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.
Nothing about us without us: Five principles for managing the next phase of the Covid-19 pandemic
1. People have a right to be consulted about changes that profoundly effect their lives. People most affected by service cuts, lockdown, self-isolation and difficulties with accessing food and medicine need to be heard and their experiences and concerns acted on. Policymakers must base decisions on a deep understanding of how people and patients are affected. Proper co-production must be the cornerstone of policy design and development as we are making decisions for the longer term.
2. Everyone matters – all lives, all people, in all circumstances. Whether your life is normally unaffected by health issues or you struggle every day with your ill health or disability – your life matters equally and needs to be weighed up the same in any government policy. It is essential that decision-makers signal that they want people living with ill health or disability to lead full lives and remain an active part of society. Even if some people need to live with more severe restrictions, we must take steps to ensure they are able to work, earn money, access clinical care and socialise. We must move through this crisis together and leave no one behind.
3. We’re all in the same storm, but we’re not all in the same boat. Mortality and morbidity are higher for those living in poverty and working on the frontline. People from Black, Asian or minority ethnic backgrounds are disproportionately affected. Life in lockdown is harder for those living in overcrowded or insecure housing than it is for those in spacious homes with outside space. There has never been a more urgent moment to confront the social determinants of ill health as we rebuild. All policies to manage the next phase must recognise these stark inequalities, taking a proportionate universalist approach.
4. We need a personalised approach to how people want to live. Vulnerability should not mean blanket bans. Having a learning disability does not in itself mean people will have a short life expectancy or poor quality of life; people in care homes are not simply waiting to die. Not everyone over 70 prioritises safety over family contact. The category of ‘vulnerable’ needs to be rethought and broadened beyond narrow clinical criteria to include more holistic circumstances that can make people vulnerable, such as domestic violence, poverty, disability or overcrowding. Personalised care is essential to safety and dignity.
5. People living with ill health or disability need more than medicine. They need care and support, connection and friendship. Social care, charities and communities are part of this vital, life-enhancing fabric of life. The siloing, underfunding and neglect of social care, its workforce, users and purpose as a life-enhancing public service has to end. Communities and charities and need to be enabled to take part in the design and delivery of future care models. Any policy efforts to rebuild services need to actively address and dismantle barriers between sectors that only ever mattered to funders and regulators. The future will be different. Let’s make sure it will also be more compassionate and equal, with people’s rights at its centre. The many people who died, who lost loved ones, or whose lives have been made immeasurably more difficult deserve nothing less.
Read the full publication – Five principles for the next phase of the Covid-19 response.
National Voices Charity – www.nationalvoices.org.uk