The experience of the COVID-19 pandemic in a UK learning disability service: lost in a sea of ever changing variables – a perspective

Introduction

Before the COVID-19 (Who.int 2020) outbreak and subsequent pandemic, this particular Learning Disability Service was a busy place with regular day to day and urgent clinical work. The COVID-19 pandemic has had significant ramifications across the world. In turn this has had an enormous impact on the Service. The restrictions made by governments will likely have a variety of consequences on people with Intellectual and Developmental Disabilities (IDD) across the world. These will include the effect of this pandemic on care and support, welfare benefits and finance, social and emotional supports and physical and mental health.

The Learning Disability Service mentioned is a UK based service for people with IDD. (Using UK based terminology it is described as the Learning Disability (LD) Service.) The service is run by the National Health Service (NHS) and covers a population of approximately 660,000 people (Nrscotland.gov.uk 2020). It provides care for people with IDD of all ages in both the inpatient and outpatient settings. There is one inpatient unit providing to the community covered by the NHS territorial board.

The Service provides to adults (over 16s), in both the inpatient unit and in the community. People with IDD and mental health problems are referred for assessment, diagnosis and advice on treatment.

The LD Service is multi-disciplinary with Inpatient Nurses, Community Learning Disability (IDD) Nurses, Specialist Nurse Practitioners, Psychiatrists, Psychologists, Physiotherapists, Occupational Therapists, Dietitians and Speech and Language Therapists. The LD Service works closely with other agencies including Social Work, Care Providers and families.

The Inpatient Unit has nine general beds with day to day psychiatric input from a dedicated Consultant LD (IDD) Psychiatrist and a Specialty Doctor (middle grade hospital doctor). Physical health care is provided by local General Practitioners (GPs). The inpatient unit houses individuals with complex presentations. Most inpatients have a dual diagnosis of IDD, developmental and major mental disorders, including significant challenging behaviour. The majority of inpatients are subject to measures under national mental health legislation.

Outpatients are usually seen in community based clinics, at day centres and on home visits. The frequency varies depending on the complexity of the person’s needs. In addition to direct clinical contact, all disciplines can be heavily involved in the multi-disciplinary and multi-agency groups providing support to the person with IDD. Additionally there are requests for Psychiatrists to assess the capacity (the ability to understand, make, communicate, retain memory of and act on a decision (Nes.scot.nhs.uk 2020)) of a person with IDD.

The journey begins

Following the emergence of novel Coronavirus in China, towards the end of 2019, there was an awareness in 2020 that the virus would very likely spread to other countries and the UK would have cases. The devastation caused by the virus was evident in the news reports of the rising death tolls in China and Italy. Other nations were starting to utilise restrictions. Cases were being recorded in the UK, yet had not reached a level where measures had to be introduced. This created a horrible sense of helplessness, waiting for the rise in the infection rate, then the inevitable consequences of the pandemic and lockdown (GOV.UK 2020).

Realisation of the potential impact of COVID-19 on clinical practice within the LD Service started to dawn late February 2020. This was followed by changes to the provision of clinical practice and alternative models of service delivery. A complex inpatient and the impact a physical illness could have on their well-being brought the potential vulnerability of some service users into sharp focus. Discussion of what lay ahead and planning on how to provide services in the context of COVID-19 became daily exercises.

From the beginning of March 2020, government sources, national and social media put the UK on a ‘war footing’, with the virus as the identified enemy. Command structures across the NHS reflected this with an almost military style approach and indeed the deployment of two senior army officers to the NHS board for liaison work. Daily briefings provided advice and guidance to all medical specialities, directorates and disciplines. ‘Business as usual’ was effectively suspended and it was clear that there would likely be some deployment of staff to different areas.

From the week of the 16^th of March onwards clinical practice started to change and on the 23^rd of March the UK went into lockdown. In the ensuing weeks certain themes emerged both clinically and socially. The themes could largely be categorised as:

• Shifting Sands

• Vectors of Disease

• Gadgets and Gizmos

• No End in Sight

Shifting sands

Working in a Learning Disability (IDD) Service reinforces the importance of routine, structure and boundaries. There is an acute awareness amongst all professionals working in IDD services of how essential these are to good mental health (Mind.org.uk 2020). The daily briefing brings daily change, which is an uncomfortable truth for many working in IDD services, particularly when we are unable to give direct, clear and consistent advice to patients and their families. Not only is this a stressor for those who use the service, but it also presents difficulties to staff who perhaps feel they are unable to support and provide consistent guidance to their patients.

These stressors are having a very significant impact on staff morale and patient anxiety within the inpatient unit. There is so much new information to absorb and details on the guidance can change on an almost daily basis. In the early stages Psychiatry joined the daily Nursing handover and COVID-19 briefing meeting in the inpatient unit. This did boost morale and gave a daily routine and sense of involvement. However, this involvement has been withdrawn to reduce footfall in the unit and therefore hopefully reduce the potential for transmission.

For the outpatients, the Service started with offering remote contact where possible rather than face to face contact. Many carers pre-empted this move and cancelled their appointments ahead of time, advising that all was well and they could wait to be seen at a later date. When seeing people with IDD directly there was initial advice that no Personal Protective Equipment (PPE) was required unless symptoms were present. Now the guidance is to wear aprons and gloves no matter the clinical situation. This has practical implications for home visits. Service delivery has long focused on ensuring people with IDD are not stigmatised, however the public wearing of PPE makes health and care providers readily identifiable.

Vectors of disease

It is recognised that the population in contact with the LD Service is vulnerable on the grounds of their Learning Disability (IDD) alone. There are then increasing layers of vulnerability brought about by cerebral palsy, epilepsy, diabetes, obesity and respiratory conditions to name but a few (Prasher and Kapadia 2006). Some people with IDD are now shielding. The family have sent away carer supports and are providing higher levels of care themselves in the hope of preventing exposure to the virus. Others remain in a precarious situation with a team of carers going in and out and being in contact with other service users, the supermarkets and their own families.

The inpatient unit have stopped visits from anyone other than those providing essential care. This boils down to maintaining the nursing staff levels as ever before, weekly review by Psychiatry for all inpatients, with face to face contact with the patient only if clinically indicated and one ward based Occupational Therapist for face to face daily meaningful activity. All other departments are working via telephone consultation with the nursing staff or with the patients (should their level of Learning Disability (IDD) be compatible with this). Understandably, those within the inpatient unit are missing their families despite having phone contact at least daily. It feels like they are protected a little within the Unit, although this is a false sense of security as the nursing staff travel to and from work to their own families and have to make essentials trips to places such as supermarkets for food.

In order to reduce the risks of direct contact, Psychiatrists are consulting remotely where at all possible. In the main carrying out telephone consultation. This is very alien to the usual way of working when there is a reliance on visual details to inform mental state examinations. Often people with IDD are unable to communicate directly over the phone and it is the carer providing the information. The anxiety of this new way of working is balanced against the potentially tragic consequences of a direct contact with someone who should be shielding. Ensuring mental health is maintained without compromising someone’s physical well-being is a difficult balance for clinicians to achieve in the current climate.

Some people with IDD have recognised their own vulnerability to the virus. They are living in a state of hyperarousal with a marked increase in their anxiety levels. It is possible to treat the symptoms, but not the cause. Medication changes and psychological support can be offered but it is not possible to end the pandemic and the nationwide restrictions. While there have been modifications to the restrictions for some people with IDD, autism and other conditions, permitting more than one outing per day for exercise, it does not entirely replicate the routines of old. There is no social activity for now and the care providers are stretching themselves to meet the minimal essential care requirements for most.

Gadgets and Gizmos

Generally, as a Service, there is a lot of face to face contact with other agencies. This is not possible at present. Advice is to use teleconferencing where possible. This is not as easy as it sounds. While there is access to certain options, colleagues in other agencies are using different platforms. Any proposed flexibility is likely to compromise confidentiality. To now try and become familiar with the technology and obtain the relevant headsets and webcams with brains already overloaded by the surge of changing information is a huge pressure. However, contrary to expectations, some people are expressing a preference for this type of approach.

For the clinicians finding it a challenge, it is a greater one for people with IDD and their carers. Some people with IDD might be regular users of Facetime and the like, however others will have no interest in or understanding of such an abstract concept as pictures on a screen. There is then the added layer of complexity of being unable to control for confidentiality at the other end of the video link. For many service users, support staff will control the privacy of the environment, however this will not be possible for all.

It would be possible to consider personal protective equipment (PPE) to be in this category. Over the course of the pandemic the guidance has changed on numerous occasions. It should be clearer now, but will continually need to be reviewed and reinforced as a new ‘ask’ of staff. There are differing reports in the scientific journals and in the media regarding the evidence of how protective particular types of PPE are and not everyone is familiar with the medically used PPE and what is protective in non-medical settings.

The nursing staff face a much bigger dilemma in this regard. Some people with IDD do not tolerate the visual changes of wearing gloves, or masks or aprons. They will endeavour to remove this from the staff creating risk of physical harm. Should a person in this category be positive for severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) at any point they may be placing the staff at considerable risk of infection with a high viral load through behaviours such as spitting and smearing.

No end in sight

While some countries are preparing roadmaps of the route out of lockdown with detailed phases, there remains the uncertainty of when each phase will be introduced and the likelihood that there will be backward steps as well as forward steps if the infection rate rises too rapidly. It is not possible to adhere to the standard advice to share factual, consistent, concrete information (Autism.org.uk 2020) when it comes to the future during the pandemic. There are many questions to answer. Service users are keen to know when they will be able to enjoy visits from family, go swimming, go to the cinema and such like, but the exact dates and schedules are as yet undetermined.

This uncertainty is having a detrimental effect on mental health. An example of this is a young man in his late 20s with generalised anxiety. He wants to know when he can see his sister and attend his weekly gardening group. The lack of clear answers, and the very real threat of the virus itself left him low in mood with suicidal ideation requiring hospital admission to maintain his safety.

Again conversely, there are reports of some individuals managing better under the lockdown restrictions. An example of someone who has fared better under lockdown is a young man, significantly affected by Autism Spectrum Disorder. He had a change of care provider at the end of 2019 and moved to an Autism Specific residential care provider. With the lockdown restrictions, this care service halted all visits to the home. There was concern that this would have a detrimental effect on the service user, however, the very predictable daily routines, and the reduced demand following withdrawal of community activities to allow for social distancing have led to this young man being much more settled and content.

A further example is of a woman in her 30s with social anxiety and avoidance, where input had been focused on increasing her community presence, which caused her considerable anxiety and distress. She is much more settled and relaxed under the lockdown restrictions.

For these two people and others with similar experience there is no pressure now. They do not have to go out. They can stay in their safe space with no demands. The issue here is that they will become increasingly social isolated and it will be a long journey back to engaging in social activity (Jones 2020).

A bridge over troubled water

At the time of writing, despite the changes and the restrictions there is some hope. People with IDD who need our help are getting our help in whatever form best meets their needs and circumstances. There has been adaptation to a new normal. Some service users have expressed a preference for the remote clinical contacts and in future there may be a long-term role for the use of technology. The benefit of this approach could also be utilised for those in very rural areas, reducing the need for clinician travel, which in turn reduces costs and benefits the environment.

For the staff there is a fine balance between the anxiety created by coming to work each day with the increased exposure risk it brings to staff and their households and the benefits to mental health of getting out of the house and having a bit of routine. There is also a true sense of camaraderie. The Community Nurses are supporting the Inpatient Nurses by working shifts to ensure safe staffing levels. The psychologists are offering support to staff as well as to patients. The administrative staff are working flexibly and providing cover for each other.

While most remember the 2009 H1N1 pandemic (Centers for Disease Control and Prevention 2020), the local implications were in no way comparable to the current pandemic. Each day brings more learning and the knowledge builds resilience. Restrictions will likely lift in the near future only to be re-imposed at a later date. When this time comes, it will no longer be a novel situation. Previous experience can be applied and can lessen the uncertainty. In the longer-term service design can ensure contingency in terms of estates, practical resources and human resources.

Disclosure statement

No potential conflict of interest was reported by the authors.