John's Campaign, a group which campaigns for people with dementia to be supported by family carers, has issued urgent court proceedings challenging the Department of Health and Social Care (DHSC) guidance for visiting in care homes ("the Guidance").

The group says that the guidance, which was updated on 15 October, is unlawful as it encourages care homes in higher risk areas to institute blanket bans on family visits.

The papers submitted to court on Tuesday include supporting evidence from a wide range of organisations and individuals such as: Age UK, Alzheimers Society, Residents and Relatives Association, Butterfly Scheme, Rights for Residents, a leading psychologist from the UCL Dementia Research Centre and an infection control nurse. .

John's Campaign argue in the court case that the suspension of visits to care homes has had and continues to have a catastrophic effect on care home residents, particularly those with dementia (who account for 70% of those residents), with many suffering a rapid deterioration of their symptoms, and premature death. .

The devastation that enforced separation is causing is supported by the accompanying evidence and set out in a number of case studies submitted to John's Campaign. A leading infection control nurse and former President of the Infection Prevention Society of UK and Ireland reports that she has seen "multiple examples" of people in care homes "suffering both physical and mental deterioration exacerbated by restrictions" which include some of "the most heart breaking stories I have come across in my 30 year career as a nurse". .

These stories are amplified by the distress and guilt felt by family carers, many of whom had structured their life around visiting and looking after their loved-ones in care homes until the start of the pandemic, and who now watch helplessly as they deteriorate. .

John's Campaign began its legal challenge in the summer, before the Tier system of local restrictions was imposed and after the Guidance to care homes had been issued by the DHSC. .

The group was all set to apply for judicial review to challenge the lawfulness of the Guidance and Winter Plan in mid-October, but the DHSC asked the group not to issue proceedings because updates to the guidance were due which would directly impact on the proposed case.

Whilst John's Campaign welcomed changes to the Guidance that made clearer the need for individualised risk assessments in 'medium' risk areas, they say the new Guidance has made the situation worse in over half of the country because it once again recommends blanket bans by stating that in  'high' and 'very high' risk areas "visiting should be limited to exceptional circumstances only such as end of life".

The judicial review application is on the following grounds:


  • The Guidance misstates the law: It suggests that for all residents in 'high' and 'very high' risk areas, visits should be limited to exceptional circumstances such as end of life, and that a "general policy" for all residents may be adopted. In fact, care home providers are under a legal obligation in all areas to carry out individualised risk assessments and the Government's own lockdown legislation provides a general exception for visits in care homes to take place. The Guidance is thus unclear and misleading; it encourages unlawful decisions which, the evidence shows, have in fact been taken. 
  • The Guidance creates an unacceptable risk of illegality: the evidence shows that Directors of Public Health and care providers have in fact (and understandably) interpreted the Guidance as requiring a blanket suspension of visits in high and very high risk areas aside for exceptional circumstances such as end of life.  

John's Campaign argues the ban on visiting has contributed to the excess deaths of 5,404 dementia patients in lockdown, a rise of 52.2 per cent, the largest increase in non-Covid-19 deaths compared to any other health condition. They also submit that there is no scientific basis for generally preventing visits in the name of infection control, noting that the Government's own Social Care Taskforce has commented "Importantly, we have heard that visits can happen safely and in a way consistent with infection control, but individual risk assessments are crucial to this".

Julia and Nicci 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. "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 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.

"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."

John's Campaign is represented by Tessa Gregory and Carolin Ott of Leigh Day and David Wolfe QC and Jessica Jones of Matrix Chambers.

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