Rachel Higgins (BSc (Hons) MCSP) is a Clinical Specialist Neurological and Vestibular Physiotherapist at The National Hospital for Neurology and Neurosurgery (NHNN). She has worked within the field of neurology since 2014 and is part of the multidisciplinary team at the London Ataxia Specialist Centre.
What is your day-to-day job like at the Ataxia Centre?
We meet people from all over the UK. In the multidisciplinary clinic, we complete a detailed assessment because ataxia can affect many different aspects of someone’s life. The cerebellum plays a role in so many things, so we don’t want to miss anything. We will ask a range of questions from how people are getting on at home, doing things like getting dressed and cooking meals to how they get around the house, and outdoors. We also ask questions about communication, swallowing, fatigue levels and mood.
As a physio, I want to see if people are keeping as active as they can be, so I’ll ask people about what they are able to do within the remits of their ataxia. Are they able to be active and keep some level of fitness?
The idea of the clinic is that it’s a one stop shop appointment. Rather than having lots of individual appointments, you have one and get to see everyone from the multidisciplinary team at the same time.
The clinic runs once per week and is a mixture of face to face and video appointments. Video appointments can be helpful if people live quite far from London or travelling to appointments is challenging.
At the London Ataxia Centre, we try to support local therapy teams to best support people with ataxia. People often cannot travel to London for therapy appointments and often therapy is most beneficial if it takes place in your own home.
How long are appointments?
1 hour. We do our best to cover everything in that time but as you can imagine, that can often be a challenge. It might be that for some people the effect on their speech is the thing that’s bothering them most, so we might try and spend more time dedicated to that. Ataxia affects people so differently.
A limitation we’re very aware of is that some clinics are run by video. That’s a plus in terms of travel, but it adds another complication to people’s communication, especially if you’re someone that doesn’t find the computer easy to use, and if you’ve got communication difficulties.
What are the most common issues people with ataxia are presenting to you as a physio and what approaches do you take?
One of the more common things is I see is deterioration in balance. Understandably if you have ataxia and it affects your balance, it’s natural to limit how much you’re walking. You don’t want to fall; you want to be safe. It’s common to see people going out for walks less often. People might give up some forms of exercise because of a worry about falling and, although totally understandable this has a knock-on effect. Less exercise or activity leads to muscles being used less often. This leads to muscle weakness which, in turn, worsens balance. People also become deconditioned, making daily tasks more effortful and fatigue levels can increase.
Although in a number of cases, we cannot necessarily do anything about the ataxia process, there’s a huge amount people can do about how strong they are and how fit they are. As a physiotherapist, I try and work with people to find ways to increase their activity levels in a safe way and by doing activities they enjoy.
I think it’s a huge adjustment if you were someone that was able to do a lot, and because of ataxia, now that’s more difficult. I help people to find an alternative, or an adapted way of doing something. It is important to say that in some forms of ataxia, there is cardiac (heart) involvement. In these cases, exercise type and intensity must be carefully considered.
How can access to ataxia centres be improved?
One issue is that not all healthcare professionals in the UK are aware of the specialist ataxia centres. If they come across people with ataxias, they might not know that there are centres that you can refer to and get advice from. What we are trying to do as a team is boost our profile. There are upcoming conferences where we will be able to meet healthcare professionals from all over the country. We want to share our knowledge and network, so people know we’re here.
The service has been running for many years and we have been collecting feedback from people that have attended our clinic and it’s been very positive. We are looking to publish this. Not only will this increase awareness of the clinic, but in the future if we want to increase the clinic further, we’ve got all this amazing feedback showing how valuable it is.
My colleagues Genny Hart and Suzanne Booth applied for charitable funding to create a series of Pilates videos specifically for people with ataxia. We know there are hundreds of exercise videos and classes available to people, but these are not tailored for people with ataxia. We hope these exercise videos will be really valuable. People can follow them in their own time, knowing that the exercises have been tailored to people with ataxia.
Within physiotherapy, what research is going on now that you’re particularly interested by?
For quite a few years now, we’ve known about the value of a increasing the intensity of exercise. For a long time, it was thought that because ataxia is progressive, your walking and balance can only deteriorate, but now we know that with higher intensity exercise (aiming for at least 6 hours per week), walking and balance can improve (as evidenced by an improvement in walking speed and reduction in falls).
In the future I am interested in looking at the benefit of water-based exercise in people with ataxia. I see a number of people who are understandably afraid of falling and therefore reduce their amount of exercise and movement. The buoyancy properties of water could be a way to increase people’s confidence to exercise.
To read more about the physiotherapy services offered at the London Ataxia Centre, click here.
Read more about the London Ataxia Centre, and the other specialist ataxia centres across the country here.
Read our other interviews with specialists at the London Ataxia Centre here:
Consultant Neurologist, Prof Paola Giunti.
Specialist Ataxia Nurse, Suzanne Booth.
