Ms Ava Battles:

The Multiple Sclerosis Society of Ireland was established in 1961. In the 58 years since its foundation its mission has evolved to support people with multiple sclerosis, MS, in the rapidly changing therapeutic, social, political and economic environment. It is the only national organisation that provides information, support and advocacy services for the MS community. Our mission is to enable and empower people affected by MS to live the life of their choice to their full potential.

We receive 52% of our funding from the State and 48% through fundraising initiatives. We are very cognisant of the lack of neurorehabilitation services available to people with MS and a wide range of other neurological conditions. We are also very aware that MS and other progressive neurological conditions can have both physical and psychological consequences which may have an enormous long-term impact on almost every aspect of the daily lives of those affected. Being aware of this and obviously everything Ms Rogers and Dr. McCarthy said, we believe that, as a voluntary organisation, we have a variety of creative and dynamic ways to mitigate the deficits mentioned. I would like to take the joint committee through two or three of them.

One is our exercise related activity programmes that are run in the community. As Dr. McCarthy said, most people come back out and live in their community after their diagnosis. When we won "Tesco charity of the year" a number of years ago, the money was put into a research project with the University of Limerick's physiotherapy department. The results of the research clearly demonstrated that, to effect change in an MS population, physical activity needed to be delivered with frequency and intensity to maintain the change. The results also showed that when people stopped, they returned to a baseline, or often worsened. We know from the research that a person with MS will probably, if he or she is lucky to receive it because it is provided on an ad hoc basis, receive one hour's worth of physiotherapy from the State in his or her local community. That is if he or she can get out of his or her home and travel to the physiotherapy class, or even get into it because a lot of the places in which classes are being run are not accessible. We know that we have an issue in that regard.

We provide around €200,000 of fundraised income a year for the provision and delivery of physiotherapy and exercise-related programmes. In 2018, 1,802 people accessed the programmes in the Twenty-six Counties. The delivery of the programmes is supported by the Department of Employment Affairs and Social Protection. Therefore, what we have are community employment programmes, as part of which we have people participating in a back-to-work programme training to become physiotherapy assistants. The physiotherapist makes the assessment of a person in the community and the trained physiotherapy assistants will go out to him or her on a weekly basis for the physiotherapy class. It is someone who may not be able to get out of his or her house because he or she does not have transport from his or her rural location into the community or he or she may feel he or she is not able to do so because of fatigue. Our physiotherapy assistants will go to the house and we know from the research that it is not only the actual physical activity that improves a person's mental and physical health but also the interaction with others and the social engagement with them. The physiotherapy programmes came from the initial research programme and are being delivered throughout the country. We have continued the relationship with the University of Limerick and developed two new evidence-based programmes with the focus on prevention. They are being run with funding we have received where funding is restricted to research initiatives.

The first programme about which I would like to tell the committee is Step it Up. It is a physiotherapy-led exercise and education programme designed to improve symptoms through knowledge, exercise participation and coaching. It has primarily been designed for people who are inactive, have minimal walking problems and been relatively recently diagnosed with the condition. Its central aim is to encourage participants to address and plan for their physical activity needs. Let us put it into reality. Let us take someone called Mary, a 24 year old female nurse. She has received a diagnosis of MS and is struggling to maintain her daily activity levels in her work. As she is finding it really difficult, she comes to our community worker for an assessment. The reality for her is that she is just about able to work during the week and when she comes home in the evening, she has to go to bed. She is exhausted and needs the weekend to recover. She is referred to one of our Step it Up programmes.

Based on a 12-week programme, she is now running with her dog and, as of last week, she was running up a hill. This is real. We can spout statistics all we want but I wanted to try to make it real for members. Mary is a person who is now no longer concerned about not being able to work and she is no longer considering retiring at 27. She is actively participating in and contributing to society and paying her taxes and she now has better quality of life.

The other programme, Better Balance, is a physiotherapy-led exercise and education programme designed to improve balance and reduce falls. It is suited to those who have recently experienced a fall or who are afraid of falling. It does not apply only to people with MS but it is obviously related. Its central aim is to encourage the self-reflection of participants in their daily lives to avoid falls. A 44 year old female who has retired from her employment due to multiple sclerosis had fallen three times in a two-year period and had three fractures. She has not fallen in the past 12 weeks and is now going back out and socialising. One must look at it from her point of view, that is, the point of view of someone who is 44 and retired. These programmes are enabling her to participate in her community and increasing her quality of life.

We have taken all the research I have mentioned in respect of the two programmes and turned it into an Activity Matters programme, which is available on a website. One can avail of it in one’s own home, as long as one has an Internet connection.