Attitude is everything

David Guthrie explains in his own words the challenges he faced when caring for his wife after she had a life-threatening stroke.

It‘s a little over five years since my wife Rita – then aged 69 – had a serious and life-threatening subarachnoid haemorrhage.

It was in the right hemisphere, above the right eye, her neuro-surgeon told me later.

Though Rita’s vocal and vision centres were hardly affected, pretty well everything else was.

For the first two-and-a-half-years we depended on the NHS for treatment, which I felt was wholly inadequate.

Rita made only limited progress and at the end of that period was professionally assessed – we were told she had no capacity for further recovery. (‘Put her in a residential care home,’ I was advised).  

After this prognosis, for the next two-and-a-half-years we relied on therapy provided during six three-month visits to South Africa.

All but one of Rita’s several disabilities are now effectively cured, and the remaining one is much improved.

The experience of acquiring rehabilitation therapy for Rita, including support for me as her carer, differed dramatically between the UK and South Africa.  

There must be reasons for this and I hope the contrast will be of interest to those involved in treating and caring for stroke survivors, as well as to survivors and their families.

Multiple disabilities

Our story began when Rita was sent home from hospital nine weeks after her stroke.

As an inpatient, Rita had three brain operations, two weeks in intensive care and a further seven weeks in recovery wards.

She came home with multiple disabilities and no organised plan for continuing treatment.

I became her full-time carer and was soon at my wits’ end, having no real understanding of her condition, no previous experience of caring for serious disability, and no real support from the medical authorities regarding how to care for serious and multiple disability.

I was told by hospital staff, before Rita’s discharge, that there would be ‘lots of help’ provided when she arrived home. This help was simply not forthcoming.

We faced a long and unsuccessful battle to try and obtain the treatment for Rita that all the guidance I read said should be provided as standard treatment – and the earlier it was provided, the better.

This lack of success was despite me speaking to, meeting or writing to more than 60 different employees of various NHS and social services.  

I also contacted several charities and received help from three.

The main success in Rita’s treatment in the UK was when our then MP persuaded the then primary care trust to give Rita a 12-week residential rehabilitation course at a clinic.

She made good progress, but I thought the therapists in the clinic did not spend enough time with Rita, even though what they did was excellent.  

I know now that this was an expensive way to provide therapy, compared with properly organised ‘care in the community’, and it was nothing like as effective as the programme set up in Cape Town about 15 months later.

During the last five years I have spoken to many carers in our region of the UK who commonly say that everything is a battle.

One has to fight for every bit of assistance, often nothing is available. Many carers give up trying, typically concluding: ‘You just have to get on with it yourself.’

Most carers are not equipped to provide proper care for relatives with a serious disability without considerable advice and training.

Most are certainly not equipped to provide effective rehabilitation therapy. Understanding cognitive dysfunction well enough to handle it sympathetically and dispassionately needs training.

Stroke rehabilitation

My conclusion on the state of affairs in the region where we lived is that there was a real lack of understanding about the aftercare and rehabilitation treatment needed for stroke survivors.

I’m sure therapists are well trained but they are accountable to managers. In our area, at least, they didn’t seem to be given the freedom to decide for themselves about how they should best treat their patients and for how long.  

The attitude to Rita seemed passive.

Many people knew that she was badly in need of help, but no-one came forward to offer that help; it was always up to me to push for it.

Perhaps there were insufficient trained therapists in our region, but I was never given that as an explanation.  

Now to South Africa. The original reason for taking Rita there was to be in a warm climate, away from the UK winter when Rita was stuck indoors for weeks on end and – in my opinion – badly needed fresh air, sun and exercise.  

I had been completely unaware that we might be able to access professional rehabilitation there, though we did have to pay for it, of course.

Following the negative prognosis, I had been intending to organise private therapy for Rita in the UK.

Those plans were quickly overtaken by what happened in South Africa.

I am certain the treatment there was much less expensive than in the UK, and it could not have been more effective.

Before taking Rita to South Africa, I had arranged for a carer to come in for four hours every morning while we were there, to help me look after her.

The carer organisation differed from those we had in the UK in that it was managed by five qualified nurses.

Two weeks after our arrival, one of these nurses came to undertake a short assessment, and said Rita needed rehabilitation.

She offered to find appropriate therapists to provide this. Within a week a rehabilitation programme was established. This included the nurse with an overall view of progress, plus two skilled therapists – a physiotherapist and an occupational therapist – who also assessed Rita and her disabilities themselves.

Substantial recovery

Everything was pro-active, all I had to do was watch in amazement and pleasure.

The therapists set their own plans and applied them with great enthusiasm.

I told them about Rita’s history and they were confident that Rita was capable of substantial recovery.

The carers were incorporated into the therapists’ plans and told how they could help so that, although Rita only saw each therapist once a week, she received around two hours of gentle therapy from the carers every day of the week.

We saw progress within the first few weeks.

Over two-and-a-half years Rita has now had six periods of rehabilitation while holidaying in South Africa.

Each lasted about 11 weeks (the length of our visits to South Africa being limited by 90-day visas.) Rita is now effectively free of all her disabilities but one, and even that one has substantially improved.  

Rita, now a star member of the 60 to 70 members of the small Success After Stroke charity, is often described as ‘amazing’.

She is also the only one who has received the rehabilitation programme described above, or anything like it.

My conclusion is that seriously disabled stroke survivors should be seen as capable of making a substantial recovery until proved otherwise.

The programme that benefited Rita so much simply required trained therapists who were also willing to advise less qualified carers on how to give periods of additional daily therapy.

I’m aware that long-term campaigning by the CSP, the Stroke Association and others has resulted in improved guidance about service provision for stroke survivors in the latest National Institute for Health and Clinical Excellence guidelines.

I hope that attitudes are now changing so that others have a better experience than Rita and I did.

I can do no better than recommend the straightforward, inexpensive and effective therapy from South Africa that treated Rita so wonderfully well. fl

Frontline Staff

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