John’s Campaign was launched back in November 2014, by London based carer Nicci Gerrard, and Julia Jones. It seeks to protect the rights of patients with dementia, and fights for extended visiting rights for family carers of patients with dementia.
Of course, the COVID-19 lockdown significantly worsened the visitation situation in care homes. Many elderly people have been left isolated, confused and alone. However, as national lockdown restrictions were lifted, the government released new guidance on care home visitations.
John’s Campaign, along with charities such as Alzheimer’s society, identified deep flaws within the new guidance. Ultimately the group highlighted that the guidance was in violation of both the Equalities Act, and the Human Rights Act.
Following the publication of further visitation guidelines, John’s Campaign has now launched legal action against the government.
In the UK, Dementia is prevalent in care homes. One third of people living with dementia reside in care homes in England, and three quarters living in care homes suffer from dementia. Dementia is a progressive neuro-degenerative disease, which can cause symptoms such as memory loss, confusion and trouble with communication.
In guidance published by the Social Care Institute for Excellence (SCIE), it was outlined that due the nature of dementia, sufferers may be unable to fully comprehend the need for isolation. Of course, this means that isolation for prolonged periods is likely to be even more distressing for dementia patients. The SCIE also highlighted that the personal protective equipment (PPE) worn by carers, as prescribed by law, is also likely to be frightening for those with dementia.
Research conducted by the Alzheimer’s Society, also showed that since lockdown began, dementia symptoms have worsened. The charity’s report revealed that for those living with dementia, difficulty with concentration had significantly risen (48%) followed by memory loss (47%). In terms of emotional distress, many also experienced an increase in feelings of agitation or restlessness (45%), and intensified feelings of apathy (33%).
Elsewhere, the Office for National Statistics (ONS) released deeply troubling figures. In the period between March and September, there were 2,095 excess deaths from dementia. This is a 79% increase in comparison to the same period over the last five years. In Wales, figures were even higher having risen by 94%, with 133 excess deaths.
Commenting on the situation, Cheryl Williams from the Alzheimer’s Society, said: “The disproportionate number of people with dementia who have died during the pandemic is something that should concern us all. Certainly many care homes didn’t have adequate PPE [personal protective equipment] for staff at the outset of the pandemic”. She added: “Lack of face-to-face contact with family, friends, social interaction – it’s had a profound impact,” she said”.
Of course, the government’s decision to send approximately 25,000 hospital patients into care homes, without testing many of them, had a dangerous impact. Amnesty International branded this decision as one of the government’s “biggest and most devastating mistakes”.
Worryingly, leaked government policy plans seem to indicate there will be a repeat of these mistakes. In documents seen by Amnesty International, local authorities are asking care homes to provide “stand-alone units” for recovering COVID-19 hospital patients. This means care home staff who do not have medical training, or adequate PPE, will be running small wards, alongside caring for other elderly people without the disease.
Highlighting the potentially harmful nature of these plans, Kate Allen, Amnesty International UK Director, said: “As the country heads towards another peak of cases, it is incredibly worrying that care homes are being asked to take in Covid-19 patients without adequate support, effectively putting the lives of their residents and staff at risk”.
On 22nd July, the government published its guidance on care home visitation. It outlined that local directors of public health were to make decisions on care home visits. It also stated that risk assessments would take place on specific care homes within the community context. On top of this, it outlined that visits could take place with “appropriate precautions,” such as wearing face coverings, and complying with social distancing measures.
This guidance faced significant criticisms from across the board due to its lack of clarity and lack of centralised accountability. In response to the guidance, John’s campaign sent a pre-action protocol letter to the Secretary of State for Health and Social Care Matt Hancock.
In this letter, the campaign group challenged the guidance’s legality. Specifically the group stated that the guidance breached:
Although the campaign group was geared up to take legal action by filing a claim for judicial review, the Department for Health and Social Care (DHSC) requested for the group to wait, as new guidance was imminent.
On 15 October the government published this new guidance. It advises that care homes not deemed high risk or very high risk can draw up policies for visitation. Further to this, it outlines that for each resident, individualised assessments should be drawn up, taking into consideration the importance of resident visits.
In situations where care home residents are in high or very high risk areas, the guidance states that visits should only be permitted in exceptional circumstances, such as end-of-life. Additionally, in high risk and very high risk areas, the guidance recommends that virtual visits should be arranged for family members.
The guidance also states that the local director of public health, in association with the care provider, should develop approaches in line with the Equality Act 2010, and the Human Rights Act 1998.
Following the publication of the government’s new guidance around care home visitation, John’s campaign voiced it’s disappointment, and stated that it remains unlawful.
Reflecting on the changes, while the campaign group welcomed the clarity provided on individualised assessment for medium risk areas, elsewhere it found the guidance lacking. Fundamentally, the group criticised the guidance for the blanket ban it encouraged for over half the country which is at high risk and very high risk of COVID-19.
Court documents submitted by the group on Tuesday 27 October, argue that the guidance misstates the law, while also being unclear and misleading. Additionally, it states that the guidance encourages unlawful decisions to be made, with an unacceptable risk of illegality.
The judicial review application also argues that visitation bans have contributed to the excess deaths of 5,404 dementia patients in lockdown.
In a statement the co-founders of the campaign group said: “The cruel and unnecessary gap between the law and the Government guidance has already caused deterioration and premature death among many of those living with dementia in care homes, and has inflicted anguish and despair on thousands of residents and on their families”.
They added: “We hope that – after unacceptable delays to the legal process – the Government will finally proceed swiftly, so that this inhumane situation can be brought to an end and men and women who are in the last stage of their life can be reunited with those they need and love and have sorely missed.”
Leigh Day partner, Tessa Gregory, representing the group, said: “Life expectancy of care home residents is already only two and a half years from admission and for the past seven months the Government has had in place policies that unlawfully encourage blanket bans on visits by family members. Our clients together with countless others have tried to campaign for change but their calls have been left unheeded. Given the devastating impact the Government’s “blanket ban” approach is having on residents and their loved ones, they consider they have been left with no option but to issue these proceedings”.
She added: “John’s Campaign are asking the court to hear their case on an expedited basis as this situation needs to be urgently resolved to make a difference to the thousands of care home residents currently facing a premature death alone.”