A beacon of hope
The new Rob Burrow Centre for the treatment of Motor Neurone Disease in Leeds has been designed with flexibility and adaptability in mind, as the key stakeholders tell us
On 19th December 2019, it was announced that Rugby League legend Rob Burrow, then aged 37, had been diagnosed with Motor Neurone Disease (MND). Seemingly overnight, the spotlight was turned on this complex disease as Rob, his family and former teammate Kevin Sinfield began tirelessly fundraising for charities associated with MND.
In March 2020, Rob’s Consultant Neurologist and Clinical Lead for MND at Leeds Teaching Hospitals NHS Trust, Dr Agam Jung, had an idea. “During a consultation, Rob told me I had seen him play when he was an emerging rugby star back in 2003 – possibly one of the only rugby games I’ve ever seen. On the same day, I was made aware that one of my patients was unable to have a drink of water as they wouldn’t have been able to access the toilet in our current centre due to a lack of hoist. It made me reflect on how we needed to do better for our patients. Rob wanted to help make a difference for other families, so the idea of the Rob Burrow Centre was born.”
As well as a lack of appropriate equipment for MND patients, the existing centre is located on a busy multi-purpose ward a long walk from the car park, with no private space for patients and families to be alone after receiving life-changing news. Over the past decade, the number of people referred to the centre and the care team itself has doubled, and the current space cannot accommodate the increasing referrals to the service. In addition, the wheelchairs especially adapted for MND patients are too wide for the door frames of the centre. Dr Jung had also been struck by the lack of privacy for Rob’s emotional dignity when he initially came to clinic. Clearly, something needed to change.
The new Rob Burrow Centre will see all MND services housed under one roof for the first time in an accessible location, with comfortable and peaceful surroundings for patients and their families, including space to reflect after difficult conversations. It will be a hub of innovation, education and excellence for MND in the region, bringing together holistic patient-centred care and first-rate nursing standards in a purpose-built environment.
Leeds Hospitals Charity’s appeal aims to raise £6.8 million to fund the building of the Rob Burrow Centre. As of December 2023, the appeal has raised £5.4 million and work has started to clear the site.
The Trust has been working with architects Corstorphine & Wright on the project, as well as clinical and patient stakeholder groups to ensure the centre fulfils its ambitions. We spoke to some of those involved.
Dr Agam Jung, Consultant Neurologist and Clinical Lead for MND
It’s vital for me to provide the best care in the best environment, enabling patients to make the most of the short time they have with a life-limiting progressive neurodegenerative disease. We have more than 10 therapists, including physiotherapists, speech therapists, nutritionists and more, and they have all been vital in helping design this new centre.
Throughout the project, I’ve worked with colleagues, allied healthcare professionals, the Estates Senior Executive team, the Trust Communications team, architects, the Burrow family and Kevin Sinfield, the media and Leeds Hospitals Charity to form the project. I’ve worked very closely with my patients, guided by them as to what they want to have at the centre. I undertook patient surveys using a traffic light system of what patients would want, not want and what they wished to continue at the centre. I ensured that the architects met with all my team members, from porters to receptionists to specialist nurses and allied healthcare professionals, and they even sat in my clinic to understand the patient journey.
The new centre will be what Rob called ‘a beacon of light’ and we envisage it being used by the wider MND community, not just for their appointments, but to come together for support. Rob and Kevin have inspired many others to fundraise and get involved, and our patients have come to know each other and find friendship and support in that. We know that accessibility will be addressed – our patients often have mobility challenges and parking nearby and navigating spaces is vitally important. We will be able to welcome families to the centre as there will be spaces to wait, relax and be inspired. I firmly believe that it will encourage more people to share this experience with their loved ones. And light! We will have a warm, inviting and light centre. Our team will also be able to observe and review patients in a much more natural environment to check their swallowing ability, how they get around, how they respond to certain treatments or kit or anything else. I’m excited about this new space and how my team will be able to take our care to another level. It will also help with staff wellbeing as caring for MND patients can take an emotional toll on healthcare professionals.
Ian Flatt – a patient with MND
I was diagnosed with MND in March 2019 after 15 months of investigations. My first consultation in the current building was in a room that was only eight-foot square with my wife, Rachael, and a consultant I’d never met before who was about to tell me the news wasn’t great – we basically had our knees touching, there were no windows and I felt like I was in a cupboard. I remember leaving and thinking: “I never ever want to come back to this place.” We went and sat in the car and cried. I was there with Rachael so had that support, but not everybody’s that lucky.
MND has become more well known in the last five years. Post-diagnosis, I remember Googling to try to find a toolkit or a role model to deal with it, but before Rob and Doddie Weir, there wasn’t anyone. Once we were picked up by Dr Jung and her team, it made a world of difference. They’re an incredible team.
As a patient with MND, you’re invited for a check-up every three months, but I tend to go once a year. That was a choice because the current centre is not a place that I enjoy going [to], but also we’ve been so well equipped by Dr Jung and her team in terms of our knowledge and, if we need them, they’re there.
In 2021, once fundraising started, we began working with Dr Jung and the team on the project. The stakeholder meetings are relatively informal, but always well managed. The architects are very patient and drive the meeting when they need to, but they allow discussions and opinions to be heard. I’ve left every meeting feeling valued and like we’ve contributed. It speaks volumes for the MND community that everybody is so committed and so passionate, despite the challenges we may have.
Dr Jung’s team put the patient at the centre of the care as much as possible, but the new building will help facilitate that. With the new place, we want to say: “Yes, it’s bad news, but let’s have some hope.” It’s already made a massive difference even though it’s not built yet because it’s become that galvanising beacon of hope.
In terms of fundraising, we climbed Mount Snowdon with me in my wheelchair, which we call ‘The Tangerine Dream Machine’. We were joined by almost 50 of my friends and family, including Dr Jung and her team, which made it such a special day. To be surrounded by people who’d given up their time, taken days off, come and stayed in Wales just to get me up and down that mountain was incredible. This year, from 15th June, we’re going to climb seven mountains across England, Scotland and Wales in three weeks. Once again, several team members are coming – it’s just so inspiring and incredibly kind of them.
Paul Watkins – Director of Fundraising, Leeds Hospitals Charity
A request for a hoist in the existing MND clinic led to an exchange of information and Dr Jung’s idea to create a bespoke centre for MND in Leeds. These emails were among the first I received when joining the charity in February 2020. From holding discussions with our trustees to working with key stakeholders and fundraisers, this project has formed a major part of my day job since the Rob Burrow Centre for MND appeal officially launched in September 2021.
As a fundraiser, I knew how compelling a project like this would be, helping to develop a bespoke centre – the first of its kind in the country – with a local sporting legend giving his endorsement and his name to it. We always knew it would be driven by not only the city’s love of Rob, but also the wider rugby and MND community. Rob’s friendship with Kevin, who has raised almost half of the appeal total to date, has also inspired many people around the world.
In retrospect, the commitment to launch a £6.8 million appeal against a backdrop of Covid-19 was a risk, but what a response we’ve had so far. Early on, we received a donation of £50,000 from the Caddick Group, which was a positive start and gave us the belief to deliver. Then came Kevin – we had no idea the impact he would have. His Extra Mile challenge raised £2.8 million. I was privileged to be on the support vehicle for the challenge and witness the backing that the rugby and MND community gave him on the entire route, and to see the bond between Kevin and Rob when they reunited on the pitch in Headingley. Rob’s story has captured the nation thanks to his family’s brave willingness to share their story to raise awareness of this disease at a time when they are most vulnerable. At the heart of this appeal is the community it has created, which has come together to help make this centre a reality.
Aside from the fundraising aspect, I’ve been privileged to sit on the project management committee to witness the work that goes into the creation and future-proofing of a new build in the NHS. This project epitomises the power of saying ‘yes’ and all that this word unleashes.
So far, we’ve raised £5.4 million towards our target thanks to more than 60,000 individual donations from around the world, many with a personal story behind them. We need £1.4 million to get this across the line. Until we have it, in the words of Kevin: “We go again.”
Craige Richardson – Estates and Facilities Executive Director, Leeds Teaching Hospitals
I am the Executive Lead for the organisation’s estate portfolio and facilities services. With seven hospitals, we have one of the largest and most complex acute hospital estate portfolios in the country. The new centre will be overseen by our inhouse estate maintenance and major capital project teams. I am the appointed Senior Responsible Officer (SRO) for this project, with board responsibility for its delivery and, while I’ve been involved since its early concept, I’ve naturally become more involved as we move through the more advanced stages of development. Our project teams are made up of multiple specialist areas and we all contribute to the vision. We want to deliver something iconic, that’s sustainable and that meets and exceeds the expectations of its users, all delivered on time and on budget in a difficult economic environment. Engagement with patients, their families and the wider MND community has been a big part of this project and the campaign that Rob has spearheaded to raise awareness and vital funds has broadened the support.
The new centre covers a space of around 1,000m2 and the designs are impressive. The centre is arranged as a series of three primary forms, located centrally within the project site boundary: to the north is a car park that provides wheelchair-accessible parking to serve the facility; to the south is a newly landscaped garden, which provides level access for patients and families as well as being used as part of patient therapy, allowing patients to make use of real-world situations when testing devices and mobility aids; at the heart of the site is the new-build centre, which has been designed to provide a variety of consultation and examination facilities that can be utilised by a full multi-disciplinary team when treating patients. This includes areas for speech and language therapy, dietetics, neurology, respiratory and palliative care, as well as functions including a large therapy space, a procedure room and an area to allow patients to digitally ‘bank’ their voices if they are supported by a digital aid to support communication.
The centre will provide holistic and seamless care in one place, allowing a greater sense of cohesion and stability for patients. MND patients have complex, changing needs. By designing the centre to meet these needs, all patients who are treated there will receive the best care they can for their condition. The clinical accommodation is essential; providing emotional support to patients, their families and friends also forms part of the vision for the new centre. There is a variety of spaces designed to become a home from home for visitors, providing the opportunity for private conversation, larger group activities, and complementary therapies and activities, and access to information and reading material to better understand treatment and the wider support available.
Our current timetable sees construction start in spring 2024, subject to planning approval, with completion before the end of the year. We’re pushing hard to speed up the process.
Toby Ingle – Lead Architect, Corstorphine & Wright
The Trust and stakeholder team had a clear brief from the outset: the building is to be a centre of excellence in the treatment of MND and will provide a communal centre for the wider MND community and the staff who work there. A core theme of the brief is one of flexibility and adaptability to respond to people whose mobility is affected by the condition. Additionally, providing clinical services in a building which is more domestic in scale, look and feel was central to a calming, recognisable environment that will become a home from home for those touched by MND.
We have undertaken a co-design approach with the stakeholder team, which includes clinical and estates teams, but most importantly patients and their families. We took the main elements of the brief and worked with the stakeholder team in a series of workshops to add depth to our understanding of the requirements. Specific parts of the brief were described as a series of words describing how the building would feel, which really helped us to test the brief among the group and reprioritise certain elements to ensure the new building has a positive impact on its users. We’ve also undertaken ‘Meet the architect’ sessions within the existing clinic spaces to let staff and patients drop in and comment on the design as it progresses.
To work on a project of this nature is an honour and privilege. All stakeholders have been fully engaged throughout the process and it’s been helpful to have patients and their families provide insight into receiving the diagnosis. This has allowed us to design spaces that support new ways of working for the benefit of both staff and patients.
Initially, we thought flexibility and adaptability would come through providing elements that can be adjusted. However, this thinking evolved and instead we have incorporated a variety of spaces in the central atrium which enable choice, whether in the height of seating and tables or as a mix of private, semi-private and group spaces. The building is fully accessible for those using larger mobility aids – circulation spaces have been designed to be wider than normal, there are larger toilets and a changing space, and spaces to allow people to stop and take a moment following a consultation.
We have designed the centre to blur the lines of clinical and non-clinical spaces, with the landscaped gardens giving textual and gradient changes to allow therapists to work outside with patients. Delivering clinical spaces in a non-clinical setting is a challenge, but during the early engagement sessions we identified where we would move away from standard finishes and explore alternatives. Another key discussion point has been the consult/exam rooms, which are used as multi-disciplinary team spaces where several clinical team members will join the patient and their family – we have worked with the stakeholder team to remove the traditional desk from these spaces and support the ability for all in the room to be included as an equal in these discussions.
Fortis is proud to follow the story of the Rob Burrow Centre and will provide updates in future issues. To donate to the project, visit leedshospitalscharity.org.uk/Appeal/mnd-centre-appeal. To find out more about the project, contact Associate Director of Corporate Planning and Business Development, Rob Hakin, via rob.hakin@nhs.net
Timeline
2020: Dr Agam Jung has the idea for the Rob Burrow Centre
2020-2022: Defining the business case and project requirements; identification of the site; charity approval to proceed; project team appointed
September 2023: Defining project scope, objectives and deliverables; commencement of stakeholder workshops
November 2023: Concept project plans created and stakeholders feed back; on-site surveys commence; pre-application discussions with Leeds City Council
November 2023-January 2024: Developed project plans created and stakeholders feed back; planning application submitted
February-May 2024: Technical project plans created and stakeholders feed back; contract awarded
June 2024-July 2025: Building
August 2025: Building handover
Key stakeholders
Leeds Teaching Hospitals NHS Trust
Leeds Hospitals Charity
MND patient group
Corstorphine & Wright
Builder
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This article was taken from the May 2024 edition of FORTIS magazine.
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This article was written for the November 2024 edition of FORTIS magazine; a forum for the NHS to share ideas, innovations and case studies. To read the publication in full and access digital copies, visit FORTIS magazine. FORTIS magazine is free for NHS change-makers and leaders and is available as a print or digital copy. FORTIS magazine is managed and owned by Health Spaces Ltd.
