Were you given an explanation of what was wrong?

Last summer, on leaving the Watford Stroke Unit after a few days, I was given a paper bag containing three boxes of tablets which a pharmacist had briefly explained to me. No one else told me anything and I later found in the bag a folded piece of paper headed 'Admission summary' which included the results of investigations such as the MRI scan. It said things like 'extensive small vessel disease change' and 'multiple left hemisphere infarcts'. Nobody had spoken to me about this to explain what it all meant or what the 'OP echo and 72 hours tape' was that it said I would have in the future.

I arrived home by hospital transport after dark. I live alone and spent a worrying hour or two on the internet looking up the terms used to try and find out what they meant and how serious it was. I did not sleep much that night. It was a few weeks later when a regional co-ordinator of the Stroke Association rang, that I had an explanation of what it all meant. She was very reassuring and thought it was 'bad' that no one in the Stroke Unit had explained anything to me. I found that there was a Stroke Association helpline that I could have rung, but I had known nothing about this. The Stroke Unit apparently notifies the Stroke Assocation about patients, so the Assocation can follow them up, but the Stroke Unit did not tell the patient about the Stroke Assocation and the support it can give. 

I know I am fortunate that I have not been as seriously affected by stroke as some people are, but I shall never forget the awful experience of how I found out what was wrong. Has anyone else had a bad experience like this, or conversely has anyone had a good experience that shows how it should be done? Are consultants/doctors given training in how to communicate with patients and the importance of explaining the illness and treatment? Do they have any understanding of how it feels for people with no medical knowledge to be subjected to this? Does any stroke unit ask patients, perhaps by a survey, how they found their experience in the unit, so the medical staff can learn from it and improve what they do? I would be interested in other people's experiences.


Hi.your message struck a chord with me.i had a similar experience inMarch this year.was admitted to hospital with symptoms of a stroke.had ct/MRI scans,tests etc.after 3days in hospital they sent me home and said they would let me know the results of my scans as covid patients were coming in and needed the beds.i was given medication for cluster headaches in a little bag from the pharmacy and no other information.4days later I was rang by a consultant to say i had a right sided burst vessel in my brain which caused the stroke.i then had a call from the hospital to pick up medication which they told me I'd be on the rest of my life.i was so frightened and needed answers but wasn't getting anywhere thanks to the covid panic.then I found this organisation on the website.ive been in touch with a stroke survivor on a 12week phone session and that has helped alot.hospital/doctors have been useless.i hope you get well soon and if you can look at stroke groups not web they are a mine of information and alot have been through this as well.best wishes.Bernadette.x

Thanks Bernadette for your help and support. Best wishes to you too. Brenda

In Worcestershire, my experience has been excellent. My stroke was nearly five years ago while on holiday in Devon. I was in a local hospital for 4 days, then brought back to Worcestershire. After 4 days in an assessment hospital I went to a rehab stroke ward for four weeks. There I had physio and support until I was allowed home. I had a home visit before being discharged and alterations made to our house. I was discharged with medication and my medical report.

I then had six weeks home support from the county community stroke team with daily physio. I was visited by the community stroke nurse and my own district nurse and had a phone call of my doctor. I was also referred back to my rehab hospital after six weeks and had another year's physio once a week.

This year at the height of the first wave of the pandemic I had a second mild stroke and spent two nights in hospital. I was told exactly what had happened (a tiny clot this time) and discharged with new medication. I had another visit from the community stroke team, but felt I did not need any ongoing support this time.

I'm afraid not all health authorities are this good and the current pandemic has put an enormous strain on all medical practitioners

I'd like to speak in praise of Norfolk's post stroke follow up. I was given a neat plastic folder with stroke association leaflets in it and had a visit very soon after coming out of hospital. A bit later I was part of a trial course for stroke survivers. I already knew most of it from having had the leaflets. It's evidently a post code lottery. I had the stroke in 2017 so I don't know what they do in covid country! 

I have had copies of letters that have been sent to my doctor about various consultations and they have frightened me so much with all the medical terminology I dont understand. They should not do it . I wonder if they really care how it affects nervous people like me. I hope you soon feel better. Norma.

Thanks Norma

You were lucky. This is the sort of thing that should happen but unfortunately doesn't in my area.

You were lucky. This is how it should be but unfortunately is not in my area. Thanks for getting in touch. All the best to you.

The week I was in hospital, I used my phone to do as much research on my stroke as possible. It meant that I was able to question the doctors and also look-up the terms they were using. I don't think without doing that, I would have had the opportunity to discuss my case as much as I did. The doctors were doing brief rounds sporadically, and had I not pressed them with questions would have probably rounded up their summary of findings and left me wondering. 

I was lucky, four weeks later, when I had a consultation with the head stroke consultant, he showed me the MRI scan and we had some time to go through it. I still have so many more questions and currently working out in my head, how to go about having them addressed. 

In my case, very little training for cerebellar stroke, in fact, I was misdiagnosed by doctors, paramedics, and the A&E. One of the doctors the following day after my stroke told me there was no injury to my brain. I might have been sent home had it not been for a cluey Ear, Nose and Throat specialist who thought to pursue my case further.

Yes similar experiance.

When I had my stroke last November I was in hospital for 5 days having the usual tests etc. When I was discharged I borrowed a wheelchair for my wife to take me to the car and like yourself a bag of tablets was handed to me and that was it. When  got home I also found the discharge letter with what had happened and that was it. Google came up trumps and manged to piece together what it all meant.

Since then its been much of a diy exercise even to the point of finally having to go private with cardiologist in September to confirm my AF that I have had since February and changing meds to inculde an anticogagulant.

That said my trip to A&E last week due to soaring blood pressure and a 2 day stay showed things have changed at our hosptial. Everything was explained to me at all stages even to the point of giving an explanation as to why my initial stroke was missed on CT scan until a radioligist looked at it again and sent me for an MRI the next day. It would have been good to have been told things at the time but perhaps there has been some changes over the months?

I live in Norfolk and had a stroke 3 weeks ago and felt I was looked after very well hospital. There was no follow up care after discharge I had to ask my own questions of the gp. I made a call to the Stroke Ass and received first class advice and promise of a call from regional group layer. They also took the time to offer reassurance to my partner too.

I live in Norfolk too. I had a stroke three years ago. I had good information from the hospital and a follow up. Perhaps things are worse due to Covid 19. Which hospital did you go to? Hilary

Thanks for your reply. Exactly the same initial experience as I had, but the Stroke Unit did contact me recently and arranged a phone call from the consultant for last week, three months after I left hospital. He gave a clear explanation of everything including all the tests I have had and the results, and gave me the opportunity to ask questions. None of the tests have shown what caused my stroke but they suspect it could have been an irregular heartbeat which caused clots that found their way from the heart to the brain. A short-term heart monitor failed to show anything so I am now waiting to go to the cardiology department to have a more permanent heart monitor fitted under the skin in the chest, to see if that will pick up any irrregularity, which they think could be spasmodic and very occasional. 

The consultant was very helpful, but as you say, it would have been good to have been told things earlier, before leaving hospital, and to have had the tests explained and told what they were for. The medical people don't seem to appreciate how alarming it can be for non-medical people who don't understand the terminology. Like you I went on the internet. I arrived home in the evening and spent a couple of hours looking up the wording they used, and a sleepless night worrying about it all. Presumably they are so familiar with it all that they forget that their patients aren't.

Hope things improve for you now you have had a better experience at hospital.


Im sorry to hear about ur experience.i had a mixd experience with my 2 tias but i was left feeling somewhat unsupported afterwards so i can relate to what u wrote.i

Thank you.

The ambulance got me to The Hospital within 30 minutes...I had my MRI within 15 minutes on arrival...30 minutes later doctor told me they were not going to do any treatmentBecause my brain cells were already dead...That was about the last time I had any information from any Doctors...I was discharge two days later and I still don't know what happened Or if there is something specific I need to check up...Having said that I am very happy and I am very lucky Yes I would just have to wing it from here

My experience was different to what you described. This may be to do with pressure on beds or the seriousness of the stroke.

At Epsom, there several therapists available, to assess the damage and to advise on recovery. I found this invaluable. I was handed a lot of information when I left hospital. The report was difficult to understand. I got feedback from a friend of the family to get insight on the meaning of the report. This helped a lot.

Support from a therapist was available for a few weeks after I left hospital. This was very useful.

There are some very scary articles on the Internet about stokes. I found the information from the Stroke Association very useful.

For me, it was important to understand what caused my stroke, also to understand how to reduce the risk of a repeat. 

The recovery process can take months, so it is important to understand what is involved. The therapists helped a lot. Doing too much too soon is not advisable!

My sister is a nurse. She filled in some gaps on the timing of the medication. She also gave advice on the recovery, a steady recovery is best. If your body is telling you that you have done too much, then this has to be understood and acted upon.

There are many potential side effects of a stroke, so it is important to know how to cope with each of them. The Stroke Association can help a lot.

I have found gaps in the care after leaving hospital, especially with my GP. One phone call so far. The hospital have been very supportive, with a comprehensive information pack.

I am sorry to hear about your experience. The hospital should have given more information and assistance. Have you spoken to the Stroke Association for advice? Is there a local support unit that you can talk to? There may be one, but you will need to be able to find them.

Sorry to hear that they were so fleeting in their post-stroke diagnosis. The more I hear from stroke-survivors, the more I am surprised at the differing amount of information received depending on which facilitity handles the stroke patient. My hospital staff had little knowledge about cerebellar stroke when I was brought in, I would like to think that now they are a little better informed. But it also depends on the chief doctor, had the consultant I have now attended my initial visit, I may have had half a chance to have had clot-busting medication on arrival. I was in hospital for a week, every time the doctors came around I had a list of questions to probe them with but I understand that not everyone has had that opportunity. I'm not sure about obtaining further information, I myself want to do this and am going to ask my consultant in Feb, how on earth I can chase up the cause of my stroke. The reason I think it is important, is despite the band-aid of blood thinners, I want to find out why it happened as I feel it is a crucial part of the recovery process, at least for me.