Contact NI brings rare condition families together

3 mins read

Monday 12 February 2024

Tags: rare conditions, northern ireland, conference, contact ni

On Wednesday 22 January, Contact NI brought together parent carers and practitioners for a free conference, “Supporting families with rare conditions across Northern Ireland”.

The half-day event aimed to open up dialogue and collaboration towards improving health and wellbeing outcomes for parent carers of children with a rare condition. The event was a combination of open discussions and guest talks.

A total of 43 people attended, with an even mix of parent carers and professionals.

A range of guest speakers

Participants first heard from Caroline McFerran of the Northern Ireland Disease Partnership (NIRDP), one of our two partner organisations for the event, alongside the Pears Foundation. Caroline introduced us to the charity’s ‘Rare Stories –  Voices of the 1 In 17 project’. She also spoke about the story of Saul, who lives with Spondyloepiphyseal Dysplasia Congenita (SED).

Also speaking at the event were parent carers Ann-Marie Hoey and Claire O’Hanlon. Ann-Marie is mum to identical twin daughters living with the rare genetic condition PKU. Claire O’Hanlon is mum to Luke, who lives with Duchenne Muscular Dystrophy.

Claire is an experienced business mentor, charity founder and MBE recipient for her services to Muscular Dystrophy campaigning and fundraising. She spoke about ensuring that the lived experiences of parent carers are valued and listened to when services are designed and delivered.

Discussion groups brought frustration, but optimism too

Before the conference, participants were asked to consider three key questions around co-production, family support, and training and support for practitioners. During the event, parent carers, practitioners and staff from Contact and NIRDP formed breakout discussion groups.

Attendees highlighted persistent challenges, including the postcode lottery in accessing support services and waiting lists for diagnosis and support. Frustration over bureaucratic hurdles and a lack of awareness about rare conditions in certain settings, such as A&E, resonated strongly. Practitioners also felt frustrated by red tape and wanted to better understand the experiences of families in navigating services.

Despite the challenges faced, there was optimism about the potential for positive change in practice and policy.

Overwhelmingly positive feedback

Catherine Murnin, Associate for the Business Development team at Contact said: “The event underscored the importance of ongoing support, understanding, and advocacy in navigating the challenges parent carers face. We gained a lot of valuable insight, which we plan to follow up on with the relevant organisations and services to keep the momentum building. We were delighted with the attendance and feedback, and thoughts are already turning to a follow-up event in the future”.

Feedback from attendees was overwhelmingly positive and highlighted how much they valued the opportunity to share their experiences:

“This was one of the best events I’ve attended to give us a balance of information, social time, learning with others and hope that something might change for the better.”

“I was a bit nervous about coming along today as I am new to my role, but felt welcomed and learned a lot from what the parent carers shared. I hope this will improve my practice and how I share with other professionals”.

“It felt like something special happened today. Listening, laughing and having a chance just to talk with others. I enjoyed the informal discussions over the comfort break and lunch. Everyone was so supportive and I would like to join something else again in the future”.