Proposed upgrading of immediate stroke emergency care in scotland

The Scottish Government in conjunction with the Stroke Association or Stroke.org or some other agency had a TV interview on Tuesday 27th June 2023. In this, it was saying that In Scotland in 2022 about 12,000 people had a stroke but only 119 had a thrombectomy. They are trying to get these figures better in terms of patients’ outlook for their future.

I may not be explaining this very well.

In 2017 I had an ischaemic stroke that caused an homonymous hemianopia, left side that affected my left sided peripheral vision. The DVLA took away my motorcycle and car licences. Since then my life has been horrendous, having to put up with useless buses after having not been on a bus since 1976. They are as bad now as they were then.

Some of you will know this condition, in that I can’t see a MOVING object approaching from my left side vision until that person or car etc. is right in the CENTRE of my field of vision. It is so subtle what a little blood clot can do.

Anyway, when the Government-backed plans to improve stroke care, I hope patients receive better care than I had in February 2017, when I had to phone 999 three times and make 3 PRESENTATIONS before I was admitted to a stroke unit. In the first 2 presentations I was told that ‘‘you are not having and are currently not having a stroke’’ and this was based on whether I could walk, talk and lift my arms up.

On the 3rd presentation I took a qualified stroke unit Nurse, (from another) hospital with me, only to be told that it was not up to me or my friend whether or not I would be admitted to the stroke unit. After midnight, I was admitted BUT a CT was not done until the next day…OVER 50 hours after the onset of my visual disturbances called scintillating scotomas. 4 hours after the CT it was confirmed that there had been an ischaemic stroke.

As many of you know, a thrombectomy or thrombolysis procedure must be performed not more than roughly 4 hours after onset of symptoms. If a CT had been done on my FIRST presentation, my vision could have been saved.

I even consulted the medical ombudsman(lady) who upheld 2 of my 3 complaints about procedures in hospital A & E’s regarding stroke symptoms. There was no compensation as would have been the case in the USA.

Finally, I hope the new report places more emphasis on vision damage during stroke, and less on mobility and speech. My left side was numb for 5 minutes at one point and I had to drag myself around my bed to a phone. Thanks to God that disappeared.

There was also no follow-up regarding vision restoration therapy such as visual scanning or visual tracking or use of prisms. just left to get on with my miserable life and 2 years after the stroke, my beloved Mother died at the age of 91 after having survived the 1957 Asian Flu Pandemic sub-type H2N2 when was only 29. I was 4 at the time and in nursery. I remember it well. She was 4 months in hospital but survived, albeit with various deficits.

I won’t quote hospital locations but my Mother was very impressed with the care given to her in 1957 by Professor Rogers, and I was impressed by my eventual care Mr Breckenridge and Professor Muir in my case.

Finally, as was stated in the TV interview, the problem regarding stroke car in Scotland is systemic ; nothing to do with the clinical abilities of the doctors, specialists or nurses…and I would like to name-drop Irene…im 2017…an Angel and superior nurse.

D. R. Anderson, M.C.I.B.S.(Edin.)

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Hi Welcome to our forum, sorry to hear of your stroke journey so far, unfortunately it mirrors the experience that many of us stroke survivors have experienced.
Wishing you well in your recovery and look forward to hearing from you.

Regards Sue

Hi @David_R_Anderson
I’m one of the 12,000 rather only 119. I’m in Edinburgh, and I’m right in the time scale you draw statistics from - I am two and a half years post stroke. (and welcome to the forum for a community none of us actually applied to join!)

Like you I could lift my arms, didn’t slur my speech, could swallow, but my balance was off. The other symptoms caught up with me about 48 hours afterwards by which point thrombolysis and thrombectomy We’re no longer an option and Im now stroke warrior with the deficits that were caused

Not uncommon to see things like the stroke pathways guide etc that trots out Janet and John levels of insight about stroke care. in fact you can take the cardiovascular pathways document cross out the word cardiovascular insert stroke and they’re practically identical AND they’re aspirational because they are not particularly followed in reality. especially when you get to the chronic care rather than acute

One of my annoyances is that the stroke association still promotes fast and I’ve been criticised by stroke association staff for calling out online the fact that fast while a great groundbreaking advance is overdue for a overhaul and should be either BE FAST or FASTER because it is cemented in the medics mindset that to have a stroke you have to suffer fast symptoms. I attended a zoom session today run by Bristol health authority on upper limb rehabilitation at which the presenter gave graphs in support of the statement that upper limb rehabilitation only happens in the first 6 months post stroke. what complete bollocks. In fairness she did subsequently contradict herself by talking about the rehab clinic at queen’s Square in London that ran a study with a median time post stroke of 18 months where improvements were seen but she had spent the first 5 minutes of her presentation telling the audience how recovery only happens in the first 6 months and this from somebody positioned as an expert and given a podium

So I’m with you in what I sense is dissatisfaction. I’ve heard and I think it worth repeating that the success of cancer campaigners rather places many other needs in the shadows. Sad as a society as rich as us in the British isles can’t deploy the resources needed to care for all its medical needs but thereby hangs are different tale based in politics

Simon
PS are membership initials the chartered institute of banking or molecular and cellular biosciences

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@David_R_Anderson just popping by to say hi & welcome to the forum. Sorry you’ve had a stroke & experienced poor care. I don’t think it’s just Scotland where there are issues.

In my case I didn’t present to A&E early enough for the Thrombectomy as, not having FAST symptoms i had no clue it might have been a stroke.

Hope that things jmprove for you.

Best wishes

Ann

Hi @SimonInEdinburgh - I too have spoken several times to the Stroke Association about FAST. It’s fine, but there are lots of strokes that don’t present that way and I think it can be misleading. When I had my stroke I delayed seeking medical help as I didn’t have the FAST symptoms.

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Hi @JSCAPM
Great you’ve raised concerns👍
Sorry to hear you delayed seeking medical help by being missed advised. :sob:
Research says provably at least 14% don’t match fast. anecdotally I think we see in the forums its more like 25 to 30%. I hope you’ll take further opportunities when they present themselves to raise it. I certainly will.

Their web page until quite recently only mentioned fast and they still post on social media about fast .

I contributed to one of the social media posts by saying that fast was good but must be extended. Other posters had also said the same.
I then got ‘taken aside’ by someone and told about how I shouldn’t make comment in public. Well I am a member of the public. I’m also a member of the public whose permanently affected by it so I told them I am not going to rescind my beliefs that the stroke association is holding us back when it should be moving us forwards. I was offended and angered by the suggestion that I shouldn’t say anything - while I won’t mention their name I will mention the incident at approprate opportunity.

At least subsequent to my posting and being told “there’s no way we’ll change it” the web page did actually change to still say fast but include something to say and there are a few more symptoms to consider

Anyway they do lots of good so we shouldn’t carp on the few shortcomings of an organisation when it’s a balance of factors & there are balancing factors to compensate. It is an avoidable shortcoming and that’s a shame

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Well done @SimonInEdinburgh. I agree that the organisation is well meaning and does lots of good work but it should also be open to constructive criticism, especially when it’s from people with ‘lived experience’ (as they like to say).

Thanks everyone for your very interesting replies.

In answer to Simon, the MCIBS is because I am a member of the Chartered Banking Institute in Edinburgh, currently of Drumsheugh Gardens and formerly at Rutland Square. I am retired from a bank that I better not mention, but suffice to say that my employer was and is very caring of its staff.

I don’t want to bore you all by going on and on, but there is some irony in this short story. In December 2016, the former Chairman of my motorcycle club died after having a stroke. I wanted to show respect for my former friend, so I decided to drive to his funeral in Buckie. I have never driven during winter, other than the central belt, but I actually drove north through Aviemore, Elgin and eventually getting to Buckie. His family and friends offered accomodation to me and I stayed 2 days, but coming back I went from Buckie to Aberdeen and then Dundee, mostly motorways, which I actually loved, especially in a sleety December.

To get to the point, that round trip of a few hundred miles was the last time I actually had a long-distance drive, because just a few weeks later, at the end of January, into the start of February, I had my own stroke, as mentioned in my first post. It is ironic that I should have had a stroke just a few weeks after I had driven through Scotland in winter, to attend the funeral of a friend who had actually died from his stroke at the age of 79. My stroke was when I wasn’t quite 64.

Between 1984-2017 I had done over 50 trips with my motorcycle club, throughout Europe, and eventually by car to visit my many friends, particularly in Eastern and central Europe.

That’s why I have a chip on my shoulder regarding losing my personal transportation and therefore independence. Since 2017, I understand fully how 100-year-old drivers feel when they are told by their doctors that they must surrender their driving licences, as seen in a couple of TV documentaries.

Those of you who live in Edinburgh shall know Morningside Road and in particular the Grange nearby. That is where the Astley Ainslie NHS rehabilitation is located. They deal mostly with various adaptations to cars etc. but also have tests for stroke survivors who have visual deficits.

Within the DVLA rules, they having something called the Special Criteria, and if someone satisfies those rules, a driving assessment is permitted, after doing tests on a static ‘‘rig’’ with flashing lights etc, within the hospital buildings. After that there is a driving assessment on ordinary roads and I had to drive through the hospital grounds a few times and then out on to Morning side Road and residential roads off there.

My own automatic car was sold in February 2017 since I was told there was virtually no hope of any visual improvement. Therefore I used the hospital’s little automatic, but I was too heavy on the pedals and kept exceeding the 20MPH signs. My point is that I was put into a strange car, after having not touched any vehicle for 27 months from February 2017 until the assessment drive on 2nd May 2019.

How someone is expected to perform well in a strange car after 27 months of not driving, I don’t know. There isn’t even a re-test allowed. One drive and you’re finished. Also, no other driving is allowed before the assessment using for example a qualified driving instructor. There is a special one-off licence that is only allowed during the assessment then handed back.

I have to be grateful that the paralysis I experienced before one of my hospital presentations went away after a few minutes, otherwise my left arm and leg would have been non-functional.

The TV presenter also had a stroke, as many of you will know, but luckily his deficit was not in his occipital lobe ; it was a motor function deficit, and Andrew did an interesting program about his disability. He has a leather strap device between his waist and his left foot and that helps him to walk, reasonably well but he had a lot of guts to persevere with it, not unlike the great Douglas Bader who was depicted in the film ‘‘Reach for the Sky’’ with Kenneth More…a masterpiece in dealing with having no legs at all.

And of course, since Andrew’s left arm is ‘‘dead’’ his automatic car had to have control knobs on the steering wheel so that he could control the steering etc. with just his right arm, and being an automatic the left foot just sits on a plate and only the right foot is used on the 2 pedals. I wish Andrew many happy years of driving.

I have been trying to think positively since my Ischaemic stroke over 6 and and half years ago, and am grateful I am lucky to be able to walk about and use buses 90% of the time with the occasional tax. Being older, I have a free bus pass so I don’t pay a penny for transport in the whole of Scotland, if I wanted to do a tour of my own country, since I can no longer drive to my various friends in Hungary, the Czech Republic, Eastern Germany along with other European countries.

The only good thing about 2nd May 2017, was the lovely number 900 bus, I think it was, from Edinburgh to Glasgow. I had been given a lift to Edinburgh in a car by a former colleague who still works in a bank in Edinburgh.

Hopefully, I shall get to my finishing points. I have been subscribing to various universities newsletters here and especially in the USA, in particular MIT…Massachusetts Institute of Technology, though to be the greatest university on planet earth, because of their innovations in the medical world, amongst others.

I am hoping MIT come up with creating artificial neurons (brain cells) that can be used to replace the function of my own dead brain cells in the occipital lobe, thus reconnecting the brain via the optic nerve to the eyes. Many of you will know the term neuroplasticity. That is when live neurons adjacent to the dead cells, take over their function by by-passing the dead ones to create a new route to the eyes. Natural neuroplasticity is most likely to occur within the first 4 weeks after an Ischaemic stroke. After that, there is less than a 1% chance of vision being re-connected.

Finally, I have also been obsessed by fully self-driving cars. These autonomous cars shall probably not be available to just anyone until I am dead, and at the moment the main place that they are used as robo taxis is in Phoenix Arizona. But world utilisation depends on Infrastructure. THe main rules are in the American standard and is known as the S.A.E.Level 5 to be truly autonomous. I other words, I want the car to take me to ANYWHERE at ANYTIME in ANY WEATHER, and the car to be either purchased or rented long term. It won’t be cheap but I am obsessed with totally independent personal transportation.

In the USA, ‘‘ride-hailing’’ or ‘‘ride-sharing’’ seems to be predominant. I do not want that ; I want the car for me, my family and friends and neighbours etc and be available to me 24/7.

I even tried EAPC’s’''electrically-assisted pedal cycles but that did not prove useful. When you have peripheral vision loss, left or right, the rule is that you are not allowed to drive or ride ANY vehicle that is self-propelling. So that just leaves an EAPC. As-long-as there are pedals, it is legal, if no pedals, forbidden. And also it must not be capable of exceeding 15.5 mph with the battery-assist.

I hope I have not bored you all too much.

After over 6 years, I am now an expert on bus timetables and weather forecasts, having to use both of them when I am planning on going anywhere. Of course, if hospital appointments are involved, such as for pacemaker or prostate tests, then I just have to put up with the weather that day. I am now on my 5th black shopping trolley since 2017 and it’s amazing what you can carry in these things.

Thanks again and please excuse any typing errors, although I try to proof-read… it’s the habit of typing a letter to the right or left of the key I want, because my eyes don’t notice it.

I failed the driving assessment of course and one reason was ‘‘drifting’’ within my lane, but not actually straddling another lane while going along the Edinburgh bypass. That was not a good sign. I was told to give a running commentary while driving, regarding my road positioning and passing other cars, when parked, for example. The physiotherapist Alison said very kindly and logically, when I said that I didn’t know that I was doing that, she said…‘‘Mr Anderson, the reason you didn’t know that you were doing that, was because you couldn’t SEE that you were doing it.’’

Anyway, I’ll close now and just have to realise that what is going on in Ukraine over the past 16 months is absolute hell compared to my problems. Compared to them, where I am living is like Monaco compared to Mariupol where people had to spend several weeks in cellars with little water, food, electricity, light or important medication supplies and if they were lucky, they were not killed or lost various limbs. My friends who live in Hungary, Czech Republic and Slovakia are only a couple of hundred miles from the misery.

David R. Anderson

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Hi
I know what the drives up north are like, I’ve been up through the Great glen and up to Kylsku, durness and over to Inverness Elgin and Peterhead etc many times on trips related to the Scottish hotel awards. I worked in Inverness for some months when I first moved to Edinburgh. Driving the A9 every week watching the progression in the trees as they came through winter and spring was glorious there wernt any speed cameras on it when I worked there and I had a twin turbo 3L ’ jet propeller roller skate’ at the time.
I can appreciate your loss of freedom although I haven’t done the motorcycle tours of Eastern Europe :slight_smile:

I also know the Asterly but only the old school building where what passed for physiotherapy after lockdown was performed. Mostly wasted time but that’s another story

I’m in Edinburgh because best part of 30 years ago I was asked to fix parts of the IT for one of the banks . I’m decode from which ones " caring of staff" but I was based in ‘fortress fetters’ if that gives you a clue.

I guess you know there are various online and physical stroke related meetups around Edinburgh? I and Louise who’s based in Glasgow run a fortnightly zoom. she does it one week in the AM I do it the other, currently in the PM. There are groups that meet that I know of in collington (run by a retired DCI called Bob who also joins the Thursday morning cafe on Zoom most fortnights) and gilmerton (run by Tom). There’s a CHSS group in gilmerton as well I think it meets on a Monday in a church hall but I don’t know the details .

There are a lot of collected stories in the canon of Stroud warrior literature about the trials around DVLA and assessment and everything else for driving but knowing many have a challenge doesn’t make accepting it any easier
Anyway I wish you a good day :slight_smile:

So as I read this I’m lying in Ayr hospital being told I definitely have not had a 3rd stroke.

My first stroke was diagnosed as vertigo and only when I asked an optician to investigate changes toy vision was my stroke diagnosed.

My 2nd stroke was diagnosed as vertigo and only at my insistence did I eventually get an MRI confirming my 2nd stroke 3 months after the fact. This has left me with chronic fatigue and cognitive impairment.

I mentioned to my ambulance that I had been misdiagnosed twice and wanted to be taken to the stroke unit in Kilmarnock on the advice of my stroke consultant and nurse! Apparently it’s not up to them and there are hospital politics at play!

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I’m very sorry to hear that you are falling foul of politics.

It is a fact of life though I think it operates within the stroke association too, across stroke association DS as well. We could definitely do without it
I really do hope that for once they’re right!
Fingers crossed for you or

Just responding to Alis’ post @Loshy

I haven’t got a clue what you’re talking about @Loshy
You asked “why politics” i show ed you the quote that I was responding to
nothing personal Just purely factual
You seem to be erroniously leaping to conclusions

Hi @Loshy
It seems that Alis’s care is being affected by politics

I have experienced politics affecting other stroke things within organisations they should be focused on care provision for us so I was lamenting with her

I don’t think this ‘turf protection’ a good thing for anybody anywhere but that’s another thread perhaps
anyway it’s a sunny day to b enjoyed, maybe in the garden?

c’est tout
:smiley_cat:

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I can confirm that the health care politics isn’t limited to Scotland. I live very close to the Dorset/Hampshire border (about 3 miles within Hampshire) with the closest A&E being in Dorset. So when I had my event I was (after a 6 hour wait for the Ambulance) taken into a Dorset hospital but when discharged they just took me off their service due to my post code so of course I have no consultant support from either Dorset (due to discharge) or Hampshire (as I never went onto their service at the point of the event).

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@Alis i hope you are ok & that they’ve got to the bottom of what’s going on. Wishing you all the best. Rest up & take it easy xx

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Thank you @Mrs5K. They have no idea unfortunately. My GP tried to get me admitted to the stroke ward for further investigation yesterday but the hospital again refused to accept me based on the fact A&E found nothing suspicious on the CT Scan they did on Friday.

Waiting for the results of blood tests which I should get on Friday.

@Alis how frustrating for you. I would hope that they have at least referred you for an MRI. We all know some things don’t show up on CTs but do on MRI.

Sounds like your GP is trying to help. Hopefully the bloods will provide some answers or at least rule things out.

Take it easy & look after yourself & i really hope you get some answers soon.

Best wishes.

Ann xx

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I’m feeling you @David_R_Anderson

hpw are you doing?

My hemi is right… has 3 ischemics in nov 22

didn’t have the bike unlike @Moonie66 but yeh my car one was gone just like that.

I live in London and the transport is actually f*****g good but I can’t cope so get cabs and uber and taxicard and have a freedom pass etc… Not the same where you are I know but just in case you want to bore yourself:

I’m with you

very similar but let’s say equal not more? maybe? we all have our foibles

sorry to say but they gave me good care.

RIP :two_hearts: :polar_bear: :astonished:

Hope you’re ok mate.

Kieran.

Here is a picture of a polar bear. just becaue

Polar Bear - Plugged In