Exploring the patients' experience

Dear all, I am working in an acute stroke unit and I am looking to develop how we obtain and measure the experience of the patients that come through our unit. I feel this is an important area for quality improvement. 

I would appreciate any comments or suggestions on how I might begin to explore this. For example when would be the best time to ask patients about their experience? Would a questionnaire be useful or interviews or groups? 

Any views are welcome.

Many thanks in advance


Fiona, This work could be quite useful. I can only respond from my own perspective. When stroke hit, I literally fell over and had no idea what had happened to me. I was ‘out of it’ for at least five days, conscious but not very communicative or aware of what was happening all around me. That meant I was unable to judge the quality of anything. Once on a rehab ward, I became more aware of the quality of my care and how well staff dealt and communicated with me. After discharge, I was in a better position to reflect on my experience and particularly so after six months of being home. That’s my five penneth anyway.

Dear Fiona

Not sure whether you are looking at peoples experience whilst in the unit, or their experiences after leaving.

If it was me, I would need to establish a few lines of demarkation. eg When passed medically  fit or up to the consultants first outpatient review or up to formal discharge etc etc.

I have kept a diary of my progress. One thing that was not obvious, is that after about 18 months, I could no longer recall just what the early experiences were. Only by reading my diary could I recall stuff and even then, I couldnt really get back to grips with the experience.

My memory has been damaged and I dont know just what I might have forgotten.In the early days aphasia made it hard for me to deal with enquiries. Not impossible but hard.

Another big issue is that no two strokes are the same. So none of us have the same experience. Lots of us have many comon problems , but no two of us have the same.

I have observed that some SS will discuss how they came to have a stroke and what it was like, whereas this forum is for SS and should really only start with medical discharge.

There is also a rather high level of ageism. 

I knew nothing about stroke before stroke bit me. There is a huge lack of knowledge and understanding.

Only another SS can understand what a stroke survivor is going through.

There is so much to learn. Very pleased you are making a stab at some investigation. And I wish you good luck.


ps I had wonderful care from the stroke unit and have a very positive view of what they did up to medical discharge. The staff are fabulous.



Fiona, from a carers point of view I would say there should be open discussed with the patients consent throughout the stay at hospital. My dad had two strokes last year and his treatment and experience differed from both experiences. From a negative to a positive but manly due to us the family being armed with information thanks to this site and experience. I would be happy to discuss further if you want to private message me your email. 

Hi Fiona, 

I ask you to think of how the person will record their evaluation.  I was given a form that I needed to write my goals etc. But having had a left sided stroke and lost the use of my right hand, arm and leg for many weeks.  This was the last thing I needed to be reminded of. I could have completed the form online via my phone with ease.  I could talk for Great Britain still can. Sorry!

Also I believe it is essential to have an understanding of the person pre stroke.  For example language spoken and written.  Sight and hearing.  Use of limbs.  It has taken an awful lot of time and work for me to be able to write with a pen held in my right hand. 

Hope my thoughts are useful. 

Kind regards 



Hi Fiona

i think talking is the best way. With a questionnaire you will get an answer to a question posed by the person who wrote the question sndnot the person who suffered the stroke.

Talk and let the conversation flow. Every stroke is different and we all react differently, we are human. You would learn a lot and so would we.

I was looked after so well by both ambulance and hospital  staff, they were great. It was st home when things got difficult as close relatives didn’t understand and couldn’t deal with this life changing event. 

I would be happy to support any initiative.

Best Wishes


Thank you so much to everyone who has taken the time to reply. They are all really useful points for me to consider. I am currently researching patient experience and many of the tools are more questionnaire based as the NHS seems to favour a quantity over quality approach, also the more questionnaire based ones can be more easily measured and targets placed on them. 

I am really interested in learning from people is what things we can do to improve our service and even small ideas can make a big difference or there maybe many things which are frustrating / upsetting to people being treated on the ward which we aren't even aware of as professionals. 

Initially I would like to focus on our stroke unit, so people who are medically well and in the early stages of their rehabiliation so from 3 days post-stroke to around 6 weeks.  

From your feedback I think that simple conversations with people and their families about the quality of care they recieved and their ideas for improvements in an informal, relaxed manner is probably the way forward. 

My concern about asking people their opinions while on the ward is that they maybe anxious that any negative feedback might somehow impact the care they recieve. Does anyone have any thoughts on that? Obviously this wouldn't be the case and the feedback would be treated confidentially but it is a factor to consider. 

many thanks again for your responses, I will keep you updated on my progress and ask your views on what I come up with if you are happy to help.

best wishes

We would have welcomed someone asking us and dad his views on the ward. Although dad wouldn't have been able to communicate the first time his views clearly.