One of the cruellest symptoms of the pandemic has been the physical separation and isolation of those infected by the virus from their family and friends, the very people whose love and support is most needed during times of ill health.
However strong the infection-control arguments are, there is increasing concern about the blanket nature with which many of these restrictions have been applied and how, in some cases, hospitals have failed to take into account the important role access has for patients’ wellbeing, and to doctors’ ability to provide care.
The BMA patient liaison group is deeply supportive of the need to uphold infection-control measures. It has, however, voiced concern that the restrictive COVID policies have ‘resulted in a number of family-care givers and long-standing carers, partners in maternity settings, and parents of babies in neonatal units being excluded’.
The group is calling for an end to this blanket approach and is urging trusts to view the rights and needs of these discrete groups as distinct from general visitor policy, and for more data on the effect of these policies to be uncovered.
I experienced complete isolation in my cubicleBMA president Sir Al Aynsley-Green
It is a position shared by professor emeritus of child health and former BMA president Sir Al Aynsley-Green, whose own experiences as a patient and carer during the pandemic have led him to speak out on the issue.
Sir Al, who is the full-time carer of his disabled wife, was unexpectedly hospitalised with COVID in March last year after collapsing at his home, the severity of his symptoms meaning his family was told that he might not return home. He remained on the COVID isolation ward for almost a week.
During this time, he says he received excellent and compassionate care from all the doctors and healthcare staff he encountered while they gallantly reconfigured their wards to cope with the pandemic.
‘I saw at first-hand what it was like to be a patient seriously ill with COVID.
‘I experienced complete isolation in my cubicle with nurses wearing full PPE [personal protective equipment] and my not being able to see or communicate with my family. I couldn’t even see them on an iPhone because my cubicle didn’t have internet connectivity.’
During his stay in hospital, Sir Al’s wife, who has a severe cognitive disability with an expressive aphasia, was not able to communicate with her husband or understand why he had suddenly been removed from their home, something Sir Al says led to her developing an intense separation anxiety.
Sir Al fortunately made a full recovery, but in the weeks following his discharge his wife’s health deteriorated, requiring investigations under anaesthesia and ultimately being told that she would have to undergo major surgery for cancer.
Despite his wife’s dependence on him as her husband and carer, with a lasting power of attorney to speak for her needs the consultant leading her care explained that, owing to infection control measures, it was his trust’s policy for patients to be separated from family before admission to hospital for treatment.
‘He told me in our very first conversation that the trust policy in his hospital was that patients would be left at the entrance to the hospital to be taken into ward and subjected to surgery unsupported by their carers,’ Sir Al says.
‘He [the consultant] proved to be entirely empathetic and understood my outrage [at] being told that I would have to leave my incredibly vulnerable and entirely dependent wife at the entrance to the hospital.’
He says the consultant and the patient liaison nurse understood his concerns and promised to do everything they could to enable Sir Al to be admitted with his wife.
After isolating themselves for two weeks ahead of his wife’s surgery date and undergoing testing for COVID-19, Sir Al was ultimately allowed, exceptionally he was told, to accompany his wife, despite not knowing whether he would actually be permitted to do so until arriving at the ward on the day of the surgery.
Wearing PPE, his presence with his wife proved to be of great help to the ward in keeping her calm, encouraging post-op drinking and allowing her home earlier than otherwise.
The separation of patients from their carers is not the only example of the reductive nature of some trusts’ blanket policies on restricting access.
During the course of last year, many pregnant women found themselves having to attend scans and hospital appointments alone, and in some cases give birth without their partners, owing to infection-control policies limiting access.
It is an issue which BMA representative body deputy chair Latifa Patel, who herself gave birth during lockdown, feels has huge implications for the welfare of parents and babies and yet has not received adequate attention during the pandemic.
When Dr Patel was first admitted to hospital while in labour, her husband was not allowed to come with her to the assessment unit.
‘It was only after the assessment and decision that I would be admitted had been made that my husband was allowed to enter the ward and join me. It seems like this section of medical care has been neglected and no real thought has been put into it.’
It seems like this section of medical care has been neglectedDr Patel
While Dr Patel’s husband was ultimately able to attend the birth of their daughter, she remains acutely aware that this has not been the experience of all families during COVID-19.
She adds that for any 24-hour period partners were only allowed to visit for a pre-booked two-hour slot.
‘Despite the guidance from NHS England the hospital’s local policy remained that no one was allowed to accompany pregnant women for any of their appointments.
‘We were fortunate in that we had an uncomplicated pregnancy and did not receive any bad news at my appointments but had there been it would have been quite a lonely place to be.’
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Dr Patel believes that rather than leaving decisions on access up to the discretion of individual trusts, a national policy should be implemented in the NHS.
‘As a doctor, I can understand why these risk assessments were made, but I also feel you need to strike a balance,’ she explains.
‘Risk assessments need to be reviewed and they need to be evidence-based. We’re over a year into the pandemic now so we really need to consider how these risks are managed and what is important and how we balance the mental, physical and emotional needs of parents and children, and also a balance between ensuring we don’t spread the virus.
‘That joined up thinking just didn’t happen [in 2020] it was just easier to say “stop at the door, you’re not allowed any further”.’
An emotional bridge
Leading a team of staff during the height of the pandemic, consultant geriatrician Cerys Morgan has experienced first-hand the challenges presented by restricted access to patients.
Based at St Mary’s Hospital in London, she says the absence of family members visiting and supporting patients was not something she was used to, adding that PPE and infection control measures had affected her preferred face-to-face style of communication.
With her trust benefiting from a donation of iPads from a charity, she and her colleagues were able to use these to good effect in helping patients and families communicate, but such technological solutions had limitations, particularly for older people affected by hearing or sight loss.
She adds that being the bridge between separated families and patients is also a hard thing for staff to bear mentally.
‘From an emotional point of view, seeing someone die without their family present and having to give all that information over the phone has had a huge impact on people,’ she says.
‘As a geriatrician we try to really encourage families to come in, particularly patients with dementia. Right at the beginning of the pandemic there were times when I was having to tell family members who really wanted to come in that, unfortunately, the public health guidance at the time would not allow that to happen, even though for that patient it would have been a better thing for them.’
I can understand why these risk assessments were made, but I also feel you need to strike a balanceDr Patel
Fortunately, Dr Morgan says that her trust, Imperial College Healthcare, amended its policies at an early stage to allow those who were carers to patients access to them in hospital.
‘Right at the beginning of the pandemic the policies were very strict as to who could come in and out of the hospital. I think that my trust was one of the first to introduce carers’ passports,’ she says.
‘Our dementia specialist team is a brilliant advocate for our patients in my trust and they very quickly turned it around so that if there was someone who was a main carer, they should be allowed to come in.
‘I have heard that other places have had quite strict policies, but I do think that people are now becoming a bit more lenient and that things are changing quite quickly. It would have been better, I think, for there to have been one policy across the whole of the NHS.’
As the vaccine roll-out across the UK continues, Dr Morgan says she hopes greater levels of immunisation within the population will encourage trusts to consider relaxation of their regulations around access to patients.
Dr Morgan adds that her trust now allows all patients to receive one visitor for an hour a day, while the passport system for carers remained in place.
She accepts, however, that there will continue to be an emphasis on protecting patients and staff from potential infection, and that balancing access with health and safety will continue to challenge hospitals and other services such as care homes.
For his part, Sir Al says he fully understands the need to minimise risk of infection to staff and patients and agrees that non-essential visitation should be restricted.
Carers, he argues, are not ‘visitors’ and should be seen to be valued members of the team supporting the patient.
He rejects utterly what he labels as the ‘one-size-fits-all’ policy still being applied today not only to carers but also to pregnant people being given devastating news of fetal abnormality unsupported, giving birth separated from partners, and even parents of seriously ill new-born babies denied access to their sick babies.
This, he says, is ‘unspeakable cruelty’, denying the basic principles of compassion, flexibility and the best interests and human rights of patients.
‘I’m really concerned that what we have witnessed as a result of COVID will become embedded because of future policies, not least because COVID is not going to go away.
‘It is time for an open, honest debate and for doctors and nurses to speak out.’