Fazilet Hadi, Head of Policy at Disability Rights UK, considers how Disabled people’s organisations can harness their power and expertise to improve how health and care services work with Disabled people.
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The bold ambitions of integrated care systems (ICSs) to improve population health and tackle health inequalities, coupled with greater integration of health and care services, should definitely be a golden opportunity to do things differently and better. However, if ICSs want to prove that this is indeed a new era, they will need to act quickly to involve groups experiencing marginalisation and discrimination, including Disabled people.
There are 14 million Disabled people in the UK, and we are major users of health and care services. We should have a significant voice in how services are prioritised, developed and delivered. Far too often we are solely viewed as patients, who need to be cured or fixed, with a sense of failure if we can’t be. Millions of Disabled people are living with impairments and or long-term health conditions. We need advice and treatment to be empowering, barriers to using health and care services to be removed and joined-up policies and services that tackle societal barriers, which limit our lives and life chances.
'We need advice and treatment to be empowering, barriers to using health and care services to be removed and joined-up policies and services that tackle societal barriers, which limit our lives and life chances.'
The King’s Fund and Disability Rights UK have undertaken research into what would assist positive dialogue between Disabled people and health and care systems, and provide important pointers to the values and activities that could lead to genuine engagement. Undoubtedly, the new ICSs need to challenge existing ways of working and re-orient themselves to face their communities, if real engagement is to take place. But what do Disabled people’s organisations (DPOs) – organisations led by Disabled people that advocate for rights, equality and full inclusion – need to do in order to play their part in achieving change?
There is no simple answer to this question, as DPOs find themselves battered by funding cuts and poor commissioning practice, and dependent on fixed-term funding. Indeed, many DPOs have not survived the massive cuts to the voluntary sector over the past decade. However, I know that the passion and commitment to change the world with and for Disabled people will motivate DPOs to make the most of the opportunities that ICSs present.
'I know that the passion and commitment to change the world with and for Disabled people will motivate DPOs to make the most of the opportunities that ICSs present.'
The following are four ways in which DPOs could improve dialogue between Disabled people and ICSs.
Ensure your local ICS recognises Disabled people as a group it needs to engage with. Ensure the ICS is collecting, analysing and acting on information about Disabled people in its area including population data, evidence of health inequalities and barriers to health and care services. A good first step could be to ask ICSs for reports they have on the circumstances of Disabled people and the impact of health inequalities.
Consider which bodies within an ICS are best to engage with, from groups with a strategic overview to local groups based in a place or a service. Discuss with Disabled members and activists how their capabilities, skills and interests can best be deployed, to influence strategic, policy and service change. This could involve discussing with DPOs and Disabled people which bodies within the ICS should be prioritised for input and engagement.
Work with voluntary and community bodies, in particular those representing other groups that are discriminated against, to raise shared systemic issues that need to be challenged and to establish engagement mechanisms and payment for participants. A good first step might be to contact voluntary sector umbrella bodies to ask that they convene groups experiencing discrimination, to identify areas of shared concern.
Ensure that Disabled people know about the new ICS and have information about how services are changing. Work with the ICS to support more Disabled people to understand how they can influence the wider system, as well as how they can influence change to clinical and service areas that most affect them. This might involve asking the ICS to produce information in a range of formats that explain the new health and care arrangements and how to engage with them.
DPOs already have a wealth of experience in how best to influence and work with health and care services and can learn from best practice and from each other. We need to signal the willingness of Disabled people to engage with ICSs and keep them true to their ambition to improve population health and tackle health inequalities. Let’s make the most of this new opportunity.
Our long read with Disability Rights UK explores how disabled people are currently involved in health and care system design, and what good might look like. It's available online, in easy read format and as a BSL video.