What action is being taken in Wales to support people with Epilepsy?

Published 26/03/2019   |   Last Updated 27/05/2021   |   Reading Time minutes

Purple Day events will be happening across the world today to raise awareness of Epilepsy.

Purple Day started in Canada in 2008, and events have now been adopted by Epilepsy charities and organisations across the world, including here in Wales. Partners of Purple Day include Epilepsy Society, Epilepsy Action and Epilepsy Research UK.

Purple was chosen because lavender is the international flower of Epilepsy.

More than 50 million people worldwide have Epilepsy, making it one of the most common neurological diseases globally – World Health Organisation.

Epilepsy Wales reports that public ignorance and misconceptions about Epilepsy can lead to fear and prejudice. The World Health Organisation (WHO) highlighted that it was only in 1971 that UK laws were changed to stop the annulment of marriage on the grounds of Epilepsy being permissible.

Epilepsy Society describes Epilepsy as ‘not just one condition but a group of many different ‘epilepsies’ with one thing in common: a tendency to have seizures that start in the brain’.

An epileptic seizure results from a sudden electrical discharge in the brain that causes changes in sensation, behaviour or consciousness. There are many types of seizure depending upon which parts of the brain are affected.

Epilepsy Action provides information on what to do if someone is having a seizure.

Epilepsy in Wales

In 2017-18 there are 24,629 people over 18 who have Epilepsy, in Wales.

This equates to 1 in 100 adults registered with a GP in Wales with Epilepsy.

According to the Welsh Government, the vast majority of childhood disabilities are neurological in origin, and paediatric epilepsy is the most common neurological disorder, affecting about 0.7% of all children.

Neurological Conditions Delivery Plan

The Welsh Government’s 2017 Neurological Conditions Delivery Plan highlights Epilepsy as one of the most prevalent neurological conditions in Wales. The report comments on the poor understanding of Epilepsy amongst the general public.

The children and young people section of the Delivery Plan highlights that the psychological needs of children and young people with Epilepsy are not being properly addressed; noting that there is no dedicated mental health support in many parts of the UK. It also highlights the significant role of specialist nurses in the care of children with Epilepsy.

Key actions from the children’s section of the Plan include:

  • Health Boards in collaboration with Local Authorities, will ensure patients with complex needs have appropriate, timely assessment of their continuing care needs.
  • Health Boards will develop and implement integrated and co-ordinated plans, for the transfer of care, from paediatric to adult services.
  • Health Boards in conjunction with primary care networks should develop named key health care professionals, to ensure continuity of care for children and young people with a neurological condition.

In March 2018 the annual statement of progress for this report was published. Key improvements included:

  • increasing spending on neurological conditions,
  • reducing the average length of time spent in hospital,
  • increasing focus on patient reported outcome and experience measures,
  • reducing the number of emergency admissions and total emergency bed days.

The statement also highlights areas of focus going forward, including:

  • Quick and easy access to a first outpatient appointment, when appropriate.
    • During 2016-17, 6,000 patients waited longer than 26 weeks for a first outpatient appointment for their neurological condition.
  • Ensuring that patients are seen and treated within 26 weeks following a referral.
    • During 2016-17, an average of 86% of patients were waiting less than 26 weeks each month from the date the referral was received in hospital, to the start of treatment (the target is ‘at least 95%’).

Wales Neurological Alliance and Cross-Party Group

The Wales Neurological Alliance (WNA) is a forum of organisations and groups representing people affected by neurological conditions (including Epilepsy) in Wales. Epilepsy Action and Epilepsy Wales are both members of the alliance.

The Assembly Cross Party Group (CPG) on Neurological Conditions, asked the WNA to collect information on how the Social Services and Well-being (Wales) Act (2014) is impacting people living with neurological conditions. The WNA’s survey found that people living with neurological conditions are missing out on vital support and services:

  • 73% have not been offered or requested a formal assessment;
  • 80% did not receive any services from a local council as a result of a care plan;
  • 64% did not see any information that would help them with a social care or support need; and only 37% were given advice from a professional that would help with a social care need;
  • 79% have not been referred to other organisations for support;
  • 46% have paid out of their own money for additional support.

This led the CPG to conclude that the Act is failing people living with neurological conditions. Mark Isherwood AM, Chair of the CPG on Neurological Conditions said:

We are deeply concerned that a significant number of people living with neurological conditions are missing out on vital support and services.

The CPG published their report on this investigation in 2018.

The report offers 3 recommendations:

  • Local Authorities and Local Health Boards must immediately undertake a robust population needs assessment of people living with neurological conditions and their carers, to better understand the cohort in their area who may require services.
  • Local Authorities and Local Health Boards must review their information, advice, and assistance to ensure that people living with neurological conditions and their carers who need support are signposted to relevant agencies.
  • Regional Partnership Boards and the Welsh Government must recognise the WNA survey findings, and carefully monitor the implementation of the Act for people living with neurological conditions.

Royal College of Paediatrics and Child Health

The Royal College of Paediatrics and Child Health (RCPCH) recently published its report Epilepsy12 National Organisational Audit Report 2018, using data from hospitals across Wales and England. The report supports the work of the Organisation of Paediatric Epilepsy Networks in the UK (OPEN UK), in forming regional Epilepsy paediatric networks, including the South Wales Epilepsy Forum and the Mersey and North Wales network 'Epilepsy in Childhood' interest group.

The audit report found improvements in:

  • The number of Epilepsy nurse specialists;
  • The number of paediatricians with Epilepsy expertise; and
  • The number of specific paediatric Epilepsy clinics.

However, the report also found that there is still a considerable need for improvement in several areas. Further work is needed to ensure that:

  • there are enough paediatricians with expertise in Epilepsy to diagnose and appropriately support children with Epilepsy in every health board.
  • there are enough specialist Epilepsy nurses.
  • appropriate training and individualised care plans are provided to families whose children are prescribed ‘rescue medication’.
  • Epilepsy clinics have the capacity needed to deliver follow up services, so children don’t need to attend general paediatric clinics.
  • there are clear referral pathways to more specialised epilepsy services.
  • the case for bringing new treatments (such as vagus nerve stimulation) to local clinics is reviewed.
  • ongoing epilepsy care includes mental health assessment, diagnosis, and treatment, alongside management of seizures.
  • families can easily contact services within their health board.

Data for individual health boards across Wales can be downloaded from the RCPCH website.

Article by Holly Kings, Senedd Research, National Assembly for Wales

Senedd Research acknowledges the parliamentary fellowship provided to Holly Kings by the British Biosciences Research Council, which enabled this Research Briefing to be completed.