David Oliver: The drama of navigating social care

Jimmy McGovern’s recent BBC One drama Care was watched by millions and much commented on by the media.12 The show hit a nerve with viewers and reviewers who’d faced similar issues in their own lives.345

Alison Steadman played Mary, a mother disabled by a stroke and vascular dementia. Sheridan Smith played Mary’s daughter Jenny, a woman with work and childcare responsibilities of her own, who was battling to get her mother the care she deserved. In doing so, Jenny faced a disjointed, bureaucratic, short staffed, and sometimes seemingly uncaring system.

The drama had a happy ending of sorts: NHS continuing care was agreed and free to access, and Mary moved to a good care home. The threshold for obtaining continuing care is higher in real life than in the drama,67 and care home places are increasingly hard to source even when funding has been agreed.8

Responses on social media showed that some health and social care staff working with older people were, quite understandably, upset by what they saw as inaccurate representation of their work.9 They were also upset about being portrayed as uncaring and cold, rather than as victims of an underfunded, understaffed system under pressure. Good people with the right values can find themselves working a system with rules and processes that are anything but person centred and good.

Reactions in mainstream and social media showed that many relatives and unpaid carers for older people identified from their own experience with the story. Previous evidence given to the State of Caring UK report,10 or reported by the Richmond Group of charities11 or to Health Watch England,12 has highlighted similar harrowing experiences for unpaid family carers and frail older people in need.

When speaking to audiences of health and care professionals I often ask them to raise their hands, and keep them raised, if they have been advocating for an older relative and have found it very difficult, despite knowing the system from the inside. They rarely put their hands down.

A recent joint report from the King’s Fund and Health Foundation, based on detailed focus group work with the public, showed general bewilderment at the social care system.13 Most people have a reasonable working knowledge of the NHS yet know little of social care until they have to use it. They are then surprised to discover that it is means tested, heavily rationed, and based on passing a threshold of need; that part or full payment is often required, and that charges are so high. They don’t understand why some needs come under the label “healthcare” and are free while others, such as dementia, come under “social care.”14

A recent focus group report showed general bewilderment at the social care system

At the time of writing, many policy decisions of national importance have been put on the backburner because of continuing Brexit uncertainty. The social care green paper is one casualty of this: originally due to be published last summer,15 it is yet to be published.

Whatever we decide to do about the funding and delivery of social care, we have a huge job in explaining the social care system to the public and allowing them to prepare for when they may need it.