“With dexterity issues together with learning difficulties in addition to my sight loss, I find it very hard to wear the mask and I have tried several times. It made me feel dizzy and uncomfortable when wearing it, so I took it off whilst I was on the bus. I am a cane user, but got verbal abuse from other passengers on my bus journey and I felt really distressed as I couldn’t find the words to explain why.” — A person living with learning difficulties, sight loss and dexterity issues
Working for National Voices on behalf of the 15 million people in England who live with ongoing health conditions or disabilities during this crisis, it is sometimes hard not despair. They have paid the highest price—not just in terms of morbidity and mortality from the virus itself, but in terms of losing most of their treatments, support services, and access to care, as well as their freedom to leave the house or hug a family member. And they will continue to pay the highest price as we move into a new phase: finding ways of living, working, schooling, and caring while the virus still circulates in the community (albeit at much lower levels than before).
“Welcome to the new second class; covid negative with underlying health conditions.” — A person who is clinically vulnerable to covid-19
It can be easy to feel despondent or angry. But sometimes, as I watch the news or hear a decision maker explain next steps, another feeling can surface. I can’t help but feel sorry for leaders during this period: Two meters or one? Face masks or not? End shielding or not? Schools, supermarkets, theatres, universities—there is no end to difficult, contested choices—the data are often not great, there are important arguments to be made for either side. It dawned on me early on that we needed to go back to basics to weather this storm, and to deal with this onslaught of new challenges. This is why some time ago, National Voices and other patient charities and organisations came together as a sector and reminded those in charge of the rationing of critical care of our shared values—values that will be undermined if we don’t see everyone as a person, but simply as a category of people whose rights can be curtailed.
The challenges haven’t got any fewer or easier. So a group of over 80 charities have come together with National Voices, setting out the basic principles we need to guide us through the next phase of the pandemic. These principles are:
- Actively engage with those most impacted by the change
- Make everyone matter, leave no-one behind
- Confront inequality head-on
- Recognise people, not categories, by strengthening personalised care
- Value health, care and support equally
We arrived at these principles after hundreds of conversations with charity colleagues, and people living with ongoing health and care needs. The science alone won’t tell us what to do, and neither can we rely on political tactics that will get us through the next press conference, but not the next six months.
“We don’t know what to do. We don’t know what to tell his school. We don’t know what to tell him or his siblings.
Not knowing is disempowering, disorientating and its an uncomfortable place to sit. This is made worse by confusing and inconsistent messages from the Government. We no longer feel like we have control or understanding of his risk or immediate future and feel excluded from decision making.” — A mother looking after a shielding teenager with a lung condition
We built the NHS over 70 years ago “In Place of Fear”. We now need to build a world, including health and care services, that allows people living with illness or disability to access the support they need, to remain connected to loved ones, and to take part in public life. A world with people and their rights at its centre.
“A local charity brought us few cooked meals and lunches, but this has now stopped. Where is the ongoing support?” — A carer supporting her husband with severe COPD, living on disability and carers’ benefits, in a house without a kitchen
Charlotte Augst is the chief executive of National Voices
Competing interests: None further declared
All quotes from www.ourcovidvoices.co.uk where anyone with ongoing health and care issues is encouraged to contribute their experiences.