Rob Burrow's doctor says the courage he had as a player pales into insignificance compared to his MND campaign work

Dr Agam Jung had never seen a match and knew nothing about rugby, or in fact sport.

It was a memory that would be just that until March 2020 when a chance conversation with one of her patients, a certain Rob Burrow, revealed that he starred in that game and she had seen him play.

And now, with her as a consultant neurologist at Leeds Teaching Hospitals NHS Trust, director of the Leeds Regional Motor Neurone Disease Care Centre and an honorary senior lecturer at the University of Leeds School of Medicine - he is one of her patients.

The conversation kick-started the realisation of a vision that she had been harbouring for the last ten years. Rather than just bid for equipment funding she decided to "go big" and campaign for a purpose built centre - and from there she knew it would be The Rob Burrow Centre for Motor Neurone Disease.

She said: "The worst thing was we would be told no."

So in March 2020, meetings got underway, and so did the coronavirus pandemic which slowed things down. However, in September this year it was announced that an agreement had been made to get the centre up and running - it just needed £5m to make it happen and Leeds Hospitals Charity agreed to co-ordinate the fundraising appeal.

"It was a very surreal conversation. He asked me if I follow rugby and I said 'I am not a sports person' but when I was a junior doctor in A&E a patient needed a hand x-ray. I asked him how he did it and he said in a scrum. I asked him what that was and my colleagues said 'Agam, he is a rugby player'. How am I supposed to know what a rugby player looks like?

"One of the nurses said there is a game in a couple of weeks and I should go. One of the A&E doctors gave me a ten minute crash course in rugby and I went with my husband and daughter. I watched the game, didn't understand but cheered when everyone cheered. Rob said 'you have seen me play'. We worked it back and it was Leeds Rhinos versus Wakefield Trinity."

However, as a patient, Dr Jung says Rob Burrow has more courage than he ever did on a rugby pitch and says there is "no doubt" this centre is happening because of him.

She said: "What he has done, I really don't have the words to say. Rugby fans will not be happy with me saying this but whatever courage he had on the pitch pales into insignificance with what he has done.

"To open your life when you are absolutely vulnerable - oh my goodness. That is a head space that only very special people can go to. You can't talk, walk, you can't swallow - could you do that. To have that strength of mind - that is courage at a different level.

"Patients know exactly what I am talking about, they know the effects, how fast things can progress. The whole narrative has been changed by Rob, by the news, the wish to make a difference. It has opened up another level of kindness that we have - look at the money that has been raised."

Talking about the vision for a new centre, Dr Jung, says she always thought the space they were working from needed to be better.

When she became the consultant for MND in Leeds in 2011 there was only once clinic a month with a single dietician, physiotherapist and speech and language expert. The palliative care consultant worked there (Seacroft Hospital) for four hours a month.

Now that is four hours a week, there are four clinics a month, a support team with psychologists, genetic specialists, anaesthetists, nurses, neurologists and occupational therapists. Dr Jung has between 80 and 85 patients that she cares for specifically but in addition has referrals, discharges and had 37 new patients this year with confirmed cases.

She said: "I am talking about death and dying in a clinical and cold environment. It is one thing to talk about a migraine but conversations are sensitive, patients need to wrap their head around many different things. They need a calm serene environment to take decisions, not a harsh place. The environment makes a difference."

In addition to gardens, a car park, specialist hoist equipment, wheelchair friendly doors and corridors, family rooms and private rooms there will be training and research facilities and, if this happens, Dr Jung jokes, "my life work will be done".

She added: "MND work is hard, you get emotionally involved, you see patients and their lives. As a clinician I see what patients need, as a person, this means everything. I see this centre as being beyond MND but galvanising a city. It is not just about MND, or Leeds Rhinos or Rob Burrow but a city that will be the bench-mark and set the standards of care. Somebody sitting in Australia or the US says 'that is how they do it and we need to follow."

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