Social care service user representatives need protection

Inappropriate comments by Dame Jo Williams highlight the difficulties faced by service users on committees

If, as the the tabloids have suggested it has been an outrage and agony for the Duchess of Cambridge to be illicitly photographed topless, then we must ask how much worse has it been for Kay Sheldon, board member of the Care Quality Commission, to be stigmatised as mentally ill by its chair Dame Jo Williams.

Appearing before the Commons health committee, Williams withdrew a series of allegations she earlier made about service user Sheldon’s mental health status. She apologised for her comments about Sheldon and for making them public without permission.

Sheldon was the only member of the board who had spoken out about alleged poor leadership in the CQC and has since been vindicated for doing so by the replacement of its chief executive and departure of its chair. Williams had been an ineffective chair of the CQC and member of the Dilnot inquiry into social care funding. But the issues raised by her inappropriate comments about a colleague’s mental health are much broader.

They highlight the difficulties that can always face service user representatives on official bodies and committees. While they have a particularly valuable contribution to make by virtue of their direct knowledge and lived experience of the issues under consideration – in Sheldon’s case, of the mental health system and its regulation – this can also always be used against them to discredit their impartiality and state of mind.

The fact that in this case Williams actually did this and sought determinedly to have Sheldon removed, requesting the then health secretary, Andrew Lansley, to do this, is a measure both of the vulnerability of someone in Sheldon’s position and how bad things had become on the CQC’s board. Fortunately the minister eventually acted positively and decisively in this case, retaining Sheldon on the board.

Yet as governments of all political colours have come to recognise, service user perspectives have an invaluable contribution to offer health and social care organisations and need to be available to them at every level. At the same time, as we have seen with current welfare reform policy, negative stereotyping and stigmatising of service users has become more and more routine, and government has itself been implicated in this.

Clearly service-user representatives in official positions need safeguards in circumstances like those faced by Sheldon. As whistleblowers in such powerful positions, they are uniquely placed to safeguard the rights and interests of service users and carers more generally. But it should never be the case that a service user is expected to be in this position on their own. This is the worst form of tokenism. There should be at the very least two such service users on a board like the CQC’s.

We must hope that this is one of the lessons that has been learned in helping the CQC face the future. Certainly other comparable bodies, like the Social Care Institute for Excellence, have demonstrated both the ability to adopt such a policy routinely and the gains that come from it. This government’s mantra for the NHS and social care has been “nothing about me without me”. When it comes to board membership and the inclusion of service users, they should perhaps revert to the plural version of this slogan when it was first coined by the disabled people’s movement: Nothing about us without us! This would certainly be in line with the new priority that the CQC seems to be giving in its new strategy and ongoing work to health and social care service users.