Living Every Day with Rare Disease

In Northern Ireland it is estimated that more than 100,000 people will have a rare disease at some point in their lives.

The Public Health Agency (PHA), in partnership with the Northern Ireland Rare Disease Partnership (NIRDP) and the Health and Social Care Board, has led the development a Personal and Public Involvement (PPI) survey to find out the patients’ experiences of living with a rare disease.

The ‘Living Every Day with a Rare Disease’ launch event took place at Parliament Buildings last week. The event brought together a wide range of service users, carers and the public as well as health and social care professionals, community and voluntary organisations and MLA’s to support the involvement exercise.

Launching the survey, Michelle Tennyson from the PHA said: “We are committed to supporting people to tell us what it is like to live with a rare disease, listening to what they tell us and learning how best to provide services to meet their needs.”

Sharing his experiences with policy makers, Michael Holden said the survey was an opportunity to make sure his experience helped make a difference.

He said: “Being diagnosed with a rare disease, in my case Motor Neurone Disease, is life changing. There are many areas we need to improve in terms of supporting patients. It can be difficult for patient support groups and charities to impact services, so I would ask everyone affected by a rare disease, personally or through a family member, to complete the survey and have their voice heard.”

Dean Sullivan, Director of Commissioning at the Health and Social Care Board, added: “The findings of this survey will be used to inform the commissioning of health and social care services for patients and clients with rare conditions.”

The survey and engagement information can be found online at www.nirdp.org.uk 

Hard copies will be available and NIRDP volunteers will attend clinics or meet people living with a rare disease to help complete the exercise.

PPI is core to the effective and efficient commissioning, design, delivery and evaluation of Health and Social Care services. Good PPI is about the active and meaningful involvement of service users, carers and the public in those processes.

In addition to the survey, the NIRDP also unveiled local plans to mark the world-wide “Rare Disease Day” on 28th February, with a conference at Riddell Hall in Belfast.