Never again: why we need the Care Supporters Bill
Nicci Gerrard, co-founder of John’s Campaign, writes about our joint call for a legal right to a Care Supporter
24 August 2023
The Care Supporters Bill would ensure a person in need of support would have the legal right to be accompanied by their care partner wherever they are in the care and health system. This legal right means that we as a society could say: never again. Never again will someone have to die alone while their loved one is denied access. Never again will someone with dementia starve themselves to death in a residential home because they don’t understand why their family have stopped seeing them. Never again will someone with multiple disabilities have to communicate by FaceTime or Zoom with those who know them best. Never again will isolation for weeks and months on end be deemed acceptable, even when that isolation can be fatal. Never again will sorrow, loneliness and profound trauma be imposed on so many individuals in the name of collective safety; will families be left with such a burden of grief and guilt; will someone at their time of greatest need be denied contact with the very person who can give their life meaning. And never again will we be a society that gives the right to the state and to private institutions to separate individuals from those they love and need.
Dorothy was denied all contact with her family in hospital and care home. She stopped eating and died. Her doctor told her husband 'It was the only choice she had left to make'.
Julia Jones, Helen Wildbore, Nicci Gerrard, Jenny Morrison, Kate Meacock and Diane Mayhew - calling for a right to a Care Supporter, Westminster, 6 June 2023
The Department of Health and Social Care has run a consultation on visiting in care homes, hospitals and hospices, and of course we welcome their recognition of the value of visitors. But a care supporter is not a visitor. There is a difference between what is hugely important and what essential. We’ve all seen the shop signs that make an exception for guide dogs; a pet dog is a comfort, a guide dog something on which a whole life depends. Care partners are essential, a vital part of the team of support around a person, and they have a vast number of roles, both physical (helping someone eat, take their meds, keep mobile) and emotional. They can be the interpreter, the memory, the advocate, the voice, eyes, ears. They can be our home when we no longer have a home. They can speak for us when we cannot speak for ourselves, help us understand when understanding is a struggle, help us make decisions and maintain dignity, help us to stay alive, and be with us at our ending. They are the safe place in a scary world.
Maybritt’s husband took her to hospital after she had a mild stroke, but was then excluded from her care. Her first language was Norwegian and she felt deeply confused and abandoned. She suffered her final fatal seizure as he stood outside the ward door with the nurses rushing by.
The Bill is being carefully drafted, with the help and advice of legal experts. It will give a legal right to a person in need of care to unrestricted, in-person support from at least one essential care partner (and the role of care partner can shift between those who are important to the person receiving care). This statutory right is not in the hands of a particular institution, but granted to each of us by law.
“[I felt] Like I wasn’t her mum. Like someone else was raising my baby. Like me and her dad weren't important enough to be there. All of the 'firsts' I should have been able to do with my baby were taken away from me.” (Mother of a premature baby born in April 2020)
It will be the duty of the provider to facilitate contact with the care supporter wherever the person is and however their care is funded. After the shifting incoherence of the many guidelines issued during the pandemic, it gives clarity to the providers in any future crisis. The duty will be monitored by the regulator, and restrictions on the right will only be permitted where it is proportionate, and necessary to protect them from a known and immediate risk of harm. Even when a restriction is imposed, it will be the duty of the provider to facilitate an alternative means of contact, and an alternative care supporter. Nobody will have to suffer enforced isolation. Any decision to restrict a care supporter will have to be notified to the regulator, and an appeal against must be swiftly heard by someone not involved in the original decision. This will be a legal right, with legal teeth.
Daniel has young onset dementia. When he was sectioned and placed in a specialist dementia unit he became agitated and aggressive searching for his wife. As a result he spent over 100 hours in seclusion on more than 11 occasions.
The care supporter is not a replacement for visitors but a baseline beyond which no-one should ever fall, an enforceable, practical right which does not rely on the will of the regulator to implement it. It has the support of over seventy organisations across civil society (including large charities, care providers, health organisations and grassroots campaigners), and sixty cross-party MPs wrote a letter in its support to the then-secretary of state. It is a Bill that goes beyond politics and speaks to our shared humanity, and it could bring about a change in the culture of care. It returns power to individuals who have in the past been stripped of power and dignity, and recognises that connection with people we love is essential to maintain our selfhood. Necessarily couched in legal and technical language, it will nevertheless have at its core the enduring and transformative power of love. The damage of the past cannot be undone, but we can look to the future and say: never again.
“As Dad was stretchered into an ambulance, his last words to his wife were ‘Aren’t you coming with me?’. His family never saw him again.”