Professor Paola Giunti is an award-winning Consultant Neurologist. She has specialised in ataxias for over 30 years, and set up the London Ataxia Centre in 2005. At the London Ataxia Centre, Prof Giunti has led clinical and lab-based research at the UK’s only site for EU-wide natural history studies of the progression of FA and the SCAs.Â
What is your role at the London Ataxia Centre?
As a neurologist I facilitate the therapies and diagnose. The input of the rest of the team is vital, as they understand the specificity of symptoms, such as understanding of dystonia (uncontrolled and sometimes painful muscles movements). This is especially important, as ataxias are multisystemic. It is about prioritising. Specialism is what people appreciate. They want to know they are understood.
Within the London clinic MDT, how do you work with your team to provide holistic services to those with ataxias?
The idea of an MDT stems from many years researching ataxias, and experience through the years seeing people living with ataxias in need of support. Most importantly, they need support from those who understand the rarity of ataxias. Of course, we want to understand the cause, and find cures for the ataxias, but overall, we want to improve quality of life for those living with ataxias.
My idea was that a personalised programme could be set up to address practical needs, including basic needs such as eating and other everyday activities. The goal of the MDT is to learn from experience and develop new strategies to support those with ataxias. Video classes are popular, such as Pilates and yoga.
What is very important is the educational aspect of centre, providing people living with ataxias very practical ways to manage their condition.
What feedback have you had on the impact of the London Ataxia Centre?
The feedback has been extremely positive. We have been collecting feedback from attendees to the centre from the beginning through ataxia advocates to shape the centre as a place of both translational research and meaning for patients. The feedback has shown that physiotherapy especially is better received in our specialist centre than in primary care.
What are the key goals and plans for the London Ataxia Centre in the coming months and years?
We plan to seek funding for more structured research in the therapies. This is very challenging, but we look forward to further expanding our research in the coming years.
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.
