What the new Rob Burrow Centre for Motor Neurone Disease means to the MND team

To people on the outside, the new Motor Neurone Disease (MND) centre is just somewhere to care for patients with a specific condition; for those on the inside, it is so much more.

Within the centre, a team of specialists cares for patients with MND, which is a complex condition, and each specialist sees the new centre from a different perspective. We asked them how the new MND centre will impact the way they interact with patients and what they are looking forward to most.

The MND clinical nurse specialists agree that having a purpose-built space will be better for the many difficult conversations that are held between staff and patients with a life-limiting illness.

“There will be natural light and a less clinical environment allowing for discussions about their holistic health and not just their physical concerns,” said Naomi Unsworth.

“The centre will give me flexibility to invite people there for support in an environment which will support as much as the clinical care given,” said Claire Lang.

For the physiotherapist and occupational therapists, having equipment patients can learn how to use before taking it home is important.

“The environment will be fit for purpose, to demonstrate, and allow patients to try the equipment to allow them to be as independent as possible,” said Joanna Dobney, Liz Gilderoy and Sarah Revel from the occupational therapy team.

“[It will be] a welcome environment where we can not only have MDT clinics but drop-in clinics, develop gentle exercise groups and have equipment that patients can try before having to assess them in their own home” said Fiona Powell, Highly Specialist Physiotherapist.

Swallowing assessments need to be done in a relaxed environment, which the new centre will provide.

Highly Specialist Speech and Language Therapists, Evelyn Townend and Brenda Thompson, said, “This will mean that we can support them as their communication and swallowing needs change, at the perfect time in a way that best suits the individual.”

Having a centre that is a safe space, fully accessible and can be used flexibly helps the team offer a wide variety of services and work collaboratively to provide the best care for patients and their families. Staff believe the outdoor space will provide a calming influence too.

“It will be lovely for patients and families to go outside, look up at the sky, experience some fresh air, look at the plants and take a minute to think, reflect, relax, laugh and cry,” said Claire, who is excited for the outdoor space and hopes to be able to help look after the garden.

And staff hear excitement from patients and their families when they talk about the new centre and speculate about what they are looking forward to most.

“I think the open spaces where patients have the space to attend groups, have a cup of tea and meet up with others who are living similar experiences,” said Naomi.

“The location with its ease of access, a drop off point will mean a lot for carers as the stress of reaching the clinic on time will reduce,” said Dr Agam Jung, Consultant Neurologist.

“I hope they feel a big hug of support when they enter the centre. I think they will love that everything within the centre is accessible to them—doors, bathrooms, etc will all be designed for them. I hope this makes them feel supported, valued and that this is a place they can be themselves,” said Claire.

Staff feel empowered by the impact the new centre will have on the MND community and they hope it will raise the bar for MND care. @LeedsHospitalsCharity