The rules of the social welfare schemes in Ireland excluded people who had received Invalidity Pension from engaging in Public and Patient Involvement (PPI) activities. It excluded any paid or voluntary work, unless the recipient received permission from the Department of Social Protection. I receive this payment, and the Department permitted me to speak for 10 minutes at an online conference on PPI, but with the condition that they could now review my Invalidity Pension, which required a new medical examination. This was unacceptable, and so I declined the speaking engagement.
However, I saw this as a broader issue for research, and started a process to fix this issue. This initially involved creating awareness of the problem. I spoke to politicians about the issue, and a question was raised in the Irish Seanad, and the members expressed surprise this was possible. PPI Ignite, an organisation promoting PPI in academic research, was not aware of this problem, and neither was IPPOSI (an organisation representing the health industry and patients).
The Principal Investigator in a trial (I was a co-applicant for the grant) wrote to the department to get clarity on the issue, so 2 Embedded Patient Researcher’s could be employed in this study. But the issue was not resolved. Something more needed to be done, and when I attended a meeting about income supports for disabled/chronically ill people, I met the person in charge of policy for these payments. We had a long chat, and now they understood the issue, and a process was started to fix the mistake.
I gathered a coalition of interested parties, which included PPI Ignite, IPPOSI, HSE (Health Service Executive), HRCI (Health Research Charities of Ireland) and another person in receipt of an Invalidity Pension. After several meeting’s, and a period of time, we were successful in adding the following text into the rules associated with Invalidity Pension.
Patient and Public Involvement in Research (PPI)
Patient and Public Involvement (PPI) in the health sector is consistent with the conditions of the Invalidity Pension scheme. Given the value of PPI, Invalidity Pension Claimants may take part in PPI activities. Prior to commencing, Invalidity Pension Claimants must notify the Department with details of their activity(s) and any payments they may receive under their engagement, to ensure their Invalidity Pension payment is not impacted.
We are now in dialogue to extend this to other payments, and to raise awareness in other countries who may have a similar issue.
University of Galway(UG)
Embedded Patient Researcher/July 2019 – present
The COB-MS trial is feasibility study, funded by the HRB, for a new cognitive therapy for people with Multiple Sclerosis. My role is to be the voice of the patient and it is the first time a patient has been employed by UG for this type of role. The contributions have ranged from recruiting participant using print, radio and social media, to development of material used in the trial which are suitable for people with MS. I am also the editor of the trial newsletter. This study won the inaugural PPI Ignite Excellence in PPI Award.
I am a co-applicant for the definitive trial of this intervention, and am now on the Trial Steering Committee, and I ensured there were two Embedded Patient Researcher roles in the study, which started in September, 2025
A 30 Minute Life
Blogger/Podcaster/July 2017 – present
Sharing my patient experience on my blog, podcast and through social media has introduced me to patients (of all types) and their need and challenges. Hearing about these has pushed me to advocate on their behalf. This highlighted a need for more direct support, especially in respect of mental health. With Dr Jonathan Egan (Clinical Psychologist) we recorded 4 programs on how to manage anxiety, stress and depression during the pandemic. This is available on my blog and has been broadcast by Connemara FM. This led to a 10 part webinar series, supported by MS Ireland, on how to be resilient while living with Progressive Multiple Sclerosis.
A selection of Patient Advisory Roles
–University of Galway – Patient educator for doctors, Speech & Language therapists, and Occupational Therapists
-Gravitate Health – Member of the User Advisory Group
–Health Research Board – Member of the organising committee for its conference on Precision Medicine
–PPI Ignite – Member of the Public Advisory Board
-PEOF – Member of the Program Committee
–HSE (Health Service Executive) – Member of the following committees:
– Health Service Executive’s National Committee for the Governance Management & Support of Research
– Health Service Executive’s National Research Committee,
– Research and Development PPI Reference Group and,
– Research Governance Implementation Working Group
–DayOne Hackathon Basel, Switzerland (2021) – Patient champion for three medical apps
–Servier-Saclay – Patient advisor on suitable use of a building to integrate researchers and patients
– Neurological Alliance of Ireland – Patient champion for more neurological nurses nationally
– Novartis – member of the Multiple Sclerosis Advisory Panel
– Roche – Patient Advisor
– IPPOSI – member of the EUPATI National Platform
– Patients as Partners Europe 2022 – keynote speaker
– University of Galway – Galway Medical Curriculum Virtual Think Tank Member
– IMI-PARADIGM – Patient advisor for the Sustainability Work Package
In the words of EUPATI Fellow Robert Joyce – Cohort 4