According to figures from NICE, close to 200,000 survivors of traumatic brain injury are discharged from rehabilitation each year to ‘the community’, a large number of them with enduring disabilities. The number of people surviving stroke each year is similar. The truth is that what constitutes ‘the community’ in Britain isn’t strong enough to provide the safety net these people need. State provisions don’t or can’t prioritise support in the long term. The use of quick fixes and band-aid solutions perpetuates inappropriate provisions, medicalises problems that are social in origin and wastes public resources (based on official figures, the public sector currently spends around £13billion a year on rehabilitation and care of adults with brain injury). Meanwhile, debate around real innovation is stifled and the prospects for survivors in the long term remain bleak.
Many survivors will return to their former lives without significant challenge or adjustment. They will go back to work, resume their family roles, and return to the hobbies and social calendars that constituted their communities before injury. But for those with more severe injuries, those who have spent time in coma and rehabilitation, who have been out of the loop for longer, the community they once knew may no longer exist. Family relations may have broken down, friends may have moved on, and employers are rarely equipped for the challenge of supporting a former employee, now disabled, back into the work place. For these people, ‘the community’ becomes a desolate place, a term that refers only to a history, to an absence. For many survivors, the impairments they have acquired may also limit their ability to construct a replacement for what they have lost. London is a place of transitory population, of social networks stretched across great distances, of opportunities for contact organised around complex transport systems. For those of us who are ‘able’, this terrain is at best intermittently hostile. For people living with physical and cognitive impairments it is more-or-less impassable.
So what about the neighbourhood? What neighbourhood? Our capital is a place where the neighbours of traumatised children can say they were worried something was wrong without anyone being surprised they didn’t act on their concerns; where elderly people pass away and remain undiscovered for days on end. This redundant formulation of local engagement leaves us with only the state to look to. Politicians collude with us in the notion that state agencies might somehow provide us with ‘social care’, with all those things we are failing to provide each other. We struggle on, examining the errors of the model, placing our hopes in renewed 'efficiency' or enhanced regulation. We sack council employees for failing to protect our vulnerable loved ones. And, with the dawn of Personalisation, we turn to ‘choice’ as our new saviour, thinking the emancipatory power of the free market might, this time, solve our problems. We see a future in which the lonely, the disabled, the mentally unwell, are given funds to pay for their own ‘care’.
Survivors of brain injury are not the only people who struggle with finding and maintaining community but they are a group that feels this lack acutely and wants to do something about it. Here at Headway East London we try to help people rebuild what they have lost through occupation and social inclusion. We take seriously the question of what survivors can expect after discharge from hospital, of what to do when ‘the community’ fails them.
Few would argue that there is a problem. But ready solutions are scarce and agreement hard to come by. The first step, surely, is to stop hoping the problem will go away of its own accord, to look at the situation as it is, and to sit down together and have a conversation.
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