The care home ‘visiting’ scandal – a harsh lesson for the patient and carer involvement agenda

Covid-19 Elderly Care Patient Experience

The care home visiting debacle: Claire Marsh, at the Improvement Academy, has shared this blog on why we must thank campaigning groups and trail blazers for leading the way…

Since March 2020, care home residents (over 400,000 in the UK) have been largely denied access to their loved ones. For elderly residents this means husbands, wives, daughters, sons, siblings, friends have all been ‘locked out’ of their lives to prevent Covid-19 entering the homes. For younger residents, this means parents. As soon as the first wave emergency subsided, the call for a more compassionate approach to reconnect vulnerable residents with those people most important to them was made. In May, John’s Campaign circulated an open letter advocating just that with respect to residents with dementia¹ but it was quickly recognised that the principles applied to all. Six months on and a nightmare combination of prohibitive government guidance, public health restrictions, and fearful care providers have left the situation unresolved. At the time of writing, family testing remains an elusive goal, few homes allow face-to-face indoor contact, some are starting to do so but through floor-to-ceiling screens, and a large number are still completely shut.

I do not need to re-write the evidence as to why this is bad for any idea of compassionate care, and what approaches need to be taken to let relatives and friends back in safely. The Nursing Times² did a good job of this in October making the point that infection control should not be a barrier but ‘an enabler to safe, compassionate, human interaction’. The National Care Forum³followed in November with a ‘Call to Action’ signed by over 60 organisations (researchers, professionals and allies representing carers and providers), requesting urgent solutions from the Government.

However, in the absence of any national leadership on this, a small number of care homes have begun to do the right thing anyway. We see brilliant examples from Kepplegate House Care Home⁴ in Lancashire, and Broomgrove Nursing Home⁵ in Sheffield where staff are managing to keep the ethos of family connections alive. To some degree, the nuances of their particular local authority guidance has supported this, but still not many are doing it, particularly in the North where infection rates have been highest. These two are trailblazers – courageously leading the way through what has become a quagmire of fear that has put compassionate care to one side.

Because of this situation, my personal and professional life have collided. My Mum has vascular dementia and has lived in a care home in my town in the Leeds district for nearly 2 years. When she moved in, I saw myself as her primary carer and advocate. I committed to a partnership with the care home to meet her needs together. They provided 24 hour care which I couldn’t do alone. I provided lifelong bonds and love and a link to her personal history and also helped create meaningful activities for her such as walking and singing. The care home is still doing their bit well, but I am no longer able to do mine.

The fact that this important relationship could be severed and disregarded so carelessly is clearly personally heartbreaking. In these eight months of restrictions, my Mum has started to withdraw emotionally from me and when I recently got a rare 15 minute appointment to see her over a fence, she was stressed, pulled back and wanted to go back inside. I have no doubt that our relationship is being irreparably damaged and we are losing a connection that, due to her condition, won’t be re-gained.

The situation that has been allowed to unfold also causes me many professional concerns. As a Patient and Public Involvement researcher and advocate, I am part of a profession that champions patient and carer voice in shaping services, individualised care plans and a commitment to an equal partnership between care providers and care receivers. When it comes to vulnerable people – e.g. children, people with cognitive problems – the partnership must include the carer.

The care home visiting scandal has exposed how fragile this ideal is in practice, and how quickly it can be cast aside with all power taken completely from the patient and/or carer. What is most worrying is the seeming acceptance of this across most of the health and social care system – the same system that has championed this involvement agenda, at least formally, for years. Was it all lip-service? Why have health and social care professionals who each play a part in a resident’s care (e.g. GPs, consultants, community nursing teams, as well as the care staff themselves) not mobilised to address this? What role do patient involvement, quality and experience staff across the system have to play? In a fragmented system it is not easy for individuals to take responsibility for change, but surely that is now what is required. As a patient involvement and experience professional within the system myself, I too am baffled by quite what to do, but I am using this blog to start talking.

Thankfully whilst inertia prevails, I wish to express deep gratitude to the campaigning organisations who are currently fearlessly holding the system to account and who appear to be slowly making progress on behalf of residents and their loved ones – nationally to Johns Campaign⁶ and Rights for Residents⁷ , and to Healthwatch⁸ who campaign more locally. Gratitude must also go to the trailblazers within the social care system who refuse to accept what has become a shameful norm and are striving to deliver a compassionate service against the odds. These campaigning organisations and trailblazers have been the conscience of the system and we must celebrate them for possibly saving us all from committing a lasting atrocity against some of our most vulnerable people.

Get in touch with Claire via email: Claire.Marsh@yhia.nhs.uk

The care home ‘visiting’ scandal – a harsh lesson for the patient and carer involvement agenda

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