E-Physio Associates Ltd
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E-Physio Associates Limited - Patients' Stories

Lets call him George
Born 1948 and suffered a major stroke in November 2007
Quite active 59 year old Gas Fitter/Plumber, was a moderately heavy smoker and liked the occasional beer and/or vodka and tonic. A very good sense of humour and a generous and kind man. Enjoyed our life with his love of gardening, going out for meals and 3 or 4 holidays a year since our son had grown up and left home. Hardly ever unwell apart from occasional ‘man flu’ and only been to the doctors about 5 times in over 30 years.
 
How it started

Went for routine eye test in May 07 and was referred to his GP. Found to have very high blood pressure, one reading was so high the GP made him sit in the waiting room for half hour while he kept checking it. GP had already checked it in February and it was 130/80 so it was a bit of shock to find it was so high in such a short time with no symptoms. Attending GP’s regularly from June to November 07 and GP kept adding new medications but BP was slow to come down. GP did not give any other advice but just kept adding more medication. Pharmacist was concerned around July/August and asked George if the GP had given him any advice, a diet sheet, dietary advice, referral to smoking cessation or referral to a specialist, he hadn’t. At the beginning of November the GP added yet another drug and was asked to go back in 2 weeks, he was unable to get an appointment so I phoned the following week to get the earliest one I could as he wasn’t feeling 100% and getting continued headaches. Arranged for evening of 20 November 2007. After discussing things with George we agreed that I would go with him to the next appointment as I felt it had gone on a bit too long just adding more drugs. I was getting worried and was going to ask for advice and referral to a specialist. The last thing on my mind was the possibility of a stroke. Around 6am on Monday 19 November 2007 I thought I heard George go off to work then a little later I thought I heard him downstairs so went n to check. Very unusual for me as I am not a morning person and don’t usually stir til about 8am, very rare for me to hear anything before the alarm. I came downstairs George was sitting at the kitchen table looking a bit odd. When I asked him if he was OK he said that he couldn’t remember how to make a cup of tea and didn’t know if he had one or not. He said he had driven off to work and came back as he just didn’t think he could do it. Said I would make tea then get dressed and take him to the doctors or hospital. I was filling the kettle and turned to speak to him and he just keeled over off the chair onto the floor. I called an ambulance immediately, I knew it was a stroke and was trying to reassure and comfort with one hand and the phone in the other. Ambulance arrived within 10 minutes and during that time he was struggling to get up off the floor. Doctor said he had suffered a major stroke to the left side of his brain, he was not expected to survive and if he did then it was likely his right side would be totally paralysed and he would have no speech and possibly suffered brain damage. After about a week of him pulling out nasal tubes and drips and trying to get out of bed and also showing he could use his left hand, he was eventually transferred to the Stroke Unit. Not as good as I would have liked with occasions where his drugs and alarm buzzer were left out of his reach, often he didn’t have his glasses on so couldn’t see anything and wasn’t attended to promptly if he needed the loo. He didn’t have any use of his right hand or arm and all he could really say was no and various swear words.
Treatment
Physiotherapy started after a week or so but he wouldn’t co-operate, often pretending to be unwell or in pain. He was only allowed thickened food or drink so not surprising that he didn’t really hold out much hope or see the point of even getting out of bed let alone physio. Anyhow, I was invited in to the sessions as they could not force him but my presence and encouragement could help. It did, within several weeks of 5 daily sessions per week he was walking with a tripod and support from 2 physios and also able to lift his leg a little, he could also move his arm just a fraction as it rested on a pillow to support it. He was only allowed 12 weeks on the stroke unit and transferred to a rehab unit for a further 6 weeks in Feb 08. That was supposed to be intense rehab but wasn’t, lucky if he had an hour a week physio and half hour a week OT and speech therapy. However, he came home end of March 08 and whilst it was initially difficult he has continued to improve. NHS services have been very lacking. The first 6 weeks home he had daily intermediate care of physio and speech therapy there was nothing. No one to advise or help except the GP who wasn’t particularly helpful or knowledgeable. We had to ask the GP to arrange speech therapy and physiotherapy and then found they both had long waiting lists, nothing specialised for stroke recovery patients. After regular exercise and therapy it was hard to watch him just sitting in his wheelchair doing nothing when he had made such good progress and was motivated doing his physio exercises. There was so much potential and motivation and it wasn’t too good when we found the wait for Neuro Physiotherapy had gone up from 18 weeks to 36 weeks. As we had no idea how long the wait was for NHS speech therapy as the local PCT didn’t have one on staff, we found a private one. It therefore made sense to do the same for a private neurophysio. Bit of a minefield looking on the internet so found those that did home visits and checked their credentials with our private healthcare - they would only approve two of those listed and they also had a limit on how many sessions and costs etc, they would not cover any other rehab like speech therapy. We decided that we would try them and see how it went and if necessary pay ourselves rather than just sit waiting for the NHS. One of the best things we have done. Much more personal service with home visits and use of things in the home that could help with exercise and also encouraged motivation. Progressing continues and he can move his arm more and lift his leg and bend his knee and walk with a stick some of the time. Searching for continuing rehab has been very difficult but did find out about an outreach rehab service for brain injury that has a contract with our local PCT and were able to do a self referral. They have been coming for about a month and teaching ways to do things for himself more, to give him more independence and not be reliant on me or his carer who helps him shave, shower and dress in the mornings. His speech is still limited but his intonation and gestures are getting really good that its now not so difficult to understand what he wants or is trying to say.
Conclusion
If I had to give any advice to anyone in our situation I would have to say find out as much as you can as soon as you can about what is available and how to get it and what the waiting times are. All that is best done while the stroke patient is still in hospital as time gets very limited when you are home. Basically be a bit of a nuisance so that you have as much info as possible. Check with your local PCT, ask the ward about carers meetings, contact the stroke organisation and see if they have a local support worker or suggest someone who can give you advice. Above all, don’t just sit there waiting for ‘them’ to sort things out and tell you – be proactive and do as much as you can, you will feel better if you are doing something and not sitting waiting for someone to tell you as that may be a long time coming. Would also add that I was not aware that people with high BP should limit air travel, really didn’t know that and very peeved that GP did not advse We have been fortunate in that the private therapists have been great, very motivating and encouraging and helpful in so many ways and am so glad of their input.
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