Making our voices heard

We know that if something isn’t counted, it doesn’t count… And we all want to use our experiences and our knowledge to make positive change happen in our health and social care system.  So we are working to make sure that the voices of rare disease patients and families – and the voices of their carers, whether that is family, friends, clinicians, social care professionals – are gathered, and reported so that those voices count.

We are running our own short survey at the moment – and the response has been great! Spread the word and get more responses in so we can have a report ready to publish in the autumn.

TAKE THE SURVEY HERE

In addition, we are working with the Public Health Agency’s 10,000 Voices Programme to make sure that their surveys can capture and report the experiences of rare disease patients and families.

There are two surveys currently running:

  • Out of hours GP and emergency care; and
  • the experience of contact with the health and social care system.

Both can be accessed through the 10,000 Voices website: www.10000voices.info

It would be good if as many people as possible can complete these surveys: the 10,000 Voices Team have facilitators who can help; and are keen to work with us to ensure that the experiences of rare disease patients and families are heard.

Posted in Consultations | Tagged | Leave a comment

Good News on access to drugs for rare conditions: Thank you, Minister!

Health Minister Michelle O’Neill today announced that eligible patients in the north of Ireland will receive innovative new drugs for the treatment of very rare conditions. The Minister has confirmed that drugs evaluated under the Highly Specialised Technology Programme of the National Institute for Health and Care Excellence (NICE), will be made available to patients with very rare conditions including atypical Haemolytic Uraemic Syndrome, mucopolysaccharidosis type IVa and Duchenne muscular dystrophy caused by a nonsense mutation.

The Minister said: “My Department is working with the HSC on a range of initiatives to bring more efficient and effective processes right across the system in prescribing, workforce planning and service delivery. I will continue to make decisions based on clinical advice and will work with my colleagues in the Executive to make sure that health and wellbeing remains a priority for all.
There are many challenges facing us in health and social care. From today, access to the most innovative medicines for the rarest conditions is not a challenge for patients in the north of Ireland.”

This is very welcome news, which will transform lives.
We will continue to work closely with the Department, and with the HSC to ensure that those living with rare diseases are not disadvantaged simply because of the rarity of their condition; and to support changes to make the system more efficient and effective

Posted in Rare Disease Implementation Plan, Updates | Tagged , , , , , | Leave a comment

You couldn’t make it up…

Many of us have had those moments. The moments when we’ve been baffled/ bewildered/ outraged by our dealings with healthcare professionals:
e.g. A&E telling you your case is too complicated and to talk to your GP
e.g. your GP telling you to register at another practice because your condition is too complex
e.g. your ‘specialist’ telling you they don’t believe in your condition.

We’d like to collate these, and share them, to help make a difference.
What’s your moment?

Posted in Updates | 2 Comments

Rare Disease Day 2016 Patient Voice and Empowerment

Rare Disease Day 29 February is getting close!  Here are the full programmes for the Conference in Riddel Hall, and for the Reception in the Long Gallery at Stormont; follow the links in the post below to register NOW

The Conference is a unique opportunity to hear from Dr Michael McBride ,our Chief Medical Officer and from a range of patients, carers, and professionals about what is already happening; and to engage in developing what more could be done to make a difference to the lives of those affected by rare disease.

INTERNATIONAL RARE DISEASE DAY CONFERENCE: PATIENT VOICE AND EMPOWERMENT
10.00 to 10.30 Registration
10.30 to 10.35: Welcome – Christine Collins, Chair, NIRDP
10.35. to 10.45: Keynote Address: Rare Disease and HSC Transformation- Dr Michael McBride, Chief Medical Officer, Northern Ireland
10.45 to 11.20: Educating: Miriam Martin, SACA; Dr Mairead Corrigan, QUB; Michaela Hollywood, MDUK Trailblazers;
11.20 to 11.55: Advocating: Fiona McLaughlin PSPA NHS IQ Certificated Change Agent;  Noirin O’Neill, EUPATI Fellow; Sandra Campbell, NIRDP Foyle and North West Co ordinator; Carol McCullough, NIRDP Consultations Lead
11.55 to 12.30: Innovation: Alison Wilson, All Ireland Advocacy and Support Officer, MPS Society;Dr Breidge Boyle, UU; Julie Power, Vasculitis Ireland, EUPATI Fellow; Joanne Westwood, N.I. Neurological Care Advice Service
12.30 to 12.45: Round up of Panel Sessions: Reflections
13.00 to 13.45 Lunch: INFORMATION STANDS, INCLUDING RNIB; ACTION FOR HEARInG LOSS; 10K VOICES; AND PATIENT ORGANIZATIONS
13.45 to 14.00: NI Medical Genomic Centre Dr AJ McKnight, QUB
14.00 to 15.15: Seizing the opportunity “POLICY INTO PRACTICE” interactive workshop David Finegan, NIRDP
15.15 TO 15.30 : CONCLUSIONS AND CLOSE

The Long Gallery Reception is a chance to hear from Alastair Kent OBE, the Chair of the UK Rare Disease Forum, about the role of patients in driving and developing change; and to hear from Minister Simon Hamilton about his vision of the way ahead.

NIRDP International Rare Disease Day Reception at Stormont

17.00 to 17.30: Registration
17.30.to 17.45: Welcome and introduction: Kieran McCarthy, MLA; Dr Vivienne  McConnell, Clinical Lead for Medical Genetics

17.45 to 18.00: Alastair Kent OBE: The role of empowered patients in oversight

18.00 to 18.10: Minister Simon Hamilton MLA: Working together to provide high quality care for people with rare diseases
18.10-18.15: Thanks and Close: Christine Collins, Chair NIRDP
18.15 to 19.00: Photo Opportunities and Networking: Refreshments

See the post below to register! 

Posted in Events, Rare Disease Implementation Plan, Updates | Tagged , , , , , , | Leave a comment

International Rare Disease Day 2016: Patient Voice & Empowerment

This year’s International Rare Disease Day Theme is “Patient Voice”; and we are making our contribution through three events:

First, on Wednesday 17th February, at 12.30 to 2pm, the launch of the Foyle and North West Rare Disease Forum, which will provide support and advocacy for people with rare diseases in the Northwest.  This will be held in the Dennis Desmond Boardroom, MDEC Building, Altnagelvin Hospital, Glenshane Road, Londonderry, BT47 6SB. 

Dr Fiona Stewart, MBE, Consultant in Medical Genetics with the Northern Ireland Regional Genetics Service, who runs the Genetics clinic in Altnagelvin Hospital, will give the introduction; and Sandra Campbell, who is the Forum Co ordinator, will explain how we hope the Forum will help support families, and engage positively in reshaping services for those with rare conditions.

As space is limited, please email emma@nirdp.org.uk if you would like to attend, or would like more information.

Second, on Monday 29 February, from 10.00 to 3.30pm, our International Rare Disease Day Conference: Patient Voice and Empowerment.  This is being held in Riddel Hall, 185 Stranmillis Rd, Belfast, Antrim BT9 5EE

The morning sessions will include a presentation from a leading health policy maker on developments in Northern Ireland; and feature panel discussions, on Education, Innovation and Advocacy, led by patients, family members, and patient advocates.

The afternoon session will be an interactive Workshop, “Policy into Practice” to bring forward practicable ideas for speeding up policy implementation following the production of Northern Ireland’s Rare Disease Implementation Plan, and producing tangible wide reaching change, including developing a Virtual Centre of Expertise for Rare Disease for Northern Ireland.

Register here:

Third, again on Monday 29 February, from 5pm – 7pm, Kieran McCarthy MLA is kindly hosting a Reception for NIRDP, in the Long Gallery in Parliament Buildings, Stormont, Belfast, BT4 3XX. This will give our members and MLA’s a welcome opportunity to meet, to discuss rare disease issues, to celebrate the progress that has been made in the past few years, and to look ahead, including a brief report from our Conference on enabling Patients and Families, who are “Experts by Experience” to contribute fully to the transformation process, working in partnership with policy makers and providers.

It is also our opportunity to showcase the publication of the first Report to Ministers from the UK Rare Disease Forum, the body charged by all four UK Health Ministers with monitoring progress on implementation of the UK Rare Disease Strategy.  We are especially fortunate that Forum Chair, Alastair Kent OBE, Chair of RDUK, will attend our Reception, and will speak on the role of the Patient Voice in taking forward work on rare disease.

Register here:

Posted in Events | 1 Comment