“If the Bristol Nightingale could have an area to enable visits to Covid patients at the end of life I’m damn sure care homes could arrange something for their guests. Stop the cruelty of separation. Please.” — @muntma

Since the start of the covid-19 pandemic, hospitalised patients and their families have been separated in order to prevent the spread of covid-19.

Many families have only been able to keep in touch with their relatives via phone or video calls. But as highlighted by this tweet, excluding family members from visiting their loved ones is upsetting and unnecessary. Most distressing are stories of patients dying in hospital with their family unable to visit them or be with them in their final moments.

I am a qualified nurse and a patient partner and advocate. I have great respect for both the NHS and care home staff. My comments here are not critical of them, but simply relate to the system itself.

The covid-19 virus was unexpected and the magnitude of the pandemic caught most countries in a dangerously unprepared position. 

Supply of personal protective equipment was sadly lacking because repeated financial cuts had limited stockpiling. Staff were faced with nursing covid patients while woefully unprotected. It’s clear just how frightened staff have felt and how worried they’ve been about risk, not only for themselves, but also for their patients and their families. It is also apparent how dedicated staff have been while facing working conditions that would have been unimaginable before the outbreak.  

This relates to the policy about restricting family visits as it provides some background to the hurried decision making in the early stages of the pandemic and shows why, in the initial panic of setting up safe systems for healthcare workers, visitors were low down on the list of priorities. 

However, it doesn’t explain why things have not improved weeks and months later. 

Looking into the reasons behind the continuation of what I see as the harsh blanket ban on visitors, what became apparent is that the ban on visitors was not carried out uniformly across the country, which posed an interesting question. Why would there be different approaches to what should have been a standard policy?

To me this suggests that in some areas of the country, individual healthcare staff have either been able to speak out against the policy, or they have had the time and capacity to find ways to enable family members to visit their relatives. Listening to a conversation between Jocelyn Cornwell, founder of the Point of Care Foundation, and Hayley Hughes, Head of Compassionate Care at the Bristol Nightingale Hospital during the covid crisis, was refreshing. It was inspiring to hear the practical approach Hughes took to maintain the connection between patients and their families at the Bristol Nightingale.

Hughes was aware that up to 50% of the patients would not be expected to survive and she was clear that families should be able to visit their loved ones at the end of life. She found that this was something that had not even been considered when the facility was built. She approached this from the perspective of families and carers and based her approach on what she would want if she was in that position. She described thinking of family members at home, not knowing what was happening to their loved one, going through “the most extraordinarily terrifying time” of their lives. She says that she “could not even contemplate the fact that you wouldn’t be able to say goodbye to a loved one” and was not prepared to see that happen at the Bristol Nightingale. 

Hughes identified an area away from the main covid ward and set up a visiting policy which included a Family Liaison team who phoned families with news. 

Hughes identified an area away from the main covid clinical area and set about making it comfortable for visitors. Initially the plan was for full personal protective equipment (PPE) and a 20 minute visit, but the new infection control lead identified that full PPE was not needed away from the main ward and that masks were enough. This meant holding hands and touching, which are so important at the end of life, was possible and extra visits were allowed.

Among many other salient points is confirmation that proactive communication with families is absolutely vital, as is the need to make sure we genuinely listen to and inform our patients and families, not just demand feedback. 

Care homes have experienced a worse time than was necessary due to the lack of testing, which meant that older patients were discharged from hospital back into care homes without adequate testing for covid-19. Care homes also faced inadequate supplies of PPE. Rapid changeover of staff, many from agencies, made things even worse. In addition, and similar to the NHS, there is no uniformity among care homes apart from the need to be profitable for their owners.

I am horrified at some of the stories I have heard and dread to think what the long term effect of separation will be. 

My mother had vascular dementia and when she was admitted to hospital with an infection a couple of years ago before covid. I was able to stay with her. However, when I left her for a couple of hours to go home to shower and get a change of clothes she became distraught and on my return accused me of abandoning her. I don’t doubt that lengthy separation would have deprived her of the will to live.

Visitation is an incredibly important and necessary part of the care of patients away from their own home. In the same way that we wouldn’t stop prescribed medication and treatments, we should not stop visits.

Again, the similarity between the NHS and the care home sector is striking. There are examples of uniquely innovative schemes to enable visitors into hospital, and examples of personal sacrifice to ensure the safety of those in care. Sadly they are the minority of cases such as the care home manager and staff who stayed in lockdown for 12 weeks and kept the home covid free.   

So my questions to those involved in decision making are:  

— Why do we still have such variation in compassionate care across the country? 

–Why were decisions taken without any consideration for the need of patients and their families to connect? 

I hope we will resolve these questions  before the a covid-19 second peak and winter flu season begin. 

We still have much to learn about the longer term mental health implications of the pandemic for patients, staff, and our communities. 

Carol Munt is an experienced patient partner and advocate. She is passionate about patients and carers being involved in decision making. She is an honorary lecturer and Doubleday Affiliate at Manchester Medical School and she is an Experience of Care Partner at the NHS Leadership Academy. She has a long term condition, Type 1 Narcolepsy, as a result of a traumatic brain injury.

Competing interests: None declared.