Diolch yn fawr iawn, Lefarydd.
My mother Nancy had a stroke sometime between Christmas eve and Christmas day at the close of 2020. There was no warning, no time to prepare for this catastrophic event. Overnight she lost her autonomy, her independence and her agency in her own life. She went into the local district hospital and was transferred from there at the beginning of January 2021 to a community hospital specialising in stroke rehabilitation. She remained there until the end of that February. She came back to live with us for a couple of months, with twice daily home carers, while I, her only child, was still able to vote here and speak in debates without having to be physically
present in the House of Commons. She had to move into residential care because the period when I could balance caring and parliamentary duties came to an end.
Last November she had a fall and knocked her head. The anti-stroke medication resulted in bleeding on her brain. She was discharged from hospital back to the residential home at very short notice. Just before Christmas she fell again and broke her hip. She died in hospital four weeks later. These are the bald facts of the event. It was my mother’s misfortune to be old and in need of clinical services during the first covid winter. It was the misfortune of all of us as a family that my mother fell ill at a time when covid infection control demanded the absolute isolation of stroke patients. Many of the key workers with whom we interacted over those 13 months were extraordinary.
During the last month of my mother’s life, dementia specialist nurse Delyth Fon Thomas put me in contact with John’s Campaign. She explained to me that, in the last month of my mother’s life, family contact was a right rather than an optional favour. She was the first person in authority to mention that, and she put me in contact with Julia of John’s Campaign, who is, I am glad to say, with other campaigners here in the Public Gallery.
Look up the long list of hospitals and other organisations that have signed up to John’s Campaign. They recognise that a key family member is more than a visitor—they are a carer as much as anyone on the payroll. But, I say to Members, try to get that information volunteered to you, try to find out what your rights are, because they are not given to you on a plate. People such as Delyth confounded the cliché of monolithic public sector organisations, which may well prioritise institutional interests and risk aversion to the detriment of those services that we trust them with providing. I think that, as private individuals, many people will have had that experience.
None the less, despite Delyth’s help, I only touched my mother’s hand once during the critical six weeks after her first stroke. Yes, we could arrange to speak to her through a glass window as she sat in a hospital stairwell and we stood outside in the car park, peering in. She could not hear us—incidentally, her hearing aid had been kept in a cabinet all the while and the batteries had run out. Yes, we could phone and arrange to speak over an iPad, but she could not hear us; she could not understand us. There were no hugs.
Health authority infection policy vetoed family bonds of love as a health hazard to be minimised. Of course, at the onset of covid, we had to adapt and learn quickly about how to cope with an unfamiliar, life-threatening and highly infectious virus. We put in place measures such as lockdowns and visiting restrictions at hospitals and care homes, because that was the best that we could do; that is all we knew back in 2020. We had to learn as we went along, but have we truly learned the most important lesson of all? Treating the elderly and people with dementia as units of flesh and bone by meeting the barest minimum of their physical needs is wrong. We are social animals: take away our social support and we fail to thrive. Denying family contact causes immediate welfare harm to patients and longer-term harm to family members.
That is the context in which we must apply the abstract terminology of legislation: the Equality Act 2010 recognises the basic principle that the needs of
disabled people should be assessed and reasonable adjustments made to meet those needs. People with dementia and cognitive impairments are disabled. Then there is the matter of human rights, which have been touched on. Article 2 of the European convention on human rights places an obligation on the state to secure the right to life. Article 8 protects the right to private and family life, but how these are balanced in care settings is critical, and how we shift that balance as we move along is also critical. It is also surprising that the Human Rights Act 1998 applies only to publicly funded residents in care homes.
This evidently unjust inconsistency is why the Government must step in. Why should the owners of private care homes, especially in England where local authority care is far less available than in Wales, be able to make such immense decisions, and possibly prioritise convenience over residents’ and families’ rights? Indeed, if we start from the point of view of people in need of care, the care setting itself should not depend on whether it is in the public or the private sector. If the individual has a right, that right goes with them throughout their lives—whether they be in hospital, at home or in residential or nursing care. A right is not a right if its only guard dog is guidance.