Northern Ireland Rare Disease Partnership

In February 2011, Rare Disease UK, in collaboration with the Huntington’s Disease Association Northern Ireland, Motor Neurone Disease (MND) Association and the Progressive Supranuclear Palsy (PSP) Association, took the initiative to establish a new Rare Disease Partnership in Northern Ireland.

This group aims to bring together patients, carers, patient organisations, clinicians and industry members, to tackle the practical problems facing those living with rare conditions in Northern Ireland.

We have identified five key areas where we can work together:

• Education of professionals: we are planning a training course for nurses in the autumn of 2011 with the support of the Royal College of Nurses. This aims to increase awareness of Huntington’s disease, MND, PSP, and other rare conditions. We hope to follow this with training sessions for other groups of professionals including GPs, allied health professionals and social workers which will be focused on increasing knowledge and awareness of rare diseases and where to find specialist advice and help for these conditions. 
• Improving access to specialists: we are working to build a “directory” of specialists to help healthcare professionals find the specialist help their patients may need more easily and rapidly.
• Lobbying on behalf of rare diseases: an essential part of getting better services is to communicate the needs of the rare disease community to policy makers and to feed into the various consultation processes led by the DHSSPS. The Northern Ireland Rare Disease Partnership will add weight to the campaign for a strategy for rare diseases in Northern Ireland and will support RDUK’s recommendations in the Improving Lives report.
• Coordination of services: The Medical Genetics Department at Belfast City Hospital are represented in the Partnership, and we hope to work with them and with other interested clinicians to identify and implement practical improvements to services for rare disease patients.

• Support for families: The Patient and Client Council is particularly interested in this part of our work, and is going to work with us to identify how support and services for families of rare disease patients could be improved.

 

How to get involved

The Patient and Client Council is supporting the Partnership as part of their efforts to strengthen the voice of those with rare conditions. Membership of the Partnership is free, and open to anyone interested in these issues. Joining will mean that you automatically get news of what is happening and the opportunity to contribute should you wish. It will also mean that the numbers of people interested in these issues is properly recorded for the benefit of politicians and service planners.

You can join by contacting Sarah McCandless in the Patient Client Council (telephone 02890 321230; e-mail ) and asking to be registered on the Membership Scheme for Rare Diseases.

We need your experiences of services for rare disease patients so that we can identify what improvements need to be made in the coordination of these services. If you have any examples of things which work well in terms of service provision and could be used more widely, or of things which don’t work at all, or any ideas on how to improve services, then please email them to