Visiting restrictions and the impact on patients and their families: a relative's perspective

Summary

The pandemic has shone a stark spotlight on so many inequities and inconsistencies in access to health and social care. Unfortunately, many of these inequities were already there and so, in some respects, its nothing new. In this blog, I want to draw attention to how visiting restrictions can result in worse outcomes for patients and their families.

I will focus mainly on the needs of older adults in hospital or care, and those with dementia, because that has been my own experience. But these restrictive practices have affected so many groups: among them, those with mental health conditions and those with learning and behavioural difficulties. 

Content

Inconsistency in visiting restrictions

It is now evident that there are no clear guidelines about how patients can be supported in hospital and in care homes. Page 3, paragraph 3 of the Government's ‘Guidance on Care Home Visiting’ says: “There are no nationally set restrictions on friends and family visiting their loved ones in care homes. We expect and encourage providers to facilitate visits wherever possible and to do so in a risk assessed way”. From next week, restrictions related to care homes in England will be eased.

But how are family and friends expected to know about current restrictions and the continuous changes being made and be able to understand or challenge them? 

Hospitals are another area of confusion. During the last two years there are Trusts behaving differently, departments and wards within Trusts behaving differently, and Ward Managers using their discretion. One ward nurse was overheard saying “things have been a lot easier without the visitors” (yes, I was profoundly shocked to hear this). 

So what are we, the public, to make of all of this? The picture is troubling and very confusing. Families and others who provide care are out there thinking this is Government policy, or NHS policy, or Department of Health and Social Care policy, and that all settings must be the same. What is going on here? Who is making these decisions?

Family members, essential care givers (and how many carers are aware of this term?), are not able to contribute to patients’physical and mental wellbeing; they do not have the opportunity to observe their loved one, notice a deterioration, pass on a concern from the patient, ask about medications – the list goes on.

Discrimination

I hear visiting is being maintained in some way (but not everywhere) for poorly children, end of life patients and birth partners. But I fear that older, more frail, patients and those with dementia (or those not diagnosed, but clearly having memory worries) may not have been able to have visitors, including some patients who may have been benefiting from 'John's Campaign' and having a named care partner. As we know, older people in particular are at risk of deterioration due to disorientation, lack of interaction and activity, and absence of family. I often say that you wouldn't hear the same sort of restrictions for a sick child. In fact, people would be jumping up and down to find ways NOT to leave a child without interaction, activity, company and comfort. And rightly so. But why not the same for all patients?

How does this impact on patient safety?

I know from my own experience that disorientated and confused elderly patients like my husband who had vascular dementia and Parkinson’s, may be viewed as “being a nuisance to others” when they call out, try to get out of bed, ask for the toilet again (after all it may be one of the few things which can get attention), or try to leave a ward or room. Anti-psychotic drugs are known to be used as a “solution” – but for whom? Not the patient.

My own husband was “returned “ to me from nine different care home breaks, because they “couldn’t meet his needs”. I used to dread hearing the phone. And he would be returned to a fraught situation where I couldn’t cope (or I wouldn’t have asked for help in the first place) and where matters would deteriorate more, and we would lurch to another crisis. Can we say that patients are really safe in these scenarios?

Going forward

We all acknowledge the infection risk, the need to observe setting protocols and absolutely do everything to protect ourselves and those we love and their carers, but this can’t be seen in isolation, or the first and only response, or the excuse – without context – to prevent access to loved ones.

When we do finally learn to live with this pandemic, and when the services affected can get back to some normality, what will happen to ’visiting hours‘. My fear is that current restrictions could become hard-wired because they are ’easier‘, and/or because they ’work‘. This is not about the best interests of patients. We must find out what will happen and ask about any new decisions which appear to deny opportunities for family members to see their loved ones and support them.

Further reading

It’s time to rename the ‘visitor’: reflections from a relative

About the Author

The author of this blog wishes to remain anonymous.