Brian M A

Hi Pamela, Sorry to hear about your Other Half going through this and for you also this can't be easy .. but we are here to help if we can... I also had a stroke which resulted in the same kind of symptoms, about the same time scale also, I became frustrated, tired, angry, cross, irritable, unreasonable, selfish and self centred blamed everyone but myself, I used to say after explaining things "You do Not Understand" over and over even if my wife or friends did understand... but mainly I felt guilty for having a stroke and the lives it changed.. And yes Janet is right I was depressed and lost my confidence.. and again Janet is right it is quite normal, and common in a lot of people who had had a stroke. But sadly not talked about as much as it should be.... You should get help from your local Community Stroke Team if you have one or from the Acute Stroke Service.. As Janet says in her post talk to your GP first he should be able to point you to the best people to help... Hope this has helped you.. Take care Love Brian M A xxxx Stroke Survivor

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

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

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

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.

Dear all, For your information only The Annual Stroke Service Report 2008/9 for the Kingston upon Hull and East Riding of Yorkshire Stroke Service has been added to my Updates Page on my web site, it can also be accessed from the Home Page were it states about the annual report being added as well as the link to the Updates section.... I did ask and was given permission to do this at the last Stroke Working Group Meeting.... This report must not be copied or taken from my web site!!! http://www.strokewatch.co.uk/SSAR%2020089.htm this is the direct link from here .... http://www.strokewatch.co.uk Kind Regards Brian Brian M Archibald 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 http://www.strokewatch.co.uk

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

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

Hi Keith, Have now read them all Keith, it was good to work with you through all the Campaigning way back then and all the years since even when Strokewatch closed you were the one person who stayed with me, fighting for what we as stroke survivors' knew was right and wanted in our area of the UK, and for 18 months we were on our own. One day, I may write in here and even tell people that we got no support whatsoever from the so called professional outside bodies who shout the loudest that they support all stroke survivors' and carers', anyway enough of me. I know the work you have done over the years, the hours put in, and the results that followed, seen the things you have done for others when ill yourself I have never heard you say the word NO, when sometimes we both should have used that word. This little bit is to say, THANK YOU KEITH, for your friendship and continuing friendship, have to go a long way to find another like you, KEITH. From, me your fellow stroke survivor but most of all your friend. Brian

Did anyone know that new stroke guidelines had been issued in July by the National Institute for Health and Clinical Excellence (NICE) and the Royal College of Physicians (RCP) and were you all aware that you had two patients and carers reps on the group that produced the guidelines? Were you all kept informed at all times through the whole process or that you should have been? Do any of you know the names and contact details of the two patients and carers reps? Regards and thank you Brian Stroke survivor

HI Tony, Great to see your story on here, you now have it posted on three sites which includes mine at ( http://www.strokesurvivors.co.uk ) It can now be read by a lot more people, they will all gain Encouragement and see what can be Achieved through hard work and the great support given by your family, friends and the people that helped in the beginning. I have the pleasure of knowing you and being able to visit you at home now, and I can see and feel the effort you and your wife Ness, (your name for her) put in so you to move on. Thanks for sharing you story with so many people, take care. Your friend Brian Visit Tony's chat room as Jess say's it is great at http://www.chatshack.net/antiquarian