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Practice comment

'Intensive therapy for stroke is humane and cost effective'

Why don’t stroke survivors who are severely disabled make a better recovery?

This question has concerned me during five years of caring, having been dumped unceremoniously into the job when my wife had a stroke. Some do recover. However, I have seen many who struggle, along with their stressed carers, and I think: “Wouldn’t they be doing much better with a decent course of therapy?”

One person who eventually made a dramatically good recovery from a life-threatening stroke was my wife Rita. During the first two years after her stroke, my attempts to get a community-based rehabilitation programme for Rita failed dismally and she made little progress.

Then, a group of eight health professionals assessed her. The conclusion? No capacity for recovery. A care home was recommended. Three months later, we arrived in South Africa for a holiday. To my astonishment, within three weeks, a practical rehabilitation programme for Rita was up and running. It was quick to set up, simple, inexpensive and effective. Rita showed distinct improvement within weeks. Her recovery was not fast, but steady. After 15 months, she was effectively cured of all disabilities except a short-term memory loss.

The team that achieved this consisted of a nurse, a physiotherapist, an occupational therapist and carers who spent four hours with Rita every morning. No rocket science involved. The nurse supervised and taught me how to care for the disability. The therapists set their treatment plans and each saw Rita once a week.

Rita received gentle therapy for up to two hours every day. This included a walk, exercises and, under supervision from carers, a range of household tasks. She was very slow and needed constant prompting to begin with but steadily improved.

After 15 months of this therapy, she enjoys doing all common household chores without supervision. From being mainly wheelchair bound she can walk five miles across the mountains of the Cape Peninsula. An unexpected bonus was her recovery from double incontinence; in the UK, we were told this was incurable. Concurrently with Rita’s response to the therapy, her incontinence steadily improved. After 10 months, it was effectively cured.

Why isn’t this type of programme readily available in the UK? My experience suggests the reasons would include: expense; too many stroke survivors and too few therapists; too long a programme - 15 months for Rita, compared with the three months in the UK (if patients are lucky).

These reasons miss a really important point - they concentrate only on the costs of providing therapy. They completely ignore the costs of not providing therapy, which can be substantial and long running. For many patients, the cost of therapy will be far less than the long-term cost of care.

The total cost of therapy and care Rita received is still little more than half the cost of keeping Rita in a care home for just one year. Our story is anecdotal but shows what is possible and how a better quality of life for survivors may be achieved.

David Guthrie

 

Readers' comments (4)

  • It's shocking to hear your story, which will be similar to all people suffering a severe stroke in the UK. Thrombolysis has helped many people who have suffered an infarct, as opposed to a haemorrhage, in recovering from more severe strokes. I have worked with people suffering from strokes (hospital based) and the frustrations over the years due to stroke not being a priority have been great. My father also had a massive stroke, so I have been on both sides of the fence. My father ended up in a nursing home, suffering for 10 months before he died. In our area there is a 6 week community therapy follow-up, hardly enough, is it?

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  • David, thank you for sharing yours and Rita's experience. Sadly I fear that it is not exceptional and not only a true illustration for stroke but also for other types of Acquired Brain Injury as well. Unfortunately, the statistics to prove how much money is wasted by failing to provide comprehensive neuro-rehabilitation post-ABI are lacking. Intuitively if you can reduce the support needed from requiring two carers to get onto a commode to one you have reduced the long term care costs by half for the life of that person.

    In the case of our daughter we have managed to ensure that she has been the recipient of an excellent rehab programme spending 8 months at a Regional Rehabilitation Unit, a year in a specialist Brain Injury Centre and is in her second of three years at a specialist college for the disabled studying creative and performing arts and regaining her independence and enjoying work experience in shops and restaurants as she inches ever closer to our goal of her becoming a tax payer. For a diffuse axonal injury with a month in ITU and no purposeful movement post ITU for two weeks, about 3 months post accident amnesia and a decomppressive craniotomy in ITU she was in lay terms very broken. She has made an astonishing recovery with a lot of hard work by her and her therapists, but it would have been easy for her to have been left aphonic, doubly incontinent, with hemianopia, and no movement on her LHS. She chose her parents well as we weren't going to settle for anything less than a fighting chance until there was no sign of improvement.

    The UK Acquired Brain Injury Forum (www.UKABIF.org.uk) has launched two manifestoes seeking to improve the provision of neuro-rehabilitation post ABI. So if you don't believe that the UK should settle for a sub-standard provision that increases the costs please visit UKABIF's website, study the manifesto and help to change things. You can also watch the show reel and see my daughter and the improvements she has made.

    Best wishes

    Peter

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  • i am looking for a rehab for my brother who is in South Africa wondering if i can get the name of the rehab which helped Rita.
    your help will be highly appreciated in this matter

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  • Thank you David and Peter for caring so much about our lack of rehabilitation for these poor people who have been struck down.How can we improve treatment here in this country when the NHS is at rock bottom, financially

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