Written evidence submitted by Embracing Complexity (MRS0110)

About Embracing Complexity

Embracing Complexity is a coalition of 53 organisations working together to co-ordinate campaigning and research for people with neurodevelopmental conditions (NDCs). The coalition is led by Autistica, the UK’s autism research charity. Our first two reports, published in May and October 2019, are available at www.embracingcomplexity.org.uk. We estimate that around 1 in 10 people have a neurodevelopmental condition,[1],[2] including but not limited to autism, learning disability, dyslexia, dyspraxia, ADHD, Tourette syndrome, and research shows that this group already experience significant health inequalities. People with NDCs face particular challenges as a result of the COVID-19 outbreak and the subsequent changes to our way of life, at a time when their existing support systems are likely to be curtailed due to pressures on health and social care services and the charity sector.

Current challenges faced by people with NDCs as a result of COVID-19

People with certain NDCs, including Down syndrome and other learning disabilities, are already more prone to respiratory difficulties; sadly, this is a recognised contributing factor in the high premature mortality rate in this group.[3],[4] In addition, some people with NDCs may find it very difficult or impossible to understand and observe social distancing, proper hand-washing, and other guidance for keeping themselves safe. When people with NDCs do become ill, they may have difficulty in booking appointments, navigating healthcare environments and understanding and being understood by health professionals.[5],[6],[7],[8] The move towards remote appointments may exacerbate this; some people with NDCs find telephone or video calls very difficult, while physical changes may be harder for professionals to spot themselves when the patient struggles to explicitly communicate them. Emerging evidence suggests that those living in residential settings for disabled people may be at particularly high risk of contracting and dying from COVID-19, similarly to elderly people in care homes.[9]

People with NDCs may also face particular challenges in the event that they require hospital treatment for COVID-19. They may find the disruption to their usual routine especially challenging and may struggle to communicate with professionals wearing personal protective equipment (PPE) which restricts their ability to gauge facial expressions or use sign language. There have been serious concerns from our members about reported use of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions on people with NDCs, as well as NICE critical care guidelines which initially advocated the population-wide use of the Clinical Frailty Scale (CFS) designed for elderly people. As the CFS criteria includes ability to carry out certain tasks without support, it could unintentionally find frailty in otherwise healthy people with NDCs, potentially denying them access to critical care. We welcome the recent clarifications by NICE[10] and NHS England[11] that the CFS should not be used with this group and that NDCs are never a reason to issue a DNACPR decision, but the extent to which this message will reach healthcare professionals remains to be seen. This issue must continue to be monitored.

In addition to these increased risks to their physical health, people with NDCs and their families are also at greater risk of developing mental health difficulties.[12],[13],[14] Many people with NDCs  struggle with anxiety, managing uncertainty[15] and social isolation, and the COVID-19 outbreak and resulting lockdown are exacerbating these challenges. People with some NDCs, such as Rett syndrome, and their families will be required to isolate completely for 12 weeks, which will have a particularly significant impact on mental health and family relationships.

During the current crisis, new guidance on the Mental Capacity Act in light of COVID-19[16] highlights the likelihood of changes to care and treatment for people without the relevant mental capacity to consent. Deprivation of Liberty Safeguards assessors are advised not to visit care settings unless this is essential; some people with NDCs may find remote communication particularly challenging. In the event that a person’s movement needs to be restricted due to COVID-19 infection, carers are advised to explore the use of the Mental Capacity Act as far as possible; this could create a situation in which people with NDCs who contract COVID-19 are restricted under the Mental Capacity Act while others in an identical situation are restricted under the Coronavirus Act.

Following school closures, parents are suddenly expected to educate their children at home with no training and limited resources; this is very challenging for all families, but particularly those with children with NDCs for whom available educational resources might not be suitable. This comes at a time when organisations that provide training and resources around NDCs are having to reduce services and furlough staff; where the Government are already paying these staff through the furlough scheme, there may be an opportunity to allow them to volunteer to develop these materials for wider use. In addition, it may be harder for teachers to spot signs of educational difficulties in their pupils when teaching remotely, which could lead to delayed or missed diagnosis of NDCs such as dyslexia which are typically “caught” by the education system. Those who have particularly high support needs, coupled with a reduction in access to carers, may be unlikely to access home education at all. The home education of siblings of children with NDCs may also be impacted by the need for parents to provide care, support and education unaided to children with NDCs.

Where schools remain open for children in need, the Coronavirus Act provides for a possible relaxation of the Children and Families Act duty to secure provision for children with special educational needs.[17] It is concerning that only 5% of vulnerable children entitled to attend school are currently attending;[18] with the right support, our sector has a role to play in exploring the reasons behind this. It is crucial to ensure that children with NDCs are adequately supported through the current crisis and through their return to school, both of which will be particularly difficult times for them. Many children with NDCs experience acute anxiety in school settings and it is likely they will find it significantly harder to return to school than the average pupil.

Furthermore, people with NDCs are likely to face these increased challenges with less support than usual. The economic impact of COVID-19 and the cancellation of fundraising events means charities are experiencing a significant reduction in income, often coupled with increased demand. When we asked Embracing Complexity’s member organisations to tell us more about the impact of COVID-19 on their work, over a third said they had furloughed staff or planned to do so, almost 6 in 10 have had to suspend training, research and other services, and some of our members fear being forced to close altogether. Our membership includes several small national charities supporting people with rare conditions; with the Government’s existing current support offer directed primarily at local charities or very large national organisations, people with rare conditions for which local charities would not be viable risk falling through the cracks. It is vital that the Government ensures they and other charities are adequately supported through the current crisis and beyond to deal with the lasting effects of this outbreak for people with NDCs.

Long-term challenges faced by people with NDCs as a result of COVID-19

At the same time as the anticipated rise in mental health difficulties, the Coronavirus Act allows for relaxation of the Mental Health Act;[19] it is likely that soon, one doctor will be able to approve sectioning rather than the usual two, the appeals system will be effectively suspended, and time limits on mental health detention may be extended. People with NDCs, particularly autistic people and people with learning disabilities, are already disproportionately represented in inpatient units;[20] these are often unsuitable for their needs, preventing recovery and resulting in many remaining in inpatient units long-term. These changes to the Mental Health Act may exacerbate the problem, with more people with NDCs being sectioned for longer. The changes should be monitored closely and should not be kept in place for longer than necessary.

Many members are particularly concerned about the easements to the Care Act,[21] which have already come into force. Under these easements, local authorities who become unable to comply with the Care Act will not have to carry out the detailed assessments, financial assessments or preparation of care and support plans usually required. This could mean some people with NDCs who are newly seeking support – at a time when support needs are likely to increase due to the other pressures of COVID-19 – may be less likely to have their needs met. Meanwhile, duties to meet eligible care and support needs may be replaced with a power to meet needs, allowing local authorities to prioritise the “most pressing needs” over others. Again, this could result in people with NDCs receiving less support at a time when they need it most. In some cases, reduction in access to carers will leave elderly parents – who are themselves vulnerable – caring for their adult children with no support. The Government should closely monitor the impact of these easements and ensure they are not in place for any longer than necessary.

As the current crisis stabilises, we must not overlook the lasting impact on people with NDCs in the years to come. For many, adapting to the changes of a “new normal” will be just as difficult as adapting to the changes of lockdown. Mental health problems already common amongst people with NDCs are likely to rise and worsen significantly, and we still know little about the potential lasting neurological effects of COVID-19. As the job market worsens, the existing high rates of unemployment amongst people with NDCs[22] are also likely to rise, which again has a knock-on effect on mental and physical health[23] and will widen existing health inequalities. Some people with NDCs find navigating the benefits system particularly challenging, further exacerbating this financial impact. People with NDCs often struggled to access what limited support existed before COVID-19; existing support will not be enough to cope with rising demand in the aftermath. Greater investment, research and involvement of people with NDCs, their families and carers in service design and decision-making will be crucial to ensuring people with NDCs are adequately supported and have the same opportunities as their peers in the future.

April 2020