Suzanne has worked as a neurology specialist nurse for 19 years, supporting people with a range of long-term neurological conditions. She has recently completed an MSc in Advanced Clinical Practice, and is also an APPI qualified Pilates Instructor, with a special interest in helping people of all abilities to engage in and experience the benefits of regular exercise.
What is your role as the Specialist Ataxia Nurse at the London Ataxia Centre, and how long have you been in it?
I have worked as a specialist neurology nurse for around 19 years, initially in Creutzfeldt-Jakob Disease (CJD) research at Queen Square. I then went on to work as an MS specialist nurse for a number of years before returning to Queen Square to work with people with neuromuscular diseases. I joined the London Ataxia Centre in 2018 – it seemed to be a role that combined aspects all of my previous experiences into one!
A large part of the role involves helping people manage the day-to day impact of ataxia, including symptom and medication management, arranging referrals to other services such as Neuro-physiotherapy and Occupational Therapy, as well as helping people access available benefits and services within their local community. Our patients often need help to accurately communicate information about their condition and how it affects them in order to get the right support locally.
I work with a large team of medical and therapy specialists which reflects the complex needs of people with ataxia, such as Uro-neurology, Neuro-ophthalmology and Audiology. For many of our patients it is the first time they feel their symptoms and problems have been properly heard and understood.
In your role, what kind of issues and symptoms are you normally confronted with?
For a lot of the people we see in clinic, we are helping them to navigate changes in their mobility, such as how to improve their safety when walking and their home environment; identifying changes in speech and swallowing that might trigger a referral to therapy services, and issues with bladder symptoms and communicating the help that is available. Many of our patients struggle with painful cramps and spasms or neuropathic pain, and part of my role involves helping patients accurately articulate their symptoms so that they receive the right treatment, be that medication, exercises, or referral to specialist pain or spasticity
services.
For many people, it is also about highlighting which symptoms are related to their ataxia and which symptoms may be due to other causes that require separate input. When health professionals are not familiar with their condition, there can sometimes be difficulties with symptoms being overlooked and assumed to be part of their ataxia diagnosis when that may not necessarily be the case.
A lack of awareness about ataxia can often make applications for benefits such as PIP or a Blue Badge extremely challenging, and many of our patients require support to convey the right information to obtain the support they should be entitled to.
Could you talk about some of the research that you have been involved in?
The London Ataxia Centre coordinates several natural history studies, which are a type of investigation that follows a group of individuals over time. These individuals either have a specific medical condition or are at risk of developing one. The primary goal of these studies is to help us to understand how the condition develops and changes over time, which can provide valuable insights into potential treatment options. This has been highlighted very recently in the progress made with the development of the first disease modifying treatment for Friedreich’s Ataxia (FA).
The London Ataxia Centre played an important role in recruiting patients into the MOXIe trial which demonstrated the effectiveness of Omaveloxolone in slowing disease progression in FA, which is incredibly exciting. Without the information gathered over many years via natural history studies this would not have been possible.
What advice would you have for anybody who is attending the Ataxia Centre for the first time in London, or they are going through the referral process?
To prepare for your appointment, think about bringing a list of your medications, any questions you specifically want answered or symptoms you particularly want help with managing. We will ask you a lot of questions about your past medical and family history, so it might be helpful to discuss this with your family beforehand so that we can have all of the relevant information. Most people find it helpful to have a friend or family member with them to provide support with both giving and receiving information.
Sometimes it can feel overwhelming to discuss your problems, so some people find it helpful to bring notes regarding their symptoms. We will usually ask questions about how and when your symptoms started, how they have changed, what activities you are finding difficult and what makes your symptoms better or worse. Hopefully people leave their first appointment with a clear plan of investigations to achieve a diagnosis if this is not yet known, and recommendations as to how we can support them to
better manage their condition going forward.
What are some of the challenges that you have faced in your role, and how have you been able to overcome those where possible?
The NHS is obviously under unprecedented pressure in terms of resources and staffing, and this has been compounded by the recent COVID-19 pandemic. It was extremely challenging to suddenly provide a remote service essentially overnight, however this challenge has actually resulted in changes that have benefited the service, and that we have sustained going forward.
We now offer patients face-to-face, remote and telephone appointments, which for people with significant disabilities has made it easier for them to stay connected with the service. Patients would previously have been potentially lost to follow-up once travelling to the hospital became too difficult. Waiting lists for some of our services such as physiotherapy, were extremely long, again exacerbated by the pandemic, however these have been shortened through changes in the way care is delivered now.
Together with our Neuro-physiotherapist, I was involved in helping to develop remote group exercise clinics for our patients, which is now an ongoing service we offer, with really encouraging patient feedback. Patients report that they value the opportunity to meet other people with similar conditions, often for the first time, so the benefits are not just limited to physical exercise and shorter waiting lists!
What are some upcoming goals and plans within your role?
My colleague Katarina Manso and I attended a specialist nurse conference recently, and it was brilliant to hear what nurses in other services are doing. It gave us plenty to think about, particularly symptoms and areas that we perhaps do not necessarily support as well as we could. Feedback from patients indicates that people would like more information earlier around topics like end of life care and advanced care planning. As health professionals I think we are sometimes anxious about raising these sorts of issues prematurely, but I think nurses, often as the main point of contact for patients over many years, are sometimes best placed to start these conversations.
Read about the services offered at the London Ataxia Centre here.
Read more about the London Ataxia Centre, and the other specialist ataxia centres across the country here.
