Specialist MND nurse backs appeal for Rob Burrow Centre for motor neurone disease in Leeds

Claire Lang, a clinical nurse specialist for MND, said The current MND Care Centre at Seacroft Hospital is "tired and rundown.

She said it is too small and is an unsuitable environment for patients.

Claire said the quality of facilities for patients needs to match the excellent care provided.

She said a brand new centre in Leeds dedicated to the treatment of motor neurone disease would be a welcoming and safe space for patients and their families.

Claire, who is also care centre coordinator for the MND team in Leeds, is backing The Leeds Hospitals Charity's YEP-backed campaign to raise the £5m needed for the centre, which will be named after Rob Burrow.

Rugby league legend Rob was diagnosed with MND twop years ago.

His friends and family say it would be their dream for him to be able to open a brand new centre in Leeds dedicated to the treatment of motor neurone disease.

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The centre is set to become a flagship centre for both the treatment of patients with MND and vital research into the condition and possible cures.

Claire, of Drighlington, is one of three specialist MND nurses caring for around 80 MND patients in Leeds and the surrounding area.

She said the MND team is currently only able to see six patients in a clinic at any one time at Seacroft Hospital due to Covid restrictions.

"Seacroft Hospital is tired and run down ," said Claire. "The facilities are poor and the environment is inappropriate for an MND clinic.

"The clinic rooms are not big enough to facilitate a wheelchair, family members and staff.

"We don't have equipment in the bathrooms for someone to safely get on and off a toilet.

"A lot of the rooms don't even have a window.

"We are breaking bad news in this clinic. We are telling people they have got MND and there is nowhere for them to go and take in that information.

"There's nowhere for them to go and just sit and take it in and have a cup of tea."

"We don't have a family room and we don't have a garden.

"People need the right support following a diagnosis.

"Even if someone is expecting it, when we make a diagnosis it is still absolutely devastating.

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"MND is a dreadful disease but the care is fantastic and there is a lot of hope, which is really important.

"There is a lot we can do to support people to live their lives in the way that they choose.

"If we have got an environment that is fit for purpose it means that we can have equipment here that we can demonstrate for patients."

Claire said there is no room at Seacroft where the team can provide education on MND for other health professionals

"A lot of our work is proactive," she said.

"We are not dealing with problems and fixing them, we are preparing patients for what might happen in the future so they can decide how they want to manage this illness and they can decide what treatments and care they want."

The Leeds Hospitals Charity hopes to reach the £5m fundraising target by Christmas.

Rob’s wife Lindsey has said she would love for the centre to be built as soon as possible so her husband can open it himself.

Rob's friend Kevin Sinfield's incredible 101-mile run within 24 hours has raised a staggering £2.2m to be split between the appeal to build the Rob Burrow Centre, and the MND Association.

Click here to donate to the appeal at www.leedshospitalscharity.org.uk/pages/category/mnd-centre-appeal

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