Why multi-agency working, not accommodation type, is the key to better outcomes for people with epilepsy

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People with learning disabilities are twice as likely as the general population to have had deaths that were avoidable, and nearly three times more likely to have had deaths that could have been avoided by the provision of good-quality healthcare (Heslop P et al 2013).

Around half of all people with a learning disability also have epilepsy, and approximately one in every four people with epilepsy are also diagnosed a learning disability (Kerr M 2012). Within the general population people diagnosed with epilepsy are 11 times more likely to die prematurely (Fazel S, Wolf A, Longstrom N et al 2013).

With the acknowledgement that individuals with a learning disability are more likely to die prematurely for this where this is combined with epilepsy then this risk increases by 9.7 % (Glover G Ayum M. 2010)

Noncompliance with a prescribed anti -epilepsy medication regime is linked with increased morbidity, sudden unexpected deaths as well as increased costs to the healthcare system.

The research has been completed to establish if there is a relationship between compliance with anti-epileptic medication in people with a learning disability and their living arrangements.

Three separate types of living arrangements were identified for the purpose of the study, residential care, living in the community with support (ranging from daily to weekly), and living in the family home where the main carer is a family member.


The research accessed information from two separate sources. Pharmacy billing records were accessed to identify individuals who had been prescribed anti-epileptic medications over a six month period. It as then possible to identify individuals from the data who had not collected enough of the required medication for a six month period. Individual records were classed as “non adherent” if they had 25% or more of the period without access to this medication.

This was then cross matched against clients of Regional Centre of Orange County, who co-ordinate services for people with a learning disability. This was done by cross checking social security numbers against the two data sets.

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Information was accessed from pharmacy billing records and cross matched against records from local services for people with a learning disability


A 793 person sample was examined, and consisted of 107 children, 686 adults of whom 479 were males and 314 were females.

The living arrangements were made up of

  • 69% in residential homes,
  • 23% in family homes,
  • 6% in community settings.

The rates of non-compliance were

  • 32%, in family homes where the identified carer was a family member,
  • 20% in community settings,
  • 6% in in residential provisions.


The results demonstrate a clearly defined relationship between compliance with anti-epilepsy medication in individuals with a learning disability and the setting in which they live.

The authors suggest that high levels of supervision, monitoring and regulation that is legally required in residential settings is the main reason why there are high levels of compliance with medication regimes.

They also suggest that paid carers employed within group home provisions may be more educated in the importance of medication adherence and may have a greater awareness in the use of specialist strategies that increase co-operation from individuals.

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There was a clearly defined relationship between compliance with anti-epilepsy medication in and the setting in which people lived

Strengths and Limitations

This research was completed within a small subsection of America and it is difficult to establish whether the results of this can be readily transferred to practice in the UK. The sample size doesn’t appear to be representative of the living arrangements for people with a learning disability in settings in the UK.

Within the UK, research by Mencap suggests that the demographics for our Learning Disability population are quite different.

  • living with family or friends – 65,000 people (38%)
  • living in registered care homes – 38,000 people (22%)
  • living in supported accommodation – 27,000 people (16%)

There is no distinction within the community settings as to whether the support provided is 24hr therefore our equivalent of Supported Living provisions, or individuals that may be fairly able and manage their own tenancies in the community with minimal support provided.

There is also no distinction made between the individuals who have the capacity to manage their own medication and those that lack capacity, and are dependent on others to manage this on their behalf. I feel that these differences within individuals are more significant and meaningful than where they live as these provide indicators of individuals dependence upon a carer to have this managed on their behalf.

The research uses quantitative methods which means there is no insight into what individual reasoning for non-compliance might be. There is also an underlying assumption that prescriptions that were filled were administered as prescribed.

The research acknowledged that the pharmacy were unable to provide any reasons that may have been given for the prescriptions remaining unfilled, for example if there had been side effects or adverse drug interactions.

This could perhaps be explained by differences in the terms used to describe the differing housing models between the UK and the US. In the UK the term “Supported Living” is often quite nebulous, and can have different meanings to different groups. In this way there could also be differences in American usage of “residential or care homes”. This could mean that for purposes of comparison we are not looking at “like for like”.


It is clear from the research completed that there is a relationship between where people live and their adherence to the prescribed medication regime. When this is coupled with the links between morbidity and premature death in this group this gives evidence base that needs significant consideration when working with people with a learning disability to achieve alternative accommodation. As social care professionals who are frequently working with this group to meet outcomes around housing, whether this is into residential provisions or into their own tenancies we need to be mindful and awareness of this relationship, in order to ensure the best quality of life available to them.

Multi-agency working across health and social care professionals is essential to ensuring that individuals care and support plans health and social care needs in an integrated manner, particularly when they are moving setting for example during transition from Children’s services to Adult services. Ensuring that staff or carer, whether in a residential setting or those providing support in the community have the accessed good quality training and have a thorough understanding of medications and protocol around the management of an individual with epilepsy.

The management of someone’s epilepsy needs to be underpinned by a thorough assessment of an individual, to enable positive risk taking and to consider the use of assistive technology to be considered if appropriate.

This study also highlights the potential risk around individuals living in a family home. Practitioners need to be aware of this to ensure that family carers have equal access to the support and training that is available to paid carers to ensure that they are educated around the risk, and the responsibility of managing this condition effectively.

Underpinning the Mental Capacity Act needs to be considered under which the neglect of an individual that lacks capacity is a criminal act which is punishable by law.

A Health Action Plan (HAP) should be part of any individual with Learning Disability package of support. I feel that this is the responsibility of the Social care Professional involved with the person, to ensure that this is offered, completed and updated as a live document that travels with the individual. This should be in conjunction with the individual’s Annual Health Check, as set out by the DoH (2011). This should be the method of ensuring that all of an individual’s heath care needs are met, including those very specific needs around epilepsy management.

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Multi-agency working is essential to ensure care and support plans meet needs in an integrated manner


The relationship between living arrangement and adherence to antiepileptic medications among individuals with developmental disabilities C. L. Hom, P. Touchette, V. Nguyen, G. Fernandez,1 A. Tournay, L. Plon, P. Himber I. T. Lott, Journal of Intellectual Disability Research, 59, 1, 48–54 [abstract]


Heslop P, Blair P,Fleming P, et al 2013 “The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study” Published online 11 Dec 2013

Kerr M 2012 “About Learning Disability and Epilepsy” from Epilepsy.org.uk https://www.epilepsy.org.uk/info/learning-disabilities/causes accessed on 02/03/15

Fazel S, Wolf A, Långström N, et al. Premature mortality in epilepsy and the role of psychiatric comorbidity: a total population study. The Lancet. Published online July 22 2013

Glover G, Ayub M 2010 “How people with Learning Disabilities Die” Improving Health and Lives: Learning Disability Observatory

Mencap “Housing and Learning Disability: The Facts” (www.mencap.org.uk/sites/default/files/documents/Housing%20and%20learning%20disability.pdf accessed on 06/03/2015)

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Jill Hughes

Jill is an Advanced Social Work Professional in the Young Adults Team in Worcestershire, UK, which manages transitions for young people with disabilities and complex health needs between Children’s Services and Adult Services. She has led on Practice Development Groups, facilitated reflective and interactive supervision in both one-to-one and group sessions, and she has a particular interest in personalisation and person-centred planning. Jill also provides sessional lectures to students completing access courses, BA and MA studies at the University of Worcester and Heart of Worcestershire College. Jill's first book "Achieving Successful Transitions for Young People with Disabilities" is due to be published in June 2015 by Jessica Kingsley Publishers.

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