Getting our voices heard - Towards a new partnership between disabled people and health and care services
The King’s Fund and Disability Rights UK came together to explore what partnership
working between disabled people and health and care systems looks like
and how it could improve.
More than 50 people with and without lived experience
of disability and health and care sector expertise, as well as from a range of different ages,
ethnicities, genders and sexualities, took part in the project and contributed their insights and experience.
This included representatives from 15 Disabled people’s organisations (DPOs)
and disabled people working in health and care
(including in the NHS and local authority organisations).
Disabled people experience health inequalities and face specific barriers to accessing health
and care services, so it’s important for health and care systems to explicitly
think about how to include disabled people in engagement exercises
and the design and improvement of services.
Too often disabled people aren’t being involved or heard.
But DPOs are a key link into local communities and have specific expertise.
People and communities using health and care services are best placed to understand
what they need, what is working and what could be improved.
This is particularly important in the move to integrated care systems,
as organisations and services in local areas come together to collectively plan health and care services
to meet the needs of their population.
Based on what we heard, we’ve identified key themes for health and care organisations
and disabled people’s organisations.
To properly acknowledge and involve disabled people in developing services,
the health and care system needs to listen to disabled people.
- A social model approach is key. This involves understanding that the challenges disabled
people face are caused by the way the world around us is designed,
rather than by a person’s impairments or health conditions.
- Health and care leaders need to support their staff to understand disability better and
support disabled staff to bring both their lived experience and professional
experience to service planning and design.
- The health and care system needs to value disabled people’s expertise and prioritise
disabled people’s involvement by ensuring disabled people’s involvement is considered
at all levels, from the start of projects.
- Involving people meaningfully means ensuring that people delivering services share power
and work with people who use them on an equal basis.
These are the principles of coproduction.
Staff working in health and care at all levels need to understand these principles,
and leaders need to use the opportunities of integration and partnership working
to develop new ways of listening to people that explicitly include disabled people.
We also heard about ways DPOs could work to support their local health
and care systems most effectively.
- Working together with other local DPOs and user-led groups and building relationships
will help to strengthen their overall voice in the system.
- Local DPOs can maximise their impact by developing their knowledge of which parts of the
local health and care system they can influence and using relationships with other local
groups with similar aims.
-Supporting health and care staff to understand the social model and how to meaningfully
engage with disabled people, by building relationships with local staff,
can help to create positive change.
Both health and care organisations and DPOs can do more to take an intersectional
approach.
This means understanding no-one has just one identity, and ensuring disability isn’t
viewed as a standalone issue.
Disabled people come from all sorts of different backgrounds, ethnicities, genders and sexualities.
Where these characteristics intersect, it can make being heard even more of a challenge.
Heath and care systems and DPOs need to embrace diversity of voices, opinions and challenges
as an opportunity to think differently.
Both understanding the specific issues affecting disabled people and making links across other groups
facing inequalities gives opportunities to build solidarity, get a greater number
of people involved and ultimately have a larger impact.
Finally, local health and care systems and local DPOs can use the opportunities
of new integrated care systems and partnership working to develop
new ways of working together.
None of the issues raised in this work are new – and in fact in many ways things
have got worse for disabled people in the last decade.
So ensuring disabled people’s voices are heard requires constant attention,
until it is thoroughly embedded in business as usual.