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The long road beyond recovery – my work with stroke survivors

Date: 31 March 2017

Category: Stroke services

On and off I’ve been working, now largely on a voluntary basis, as a community development worker with people who have aphasia (a condition that affects the brain and leads to problems using language correctly) for over twenty years. I aim to place communication support as close to the centre of policy development and everyday practice as possible. The impact is always modest but has cut across strategies in Hackney, Camden and Newham where I now help once a week at the Greenhill Aphasia Group.

My sense is that stroke-related communication disability has remained a highly individualised experience. There’s no equivalent really of deaf-culture, no common currency like British Sign Language. Meanwhile, communication support is a vital co-created activity whose social importance still largely outweighs its functional accomplishments. The consequence - particularly in the case of people with receptive aphasia - can be a kind of permanent displacement.

Back to work

A few years ago, for example, I provided some support to a young man who had had a stroke while studying in London. He had a visa but no entitlement to benefits and showed great tenacity in holding on to a part-time job as a cashier. But he wanted more suitable work which his employer was unwilling to provide. I met a job advisor with him who was neither insightful nor could offer anything practical. It was evident that what would be needed was a purposeful caseworker and a very sympathetic employer.

I chaired a small charity at the time and we took the young man on as a volunteer for several months before giving him some regular desk-based work at the national minimum wage. The director and the office manager were brilliant but, although he improved over a year or so, our young colleague’s work was error-strewn, often needed others to check it, and sometimes had to be redone. None of the schemes that purported to encourage employers to behave in this way were applicable. We just got on with it but we - and he - could have done with recognition.

“Can you hear me?”

More recently, I’ve been working with a woman now approaching 50, a single parent whose stroke took place before the millennium. She has become a lively conversationalist over the last decade but is unable either to read or write. Her receptive aphasia makes everyday planning difficult and she requires ongoing support to be a fully effective head of household. It’s proved a challenge to get such deficits reflected either in her care-plan or her benefit allocations. I find public officials largely treat a communication disability as a need to be met through the equivalent of language interpreting - as something which represents a temporary impasse to their discharge of responsibilities, along the lines required by the NHS Accessible Information and Communication Policy during an assessment or interview. Anything other than a safeguarding issue or a judgement about mental capacity is a secondary matter, the existential impact of disability set aside.

Navigating care

Those are just two examples of experiences which I think fall too far outside the current research agenda. Much more attention needs to be given to delivering the kind of qualitative and ethnographic studies that would bring them better into focus. Recently, a neighbour had a stroke. I helped his wife make one or two connections within the stroke services. The pathways worked well. His recovery has been significant, the treatment so much better than it would have been twenty-five years ago. But his wife has gone on to adopt the role of guide, protector and intermediary much as her counterparts in my Hackney carers groups used to do in the nineties.

As time goes by, life after a stroke is lived at an increasing distance from clinical practice or rehabilitation. Specialist services fade from view. Early adaptations become ingrained habits. An over-reliance on partners or close family members is treated as a given. Day to day public support lacks sensitivity to these long-term consequences of aphasia, which is a threat to the exercise of citizenship as much as it is to well-being and quality of life.

Roads to Recovery – the new NIHR themed review, has had my strong support. The sheer range of research, like the determined involvement of my colleagues on the steering group which has helped to shape the report, has been impressive. Let’s hope our social objectives can now start to match the history of clinical success.

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About the author

John Miles

Community development worker with older people, Kilburn Older Voices Exchange

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