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.