'Exceptional' and 'adorable' Peak District NHS doctor diagnosed with incurable disease raises funds for MND Rob Burrow Centre

Dr Louise Jordan, 62, of Froggatt, who was a full-time GP during the Covid pandemic, noticed some slurring in her speech in the summer of 2020.

She first put this down to the exhausting workload that the pandemic brought.

But her speech got more slurred and she consulted a colleague who started investigating her symptoms in September 2020 – before diagnosing her with MND a year later.

Louise said: “Having cared for many people with MND, both in my practice and during my work at the local hospice MND was my greatest fear as soon as my symptoms started, as I just knew too much about the bleakness currently of the diagnosis.

"This is an incurable disease, which progresses rapidly causing lots of disabilities - and most people die within three years from diagnosis.

"My colleague told me he thought I had MND during a phone consultation in October 2021 – that I had made time for in my busy surgery – and I had to put the phone down from him and immediately see the next patient.

"It was not until that evening when I told my partner Rob that the enormity of what that meant for him hit me and it was very distressing.

"Apart from my work partner, we did not tell anyone else until three months later as we knew that it would cause so much distress and pain so we wanted to make sure we were in a better place and had our ducks in a line.”

Robert Firth, Louise’s partner, said: “I felt anger that Louise, who has done so much to help other people over so many years, is now reduced to needing help herself. It seems so unfair.”

Following the diagnosis in October, Louise’s symptoms progressed rapidly and by Christmas, she had completely lost her power of speech and developed swallowing difficulties. By the beginning of last year, she was forced to retire.

She said: “Loss of speech has had a devastating impact on my life. Verbal communication was key to my career as a GP asking the right questions at the right time in a consultation cannot be scripted and relies on the ability and the art of speaking at the right time with the right content.”

Following the news of Louise’s early retirement, many patients sent messages to Louise naming her a ‘wonderful person and an outstanding GP’ and thanked her for ‘empathy and support’ which ‘carried them through an agonising journey’.

One message said: "I wanted to thank you for the care and attention you have always shown, and which always made me feel I was receiving the best available treatment, and this from someone who genuinely cared.”

While a different patient said: “You have guided and supported all of us, making us laugh, when things got tough you were utterly brilliant.”

Someone else added: "You have not only been our kind, caring, compassionate GP, but... our friend.”

Rob said: “This is a snapshot of the sentiments expressed in the hundreds of good will messages sent by her patients, friends and colleagues. But words alone cannot describe such an amazing person and certainly don`t do her justice.”

But the disease has not only prevented Louise from continuing her career – it has also impacted her personal life.

Louise said: "Chatting with friends and family has been so important, I was always a talker. My elderly parents cannot grasp texts or WhatsApp and I cannot phone them as I cannot speak. We just about manage to email most days but my arthritic 92-year-old mother finds even that is very hard.

"I can no longer play the flute as I cannot blow, I can barely play the piano as my right hand is weak, I am very unsteady so my garden, a huge passion, is very difficult to tend to and Rob is getting fed up of lifting me out of flower beds.

“Because I cannot speak people often assume I am deaf and stupid and this is frustrating and humiliating.

"Eating out is now virtually impossible because of my swallowing difficulties, we are foodies and that is a great loss and also limits social interactions. Walking is increasingly difficult. I am most sad that Rob has now had to become my carer.”

Rob said: "It is utterly devastating once the reality of this cruel disease sets in, not for myself, but for Louise. For someone who was always on the go, always enjoying banter with her patients and colleagues, to be reduced to someone who is trapped in their own body, unable to speak and often mistaken as deaf and stupid is completely humiliating for her. I cannot describe the level of frustration she feels on a daily basis.”

But Louise did not allow her symptoms and struggles to stop her from helping others.

After setting up Helen’s Trust in 2001, she got to know the CEO at Leeds hospital – who are overseeing the Rob Burrow appeal and soon contacted her to offer any help. She asked Louise and Rob to get involved with the seven stories appeal to raise awareness and funds for the MND centre to be built in Leeds.

Louise said: “In the depths of despair, we decided to do something positive with our experience. Research needs to be supported to find a cure for MND and earlier diagnosis. The disease progresses, often rapidly, causing lots of disabilities so awareness needs to be made to help with the isolation. Leeds centre will put all the specialists under one roof in a purpose built, wheelchair friendly, building.”

Louise’s involvement in supporting MND research has inspired her family and friends to get involved too – and some of her previous work colleagues have organised a charity walk last weekend to support her efforts.

Louise said: “I was so immensely flattered and overwhelmed by the enthusiasm that has been behind the walk. The whole surgery has got behind it and many, many patients and staff have sponsored it. They raised in excess of £3,000 and I am so proud of the team.

"One of my sons ran the Rob Burrow marathon this month, generating £6,000. Some patients have organised concerts and coffee mornings and a group are doing the three peaks challenge.

"I am overwhelmed by the kindness of friends, colleagues and family and find this difficult to accept at times. Having supported so many patients and families with this awful condition I am only too aware of the burden it imposes. My first husband died nearly 12 years ago and I am so worried about the burden this puts on my sons.

“Most of all I am so distressed by the burden and responsibility this puts on Rob, my partner of the last eight years, who has now had to curtail his career as a chartered surveyor to become my carer. That said he does it with so much love and patience and kindness..and that is overwhelming too.”

Rob said: "Anyone in my position who cares for a sufferer of MND will know how one`s life changes. I feel incredible awe – Louise is so brave and has lost none of her renowned sense of humour.

“Louise is exceptional, inspirational and adorable. I regard it as a privilege to be here to help her, she is such a special person.”