Information! What Information?

There I was sitting at home heading toward my 52^nd birthday and now a Stroke Survivor.

The really strange thing was that I really had no idea of what the hell that meant.

Studies suggest that somewhere around 120,000 people have their first Stroke each year in the United Kingdom with a further 30,000 having a second one. Of these 1:5 (30,000) will be fatal. In other words one every four and a half minutes. In the area of England where I live there are 1,000 strokes a year.

On a very rough and hugely unscientific survey, carried out by me amongst those fellow survivors I know personally it seems that most of these Strokes leave the Survivor with a range of deficiencies not so different to my own. I know a woman, in the village, who lives in the old peoples housing and must be in her late seventies or early eighties who had a stroke three weeks ago and is up and a bout. Unsteadily and with the aid of a stick but up and about. A more scientific study (produced by the Stroke Association) indicates that the average length of hospital stay post stroke in the UK was 20 days in 2010 which would allow for very many to stay for only a few days or less.

All this, unfortunately, adds up to a Stroke being a large part of what the National Health Service has to deal with. That being the case you would expect there to be a well oiled machine ready and waiting to burst into life.

Well, I got nothing! I found myself at home after two days in hospital with a bag of meds knowing next to nothing.

After leaving A&E not a single Consultant, Doctor, Nurse, Therapist or any other Medical Professional spent so much as a second explaining anything. There were many opportunities but they were all by passed. The Consultants were only interested in getting a diagnosis. The two more junior doctors I was put in the care of disappeared without trace. The nursing staff were only interested in taking my sats and getting drugs into me. The only people amongst the hospital staff were the cleaners and those bringing the food, who were all very nice and chatty but of no use when it came to Strokes.

The only information I gleaned about Strokes while in hospital was from a noticeboard on which was pinned a copy of some colour leaflets. Even without my history in marketing and having printed thousands of similar pieces of paper it was obvious that they were printed and meant to be part of a folder. I have not seen them again.

One of the things I craved after my Stroke was information and yet there was nothing coming from the very people and organisations I thought would not only be most helpful but would want to provide it.

I was discharged from hospital having been diagnosed as having had a Stroke with a bag of meds, the advice to get my Blood Pressure down, not to go to my GP, to and keep it at 145/90 and a copy of my “Immediate Discharge Letter”.

The letter, which was also supposed to go to my GP,  was full of long words and implications that it was my fault. There was no explanation of what had been found. As it turned out some of what it said was plain wrong or at least missed important information, but more of that in further posts.

There was no conversation about how I was to achieve the stated Blood Pressure target. Nor was there any discussion around any of the other risk factors: alcohol; diet; weight; exercise; stress. 

I was given no information regarding support services; either Health Service based or those provided by the Third Sector. I had no idea that such a thing as a Community Stroke Associate Practitioner even existed.

I was left with the internet as my only source of information and as we all know that is a coat of many colours. Some good and some bad! However I didn’t feel like surfing the world wide web at the time.

I have talked to almost thirty Stroke Survivors and they all agree that the information they received was diabolical to say the least. In this day and age that is nothing short of disgusting. There is no reason why a simple pack cannot be handed to every person who suffers a Stroke. But before that there should be a human being who is able to spend a few minutes explaining what has happened and what the Survivor might find happen into the future.

I have been told time and again that the deficiencies I had immediately after my Stroke was all there would be. Technically that might well may well be right but that is not what it feels like. After your Stroke you are not going to feel very well and as a result you are going to be resting and not using your body as you did beforehand. As you feel better you begin to use your body more and you come across other things you either can’t do or are having difficulty with. What the medics don’t realise is that every time it feels as if you are finding NEW deficiencies.

There should have been somebody telling me all these things: the good and the bad!

Having talked to a number of Stroke Survivors I know that what they really wanted was information. Without facts people tend to fill the space with whatever information they can which generally means that the space is not filled at all. What actually happens is that the black hole of non-information gets bigger and bigger.

All of which is utter rubbish!

All the information is out there and it is a disgrace that there is not a simple and well established routine that gives Stroke Survivors and their Carers everything they need to know.

One way round this impasse is for Stroke Survivors to be a part of the clinical team.

What do you think?