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This blog post was published under the 2010 to 2015 Conservative and Liberal Democrat coalition government

Quality of life standards - the people decide

Posted by: , Posted on: - Categories: Care and support, News, Viewpoint

I'm the Chief Executive Officer for Changing Our Lives, a rights based organisation in the West Midlands. We've  worked with over 650 young people and adults with learning disabilities and autism to produce a new national set of Quality of Life standards, which the Department of Health's Care and Support Minister Norman Lamb helped us launch earlier this week.

"The standards are fundamentally different from other standards because they were written by people themselves and  talk about a LIFE, not a serviceJayne Leeson MBE Chief Executive Officer – Changing Our Lives
"The standards are fundamentally different... because they talk about people's lives, not  services." Jayne Leeson MBE, CEO – Changing Our Lives

The standards were commissioned by the Department of Health as a result of the Winterbourne abuse scandal highlighted in the Panorama programme, originally aired in 2011.

The standards, covering all areas of a person’s life - from where they live to where they work - are intended to raise the aspirations of those with learning disabilities and autism. They and their families will be able to speak out and take action if they feel they are not being supported and enabled to live as equal citizens.

The standards are fundamentally different from others because they have been written by the people they are intended to benefit - and because they talk about their lives, not just the services they use! They are based on the belief that people should not exist in a world of segregated services, but should be valued as equal citizens in the community, not seen as disabled first, but as neighbours, friends, employees, home owners and parents.

The standards are being used in a variety of ways. For example, teams of people with disabilities carry out person-centred Quality of Life audits, checking how their peers are being supported as equal citizens in their local communities. These audits link into local commissioning strategies and are used by commissioners to shape new markets based on local people's aspirations.

quality of life launch
Norman Lamb meets standard setters at the national launch

The standards are also used to both challenge and encourage professionals and community members to think differently about disability. This is achieved through a range of challenge events including ideas festivals and dragons’ dens - all led by powerful community leaders with disabilities.


Tell us what works for you!

We’re looking for great examples where these standards are working in practice; where people with learning disabilities and autism are living the lives the way they want in their local communities: working, having their own homes, getting married, having children.

You can contact us about this work by emailing:

In the meantime, find out more about the standards here.

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  1. Comment by les posted on

    sad people with LD still have to fight for these qualities in their lives

  2. Comment by Dr Felix Ugwumadu posted on

    It is interesting to talk about quality of life and performance standards when it comes to the vulnerable service users who may have different life challenges. I recall since the enactment of the NHS and Community care Act (1990), the sectors have developed and introduced a number of service frameworks with the aim to enhance services and on the other hand to empower users to normalise in the community. In some cases we have seen improvements within set milestones; otherwise most of the service frameworks and performance indicators were cosmetic and unachievable prepositions.

    On reflection, most of these standards were either designed or initiated by the political elites who feel they have inherited rights to dictate performance standards appealing to the vulnerable users. Similarly, out-sourcing local authorities’ care homes and budget constraints have undermined the rights and abilities of some service users to embed fully in the community. The homes are run for financial gains of which, performance and standards frameworks were mere “paper exercise” without strategic objectives e.g. “Care Cross and Winterbourne”. In contrast, majority of users have potential to design their own health and social care needs; and with the help of “Cash for Care” they are able to set performance standards for themselves.

    I think the red-tape syndrome and bureaucratic approaches within health and social care organisations are not helping service users to fit in well in the community.