Nothing about us without us

National Voices - The Hibbs Lupus Trust

We have joined the National Voices Charity and signed up to the statement of five principles which we believe need to guide decision making throughout the next phase of the of the Covid-19 response. 

National Voices is the leading coalition of health and social care charities in England. We work together to strengthen the voice of patients, service users, carers, their families and the voluntary organisations that work for them. National Voices has more than 160 members covering a diverse range of health conditions and communities, connecting us with the experiences of millions of people.

The Covid-19 crisis has been incredibly challenging for all of us. Leaders have had the unenviable task of having to make difficult decisions, with life and death consequences, in an unprecedented situation and with limited data. The stakes could not be higher. Meanwhile, all of us have had to live with the consequences of those decisions, including the loss of basic rights and freedoms. For more than 2 million people in the “extremely vulnerable” category, that has meant “shielding” through self-isolation within their households; many others considered “vulnerable” are self-isolating – seemingly indefinitely.

Until now, policymakers have been operating in crisis mode, as is necessary and understandable. But as the mists start to clear, and we shift from responding to an acute crisis into ongoing management, a transparent, accountable, and consensual approach is crucial. Nothing about us without us has never been more important, not least because, without it, trust is eroded, undermining long-term compliance with any new rules and recommendations, and in turn public health.

As a point of principle and accountability, decision makers must engage with those citizens most affected by both the virus and lockdown restrictions and understand how lives are lived by those who have ‘underlying conditions.’ We at National Voices, the leading coalition of health and care charities in England, have heard from hundreds of charities and people living with underlying conditions, and developed these five principles to underpin and test any policy change. They put people and their rights at the centre.

Read the full publication – Five principles for the next phase of the Covid-19 response.

National Voices Charity – www.nationalvoices.org.uk

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