To deprive people living in care homes of the stimulation and unprecedented pleasure that 'visiting' bring creates significant risks. Social care is a holistic service – it is concerned with people's mental and physical health alongside their spiritual and emotional wellbeing – we lose sense of the balance of all these elements at our peril.
The impact of taking visitors away from people on a prolonged basis has been closely observed all over the country, with people and organisations commenting on the raw reality of residents going downhill fast, giving up hope and ultimately dying sooner than would otherwise be the case. This is why it matters so very much and why we should think very hard indeed before intervening in a way that severs these connections.
The impact of the social care COVID-19 winter plan and of rising cases
That is not to say that any visit can be taken lightly at this time but the social care COVID-19 winter plan, launched by DHSC on Friday 18 September, while not outright banning visiting, gets awfully close to it.
The plan outlines measures already in place which have created a blanket lockdown of those care homes in ‘areas of intervention’, which on the last count amounted to a geography covering nearly 20% of all care homes in England. This means that residents and their immediate families, amounting to approximately 300,000 people, a population equivalent to Brighton and larger than Newcastle on Tyne, have been effectively split apart from their loved ones without warning, and without consultation. With a blanket ban meaning no visits can take place – no garden visits, window visits or visits inside the home.
This is to say nothing of the many more hundreds of thousands of people impacted by homes being in localised lockdowns through the decision of their Director of Public Health, as a result of being in areas which are on a PHE watchlist.
Why risk should continue to be assessed individually for people and places
Of course, it is completely understandable that policymakers want to take every precaution they can when it comes to care homes, given the catastrophic suffering and loss of life earlier in the pandemic and now with the emergence of a ‘second wave’. Declaring a 'no visiting' blanket ban, or near ban, may seem to them like the right thing to do against this context - but we seriously question whether it really is, and for a number of important reasons.
Firstly, care homes and residents are all different whereas a blanket ban inappropriately treats everywhere and everyone the same. Surely, with this as with everything the appropriate way to proceed is by assessing the risk for places and people on an individual basis.
Secondly, it seems perverse, to say the least, for official guidance to say that in certain circumstances a person can be discharged from hospital into a care home without a test showing they are COVID-19 negative, yet carefully managed visits by loved ones should cease. This makes no sense at all.
Thirdly, we are not aware of any evidence showing that 'visits', if carefully managed, have been a significant risk in spreading the infection so far. On the contrary, our understanding is that the evidence points more towards people who come in and out of a care home inevitably being rather more of an ongoing risk, whether they are staff or visiting GPs and District Nurses, or indeed CQC inspectors. Unless these incomers are housed on site they live in communities like the rest of us and so are as vulnerable to picking up the infection as we all are.
Finally, the risk of visiting contributing to spreading the infection is not the only risk that has to be managed here, though it's the one we have the metrics to count. The other risk, which is very significant for many older people living in care homes, is that their physical and mental health significantly declines as a result of a prolonged lack of connection with those who mean most to them. It is this very delicate balancing act that homes, in partnership with relatives, have been negotiating in recent months.
It is a very human balancing act that centres around people and their needs, and the risks for those living and working within a care home and relatives and friends too. Everyone has their part to play in making this a success: homes need to communicate transparently and often, sharing their thinking and measures to minimise risk as the situation changes; relatives need to ensure they are working with the home to facilitate these mitigations; and everyone needs to keep the focus on what really matters here – the safety and the welfare of the person living in the home. A polarised debate helps no one.
The public conversation about this is not helped by the term 'visiting, which somehow fails to capture what many relatives and friends often do for people in care homes to supplement the care available from staff. It is not unusual, for example, for the partner of a resident with dementia to spend many hours with them, helping them very slowly to eat and drink sufficiently. As the most familiar and cherished people in their lives relatives and friends also play a big part in giving residents reasons to stay cheerful. They are also often able to communicate effectively with a person who has dementia or another form of cognitive decline in a way which even the most highly skilled staff cannot manage - love makes all the difference.
Finally, for older people with dementia we understand there is clear evidence that connection helps to slow down the progress of the disease, whereas its absence helps to accelerate it. The very hard reality for all us to contemplate is that for many care home residents, they don’t have time for us to get this absolutely right and therefore it is about balance – like every decision we have to take with and for them. However, let us not let this be portrayed as a Faustian pact – it should be a shared endeavour amongst us all to support people to live the best possible life, one we undertake knowingly, and with the best intentions at heart.
What needs to happen so visiting continues to be the default
What do we need to tip the balance so visiting can continue to be recognised as the default position at this difficult time?
- Testing is fundamental in terms of management of the virus – getting it right sits in the lap of the Government. To stop visiting because testing capacity or capability is not sufficient is not good enough. Ideally we would have rapid saliva testing for all visitors, including friends and relatives, visiting health professionals and CQC inspectors.
- Designating one person per resident as a ‘special visitor’ would help – as in the partner of the person with dementia in the example above. They should be eligible for regular testing, PPE and training alongside the care home staff, to help facilitate their ability to keep coming in.
- Public liability indemnity for care home providers – One of the very real pressures impacting organisations which run homes is the ever tightening insurance market. Government can and should address it. It has offered indemnity to the NHS, it needs to do the same for the care sector.
- Making permanent investments in the built environment to minimise risks in visiting. It is clear COVID-19 is not going away quickly and there could be other infections in future to worry about too. Let’s make the investments now in securing functional space inside buildings that makes visitors and the visited as safe as possible. There are hundreds of creative schemes being enacted across the country – let’s ‘ramp’ this up with, if necessary, some targeted capital investment, so every home has a space they can use to keep people safely connected.
- Shifting the dial on the metrics – We have a much better dataset around the spread of infection and what is happening in real time in homes but are less well served by wellbeing metrics for those living within care settings. We need to harness the power of those working with electronic care planning systems to develop these and roll them out.
- Doing everything we can to enable safe visiting in care homes is a cause that the entire health and care sector should rally around, including CQC, local authorities, and health and care staff too. Health practitioners, particularly those with a specialism in mental health and wellbeing, understand only too well how important connections with family and friends are and we need them to demand that we find a way to nurture both people’s mental as well as physical health at this difficult time.
Here's a real life story to finish with. One of us had a conversation recently with a friend who visits his mum in a care home every week. She is there because of a major stroke. She sometimes struggles to speak and is seriously physically disabled but she has full mental capacity. She has a garden room in her care home and so when her son visits she sits inside and he sits outside, the appropriate distance apart. They both wear masks, which they laugh about sometimes. The only risk here, he says, is that he gets a chill from sitting outside – there is virtually no risk of passing on any infections either way. Are we really saying that even this visit should now stop?
If living in a pandemic is ‘the new normal’ then we need a paradigm shift in our thinking now. For many the decisions that are taken about visiting are life changing, and potentially life limiting. None of this is easy – but nothing that mattered ever was.