Family caregivers within the UK were marginalised throughout the pandemic, and vulnerable older people were let down by the health system, a recent study has found.
Dr Carolyn Wilson-Nash. Image credit: University of Stirling
Caregivers felt “powerless, voiceless and choiceless” throughout the first six months of the pandemic, as chaos reigned in some parts of the health system, elderly relatives were prematurely discharged and health records sometimes modified without due process, the University of Stirling Management School research found.
Dr Carolyn Wilson-Nash analysed 2607 posts on forums for UK-based family caregivers between March 15 and September 15, 2020. She said: “When the pandemic hit, the NHS responded by postponing non-emergency procedures, closing non-emergency services and redeploying specialists, which released essential hospital beds. Unfortunately, these actions had negative consequences for older people and their carers.
“Early on, the UK government prioritised the fittest, which marginalised the vulnerable.
“And NHS frontline services were rapidly overwhelmed. Just before the pandemic, the UK was spending just 9.8% of GDP on healthcare, considered one of the bottom within the developed world, and had a bed capability of two.5 per 1000 people.”
Dr Wilson-Nash cites examples on the forums where the medical records of vulnerable older people were modified to ‘don’t resuscitate’ without the family’s consent, when GPs phoned the older person and pressurised them to alter their record.
In other examples, older people were prematurely discharged into the community without care.
One 90 year-old was in hospital with Covid and her son was stuck abroad. The hospital sent her home in an ambulance to the care of a relative, who had just had an operation herself. The discharged patient was left downstairs with no food or heating. A caregiver got here but said they couldn’t help due to Covid regulations. When an ambulance got here back within the morning, and she or he was moved upstairs to her bed, she had soiled herself and her ankles had turned black.”
Dr Carolyn Wilson-Nash.
In other cases, relatives who were offering to take patients home were ignored or refused on account of Covid regulations.
“They felt voiceless because panicking managers didn’t take heed to them, and routes to complain had been shut down,” said Dr Wilson-Nash. “They felt powerless because that they had no control of their relative’s care, and choiceless because that they had no options. Ultimately, this has left them feeling resentful and mistrustful of the health service.”
Her report makes quite a few recommendations, including improving communication between the NHS and family caregivers, not closing complaints procedures and reducing the stress of frontline NHS employees through reduced workloads, emotional support services and higher provision of PPE.
It also recommends policy changes resembling addressing the scarcity of in-home care services, each NHS and personal, by offering business loans, for instance; increasing regulations on service providers in order that patients can’t be discharged in the event that they have nowhere to go; standardising the standard of care expectations through clear guidelines, as an example around PPE; and creating more cohesion between those that take care of vulnerable elderly people, across primary, secondary and health-based social services.
“Family caregivers need more support, more funding and opportunities for training,” Dr Wilson-Nash added. “In addition they need clear communications and to be involved in care planning, especially in the event that they have power of attorney.
“In the mean time, the system is just too fragmented – the IT system for GPs will not be connected to that of the hospitals, for instance. This all needs to enhance, before the subsequent crisis hits.”
Source:
Journal reference:
Wilson-Nash, C., (2022) Locked-in: the risks of health service captivity and cessation for older adults and their carers during COVID-19. Journal of Marketing Management. doi.org/10.1080/0267257X.2022.2078861.