Supporting lived experience and voluntary organisation engagement in the National Neuro-Rehabilitation Strategy

Disability Federation of Ireland (DFI), Neurological Alliance of Ireland (NAI) and the HSE are partnering on a new project. Its aim is to make sure that people with lived experience, and the voluntary organisations that support them, have a real say in how the National Neuro-Rehabilitation Strategy is put into practice. 

Neurorehabilitation is the range of therapies and supports for people living with neurological conditions, whether sudden onset such as stroke or brain injury, or progressive, like multiple sclerosis or Parkinsons. It aims to help people achieve the best possible outcomes through person-centred care, delivered as close to home as possible. 

The people who use neuro-rehabilitation services should help to shape how those services are provided. It’s also important to hear from voluntary organisations. They help join up specialist care and community services into one clear pathway for people who use them. This project is about making sure both groups are heard, are involved in developing and delivering services.  It’s also about giving them the support they need to take part. 

The project grows out of earlier partnership work between DFI, NAI and the HSE. The Neuro-Mapping Project ran from 2022 to 2025. It mapped community neuro-rehabilitation services across several regions. It also listened to people with lived experience and service providers about what was working well and what wasn’t. It found a clear need for services that are joined up, fairer, and easier to access, and it further highlighted the critical role of people with lived experience in shaping those services.

This new project carries that learning into the next stage, focusing on putting the strategy into practice.  

To start, the partners will look at how people currently take part in the national and regional groups that guide the strategy, and how well those arrangements are working. 

They will then design and roll out better ways for people to get involved. This will be based on what people with lived experience and voluntary organisations tell them, good practice, and lessons from similar work elsewhere in health and disability services. 

The project has two connected parts. The first is about people with lived experience.

It covers: 

• keeping people better informed and supported 
• creating clear and accessible materials 
• finding better ways to include people with communication or cognitive needs 
• offering places on the national and regional groups fairly and openly. 

The second part is about voluntary organisations.  

It covers:  

• making sure they can take part fairly 
• making it easier for their representatives to bring what they learn back to their own organisations and the wider sector. 

This is a one-of-a-kind project that could directly shape how national policy is put into practice. We hope it will teach us a great deal about how to involve people with lived experience in neuro-rehabilitation in a meaningful way. 

Recruitment for the Project Officer role is now complete, and Aoife Kirwan has joined in post. Aoife will be attending upcoming meetings to introduce herself, with more detail on the role and next steps to follow. She'll be in touch in due course as the project progresses.