Tell us about the role:
My role can be largely divided into two halves, Advocacy and Research. From an advocacy perspective, my main goal is to ensure that a collective voice for people affected by MS is heard in order to ensure the interests of the MS community remain represented at a national level. I am also responsible for furthering and promoting MS research, in order to establish a better understanding of the supports and treatments that may be beneficial for the management of MS and associated physical and psychosocial effects.
At its core my role is responsible for keeping the interests of people affected by MS at the centre of the discussion and ensuring that people affected by MS have an active say on the national stage.
What are the biggest advocacy issues for people living with Multiple Sclerosis?
As members of the wider disability community, people living with Multiple Sclerosis may have similar issues the realm of advocacy such as housing and transport issues which makes our relationships with wider disability and neurological organisations all the more important in advocating on this broader issues.
There are also a number of advocacy issues that would be more specific to people living with Multiple Sclerosis which will form the majority of advocacy activities as an independent organisation.
These include:
- Implementation of the 2019-2021 National Neurorehabilitation Strategy
- Increased investment in neurology services
- Ending the ‘postcode lottery’ surrounding access to MS treatments
- Promotion of employment retention and return to work for people with MS
- Increased investment in services that support people to continue to live in their own communities, such as home care, Housing Adaptation Grants and community therapy services such as physiotherapy and occupational therapy
- Increasing of availability of access to medical cards and GP visit cards, with application processes that account for the additional financial costs of living with MS
- Development of MS registries
As part of our Pre-Budget Submission I will also be advocating for further funding for the National MS Care Centre as well as for sustainable funding for a National Physiotherapy Service.
We are also echoing the asks of the Neurological Alliance of Ireland, the Disability Federation of Ireland and Family Carers Ireland. Read more HERE.
You can contact Alison by emailing alisonc@ms-society.ie