A day in the life of... Tessa Rose, MND Co-ordinator

In the Latest edition of the Latern magazine, Tessa Rose, Motor Neurone Disease Co-ordinator, tells us about her working day.

“As the Farleigh motor neurone disease (MND) coordinator, my role is multi-faceted, focusing on supporting patients and their families while collaborating with outside professionals to improve our patients’ overall experience with the healthcare system.

I always begin by catching up on emails and preparing for the morning meetings, which I attend on rotation between the South, North, and Central Teams. It’s really helpful to hear what’s going on with the teams and it means that I’m able to immediately raise any concerns I have about the patients who sit within those teams.

This morning, I have a patient visit. I often visit patients with one of our physiotherapists or occupational therapists, as this group of patients tend to have a high level of therapy need.

One of the primary concerns for this particular family is an upcoming hospital appointment. For many MND patients, attending appointments requires significant coordination. Some patients rely on hospital transport and trained carers for transfers, and the logistics of it all can be overwhelming. This family has struggled to reach the right team to clarify some details about the appointment.

As part of my role, I offer to contact the hospital to ensure the families’ questions are answered and that the appointment goes as smoothly as possible.

Once the visit is complete, I return to the office and write up my notes. I follow up by emailing the hospital clinical nurse specialist regarding the patient’s situation and calling the Motor Neurone Disease Association to request printed information for another patient.

A quick bite to eat at my desk is followed by a conversation with one of our clinical nurse specialists. She’s asking about a patient I recently visited, specifically whether the new medication prescribed is helping with her symptoms. Our teams all work together. We share ideas and suggestions across different areas of expertise, which we feel ensures better patient care.

I then make a series of calls and emails to remind patients about our upcoming Neuro Support Group. This monthly event is an opportunity for patients and their families to gain expert advice from our specialist team. This group also provides a space for people to share experiences and ideas with others in similar situations. Last year, we even had a few adorable animals visit our Christmas party, and everyone enjoyed cuddling the softest rabbit we’ve ever met.

After the support group reminders, I make a call to a patient’s wife, who is struggling to apply for a blue badge for her husband. Navigating these processes can be frustrating, so I guide her to the right website and email her a supporting letter. Later, I send an email to a patient I visited yesterday, offering travel tips and mobility vehicle suggestions based on our conversation about finding accessible holidays.

I then email a hospital in London to ask if they could review one of our patients. Recently, I had the privilege of sitting in on the clinics at The National Hospital for Neurology and Neurosurgery in Queen Square. Here, patients can see several specialists in one appointment. For MND patients, care often involves a long list of specialists, including neurologists, respiratory experts, speech and language therapists, physiotherapists, dieticians and, of course, the team of palliative care professionals at Farleigh.

I absolutely love working at Farleigh Hospice. The knowledge and dedication of our teams is like nothing I have ever experienced, and I am so proud to work alongside these amazing people. It is also a great privilege to be invited into the lives of our patients and their families and I try never to take that for granted."

This story is taken from the 2025 Spring Lantern #113 magazine.

(Article first published 5 April 2025)