Nigel Hullah, Human Rights campaigner and Chair of 3 Nations Dementia Working Group shares his views on social care provision. This piece of work was originally done for the 3 Nations group.

“Despite 12 green and white papers and five independent commissions over the last 20 years, successive governments have ducked the challenge of social care reform.
Tackling the challenge of social care reform will require decisive political action and an appropriate funding settlement. Unless this happens, we will continue to have a system whose inadequacies undermine the NHS and leave many people without the care they need. Transformation is required to make the social care system fair and sustainable in the future

Hello, my name is Nigel I live in Swansea and was diagnosed with early onset dementia in 2012. I have and like many others in my position have, a stake in fixing social care. Whether this is in residential setting or my own home. My preference is for my own home I believe the aspiration of what every agency ends up with the responsibility of delivering my care, should be maintaining my independence and dignity, and encouraging social engagement which matches my preferences and cultural norms. It is a real worry for me where I will end up in the care process, when the time comes.

Maybe if we reform the planning process, we would be able to construct appropriate sustainable care strategy and not use a broad-brush approach where I would have to fit into a service, not the services fit around me.

Co-produced services are the road all agencies should travel, getting good intelligence of personal and family needs fully absorbing preferences, history, and cultural needs.

If we are serious about Teams around the individual and person-centred care, then this is the only approach that will work. This way a lot of concerns about the future of loved ones will help reassure and allay people’s concerns.

Unlike the NHS the residential care sector operates under a mixed ownership model, though most providers are corporate entities.

The delivery of home care is also shared between local authorities, independent providers, voluntary organisations, and private companies.

This can lead to a fragmented service not easy to navigate and sometimes impossible to start and engage with, over such things as an integrated Health/social care service.

We need to have a conversation of funding changes.

That the UK will have to spend more on social care over the next decade and beyond seems inevitable. The choices will be whether to increase funding on a pragmatic, step-by-step basis or seek more fundamental reforms. Options might include a hypothecated increase in the Rate of Income Tax, the introduction of a social care levy as a new form of social insurance as proposed by Holtham (2018), or a more root and branch restructuring of social care services to create a national care service. Whichever the chosen direction, the articulation of a route map for resourcing social care over the next decade seems essential. It is imperative that such a route map addresses the complexity and challenges of the current starting point.

Informal care provision is becoming an increasingly important dimension of older adult care. Even more important where Dementia is present. This contribution to care makes the largest but mostly unappreciated element of care delivery.

No social care reform will be valid unless the unpaid carers are given the recognition, support, and financial assurance that matches their contribution to the care agenda in the UK. Social care does not happen exclusively in care settings it is the web that weaves us all together. We all share the same space; we all have interactions and encounter people with different needs.

Despite the critical role played by the residential care workforce, social care remains a relatively ‘low paid sector; fewer than half of the personal care workforce are paid the Real Living Wage, and care home workers have faced a decade of no relative improvement in pay lack of skills training and a meaningful career pathway.

Alongside the unfounded notion that people drift into social care because, they lack the skills to do anything else. Low pay long hours a lack of investment in personal and professional development. And no defined career pathways should be addressed in any reform proposals related to social care

All care settings no matter where they are located, should be cathedrals to good care dignity and wellbeing.

The hardest award to achieve should be carer of the year. To often social care is delivered around organisations failures rather than quality of aspiration.

We cannot fix social care in the UK unless we deal with the challenges facing the workforce.

Good social care is very much like a tall tree Lots of different of leaves branches but the roots being all the same. Roots of Dignity, Choice, and Kindness.”