I am writing to you regarding visits with my father, [name], who is currently a resident at [name of care home].
To provide some background, my father has severe dementia to the extent he cannot walk, talk, or feed himself, and relies entirely on others to accommodate his most basic needs. It is naturally deeply distressing to us as a family to witness our father dealing with these challenges, and so, of course, it is our utmost priority to ensure he is as well-cared for, comfortable, and free of distress as is possible.
Although we appreciate that many staff at the home do work extremely hard and are devoted to residents' well-being - we would not have selected the services of [care home name] for my father were it otherwise - unfortunately, the high standards of service which we expect and have previously reliably received have been very significantly compromised over recent months.
We were dismayed on one occasion to find we were expected to visit my father from behind a plastic screen. My father's dementia means he requires close, animated contact to be able to engage with others, and such dramatic separation measures meant he was not fully cognizant of the fact we were there and kept his eyes closed for the entire visit.
Clearly, this was deeply distressing for all concerned and we were extremely pleased and relieved when this measure was lifted - not least because there is very little evidence to show plastic screens do anything to reduce the risk of viral transmission (on the contrary, it seems they may increase it (1)), whilst the risk they pose to the psychological and emotional well-being of residents and their loved ones is clearly very sizeable.
Happily, we are now able to visit my father in the conventional way, which we have been regularly doing, such visits and close contact with family and friends being so important to preserving the optimal well-being of our older people. I visit either with my mother or my sister, in compliance with the home's current policy that only two visitors are permitted at a time. We are happy to further comply with the reasonable measures the home asks us to take to ensure the safety and comfort of residents and staff, such as having our temperatures taken and wearing aprons. My sister and mother both wear masks, but I hold a medical exemption and so do not wear one.
I have explained my exemption to the home in the past, and this has never caused any difficulties, However, on my most recent visit to the home, I was walking down the corridor towards my father's room when I was stopped by a manager and asked to put on a mask. I repeated (having already stated this to a nurse minutes earlier) that I am exempt. The manager said that this made no difference, as it was the policy of the [name] Group not to admit visitors who cannot wear masks. I explained to the manager that the [name] Group cannot possibly have such a policy, as this would be illegal disabilities discrimination, as per the Equality Act 2010, and that contravention of this Act can carry with it a personal fine of up to £5,000 and punitive damages of between £900 and £9,000 as per sections 112 (Aiding Contraventions) and section 119 (Remedies) of this Act (2).
Nevertheless, the manager continued to insist this was indeed the [name] Group policy, and I must take the issue up with them, as I would not be permitted to visit my father without a mask.
I was not prepared to further debate the issue at this point, as the discussion was eating into my precious time with my father, so I asked whether I could see him outside. She agreed, and so my elderly and very unwell father was forced to visit with me in a chilly carpark, rather than his comfortable, personal room that we, his family, pay for.
When I returned home, I investigated the [name] Group’s website thoroughly and emailed them to ask for a copy of their visiting policy. Unsurprisingly, nowhere did it state that the [name] Group does not accept mask exemptions and that visitors with mask exemptions must stay outside, so the care home has invented this unlawful policy and attempted to legitimise it by falsely claiming it is the policy of the [name] Group.
As such, I seek your urgent assurance that all staff will receive adequate and immediate education on the vital importance of not breaching equality and inclusion legislation by discriminating against the mask exempt. The mask exempt are fully protected under the law and qualified to access all the same services as those who are able to wear masks. To refuse them the same service on the basis of their mask exemption is illegal.
Of further concern to me is that the manager I spoke with suggested that "all this will get easier" when the home has a regular testing regimen in place. I do not wish to receive medical testing in order to continue my visits with my father, and it is critically important that the home and the [name] Group understands that my rights to decline any diagnostic tests offered to me, without suffering any penalty or discrimination, are protected under UNESCO's Universal Declaration of Bioethics and Human Rights, which states at Article 6, Section 1:
"Any preventive, diagnostic and therapeutic medical intervention is only to be carried out with the prior, free and informed consent of the person concerned, based on adequate information. The consent should, where appropriate, be express and may be withdrawn by the person concerned at any time and for any reason without disadvantage or prejudice." (3)
I would further like to add that the PCR test the home intends to use is not a reliable indicator of the presence of infectious disease. The Nobel-Prize winning inventor of the test, Kary B. Mullis, is quoted as stating: "PCR tests cannot detect free infectious viruses at all” (4). They can detect genetic sequences of viruses, but not viruses themselves.
PCR test technology relies on amplifying results many times over. If they are amplified less than about 35 times, no-one will test positive. If they are amplified 60 times, everyone will test positive. So, to be clear - a positive PCR test result is not evidence that a person is either unwell with any infection, or in any way infectious to others.
It is important to recognise that inappropriate use of PCR tests to misdiagnose infectious disease is not a new phenomenon; in 2007, the presence of positive PCR tests led staff at Dartmouth-Hitchcock Medical Center in the USA to falsely believe they were in the midst of a pertussis epidemic. Nearly 1,000 health care workers at the hospital in Lebanon, New Hampshire., were given a preliminary test and furloughed from work until their results were in; 142 people were told they appeared to have the disease; and thousands were given antibiotics and a vaccine for protection. Hospital beds were taken out of commission, including some in intensive care.
However, nearly a year later, the entire episode was declared a false alarm, since not a single case of whooping cough was confirmed with the definitive test, growing the bacterium, Bordetella pertussis, in the laboratory. Instead, it appears the healthcare workers were probably afflicted with ordinary respiratory diseases like the common cold.
According to epidemiologists and infectious disease specialists, this episode occurred because too much faith was placed in a quick and highly sensitive molecular test - the PCR test - that led them astray.
Reflecting on the situation, Dr. Cathy A. Petti, an infectious disease specialist at the University of Utah, said the story had one clear lesson.
"The big message is that every lab is vulnerable to having false positives," Dr. Petti said. "No single test result is absolute and that is even more important with a test result based on PCR." (5)
To sum and in closing, I request your prompt assurance that no further pressure will be exerted upon me by the home to either wear a mask or take a test in order to continue with regular, appropriate, and comfortable visits with my father - meaning not behind a plastic screen and not in the carpark.
I look forward to hearing from you.