7 stories focuses on the people who are affected by MND and some of the inspiring things they have done.

7 Stories Behind the Scenes is an extension of this project and gives an insight into the Motor Neurone Disease care clinic that runs out of Seacroft Hospital. Led by Dr Agam Jung, 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.

The aspiration for the Rob Burrow Centre for MND is to provide a new centre of excellence for MND care in the region, bringing together holistic patient-centred care and excellent nursing standards in a purpose-built environment.

This bespoke unit will imitate the team’s care model, placing the patient and their family at the centre. All MND services will be 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. The centre will also be built with a vision for the future, able to support patients with MND today whilst adapting to new innovations and treatments for the patients of tomorrow.

Photographs by documentary photographer Tom Arber.

Accessibility

Patients with MND have quite extensive needs, particularly relating to mobility. Holding the current MND clinics in a multi-purpose site means that these needs are not the top considerations, the clinic space is used by different services each day. 

Rooms without windows

"Imagine being told a really awful piece of news by someone and there is nowhere for them to look but at me – no window to look out of, no fresh air to breathe. Our patients need light and positivity to help them deal with what they have been told."

 - Dr Agam Jung 

Privacy

Our patients often have to travel to appointments with someone, as they need the physical support, and with limited rooms and spaces in a cramped clinic, complete privacy can be a challenge.

Waiting area

"We have some of the warmest and loveliest patients, they really are thankful for the support and care we give them. But there’s no space for them to sit and have a cup of tea with others, to maybe digest what they might have been told, to be able to be with their family or wider support network at this time."

- Claire Lang, Nurse Specialist

Staff Working

The Motor Neurone Disease Care team is like a jigsaw puzzle, made up of at least 10 different interlocking specialities that look after all different areas of patient care. There’s no space to accommodate this size of team during clinics.

Technology

There have been many developments in technology over the last 10 years since we started running the MND clinic from this site. We’d love to be able to show our patients technology such as voice banking or share with them the latest wheelchairs. There’s no space, technology, or capacity to currently do this.

Environment

Feeling well is as much about the environment you are in and how you feel it meets your needs. A new purpose-built centre would be equipped with essentials such as hoists for the toilet, wider corridors and doorways for wheelchair access and communal seating areas.