Sue Ryder and Demos call for Democratic Revolution in Care Homes

19 October 2011

Leading health and social care charity, Sue Ryder, is calling for a democratic revolution across the nation’s care homes – introducing bold new management structures that enable decisions to be made by residents, for residents.

The charity is making the call on the back of a report being published today by leading think-tank Demos, which examines the future of personalised care in Britain. The report argues that care homes should introduce democratic processes that enable residents to truly take control, and become involved in management decisions ranging from the hiring of staff to the decoration of bedrooms. Sue Ryder believes care homes across the sector already involving residents in this way should be held up as good examples, and that their approach should be rolled out across the UK.

The report represents the most up-to-date and comprehensive account of how personalised care can best be delivered against a landscape of local authority belt-tightening and changing NHS structures. It follows on the heels of the Government’s recent announcement that personal health budgets would be made available for all eligible care-users by April 2014. The report argues that if truly personalised care is to be delivered, the Government and the NHS must look beyond the roll-out of personal budgets, and address other key areas where individuals’ independence can be increased.

The ethos in care homes should be one of ownership, suggests the report, where a powerful residents’ association is tasked with sharing the running of the home, as active members of a community might do in housing associations. Some providers, both private and third sector, have introduced bold and pioneering policies in this area; Sue Ryder is calling for the whole sector to adopt this approach.

The report also concludes that:

Care homes should be democracies. Many people living in care homes feel they’ve lost any control of their lives. They should have the right to make decisions about how their homes are run; democratic structures and processes should be introduced so that homes are governed for residents, by residents. A full-scale democratic revolution is required.

Giving patients the purse strings doesn’t necessarily mean they’re in control; and sometimes it can be ineffective and counter-productive. Giving people “personal budgets” to manage their own care, the central tenet of the Government’s care strategy, should not be seen as the be-all and end-all in handing them back control over their lives.

Choice and personalisation is especially crucial in End of Life Care – quality, specialist palliative care needs to be for the many, not the few. Some patients with complex needs are extremely well cared for in hospice settings; having their final wishes met, getting dedicated care, and being looked after in a personalised way. Far too few patients are encouraged to make Advanced Care Plans, and many who do are not given the flexibility they require in case they change their minds as they near the end. And despite the fact that three out of five patients say they want to die at home, only one in five achieves this.

Health, social care and housing services need to work together better, to stop vulnerable people falling through the cracks. Too often, vulnerable people are let down when their health provider doesn’t work effectively with the service providing their care or their housing, leading to frustration, long waits, and a failure to deliver vital services. Local services like GP surgeries and Council Housing Departments should be required to build relationships with one another, and this should be overseen by NHS Health and Wellbeing Boards under NHS structural reform.

The “personal touch” should be more than just a slogan – it should be policy. High turnover of care-home staff must be avoided, and carers should be recruited with a mind to how they would be paired with particular care users; ensuring people know, trust, and have a relationship with the staff that care for them. The cliché that “the little things are the most important” is, in most cases, very true.

Steve Jenkin, Director of Health and Social Care at Sue Ryder, said:

“We need a true democratic revolution across the nation’s care homes, building on great work being done in some quarters and ensuring decisions are made by residents, for residents. Personalisation is about more than giving people the purse strings. It’s about recognising all of the areas where we can pass control back to care users, and ensure they are given back their independence, autonomy, and quality of life. Demos’s report is the most up-to-date and comprehensive account of how personalised care can best be delivered in challenging political and economic conditions”.

Claudia Wood, Head of Research at Demos said:

“Personalisation isn’t just about handing over cash. The government’s personalisation agenda is dominated by the presumption that personal budgets are the only and most affective vehicle for personalisation. Personal budgets are life changing for many, but our research shows that they don’t always guarantee person centred care. We must remember they are one of several routes to personalisation, and until we put equal effort into the alternatives, we will never achieve an inclusive agenda – one where personalisation can be enjoyed by everyone, regardless of the financial vehicle they use.”

~ ENDS ~

Download the DEMOS report

For further information, please contact Nina Kapur at Sue Ryder on 07789 558 549, or Dan Dolan at With PR on 0777 137 4925.

Notes to editors:

1. The Demos Report “Tailor Made: The Future of Care for those who need it most”, has been sponsored by leading health and social care charity Sue Ryder.

2. More information on Sue Ryder can be found here: http://www.sueryder.org/

3. More information on Demos can be found here: http://www.demos.co.uk/

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