Plans have been unveiled for a new purpose-built care centre of excellence for people living with MND, with the £5million fundraising appeal spearheaded by Rob Burrow.
Former Leeds Rhino Rob has been courageously sharing his story of MND with the public since he was diagnosed last year at the age of 37, and he has raised the profile of the condition beyond all expectations, as well as helping to raise almost £3million for the MND Association.
The new centre – The Rob Burrow Centre for Motor Neurone Disease – would support people with MND living in and around the Leeds area, like Rob. He refers to his care at Seacroft Hospital, where the MND centre is currently based, in his latest autobiography and a BBC documentary, also filmed at Seacroft, is shortlisted for a Television Award.
There are currently around 80 people like Rob being treated for MND in Leeds, double the number of people the service supported ten years ago.
Since he was diagnosed, Rob has actively campaigned to help raise awareness and raise funds in support of MND charities. Having excelled in his sporting career, he now plans to support the creation of a centre of equal standards that will benefit many more people living with this disease, alongside his friends and close supporters, which include former Leeds Rhinos player Kevin Sinfield and actor Matthew Lewis.
“Imprisoned in the brutality of MND, my vision is that people diagnosed with MND hear the news in a calming and tranquil sanctuary,” says Rob.
“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.
“For carers of those with MND, it is important to know that their loved ones are in the best possible place. Something every MND sufferer and their families deserve.
“Although the news won’t be any better, it will be easier to come to terms with in a purposely built care centre that meets the needs of every MND patient.”
The Leeds Rhinos Foundation, official charity of the Leeds Rhinos where Rob played professionally for 16 years, have been the first to pledge £50,000 in support of the our MND centre appeal.
The appeal for a new MND centre recognises the need for a dedicated centre in Leeds, providing a better patient environment.
Originally built in the early 20th century, with care for infectious diseases in mind, the current home of the centre is now showing its age. Significantly, the technology relating to the care needs of people with MND has moved on, whilst the building remains the same.
The current MND centre is located on a busy multi-purpose ward not built with MND patients in mind and without the ability to be fitted with equipment and facilities for those who are physically impaired.
Dr Agam Jung, consultant neurologist who leads the MND team at Seacroft Hospital, says: “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.”
The vision is for a space that is bright and modern, that has windows and gardens, with spaces for families to be together, or quiet rooms to reflect in after difficult conversations.
Esther Wakeman, chief executive of Leeds Hospitals Charity hopes the new centre will provide a space for patients and their loved ones to enjoy special moments together and spark a change to MND care across the nation.
“We recognised the need for a dedicated centre in Leeds, which we know will make a huge difference to many affected by this cruel disease,” she says.
“I can envisage our centre becoming a flagship in the UK and I hope that this will inspire others to replicate this up and down the country, offering thousands of MND sufferers the best quality of life and help us get closer to finding a cure one day.”
