NeuroFest November 2020: Equality, Diversity & Inclusion

Our NeuroFest took place from 11th – 18th November 2020 and allowed participants to discuss key topics and to hear from experts, including people living with neurological conditions.

Our second session on 12th November provided an opportunity for participants to discuss current evidence about if and how race and ethnicity has an impact on access to and experience of neurological services.

The Neurological Alliance is committed to equality, diversity and inclusion in all of our work. To truly bring about personalised, responsive care, we need to understand and articulate the needs and experiences of a diverse range of people affected by neurological conditions. This session was the first opportunity, as an Alliance, to begin to discuss this in greater detail.

Panel

Chairing the session Amanda Swain, UKABIF Vice Chair and the Alliance EDI champion.

Amanda is a Consultant Practitioner in Neurorehabilitation, she has worked in many sectors as a clinical specialist in ABI and Neurology for over 25 years; she has led development of neurological rehabilitation services in four counties of England and in five countries. She has worked as a national lead or contributor to standards and audit of rehabilitation provision for the top authorities in England and New Zealand. Amanda holds a Masters in Health Laws and has been advising on health and social care legislative interpretation and implementation for over 15 years. Amanda also acts as independent advocate for people needing support to obtain the treatment, rehabilitation or social care that they need and are entitled to. Amanda is Vice Chair and Policy & Commissioning Liaison for UKABIF.

Andrew Lynch, EDI lead at the Walton Centre,

Andrew is the EQI lead for the Walton Centre looking at how they might work together with partners to break down some of the barriers facing BAME communities accessing and getting the best experience and outcomes from neurological services. Before joining the NHS he worked in this area with what was then Glaxo Neurological Centre (now The Brain Charity) as an Black and Racial Minorities Outreach Worker and for Healthwatch Liverpool, where he concentrated on patient experience and boosting the patients voices to improves services. 

Trishna Patel who has experienced Guillan Barre syndrome.

Trishna Patel

Trish works fulltime in the Design Construction industry as a Project Cost Consultant. After being diagnosed with Guillain Barre Syndrome 3 years ago, Trish continues to spread awareness through taking part in health campaigns and supporting other GBS patients and their families through their own recoveries. In her spare time, she enjoys staying active, travelling (prior to COVID-19 of course) and motivational speaking.

Presentation Slides

20201112 EDI slides

Video and Audio Presentations

Andrew Lynch, Equality and Diversity lead, The Walton Centre

Link to Youtube

Trish Patel on living with Guillan Barre Syndrome

Link to  Soundcloud 

Georgina Carr, CEO, the Neurological Allianceutube

Link to Youtube

Audience Participation

Questions and contributions from Andy Barrick, MSA Trust, Dr Arani Nitkunan, Consultant Neurologist, and the panel.

Link to Youtube

Is stigma an issue? – questions and comments from Jonathan Blades, MS Society May Lim, Occupational therapist and Caroline Morrice, GAIN and summary by Amanda Swain and Georgina Carr

Link to Youtube

Outcomes and Next Steps 

This was the first of a series of events held by the Alliance to consider equality, diversity and inclusion in neurology. Our intention is to use our position as a collaborative, umbrella organisation, to understand better how experiences of neurological care might differ between different sociodemographic groups, and what might need to be done to address any inequalities that exist.

In 2021, this will include working with our membership and the ABN to conduct a literature review of the available evidence about access to key services and how this may differ across sociodemographic groups. If you have questions about this work, please contact Georgina.