The Rob Burrow Centre for Motor Neurone Disease Appeal

Lindsey Burrow and her children lay their hands in concrete to leave their mark on the new Rob Burrow Centre for Motor Neurone Disease. — Lindsey Burrow and Macy, Maya and Jackson leave their handprints in concrete slabs for the new Rob Burrow Centre for Motor Neurone Disease

Dr Agam Jung, Consultant Neurologist and clinical lead for the motor neurone disease service in Leeds, came up with the idea to build a new facility for patients with Motor Neurone Disease together with her patient, the then recently retired rugby league player Rob Burrow. It was following a patient appointment and their challenges to use the facilities that spurred Dr Jung forward to approach the Trust’s charity, Leeds Hospitals Charity, to fundraise for a new centre.

With backing from the Trust and full support from Rob, his family and very soon his friends, including Kevin Sinfield and the wider Leeds Rhinos family, the campaign to raise £6.8 million for a new centre soon began.

The new Rob Burrow Centre for Motor Neurone Disease, based at Seacroft Hospital in Leeds, will provide a calm and peaceful environment for patients and has been designed in partnership with the hospital’s clinical staff, patients, their families and the wider MND community.

The centre will be completely accessible and have everything patients need under one roof. this includes specialist nurses, physiotherapists, speech and language therapists and dietitians, amongst others.

The ‘first of its kind’, the centre will include a host of clinical rooms, communal spaces and outdoor areas where patients can explore the latest equipment and technologies.

Currently under construction, the aim is to open the new centre in summer 2025.

You can keep updated on the behind the scenes blog and donate to the The Rob Burrow Centre for Motor Neurone Disease Appeal with Leeds Hospitals Charity.

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“We want to provide a safe haven for our patients and their families – a peaceful environment that reiterates to them that they have the best possible care, helping them ‘live in the now’, a serene place that instils hope and courage.”
Dr Agam Jung, Consultant Neurologist at Seacroft Hospital

“My vision is that people diagnosed with MND hear the news in a calming and tranquil sanctuary. I envisage a beautiful, welcoming building that is user and family friendly. A place where patients feel comfortable to bring family members into a safe and homely environment for them, with signs of hope and optimism.”
Rob Burrow MBE

How will the space be used?

The service supports patients from Leeds and the wider Yorkshire region.
Patients from the region also access the centre for neurology second opinions.
The number of people with MND seeking help from the Centre has doubled over the past ten years.
More than 10 highly skilled professional team members play a vital role in treating and caring for patients and their families, across all areas of specialist care needs, including a dietitian, speech and language therapist, occupational therapist, physiotherapists and End of Life care.
Specialist regional networks for MND care.
A flagship centre of excellence for sharing best practice, including education.
It is hoped that research will be a part of future services.

What difference will a new MND centre make?

Seacroft Hospital was originally built in the early 20^th century with care for infectious diseases in mind. The current home of the MND care clinic is restricted in how it can be adapted to patient needs.

Located on a busy multi-purpose ward not built with MND patients in mind.
Limited private space for patients and families to be alone after receiving life-changing news.
Challenging for those with mobility issues.
Wheelchairs especially adapted for MND patients are too wide for the door frames of the centre.
Facilities such as rest areas and toilets are unable to be equipped with the hoists and aids needed for patients with mobility impairments.
Over the past ten years, both the number of people with MND referred to the centre and the size of the care team itself has doubled.

The brand-new centre will see all MND services housed under one roof for the first time, in an accessible location conscious of the needs of those who visit. Supporting all aspects of the patient’s journey, the centre will create comfortable and peaceful surroundings for patients and their families, including space to reflect after difficult conversations.

How much will the new centre cost?

The Leeds Hospitals Charity is currently raising £6.8m to fund the new centre and create a landmark building fully able to support this complex condition and reflect the name and legacy of Rob Burrow CBE.