Inclusion
Motor neurone disease is an inclusive condition. Although it is more prevalent amongst older people it does not discriminate directly or indirectly on the grounds of sexuality, ethnicity, religion, disability, gender, sex or age.
Below you'll find information about: our journey towards inclusion, our 2022 Inclusion Strategy, initiatives we are part of, whether it is making a difference and ways to get involved.
Our journey towards inclusion
At the MND Association, we are determined to become fully inclusive by continuing to embrace diversity, remaining committed to equity and ensuring that all of our products and services are fully accessible.
In this way, we can ensure that people with and affected by MND get the best possible care and support in their particular circumstances and we are able to help more people. We have made a good start and in the last couple of years have:
- Created network groups for our LGBTQIA+ and BAME communities
- Designed and rolled out multi-channel awareness raising and learning programmes
- Built a team of Inclusion Champions
- Made a commitment to only use accessible venues
- Started to engage with different communities and launched our extending our reach programme
- Achieved Disability Confident-Employer status
- Became a Stonewall Diversity Champion
- Formed a team of Mental Health First Aiders and launched a comprehensive staff wellbeing programme
- Reviewed and revised our approach to recruitment
If you would like to know more about where we have come from and where we are going, please contact our Head of Inclusion and Wellbeing John Gillies-Wilkes.
Our Inclusion Strategy
Our Inclusion strategy flows from our overall Association Strategy, from our previous learning and discovery and from the needs of people with and affected by MND. It is a simple three-part strategy that is underpinned by objectives and detailed work plans.
We will provide services and support and undertake research in ways that are inclusive and accessible by:
- Engaging with, understanding and responding to the needs of local, regional and national communities
- Reaching out to those in need and removing actual and perceived barriers to participation
- Being creative and innovative
We will identify and address MND specific health and social care inequities (unfairness) by:
- Ensuring that there is equity of access to multidisciplinary care across England, Wales & Northern Ireland
- Enabling our Care Centres and Networks to meet the needs of service users and potential service users
We will empower all of our people to embrace Inclusion and demonstrate their commitment by:
- Recruiting from the widest possible talent pool ·Informing, training and equipping staff and volunteers
- Proactively engaging with and responding to the needs of our internal communities
Initiatives we are part of
- The Stonewall Diversity Champions Programme and are working towards completing qualifying for inclusion in the workplace equalities index.
- Disability Confident
- Communication Access UK
- National Highways Roads for All forum
It is too early to determine whether or not our work in this area is making a difference but these are some of the outcomes we are working towards:
- our support and that of our partners is designed to meet people’s many differing needs, including the needs of under-served groups
- increased engagement with diverse communities raises awareness, participation and personalised support (community engagement project)
- people affected by MND are shaping our priorities and services
- and everyone feels valued and welcome at the MND Association.
Some of the things we will be measuring in a benchmarking exercise on 31 December 2022 are:
- Whether co-production with people affected by MND and volunteers is the default approach to all Inclusion related initiatives or projects
- The extent to which the MND Association is seen by the wider neurological world as a beacon for good practise in relation to DEI
- 50% of identified underrepresented communities are engaged with the Association
- The extent to which Care Centres, Networks and Community Specialists are providing care and support in an inclusive way and all actual and perceived barriers to access have been removed
- The number of people we employ and who volunteer from the BAME community being compatible with 2021 census data
- The number of people we employ or who volunteer with a disability or impairment being compatible with 2021 census data
- All staff, 50% of group and branch role holders and 25% of support volunteers have completed the Learning and Development programme
Network Groups and Forums
Our network groups and forums are designed to help ensure that people from different communities who work, volunteer or who are otherwise part of the Association feel safe supported and comfortable, have a voice and make a difference within and to the Association. If you would like to join the network groups, please Email the addresses below.
LGBTQIA+ Group
The group is open to any member of the Lesbian, Gay, Bi, Trans, Queer or questioning, Intersex and Asexual+ community who has or is affected by MND or who volunteers or works for the Association. To find out more please contact
The DEEM Group
The Diversity Equity Ethnic Minority Network group is open to any member of the Black, Asian and Minority Ethnic* community who is affected by MND or who volunteers or works for the Association. To find out more please contact the Email below.
*BAME or BME are the two terms most often used to describe the Black, Asian and Minority Ethnic community. There are others including People of Colour (POC) and Racially Minoritised People (RMP). No single term is universally popular or inclusive, hence the group’s decision to use the term Diversity Equity Ethic Minority (DEEM).
Hidden Disabilities and Conditions Forum
The forum offers a safe space for staff and volunteers who are neurodivergent or who are managing their own mental health issues.
Faith, culture and community awareness programme
An initiative to raise awareness amongst our staff and volunteers and through them amongst our service users of different faiths, cultures and communities. As part of this throughout the year we provide information about different faiths, beliefs and communities, usually to coincide with a particular event (Ramadan, Pride, Diwali, Yom Kippur, Black History Month, Easter etc), alongside stories from people about why their faith, belief or community is important to them.
Promise 5 Interest Group
We have made a series of Promises. Promise 5 states that we will not rest until no one faces MND alone. This Interest Group has been created to ensure that we hear about what we should be doing from as many people as possible.
We would love to hear from you if you have a story to tell under the faith, culture and community awareness programme or if you would like to get involved in the Promise 5 Interest Group. Please contact john.gillies@mndassociation.org.