Stroke rehabilitation: your stories of aftercare

Health watchdog the Care Quality Commission has warned that patients in England who have experienced a stroke face a postcode lottery over the rehabilitation and aftercare they are offered.

The regulator has called for immediate improvements to be made after reviewing the performance of the country's 151 primary care trusts.

Its researchers found that patients often faced delays in being seen while some areas failed to provide services at all.

BBC News website readers have had a variety of experiences around their aftercare.

Alisdair Gibbs-Barton, Blyth, Northumberland

I had a full stroke three years ago which weakened my entire right side of my body.

Image caption Alisdair Gibbs-Barton is among those who were surveyed for the research

I spent a week in an acute ward at Wansbeck Hospital and then six weeks at a stroke recovery unit in Morpeth. While I was an inpatient, they arranged for certain modifications to my house, but it was after I left hospital that I found everything changed.

Initially I had to have physiotherapy twice a week for three months, while I had just one visit from my local GP.

I got called in for stroke reviews - where they reviewed my condition twice a year and then once more a year after that but I have always thought that these were a bit of a "box-ticking exercise". I want to stress that I had no problems with the individuals as they were fantastic, but the system wasn't.

I also think part of the problem is that you are bombarded with too much information too early on in the treatment. Being told about benefits when you're in hospital isn't useful but would have been better when I was discharged.

I think there is also a problem with the rhetoric used for people like me. I don't like the term stroke survivor. I think once the word patient is removed from you, you become lost from the system.

Luckily I'm computer literate and so could still use my other arm to log on and see what resources were available to me. I was also a civil servant and had family and friends to help me, but I don't know how people who are alone cope.

Afterwards I volunteered to join a stroke panel - which is how I became involved in the Care Quality Commission survey. I wanted to give something back.

I am now the Mayor of Blyth - it's a role I took on after having my stroke - so it shows there is life afterwards.

Chris Goodwin, Whitchurch, Shropshire

I was 48 when I had a stroke in November 2006. I woke up in the middle of the night and was walking to the toilet when I fell over suddenly. My wife Diane realised it was a stroke as half my face had fallen, and so she called the ambulance.

I was in hospital for about seven weeks. First I was treated in hospital in Shrewsbury before I was moved to a community hospital closer to my home. My treatment was quite good there as it was local people treating local people. It felt very personal and they helped me walk again.

When I was discharged I had a physiotherapist and occupation health worker come and check how I was but in hindsight I realised my aftercare wasn't as intensive as perhaps it should have been. At the time I didn't know any better, so thought it was fine.

My employer kept me on for two years after my stroke and so, as part of my contract, I had access to private physiotherapy. I would use that to supplement the NHS care I was getting and it had a real benefit. I would get a set amount of physio sessions on the NHS but the private care meant I could top up, which obviously helped.

When I left my job and lost the private health care, I found it frustrating as I knew I could be doing a lot more but just didn't have access to the resources.

I do worry about the effect this has had on my wife - a stroke changes your life. One of the main problems we've found afterwards is that it's not just income you lose after having a stroke but your independence - so it's essential to have a strong support network in place.

My wife and I didn't get offered counselling for three years and that's something that needs to be considered more - it's a lot of stress for carers as well as those who have had the stroke.

Colin Peacock, Sutton, London

I had a stroke two years ago which affected my right hand side of my body. My upper right arm is still very weak.

I was in hospital for five days and then, when I was discharged I stayed in bed at home for a further four weeks. I just couldn't do anything.

The care I had was quite good. It was professional and I had access to a lot of services. A specialist came and assessed my home and made sure it was suitable for me. I also had speech and language therapy.

I also had to go to a specialist day unit where I was encouraged to talk and socialise.

But I have a real problem now with short-term memory loss. I can remember what happened two years ago but anything more recent is more difficult.

My primary care trust - Sutton and Merton - has been good at giving me the aftercare that I need. I've had reviews and help. But I know there is a battle here for people who have had strokes. There needs to be consistency all over the country. The standard of care I have received needs to be rolled out elsewhere.

I'm lucky as my wife is a community nurse and she has moved heaven and earth to support me.

Gary Lee, Banstead, Surrey

I had a minor stroke to the rear of my brain in June last year and spent four days in hospital.

At the time I was also in remission from cancer I had at the base of my tongue but I found that the way I was treated as stroke patient differed to the way I was treated as a cancer patient.

When I was discharged from the hospital, there was no proper aftercare support for me. I kept having to call the hospital and after a few months - in October - I got a phone call one evening from a consultant. But the attitude was 'What do you expect us to do about it?'. I went to my GP as well, but it was no use.

My wife collected some pamphlets and we were given a package when I was discharged but no explanation about what to do with it. I was even given drugs but didn't know what they were for.

I just think I was passed through a system which involved boxes being ticked off.

After my cancer, the hospitals wrote to me but with my stroke there was nothing.

I am a supporter of the NHS but there was no backup in my case - no cohesive plans in place to help the patient.

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