee, that we are pretty much left to get on with things after being "fixed" with surgery (if caused by an aneurysm or AVM) ...... irrespective of how we've been left physically or mentally.....

Thanks for your work Brian, in raising awareness..... :) xx

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Hi Karen,

Like you I have been aware that people with have an SAH do in most areas get a raw deal, and I have spent many months in our area trying to improve that as I think it is your right to have good after care and community support for life .... Your right it is not clear that it is a stroke but it IS JUST THAT and should be recorded as such on all stroke registers...

We need to do more and that is my aim now up here, and believe me I will push this...

Thank you for your kind comments Karen...

Take care, love Brian

Brian M A xxxx

Stroke Survivor

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hi brian

im glad you are getting things organised up your way i just wish it was countrywide

karen i know many people who have had sah but denied having a stroke this is very misleading the correct term is suffering stroke because of the damage caused by sah the sah being the cause leading onto a stroke the term stroke is an old one because people who suffer strokes get the warning of FAST from the nhs it is caused by a clot in a closed and sealed blood vessel which stope the flow of blood to an area of the brain whereas someone who has suffered an sah which is a traumatic brain injury and because the blood vessel has split causing lack of oxygen to an area of the brain and also the vaso spasm which could shut off blood supply to the brain and the irritation to the brain leading to a traumatic stroke stroke is a general term i believe that i believe its why its called the silent killer i hope you dont mind me adding to brians entry

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Paul, that's a very good explanation and thank you for posting..... :)

Brian, I wish you well with your endeavours, which I'm sure will be greatly appreciated in your local area...

Karen xx

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thank you karen

further to what i have said is the fact that the normal stroke is what is normally treated by hospitals and the recovery would be par for the course because they can now be thromberlized to treat and disolve the clot which you cant do with a sah

but a sah type stroke does implicate other factors which hospitals do not regonize the symptons that appear ie tireness head pain the senses that most if not all survivors suffer all varying which is what hospitals and drs do not or are not aware of what patients go through ie your immune system collapse's therefore prone to more complications which hospitals and drs need to take on board as many survivors dont get any or very little after care because they dont come under the stroke heading

maybe brian you could float this amongest your people who you are in contact with because sah suffer's need help and not be passed off as if they dont exsist sorry but this subject is close to my heart and it hurts not seeing people get what they need to help in thier recovery because they dont come under the right heading

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HI Paul,

I agree with all you say on SAH and the way you are left in the dark after your discharge, with no after care or treatment from what I can see across most of the UK. This has to stop and the quicker the better as it is a disgrace. And yes Paul I will push SAH all I can in my area everytime I get the chance

We all know what strokes are and how they affect us, family and friends for life; Ischemic strokes occur when a blood vessel gets so narrow or clogged that not enough blood can get through to keep the brain cells alive. Hemorrhagic strokes occur when the wall of a blood vessel becomes weak and blood leaks out into the brain. Cerebral hemorrhage A cerebral hemorrhage occurs when a blood vessel in the brain ruptures and bleeds into the surrounding brain tissue Subarachnoid hemorrhage in a subarachnoid hemorrhage; blood accumulates in the space beneath the arachnoid membrane that lines the brain. We all need good after care and treatment which is life long and seamless, whatever stroke we have had, SAH should be treated no differently to other strokes, but for some reason it is! WHY is the question that has to be answered? The above are all strokes so why are they not recorded as such by the Hospitals that we are admitted too.

I believe the problem if you have an SAH is you are treated in the Neurological Wards by Neuro Surgeons as you have to be!, but it is not recorded as a Stroke. Where the others are treated on Acute Stroke Wards by Stroke Consultants and are recorded as a Stroke, and all the after care then kicks in then and there or when you leave hospital or the rehab wards etc. But SAH is forgotten and survivors are mainly left to fend for themselves when they are discharged! In my opinion all should be recorded as Strokes no matter what ward you are treated on, then the after care, rehab and community stroke teams would be seeing all, and the service would then be life long and seamless, as it should be.

A lot has been said recently by the BBC and other stroke organisation about the FAST test to identify strokes TIA and THROBOLYSIS treatment.

FAST is not new it was first used in the USA in the 90s, we have just caught on to its usefulness. Also they are pushing TIA and how that should be treated and not before time either. We have known how to treat TIA’s since the late 50s early 60s and that High Risk TIA should be treated within 24 hours and we have the tools to measure TIA ABCD2 system and if treated in time strokes can be prevented. TIA if you have one, all function should come back within 24 hours if not sooner, if you do not get everything back in that time scale you have had A STROKE to some degree THAT IS A FACT.

Thrombolysis is not new either it has been around from the 90s BUT NOT EVERYONE IS ABLE TO HAVE THIS TREATMENT forget what you have seen on the BBC News or The One Show, and from other stroke organisation, this was misleading and damn right wrong. It can only be given to a few stroke survivors I think it is between 20% and 25% can have this treatment and over 130,000 have strokes in the UK each year so that is about 90,000 odd who can’t have this treatment.

So it is more important that we fight for better Rehabilitation of all kinds, Emotional, Psychological and Community Stroke Care for us all, as most of us are going to need this ongoing care for the rest of our lives. TO think that all can be THROMBOLYSED is WRONG it is not A Wonder Drug!! And you have to have very robust systems in place to deliver this treatment.

Regards Brian M A

Stroke Survivor

Please see below, the EXCLUSION and INCLUSION list for my area on who can and can’t be given this clot busting treatment at the moment!!

Exclusion criteria Assessment

Answers to all the following questions must be NO

Unconscious patient....................................................................................................................................... Yes......... No

Seizure at time of onset

NIH score <5

Rapidly resolving or minor stroke symptoms

Infective endocarditis, pericarditis or ventricular aneurysm related to recent MI

Trauma with internal injuries, surgery or biopsy within 4 weeks

Serious head trauma or Central Nervous System (CNS) surgery within 3 months

Pregnancy or childbirth (obstetrical delivery) within 4 weeks

Colitis, oesophageal varices, peptic ulcer or aortic aneurysm

Major surgery or heart massage in last 14 days

History of central nervous damage (neoplasm with increased risk of bleeding, aneurysm, haemorrhagic retinopathy)

Symptoms suggestive of Sub Arachnoid Haemorrhage (CAH) (even if CT normal)

Suspected iron deficient anaemia or thrombocytopenia

Acute pancreatitis, cirrhosis or acute hepatitis

Premorbid dependency

Uncontrolled hypertension(Systolic Blood Pressure >185 or Dyastolic Blood Pressure>110)

Blood glucose <3 mmols or >22mmols

Platelet count <100

Haematocrit <25%

Current anticoagulant therapy or known clotting disorder

Previous stroke and diabetes

Previous stroke within 3 months

Inclusion Criteria Assessment

Answer to the following questions must be YES

1 Haemorrhage excluded by CT Scan Yes No

2 Onset of symptoms less than 3 hours Yes No

3 Risks and benefits explained to patient or relative Yes No

4 NIHSS 5-25 (+/-2) Yes No

5 Age between 18 – 80 Yes No

CT Caution Criteria

Attending stroke doctor or consultant radiologist to check

1 High density lesion consistent with intracranial haemorrhage Yes No

2 Hypodensity in>1/3 MCA territory or equivalent

3 Effacement or CSF spaces in 1/3 MCA territory or equivalent

4 Posterior circulation stroke/isolated hemianopia (consider IST-3)

If all the Exclusion criteria has been assessed as NO and all the Inclusion criteria has been assessed as YES, the Consultant Physician will make a decision as to whether the patient is suitable for Thrombolysis.

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From what I believe..... a stroke is an interruption to the supply of blood to the brain .... whether it be from a bleed or clot.... http://en.wikipedia.org/wiki/Stroke....

A subarachnoid haemorrhage can often affect those persons of a much younger age, than those people that are traditionally seen, to be affected by a stroke..... If you've had a bleed and have had surgery, then the opinion seems to be, that you're "fixed" and you need to get on with your life or if your non-aneurysm, then you've probably been told, that you're one of the lucky ones... and that all will be well.....

None of this answers as to why, many of us are still getting problems post SAH ..... I really do believe, that we deserve better, no matter how our stroke was caused and I also don't believe, that the FAST campaign, does anything to hi-light a stroke brought on by an SAH.

I believe, that 8,000 people, per year, in the UK suffer a SAH .... and to my mind, that's enough people to have been affected and should have made the FAST campaign a little bit different, then it turned out to be..... The mortality rate from a SAH is horrendous ..... and the reason is, that many of us, can't get past a GP, let alone being referred to hospital for an immediate CT scan ......The fact is, that the medics still can't recognise the warning signs of a brain haem .....

I'm sure, that if many of us here, had been diagnosed earlier, we wouldn't have gone on to suffer what we are experiencing today .......

Keep up the good work Brian ..... xx

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Hi Karen,

I agree with you the way SAH survivors are treated after their operations and stay in hospitals is wrong, they do not take account of how it has affected you or your loved ones, what is going on in your brain the emotional and psychological and the pain that happens to many with SAH and other stroke survivors. I also agree that it is younger people that have SAH and the mortality rate is a disgrace, the NHS should be looking into the warning signs and doing something about it.... You are right the FAST adverts did nothing for this whatsoever, and even showing a burning brain upset many stroke survivors me included.

I also came up with about 8,000 a year having an SAH and that as you say is enough for the FAST campaign to be a lot more effective about SAH and to stimulate research into its causes and do something.

I am trying really hard to understand SAH and today asked the Medical Director for Hull if I could have a meeting with her on this matter, and to talk about why we do not notify the Acute Stroke Service about all cases of SAH, and not just the ones that have ongoing problems after being in hospital, so that all get the after care, that, I and other stroke survivors enjoy.. will let you know how that goes.

Thanks for you comments Karen much appreciated

Brian x

Stroke Survivor

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Hi Karen,

I know you posted about FAST being a good advert and campaign and that you liked it ... but could have been better for SAH as it did not cover that at all.. And I replied to that post but they both seem to have been taken off BTG do you know why ? Or can you throw some light on this ...

Or am I dreaming lol

Kind regards Brian

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Hi Brian and apologies for losing the original post.....so will try again! :oops::oops:

I was personally quite impressed with the FAST adverts on the TV ..... They did make me feel slightly uncomfortable and the same for my family. Unfortunately, I do feel, that they still haven't hi-lighted a stroke that is caused by a SAH ..... and that the wording "headache" or the worse headache that you've ever known, could and should have been included.

I was approached by a media company, that had been employed either by the NHS or the Government to raise awareness in the press about stroke and to hi-light the FAST campaign .... however, they also didn't realise that a SAH was a type of stroke, until I explained it to them.

I really believe, that if the government/NHS are employing people, to actively raise awareness of any medical issues, that they should be fully briefed, with all case scenarios. I sometimes feel, that I'm banging my head against a brick wall and that the FAST campaign was a v.good opportunity to improve the SAH situation, but once again, it was a punchy campaign, but sadly lacking once more, with the information.

Well Brian, I hope that I've covered my original post and my apologies to you.....xx

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Karen, Brian

I have been reading your entries and agree with both of you....

the FAST advert was good but not good enough I dont think and NO it dosnt really hi-lite that a SAH is a form of stroke.....

in some cases if your having a SAH you can appear drunk with your words walking balance which is all similar (& people act acording to the thought you are drunk or on drugs), to a strok as you know but the A arms can be fine sometimes to active in my case....it is stroke and SAH us and them and really it shouldnt be like that at all....we're all survivors...

as usual I dont know if I'm barking up the wrong tree or not I cant remember the bulk of you posts Brian but well - sorry....

take care

Louise.x

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Hi Louise,

Thank you for your post and contribution to this topic ..... :D In a lucid moment, before having another seizure, I can remember the paramedics asking Eric, if I had been drinking ..... it does or did kind of feel a bit insulting ... but I suppose that they have to pose the question, to rule out the alternatives and to make sure, that they apply the right treatment, pre-hospital admittance....

I was only paralysed briefly down my left hand side ..... not sure how long that lasted, as my memory of that evening/morning, is in bits.... However, I really feel that the FAST campaign, wasn't good enough for a stroke brought on, by a SAH. I do feel that it could have been so much better and find it sad, that the subject of SAH, is still not being included, even though rare, up against a stroke caused by a clot, it still affects 8,000 people, per year, in the UK.

The mortality rate of a SAH in the first few hours, days and weeks is pretty horrendous and awareness needs to be raised...and the opportunity with the FAST campaign, has been well and truly missed.

Love Karen x

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hi sorry i missed most of what was posted over the weekend, it made interesting reading, i would also like to throw into the ring so to speak the following

when i was in the ambulance service, we were taught the signs and symptoms of both sah and stroke which are the following -

for a stroke, normally the patient would have collapsed none responsive for a period.

on awaking there would be loss of muscle tone and be unable to lift the limb. on examination we would hold each hand and ask them to squeeze, defining if there was any weakness of muscle tone and and strength. there are many checks we carry out before we diagnoise strokes, speech would be impaired and confusion and alarm and the face normally drops one side only. from the patient most strokes occur when the patient is asleep and therefore is not apparent until they wake up. the ones that occur when patient is awake, always render the patient non responsive in 99% of the time. very few stay awake thats where the [ fast] falls flat, because the body shuts down into protective mode and renders the sufferer non responsive. some strokes can and are fatal as well

a tia is a short lasting stroke, which resolves itself within an hour or two with very little long lasting damage, but is still important in itself and requires further investigation

sah are totaly different in comparision

the guideing rule is two types one for men and also for women

during an sah the men get very very agitated and very restless to the point of violent and are very difficult to restrain. all the time they fight their faces flush and seem to be fighting all the time, the clue to WHAT IS going on is the check the pupils, you always find one pupil dilated, that is the side of the bleed the agitation is due to the blood irritating the brain.

women however, dont ask me why, always have a thunderclap flash headache. very similar to post coiltal but ten times worse. some have visual problems but very rarely agitated pain at the back of the neck, going over the head and possible weakness of limbs. BUT AGAIN LOOK INTO THE EYES, the pupils are odd sizes, the dilated one is on the side of the bleed and women seem to fit, just after the inital bleed there maybe other signs that i havent mentioned, because again women present differently, but the headache seems to appear in 99% of case's.

karen i knew you were asked if you had been drinking, its normal practice but if they had looked into your eyes, they would have picked up on it

brian i would like to disagree with you, that all stokes both non traumatic and traumatic should be treated the same. a sah type of stroke has far far more complications and far more need for specialist care, because more conponents are invovled. the immune system breaks down hearing an be impaired along with mobiltiy poss sight and behavourial problems in some stamina because the brain has suffered a traumatic type of injury which envovles the whole brain, not just the section that is affected in a normal stroke per say. im not saying that a stroke is minor injury because its not, it just needs a different type of rehab invovling more of the specialist people who need to understand the complexites of a sah

in fact the mortality rate is a lot higher, information is about, if not more than 16,000 countrywide, because it does have the title of the silent killer because its not top of the list, nhs wise.

sorry for going on so long

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Thanks for the info Paul.

I've just re-read all of the men's SAH stories on the site (there are not many of us!). Not one of them mentions agitation or violence. Whether that's due to amnesia of the event or not I don't know, and I must have "presented" as a woman as I had all of those symptoms and none of those you mention for men. Also I was paralysed on both sides, not just one side.

I agree Paul that there is no way SAH can be treated the same as a "normal" stroke as there are quite different issues involved both at the acute stage and chronically. I've had a TIA as well, so I've collected the set. Incidentally, I never tell anyone I had a stroke, but always that I had a brain haemorrhage. I know SAH is a type of stroke, but if you mention the word "stroke" people get completely the wrong idea and you end up trying to explain the difference and I feel it's just not worth it.

Regards

Keith

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Paul, I only think that they picked up, what was wrong with me ...... because Eric told them, that I could have had a previous warning (sentinel) bleed, 3 years earlier ..... and that was only because I'd looked up my symptoms on the web and confronted the Docs. If I hadn't found out the info on the web, then goodness knows what would have happened, the 2nd time around.....

However, I cannot thank the Paramedics enough, for the swift action that they took and doubtless in my mind, they saved me from a lot worse and I shall be forever grateful to them both....

Keith, like yourself and Paul have both said, a SAH is different to that of a "normal" stroke .... and is treated differently. However, I now tell people that I've had a brain haemorrhage that caused me to have a stroke and they seem to be able to comprehend the situation a bit better.....

The majority of BTG'ers, do tend to be women and it would be good, to get a few more men onboard and to hear their story of their SAH ..... that way, we could get a more balanced picture ......

Interesting topic though......xx

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thank you keith brian and karen

everyone presents differently and depending where the bleed is triggers different signs and symptoms but i was taught in the early sixties and up dated regulay i must admit most of the sah i have come across have been very agitated and they have been into high double figures

i think you maybe right about the amneisa bit as many many people cannot remember what happend some say they remember bits then nothing for a few days

i certainly wouldnt classify you as a women lol but i think overall it depends where the bleed is and which part of the brain is damaged

the answer lies in the eyes pupil differences un equalness or dialation

they have always said the eyes are the entrance to the soul in repect to the sah this is certainly true

and the sah sufferer should be treated differently in respect of recovery and everyone should admit I DIDNT HAVE A STROKE BUT A HEAMORRHAGE

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I now tell people that I've had a brain haemorrhage that caused me to have a stroke and they seem to be able to comprehend the situation a bit better.....

Never thought of that. Perfect description Karen.

Regards

Keith

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Hi All,

Turning into a great debate and conversation as it should, I have however never ever come across A Normal Stroke as they are all different even if two people have had the same part of the brain damaged.... One third of all stokes end in death NHS say this, and you normally die in the first 7 days of stroke or brain damage is a better way of putting it.... I have eight friends who are blind from their strokes. I think we would all agree that strokes or SAH are devastating to the person who has had this traumatic event happen to them.. SAH does have a a high mortality rate in the early days and that I agree with... But both events need long term care and treatment and it is important that we help each other to achieve this..

Yes Louise you are right we are all survivors and thank god we are, and I think this site has done more for SAH then any other site I have looked at, but the powers that be within the Heath Services or Department of Heath have not done what they should for SAH, that is why I took an interest in my area as SAH was being left out.... Not any more I am happy to say ...

We should not be just looking at what has happened to us be it an SAH or Normal Stoke, (as some call them) but how we can best help each other in the long road to recovery, I understand we need different treatments and the damage to the brain is different, but the staff to help us are there, we need to get them to work together and see what we need and for them to deliver that.....

I think we all need to thank the Paramedics.....

Karen it is quite common for a person having a stroke to appear drunk, so some or at least one of the symptoms are the same... Thanks for posting the one that got deleted Karen bless you ....

Paul thanks for all you have said as I have learnt a lot from you and Karen on this subject and that is helpful to me and the work I do up here....

I tell people I have had a Brain attack

Take care all. Brian M A

Stroke Survivor

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There is certainly some interesting information coming out of this discussion. I agree Brian, that no two strokes are the same. Many people reading these message boards for the first time are often surprised and indeed comforted to learn that. When I referred to "normal" strokes, perhaps I should have said ischaemic strokes. SAH accounts for only around 5% of all strokes, but also around one third of all stroke deaths (depends on which statistics you read!). The vast majority of people understand a stroke to be of the ischaemic variety as it is the most common. My wife was very confused when she was told I had suffered from two strokes, not realising that they were referring to haemorrhagic stroke or SAH. It was only later that we both learned that SAH is a type of stroke.

Aftercare following SAH seems to be very patchy around the UK, some areas being better than others, and that's not just from the medical follow-up perspective, so the work that you are doing in your area is very important to highlight the needs of SAH and stroke survivors and that a "one size fits all" care package is not the solution. (Sorry about the cliché, I normally avoid them like the plague :wink: ) Keep up the good work.

Sites like this one and other SAH and stroke support sites are also very important, not just in supporting survivors and families, but also in raising awareness of people's needs.

Regards

Keith

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when I was in the rehab hospital at the other side of the hospital was the wards for stroke patients, they got different physio from the stuff I got.....

yes it is specilized the rehab for SAH patients....

L.x

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well said brian keith and louise

a lot more needs to be done to seperate the sah from stroke louise has hit the nail on the head louise got a different type of rehab which what is needed

im going to be blunt the three strikes i think keith mentioned relates to a stroke patient suffering three stroke's the first is a warning the second is nornmally slightly worst and the third ends life sorry if this upset's people i didnt mean to do so but having worked for thirty five years as a paramedic it what i have witnessed wish i could say otherwise but a interesting debate

and it would be nice to have louise's treatment countrywide

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Hi Paul.

The three strikes thing just struck a chord with me (no pun intended). The Neuro intensive care consultant's words to my wife were "He's had two strokes and we can't afford a third"

Regards

Keith

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Well, I've also had two strikes .... God forbid if I get another one..... as I really can't envisage or begin to contemplate life after a third bleed and no, it's not depressing, but a fact.

I'm fully aware of the damage that has been incurred with the 2nd one and to be brutally honest, if I get a third, then I'm not sure if I would want to survive it .....

Well, it's making me shudder just thinking about it .... let's hope that some good medic is looking on and will do something, to raise awareness .... xx

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