Living through the coronavirus pandemic – what are the urgent issues for families of people with learning disabilities with greater support needs in November 2020?
As part of our project [see more here www.covid19learningdisabilities.co.uk] we are finding out about the urgent issues for people with learning disabilities and families of people with greater needs as the coronavirus pandemic continues, so we can make sure our surveys reflect what matters to people over time.
These are the most important and urgent messages we heard about families caring for people with learning disabilities with greater support needs through the coronavirus pandemic as a second wave of lockdowns were beginning to hit across different parts of the UK. The issues families talk about are very similar across Scotland, Wales, Northern Ireland and England, and the issues we picked up are very similar to those reported across a range of sources (see our brief summary report www.covid19learningdisabilities.co.uk/results for a list of these sources).
Urgent issues for families are changes in support, health concerns, lack of access to family members in residential care/hospital, lack of information, experience of using digital platforms, impact on the family carer and impact of restrictions.
Changes in support. Reductions or removal of support during the coronavirus pandemic is a major issue for families. Changes to support include the removal of care packages, including home care, day centres and day activities, respite services, and reduced or no contact from community learning disability teams and other professionals. Some people are continuing to be charged for services and supports that have stopped. Face to face support has often been replaced by reduced levels of contact by phone. Direct payments have for some people been suspended or stopped, with no clarity about when they might be restored.
Assessments have also been delayed or their format changed in ways that people don’t always find helpful.
Some families are worried that local authorities may try to justify not restoring care using the rationale that families have been ‘coping’ during the pandemic. As support has been reduced or withdrawn, the caring responsibilities of families have increased, with an impact on their physical and mental health. For some families, the withdrawal of support to care for their relative at home meant that they were unable to sustain their care responsibilities and their relative has had to move into residential care.
Families across the UK are worried that emergency measures introduced to speed up decision-making during the pandemic have given rise to the return of paternalist practices. These include corporate parenting practices focusing on protection, and not involving families in emergency planning and risk assessments that should take account of the whole family’s mental health and wellbeing.
Family carers of people with greater needs, particularly people with profound and multiple learning disabilities (PMLD), have to interact with multiple agencies. Current pressures across services, including slow communication between them, are having a cumulative impact on the whole family including the person they care for.
Taken together, these issues mean that family carers can feel abandoned by services and professionals.
Health concerns. Families of people with learning disabilities and greater support needs are worried about the risk of COVID-19 infection to both themselves and their relative, and also worried that the health and wellbeing of their relative is deteriorating because they cannot get out to their usual activities. Some family carers are worried about going out with their relative because of other people’s behaviour increasing the risk of infection.
Families are worried about being able to get the healthcare they need for their relative, including GP appointments, routine hospital appointments, and getting prescribed medication. Changes to how healthcare is delivered, such as the increasing use of remote consultations, is a particular concern of family carers of people with PMLD, where physical examinations are crucial to monitor their relative’s health. There are also concerns about the lack of health input for people with PMLD in supported living or residential care.
Family carers are anxious about restrictions on accompanying their relative to health and hospital appointments, and not being able to stay with them if they are admitted to hospital. Family carers are particularly concerned about not being able to be present in medical decision-making processes, such as decisions on Do Not Attempt Cardiopulmonary Resuscitation orders.
Lack of access to family members in residential care/hospital. A big issue for family carers is not being allowed to visit their relative if they live in supported living or residential care. Some family carers with a relative with PMLD had not had any face to face contact with their relative since the pandemic began. Family carers are frustrated that paid carers are in regular contact with their relative but families cannot visit despite also performing caring duties. Family carers describe how they have devoted their lives to caring for their relative and now feel more invisible than before.
Lack of information. Families lack clear guidance on coronavirus and restrictions being imposed, including clearer guidance on shielding, PPE and testing. Clearer guidance on testing is particularly urgent for people with PMLD and those who need 24-hour support.
Experience of using digital platforms. Restrictions on connecting face to face have led to an increasing use of digital platforms to keep in contact for some families, but others who do not have access to this technology struggle to communicate with their relatives in supported living or care homes. Digital platforms can be more inclusive for some family carers as this is less disruptive to their daily caring responsibilities.
Impact on the family carer: The coronavirus pandemic is affecting both the mental and physical wellbeing of family carers. Families are taking on significantly greater caregiving duties, leading to families becoming emotionally and physically exhausted. Physical tasks such as moving and handling, personal hygiene, dressing, feeding and managing difficult behaviours have become increasingly difficult. Spending increased amounts of time together, in the absence of usual activities and routines, can result in increased tensions within some families.
There is no doubt that the life changes associated with the coronavirus pandemic are affecting the lives of families with people with learning disabilities and greater support needs across the UK. Shielding and social restrictions are significantly increasing social isolation and stress for some families, just as much needed services and supports have been reduced or withdrawn.
Chris Hatton and the Project Team