13 April 2022

King’s Health Partners (KHP) Neurosciences has reflected on its recent collaboration with Oxleas NHS Foundation Trust (FT) to show how joining forces to share expertise can open new avenues to improving skills and care for patients with epilepsy and intellectual disabilities.  

Standards of care for people with Intellectual Disabilities have been in the national spotlight, with a need for improvement highlighted. Through the Royal College of Physicians and the Royal College of Psychiatrists there has been a greater focus from clinicians to think more widely about how epilepsy care for this group can be provided to reduce the gap in health inequalities.

A workshop was developed which immediately attracted a lot of interest from health care professionals across the UK.

People with both epilepsy and intellectual disabilities experience several health inequalities which can lead to individuals dying up to 25 years earlier than the general population. Shockingly, sudden unexpected death in epilepsy (SUDEP) is six - nine times higher in people with learning disabilities. With standards of care for people with learning disabilities in the national spotlight, there has been a call for improvements to be made in skills and care.

For people with learning disabilities:

  • 30% also have epilepsy, which along with additional co-morbidities pose unique clinical management challenges.
  • 5% die as a direct result of seizures, which are also an associated condition in 45% of premature deaths. 
  • Avoidable emergency attendances are five times higher; the most common cause is seizures.
  • Epilepsy is harder to control with two thirds being treatment resistant to anti-epileptic medication and there is a greater potential for it to negatively impact their quality of life.

The Royal College of Physicians and the Royal College of Psychiatrists have called for greater focus from clinicians to think more widely about how epilepsy care for this group can be provided to reduce the gap in health inequalities.

Dr Robert Winterhalder, Consultant Psychiatrist in the Bromley Learning Disability Epilepsy Service at Oxleas NHS FT recognised that there was a knowledge and skill gap in healthcare professionals providing care in this area and came up with an idea for a workshop, approaching KHP Neurosciences to support with its expertise in delivering online educational events.

For the first time, KHP Neurosciences worked with colleagues at Oxleas NHS FT to deliver this event as a joint venture, aiming to bring learning disability and epilepsy experts to a national audience through an online, interactive learning forum. 

The workshop was developed to both highlight these inequalities and areas of need and to help healthcare professionals think more holistically about the impact on quality of life from these two conditions. The latter includes the importance of good bone health, the role of sleep and cognition and the management of SUDEP.

Reflecting on the collaboration – Dr Robert Winterhalder commented:

 We have a wealth of experience in our organisations. Our approach in Oxleas has been more focused in sharing our knowledge internally. Working together has helped create a strong platform in which to bring this topic to a different and wider national stage that would otherwise be missed. This event would not have happened had we not joined forces.
This was developed as a ’one time‘ event, such has been the level of interest, appetite for new knowledge in this area and extremely positive feedback from the event, we have received many ideas for future areas of learning. This shared working framework is helping to raise the profile of the needs of this specific group, an area that all health professionals need to be aware of and help to break down barriers to care. We plan to explore together how both organisations can continue to build on this highly valued and much needed education by extending our reach further through more national events. 

Karen Larcombe, Programme Director for KHP Neurosciences added:

The KHP Neurosciences Programme Team was delighted to partner with the Oxleas service to deliver an important education and training event to improve understanding and skills in the care of this group of patients. We would welcome opportunities to work collaboratively with other services to bring expertise and knowledge to new audiences caring for patients with neurological conditions.

If you have an idea, get in touch with the team via KHPNeurosciences@kcl.ac.uk