Rob Burrow Centre for MND Blog: A year in the life of the MND team

by Dr Agam Jung, Consultant Neurologist

This year has started on a high note for the Motor Neurone Disease (MND) community with Rob Burrow and Kevin Sinfield being awarded their CBE titles at Headingly Stadium on 11th January. I was asked in an ITV Calendar interview that day about what Rob and Kevin had done in terms of raising the profile and awareness for MND, which made me reflect how much had been done this past year to move our dream of a new centre forward towards a reality.

The greater awareness of MND and its presenting symptoms has resulted in an increased number of referrals to us at Leeds and in 2023 I received 58 referrals, much higher than before from across the region. I would definitely attribute these increased numbers of referrals to the raised awareness, which includes all the incredible work Rob and Kevin have done over the last few years to support the MND community. An earlier referral, resulting in earlier investigations, leading to an early diagnosis given in an empathic supportive manner with links to local services and research, ensures that patients can get support to live their lives as well as they can, as soon as possible. Rob and his family have shown beyond measure how it is possible to live with MND and they are a great inspiration to me and the wider public.

Kevin and Rob have also demonstrated the power of friendship and through the many campaigning and fundraising efforts, many of my patients talk about how they feel less isolated, that they feel part of an incredibly supportive community. The new Rob Burrow Centre for Motor Neurone Disease will fulfil many of the roles to support our patients from across Leeds and further afield. Not only will our clinics take place in the centre, but we also aim to provide a space where MND patients can meet, with their families, with their friends, and build upon the care that sits just beyond clinical care. Without Rob, Kevin and the thousands of others who have donated and fundraised to support the appeal to build the centre, this just wouldn’t be possible.

I feel fortunate to be able to look after patients with MND from whom I have learnt the real meaning of courage, resilience, an indomitable spirit, positivity, acceptance, and love. So much has been achieved in 2023 and I’m just incredibly excited and motivated for what’s to come in 2024.

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