Step Together Integrating Care for People with Epilepsy and a Learning Disability

Abstract

Epilepsy is more common in people with a learning disability and/or autism than the general population. It is more likely to be difficult to control too. Seizures can have a profound impact on a person’s ability to live and enjoy their life. It also impacts on their level of learning disability and functional interaction with others. Poorly controlled epilepsy can also present as a huge burden of care and anxiety to family members and carers. Seizures are often distressing to witness, can require urgent intervention and can lead to injury or sudden and premature death. The recently published LeDeR report (2020) reminds us yet again that too often people with learning disability and/or autism die many years sooner than they should and epilepsy is a frequently associated cause of this. We know that good seizure control for individuals with the most complex seizures often requires complex assessments and investigations e.g. telemetry, genetic testing, brain imaging etc. It may require trials of treatments that can come with side effects and interactions with other drugs. With good seizure control, people’s lives, both in terms of quality and length of life, can be transformed. It is absolutely right, therefore, that we should expect the highest standards of investigations, care and treatment for people with the most complex epilepsy irrespective of whether they have a learning disability and/or autism. People with a learning disability and/or autism often have multiple professionals involved in their care and support for social care, health care and emotional and behavioural difficulties. Historically it has been quite complex and varied as to who the lead medical professional or team has been in managing a persons’ epilepsy. This has often depended on the history of service configuration and suitable clinical skill availability in localities. Specific interests and expertise of clinicians and what the local commissioning priorities have been have been instrumental in shaping local area services. This guidance does not recommend that only one type of professional or a particular team can or should be involved in leading epilepsy care for people with a learning disability and/or autism. More importantly it recognises the standards of care that people and their families should expect and describes existing competency/skill frameworks such as the bronze, silver gold levels suggested by the Royal College of Psychiatrists and collects these across professions to suggest a way of recognising aggregated standards of care and describing the ‘ideal service’. This should enable both commissioners of care and providers of care to recognise what is currently available to people and what could or should be available if their needs are going to be fully and satisfactorily met. It is clear more collaborative working between General Practice, Learning Disability Mental Health Services, specialist nursing services and Neurology/Epileptology services is needed and this is a welcome recommendation. This guidance should be used by commissioners of health care to audit and assure themselves that the services they are commissioning meet the needs of their population and that there is the correct aspiration to improve and provide access to 5* services when needed. It should be used by clinicians in both primary and secondary care to recognise service gaps and build more collaborative models of working. Families and carers should also look at the services they receive and see if they measure up to what they need using some of the ideas provided here. Whilst this guidance is specifically focussed on the needs of people with learning disability who have epilepsy there are many people with autism (without a learning disability) who also have epilepsy and the principles in this guidance should be equally applied to commissioning services for this group of individuals too. Perhaps for me, the most important thing is the need to end any sense of futility or nihilism. For far too long there has been an attitude amongst some professionals that more complex epilepsies are intractable and fully resistant to treatment. This may lead them to think it is futile to keep trying to improve the situation or that it is not a commissioning priority. This is countered by stories of individuals whose lives have genuinely been transformed by opportunities to have ‘fresh eyes’ assess their epilepsy or try new treatments. In order to decrease premature and avoidable mortality and to improve quality of life for people and their families, we must use this guidance to transform services and be ambitious for good epilepsy management and optimum seizure control for people with a learning disability and/or autism.