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Sliding doors – what can we learn from history to improve disabled people’s experiences of health and care?

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The King's Fund has a rich history of disability research spanning the 1970s to the early 2000s. Since that time, disabled people’s experiences of health and care, and of wider societal access, has changed rapidly.

There was a quarter century gap until The Fund’s next major publication – in partnership with Disability Rights UK – focused on disabled people’s experiences. But its findings were remarkably similar to those published in 1995: for example, a need for better involvement of disabled people in service design, and of better staff awareness and training about the barriers disabled people face.

Remembering and learning from the past is vital if we are to make sustained progress in tackling inequalities. Finding these reports made me want to understand more about the context of The King’s Fund work in the 1990s and what it might teach us as we continue to focus on disabled people’s access to and experiences of health and care. I sought out the disabled researchers who had authored those publications in 1995. After the amount of time that had passed this was not easy, but I made contact with two, who both agreed to share their experiences with me.

'Remembering and learning from the past is vital if we are to make sustained progress in tackling inequalities.'

Dr Jenny Morris and Geraldine O’Halloran have extensive experience and involvement in the Disabled People’s Movement through their distinguished careers in disability research and activism. But in the 1990s, both described their involvement in The King’s Fund research as new and innovative – particularly in a context where Deaf and disabled people were facing significant barriers to access and no legal recourse to demand fair treatment (the Disability Discrimination Act was not passed till 1995).

Initially, getting The King’s Fund onboard with disability research led by disabled people was not straightforward. Jenny described a slow process from the late 1980s, with some non-disabled people defensive or not understanding the issues and a feeling of ‘banging her head against a brick wall’. But once a person who ‘got it’ became involved in the wider programme of work, things got easier. Geraldine also reflected the importance of particular individuals’ roles, highlighting how Deaf and disabled people led the work – and also that there was a sense that this work was viewed by the organisation as important.

One story Jenny recalled seemed to illustrate well the ebb and flow of interest in disability at the Fund. On visiting The King’s Fund’s previous premises in Camden, she had her first experience of using an automatic opening door – an empowering contrast compared to the access issues she faced daily at the time. However, later when the Fund first moved to its current premises at Cavendish Square, that sense of access – both physical and social – diminished, and work with the Fund became less accessible again. Jenny and Geraldine continued to work and campaign on issues of disability justice beyond The King’s Fund. And disability equality in wider society did appear to be overall improving, through to 2010.

Today, however, that progress has stalled, if not reversed. From their broad involvement in the Disabled People’s Movement, both Jenny and Geraldine highlighted worsening situations, including increased difficulties accessing social care and GP appointments. Geraldine gave multiple examples of the additional barriers many Deaf, Deaf/blind and Blind people face when interacting with health professionals, with time-pressured medical staff not taking the time to explain procedures accessibly or allow for questions, and a seeming lack of understanding or awareness leading to poor staff behaviour toward these patients. And Jenny talked about how the shifts made in the 1970s, 80s and 90s that had an impact on social care policy and practice in the 2000s have been slipping further and further away.

So what role can health and care organisations play today? A first step for The King’s Fund was working with Disability Rights UK to publish disabled-led work that re-highlights the issues facing disabled people, in a context of the latest reorganisation of the NHS and social care. But a frequent message in our project was that none of the findings are really new – and wider work on inequalities also reflects that we already know much of what is needed.

Jenny highlighted how many groups within the Disabled People’s Movement struggle to keep hold of their history – particularly in the context of funding cuts and disabled people’s organisations closing down. While there are some great examples of archive work that share the history and experiences of disabled people, archival work specific to health and social care is not readily available – despite the fact that disabled people are most likely to need access to health and care services, and be disproportionately disadvantaged when this access is not available.

'Whatever we do, it’s vital that the work is designed and led by disabled researchers. Are we up to this challenge?'

Jenny and Geraldine both had suggestions for The King’s Fund’s role in continuing to serve and highlight issues disabled people face in accessing health and care services – for example, working in partnership with Deaf and Disabled People’s Organisations to hold, curate and disseminate the evidence that they need to influence health and care design in their local systems. Whatever we do, it’s vital that the work is designed and led by disabled researchers. Are we up to this challenge? What do you think The King’s Fund should be doing to improve disabled people’s experiences of health and care?