In my first blog, ‘Visiting restrictions and the impact on patients and their families’, I highlighted how the pandemic has shone a stark spotlight on so many inequities and inconsistencies in access to health and social care. I wanted to draw attention to how visiting restrictions can result in worse outcomes for patients and their families.
In my second blog I want to focus on the terms ‘visiting’ and ‘visitor’ and discuss what defines a visitor and why, in my opinion, it requires redefining and renaming.
Redefining the terms ‘visitor’ and ‘visiting’
When I used to see my husband, wherever he was, I KNEW that I was NOT a ‘visitor’ – as a ‘visitor’ I would have gone out of kindness, with a drink, or fruit or whatever, but I was his wife and partner and best friend, and the one who had been caring ABOUT him for the last 7 years, until we both simply buckled.
I was there to observe, to pick up on issues, to ask about medication, to hold his hand, to do a crossword, to listen to music, to ensure he was hydrated, to point out food preferences, and also to ask the staff to familiarise themselves with his life story book – an action which would help them engage better with him, because they would have starting points for conversation. I was not a ‘visitor’. I was a partner in his care, and advocate for him.
Two initiatives have seen the redefining of the term ‘visitor’.
John’s campaign is for the right to stay with people with dementia, for the right of people with dementia to be supported by their family carers.
“Families are never visitors to a person with dementia; they are an integral part of that person's life and identity and often their last, best means of connection with the world.”
On the 5 January 2022, Liz Saville-Roberts stood up in Parliament during Prime Ministers Questions and asked Boris Johnson if he agreed that disabled, sick and elderly people's human rights are not fair-weather luxuries, and that everyone with dementia, wherever they live, has the right to family life.
For me this offered such hope for families. Organisations have signed up to John's campaign and made their own settings welcoming to families at various times, and, importantly recognised that the carer is still a partner in care, and IS a part of the therapy, the healing, the treatment – whatever you want to call it.
The essential caregiver
Age UK states:
“guidance outlines that each resident should be able to choose an ‘essential care giver’. This is someone who provides not only companionship but also additional care and support to the person in the care home.
The essential care giver should be able to visit more often, including during periods when the resident has to isolate due to coronavirus or if there’s been an outbreak in the care home.”
Another welcome improvement to the situation, and again an acknowledgement of the role and of the importance of this person to the person in hospital or care. BUT, do ‘essential caregivers’ know who they are? Know what it means? Have they been consulted? And are they able to carry out their role?
We need to redefine or rename the role of the ‘visitor’, particularly to clinicians and others involved in care. This can only be done through communication and co-production with those very families. We must be vigilant and ask questions, and ask for clarification and challenge when necessary whenever new ‘visiting’ regimes are in place. Sadly, I can envisage a meeting of staff (with no patients or their families present) to discuss this and we just need one person in the room to say how much “easier” it has been with no visitors, and that view would easily gain traction. This worries me… and must not be allowed to happen.