When I was 13, I learned about workhouses. My history teacher, Mrs Jones, brought to life the horror and helplessness of people in centuries past who were forced to live in degrading institutions. When I read the Guardian’s investigation into privately run care homes and considered its evidence that people without savings are more likely to end up in “inadequate” facilities, it hit me: are we slipping back in time?
You may think this is an exaggeration, and you wouldn’t be alone. If there’s one thing I’ve heard repeatedly from those who have yet to experience the system it is disbelief. Surely, they say, it’s not that bad. It’s true, there are excellent care homes and there are care workers who genuinely care. But since co-founding the People’s Care Watchdog (PCW) I have heard too many stories that do not belong in a civilised society.
Just recently, PCW supported a woman with multiple pressure sores the size of small plates that exposed areas of tendon and bone; she was in such distress that she was pulling out her hair and she had only been given paracetamol as pain relief. We’ve found care homes with staffing levels so low, and with such a lack of specialist training, that patients with complex needs were frequently dehydrated and malnourished. We know of care workers who have insufficient time to take people to the toilet so they use incontinence pads for convenience. These pads are sometimes restricted to meet tight budgets, resulting in people sitting in their own faeces and urine for hours on end. We’ve seen toenails so long they are digging into the tops of toes, while the family is still being charged for “chiropody”. We know that there is regular misuse of antipsychotics and strong sedatives to treat people with “agitation”. There are serious safeguarding issues, with abuse and neglect repeatedly not dealt with by local authorities.
I could go on, but I have learned there is only so much most of us can take in. And these are stories from care homes rated “good” by the Care Quality Commission.
An aptly titled recent report commissioned by MPs and peers, When ‘End of Life Care’ Goes Wrong, shows that we have arrived at a dangerous juncture. The MP Carla Lockhart describes the “callous and inhumane treatment” of elderly, disabled and vulnerable people, with co-author Prof Sam Ahmedzai identifying in the report’s case studies “a succession of mistakes and clinical errors, frequently coupled with a lack of proper communication, or even concern for, the patient and family …” The report gives evidence that we have stopped respecting life to the point that the most defenceless people can be started on an “end of life pathway” without proper consultation.
This current “care” system is beyond distressing for the people being subjected to it, and traumatising for family and friends looking on. Many relatives are labelled “difficult” when they have to repeatedly raise issues. I lost count of how many times we asked for my grandmother to have her dentures put in every day so that she could eat properly; or wear her own warm clothes, as she missed her native Italian sunshine. Surely these are not big things to ask – especially considering how much money families are spending. As one of the members of PCW often reminds me: “My Mam’s abysmal care is costing us the equivalent of a cruise a week.”
We often hear about the “social care gap”, and successive governments have struggled to find the money to fill it. Perhaps unsurprisingly, businesses have stepped in. But as long as care homes are being run as businesses, many with private equity stakeholders looking to the bottom line, we are compromising our loved ones. The 2021 report Revera Living Making a Killing, published by the Center for International Corporate Tax Accountability and Research, highlighted profits being pumped into offshore tax havens. Care is big business. Reports like this one suggest that private care-home providers don’t need to be paid more money in order to improve the care they deliver; they need to be prevented from making huge profits at the expense of our most vulnerable people. There is a gaping wound at the heart of society and we all need to act radically to heal it.
Unfortunately, many people find this issue so uncomfortable that they either look away or get defensive. I cannot look away or deny the reality any more. I have seen too much suffering, read too many case studies highlighting unlawful behaviour and heard too many family members cry down the phone in despair. But we will never have the care system we need as long as we keep expecting businesses or government to provide it. We are all going to get old – if we’re lucky. Or there’s the possibility that someone in our family will have, or develop, complex needs at any age. Care is everyone’s problem.
That’s why PCW has teamed up with another community action group, the People’s Health Alliance, to create new blueprints for health and social care. For example, social enterprise care homes would mean profits stay within the community, ensuring care workers are paid well and standards kept high. The “shareholders” would be the village or town or district – putting care back into the heart and hands of communities. Our plans are picking up pace, with input from families and dementia specialists to create low-impact buildings and evidence-based care.
Surely, we can collectively create a new way that honours the lives of vulnerable people and deeply respects those who care for them. Surely, we can build new systems so we all feel safe knowing we are not alone when we, or someone we love, needs support. This is dignity, this is person-centred care, this is humanity. This is looking to the future, not slipping back into the past. What do you choose?
Leandra Ashton co-founded the People’s Care Watchdog after her mother was arrested for removing her grandmother from a care home during lockdown