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John’s Campaign Judicial Review Witness Statement: Clive Parry on behalf of the Association for Real Change (ARC UK)

by

For the Claimants

Clive Parry on behalf of the Association for Real Change (ARC UK)

 7 June 2021

IN THE HIGH COURT (ADMINISTRATIVE COURT)                             CO/  /2021

IN AN APPLICATION FOR PERMISSION

TO APPLY FOR JUDICIAL REVIEW

BETWEEN:

 

THE QUEEN (on the application of JOHN’S CAMPAIGN

(acting through (1) NICCI GERRARD and (2) JULIA JONES))

  

Claimants

and

THE SECRETARY OF STATE

FOR HEALTH AND SOCIAL CARE

 

Defendant

______________________________________________________________

WITNESS STATEMENT OF CLIVE PARRY

            ______________________________________________________________

 

I, Clive Parry of the Association for Real Change (ARC UK), ARC House, Marsden Street, Chesterfield, Derbyshire, S40 1 JY WILL SAY AS FOLLOWS:

  1. I am Director for England at the Association for Real Change (ARC UK), a leading umbrella body representing service providers in the learning disability sector, and I make this statement in support of the claimant’s application for permission to proceed with a judicial review challenging the Secretary of State for Health and Social Care’s Guidance on 14 days self-isolation after overnight visits out of care homes and when individuals are admitted into care homes.
  2. Except where I indicate to the contrary, I make this witness statement on the basis of the facts and matters within my knowledge. Where these facts and matters are within my own knowledge, they are true. Where the facts and matters in this witness statement are not within my knowledge, they are true to the best of my information and belief. I understand that proceedings for contempt of court may be brought against me if I have made a false statement in this witness statement without an honest belief in its truth.
  3. I have prepared this statement in liaison with the Claimants’ solicitors at Leigh Day who asked me to address certain questions via telephone and email. We have not met in person due to the Covid-19 public health emergency.

Background

  1. ARC is a membership organisation supporting anyone who is involved in the planning or delivery of support or services for people with a learning disability, autism or both. Many of our members provide those services within Care Quality Commission (CQC) registered care home settings.

 

  1. In our view, guidance issued by The Department for Health and Social Care (DHSC), Public Health England, Local Authorities and Clinical Commissioning Groups (CCGs), throughout and especially during the early stages of the pandemic, has often been poorly co-ordinated, inconsistent, unclear and occasionally inappropriate. In part this was because when the term adult social care was used in such guidance, it was often the case that the messages were for and about providers of care for elderly people in residential care homes and not the residential care homes in which learning disabled people who are not necessarily elderly and frail live.

 

  1. In these later stages of the pandemic, we have a much better understanding of infection control and considerable rates of vaccination, particularly among care home residents. Public concern and media interest in the ways in which the spread and impact of the virus was managed in care homes for older people in the early stages of the pandemic is, however, continuing to drive what can only be described as a reactionary and overly cautious approach by the Government in respect of the guidance they are issuing and stance they are taking in relation to residential care settings.

 

  1. This risk averse approach may not align well with the current risks in care homes for older people but it certainly does not align well with the operation of homes in which people with a learning disability, autism, or both live – and the guidance on visiting out, in particular, the requirement to isolate for 14 days on return from a visit out where this is overnight (including to a hospital) or on admission to a care home is a particularly stark example of this.

 

  1. Many of the learning disabled and/or autistic people ARC UK members support will not understand the reasons they have lived with significant restrictions during the last fourteen months. The ability to engage in activities outside the home, to meet with friends and family and to start to live a more normal life in the same way that other UK residents are now able to may be of particular importance in relation to their mental health needs and wellbeing. This is especially true for people for whom being outside the care home is part of a strategy for managing stress / distress / behaviour which challenges others. The imposition of a requirement that they isolate for 14 days after an overnight visit is, in many cases, likely to make it practically impossible for learning disabled and/or autistic residents of care homes to engage in any activities outside the home that are further away and require an overnight stay. This is particularly difficult for those care home residents whose families live far away and/or whose care plans envisage regular, extended stays away from their care home. The isolation requirement is so onerous and likely to have such a negative impact on them, or be very difficult for them to understand and comply with that the trade-off would be too harsh.

 

  1. In our experience, the care plans of many individuals with learning disabilities and other similar conditions often include provision for regular trips out of the care home, including for extended periods and overnight stays. This is to facilitate contact between the resident and their family and to increase their contact and involvement with the broader community. For many who were previously used to spending weekends or even several weeks at home at a time, the inability to undertake such visits will result in them becoming increasingly cut off from the outside world and will prevent them from embracing routines that are part of care plans specifically tailored to their needs and designed to advance independent living. This will almost certainly have a negative effect both on their mental health and their ability to continue to build social skills and manage stress, distress or behaviour that challenges others.

 

  1. These concerns also apply to requirements to self-isolate on admission into a care home. In circumstances where individuals will already be finding themselves in completely new environments and having to adjust, which can be extremely stressful and anxiety-provoking particularly for individuals with learning disabilities, it will be even harder for them to come to terms with their new situation if they are kept completely isolated in their rooms, removed from others in the home, and therefore lonely and disoriented. The period of adjustment will become significantly harder and the negative emotions and experiences associated with the new environment may adversely impact the individual’s ability to come to terms with their new surroundings for a long time to come, or worst case, might prevent them from settling into their new environment altogether.

 

The Guidance

 

  1. We understand that the DHSC have stated in the context of these proceedings that the guidance on visiting out is advisory and this is consistent with legal advice obtained by one of our providers, but to us and our members it reads as though it is mandatory in nature and certainly gives the impression that providers must follow it. Until we were told that it was only advisory, we had understood it to be mandatory and in our experience that remains the understanding of much of the sector, both because of the content and tone of the Guidance and because providers are acutely aware of the potential consequences of not treating the guidance as mandatory. There are several reasons for this.

 

  1. Firstly, our members have expressed concerns that not complying with the guidance may invalidate insurance policies and / or affect CQC inspection ratings, both of which may carry serious consequences for providers. Furthermore, there are potential reputational risks associated with non-compliance as well as concerns about how family members will respond.

 

  1. In addition, care home providers have told us that they have felt themselves to be under particular scrutiny and have sometimes been criticised unfairly or scapegoated (for example in relation to the use of PPE during the early stages of the pandemic), such that reputational risks are heightened. That creates additional pressure to comply with the approach seemingly mandated by Government guidance.

 

  1. If the guidance is intended to provide a broad framework within which providers are able to assess and manage risk locally and on an individual basis, it does not communicate that as its intention: the tone and content is both detailed and prescriptive, and mandatory language is used.

 

  1. For these reasons, it should be no surprise that providers are very reluctant to depart from this DHSC guidance without clear authorisation to do so (and, indeed, understand themselves to be under an obligation to comply). It is my experience and expectation that most providers with whom we work are likely to apply the Guidance on its literal reading.

 

Concluding Remarks

  1. As an organisation representing the sector supporting individuals with learning disabilities, we consider that the visits out guidance has particularly harsh and disproportionate effects for care home residents who have a learning disability. The guidance to isolate for 14 days after overnight visits (including hospital stays) and admission into the home, wrongly assumes that they (and the other residents in their care setting) are always frail and always face additional risks in relation to the virus and on this basis, they are required to self-isolate for 14 days, regardless of the actual risk faced or presented by the individual. There is no real balancing of actual risk of infection and benefits of overnight visits or not having to be completely isolated when thrust into a new environment.

 

  1. We know from our members that guidance which requires residents to isolate for 14 days following an overnight visit out means that many will simply not be able to undertake such visits out or participate in any activity out of the care home that might necessitate an overnight stay. Where this is the case for a relatively young person in good health, this means a further unnecessary extended period of lockdown that prevents the person from living a normal life over which they have choice and control in the same way other citizens can. In our view this amounts to a discriminatory, unjustified blanket restriction.

Clive Parry

Signed:

Dated: 7th June 2021