Lift off!

NIRDP was formally launched on Rare Disease day with much support from patients, families, health professionals and politicians.

We were delighted that the NI Minister for Health, Social Services and Public Safety was able to participate in the event- cutting cake, presenting and, most importantly, spending time chatting informally to patients and families. Minister Poots gave up a lot of his time to support the work of the partnership, and we’re looking forward to ongoing work together. The Minister took the opportunity to launch the long awaited consultation on the UK Plan for Rare Disease. NIRDP will be working actively with RDUK to facilitate consultation within Northern Ireland.

NIRDP is a group of interested families and professionals who donate or volunteer their time. Members have health conditions, caring responsibilities, jobs and family lives. The Partnership could not have developed as it has without the support of others. In particular the vision, leadership and very practical support of the Patient and Client Council. They developed a questionnaire, analysed the results and published a report  on patient experience of diagnosis, and organised the very successful launch event.

The decision of the PCC to film some of the experiences of families living with a rare disease has left us with a wonderful resource for awareness raising. (Once we work out how to upload the films to this site, that is. Watch this space!)

The development of NIRDP is itself a reflection of the method and principle ‘Stronger Together’.  If you’re interested in supporting the work in any way, click on that ‘Join us’ button up there, and we’ll chat soon!

It’s Rare Disease Day — time for a launch or two!

Local advocates call for action on international Rare Disease Day as shocking new report highlights shortcomings in Health and Social Care for people with rare diseases

A new report launched by the Patient and Client Council at Stormont today to coincide with international Rare Disease Day captures how people affected by rare diseases in Northern Ireland frequently face long delays in accessing a diagnosis for their condition and suffer a poor experience of Health and Social Care in Northern Ireland.

The report which is based on a survey conducted of 132 people (both patients and carers) affected by over 60 different rare diseases reveals:

  • 29% of patients wait between 1 and 5 years for a correct diagnosis and over 20% wait over 5 years;
  • 34% of patients are misdiagnosed – 20% of which received inappropriate treatment as a result;
  • Patients have to attend multiple appointments with different health professionals to obtain a diagnosis and it is frequently a battle to do so;
  • 57% of people caring for a person with a rare disease do so for more than 20 hours a day;
  • Over 40% of patients described their experience of the health and social care service in Northern Ireland as “poor” or “very poor”, and nearly a quarter described it as “average”. Only a third of patients described their experience as “very good” or “excellent”;
  • Patients also reported feeling ignored by doctors, and that there is a lack of information and support for rare disease patients.

These findings come as no surprise to the patients and families involved in the Northern Ireland Rare Disease Partnership (NIRDP) which is also being officially launched today.  The NIRDP has been set up to bring together those living with a rare disease, and the clinicians, researchers and others working in the field, to work collaboratively to raise awareness, improve professional training and service provision, and campaign for those living with a rare disease in Northern Ireland.

NIRDP Chair, Christine Collins said:

“The findings of this important Patient and Client Council report reaffirm the need for a strong grass roots organisation here in Northern Ireland working in partnership to improve services and offer support to those living with rare diseases and their carers. We want to bring together the expert knowledge, skills and commitment of the clinicians and researchers and the experience and insights of those living with rare diseases, to put an end to the situation where people rattle around the health system without a diagnosis and fail to get the treatment, care and support they need.”

The NIRDP, along with Rare Disease UK, are calling for a UK rare disease plan to improve services and facilitate much needed research into rare diseases, both in Northern Ireland and across the UK. It is hoped the draft plan will be launched for public consultation today.

The Chair of Rare Disease UK, Alastair Kent OBE said:

“Like all patients, those with rare diseases want to be confident that the health service is doing the best it can to respond to their needs. Services for rare disease patients and their families need to incorporate current scientific possibilities delivered to the highest possible standards of good practice. A plan for rare diseases will create a framework that will allow for the best use of the expertise that exists in Northern Ireland, and ensure that this is effectively integrated with services and support elsewhere in the UK and Ireland. Patients and families need to have confidence that the health service is there for them as it is for everyone else. A plan for rare diseases is a tangible expression of commitment to these patients and families, and a yardstick by which we will be able to measure progress.”

Welcome to the NI Rare Disease Partnership

Who are we? We are a not for profit organisation, bringing together those living with a rare disease and organisations representing them: clinicians and other health professionals; researchers and producers of specialist medicines and equipment; health policy makers and academics. NIRDP is a Company Limited by Guarantee, Registered in Northern Ireland: Number NI 611153

What do we do? Advocate, educate and innovate on behalf of those living or working with rare disease in Northern Ireland.

Why? Approximately 100,000 people are living with a rare disease in NI. Collectively, rare diseases are not rare. Unfortunately, that’s not how it feels when a loved one is mysteriously ill and no one seems to know what it is; or when they are eventually diagnosed with a disease that nobody’s ever heard of. Our aim is to work constructively with stakeholders and service delivery organisations to find practical ways of improving the quality of life, treatment and care for those with rare diseases in Northern Ireland.

Where? People live with rare diseases right across NI- in every GP practice and political constituency, in towns and townlands.

When? Members of the partnership are living or working with rare disease every day. The formal launch of NIRDP takes place on 29th February, International Rare Disease Day.

Do you know anyone with a rare disease? Do you want to make sure their needs are considered; that their voice is heard; that they get support; that the family is not isolated?

Contact us:

email info@nirdp.org.uk

telephone: Sarah McCandless at the Patient and Client Council 0800 917 0222