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! 

Great News! NI’s RD Implementation Plan and Genomic Medicine Centre Announced

Minister Simon Hamilton today  announced a £3.3m investment into the creation of an innovative Northern Ireland Genomics Medicine Centre (NIGMC); and formally launched the Northern Ireland Rare Disease Implementation Plan: wonderful news for patients, carers, and clinicians living and working with rare disease!
Minister Hamilton said:
“The Plan embodies my commitment to implement the UK Rare Diseases Strategy in Northern Ireland. It provides a holistic approach to caring for people with a rare disease and to maximise the available resources for research, innovation and collaboration across the UK to benefit the entire rare disease community. The Plan also provides the opportunity to work with the Republic of Ireland to realise the mutual benefits of cross ­border collaboration on rare diseases.”

For everyone living and working with rare disease, this  commitment by the Minister brings hope, and an opportunity to participate in building a better future for all families living with a rare disease. It’s a superb new resource for the clinicians working to give their patients a diagnosis and improve understanding of their conditions. It gives a clear framework and impetus for work on  creating new pathways for treatment and management.

We’ve worked together (patients, families, elected reps, clinicians, managers, officials) to get the UK Strategy; the NI Plan; and the Genomic Medicine Centre.  We will keep working together, to reap the full benefits and provide better opportunities for all our young people and families into the future.

NIRDP on the radio!

Fionnuala and Kerrie, two of NIRDP’s Members, were on Radio Q 100.5 South East this morning, talking to Tom Kelly about rare diseases and about the need for better information and support. We are reaching out to people in the Newry, Mourne and South Down area- the new Forum will be meeting in September, so spread the word, and get in touch now at info@nirdp.org.uk for details.. Thank you, Q Radio, http://www.qradionetwork.com/q-south-east/ and well done, Fionnuala and Kerrie!

NIRDP’s South Down Group

First meeting 7 pm, Thursday 2 July, in the Mourne Country Hotel

Aim: Our aim in establishing this group is to provide support to people with rare diseases, their families and their carers, and to plan activities of interest to both adults and children.

We know that many people living or working with rare disease in the South Down area currently have limited access to support, including information. We include people with the condition(s), their parents, spouses, siblings, friends and other family members, as well as health care professionals who are able to share and learn with us.

Many are very isolated, and feel very alone, living with conditions such as Ehlers-Danlos or Hypermobility Syndrome, Vasculits, Behcet’s Syndrome, Huntington’s Disease, or PSP (Progressive Supra Nuclear Palsy).

Anyone affected by or working with a rare disease is very welcome to attend the meeting on Thursday 2 July, at 7pm in the Mourne Country Hotel

We want to reach out to as many as possible, to see how together we can make life better, by improving access to information, and by identifying and advocating for needed improvements to services for people from South Down.

If you would like to come, please email events@nirdp.org.uk;

Implementation Plan Consultation: Open Meetings

The Open Meetings on the Draft Rare Disease Implementation Plan are ongoing:

6 January 2015: Lecture Theatre, Level 2, South West Acute Hospital, 124 Irvinestown Road, Enniskillen Co Fermanagh, BT74 6DN, 3.30pm to 5.30 pm

7 January 2015: Mourne Country Hotel, 52 Belfast Road, Newry, Co Down BT34 1TR, 7pm to 9 pm

8 January 2015: Conference Room, Portadown Health and Social Services Centre, Tavanagh Avenue, Portadown, BT62 3BU, 2pm to 4pm

12 January 2015: Whinstone Suite, Antrim Civic Centre, 50 Stiles Way, Antrim, BT41 2UB, 1pm to 4 pm

13 January 2015: Lecture Theatre, Block A, Royal Victoria Hospital, Grosvenor Road, Belfast, BT12 6BA, 2pm to 5pm PLEASE NOTE: NEW TIME!!

This is your chance:

  • to listen to what is in the Plan; ( http://www.dhsspsni.gov.uk/showconsultations?txtid=74325 )
  •  to have your say, about what matters to you- whether it’s in relation to a health or social care aspect of living or working with a rare disease, or how having a rare condition impacts on education, transport, work, or housing.

Whether you are a patient, a carer, a member of Health and Social Care staff, or anyone whose work involves tackling the challenges of rare disease, this is your opportunity to shape the future; and to make a difference.

Please register through eventbrite,  http://nirdp.eventbrite.co.uk-  so we know numbers/needs for catering; and so that we can make sure there is enough reserved parking for disabled access etc.   But if you don’t register, you will still be very welcome!

Northern Ireland Statement of Intent Published!

DHSSPSNI have today published the Northern Ireland Statement of Intent, setting out how work to implement the 51 commitments contained in the UK Rare Disease Strategy will be taken forward in Northern Ireland.

The Statement of Intent establishes a Northern Ireland Rare Disease Stakeholder Group which will steer the development of the Northern Ireland Rare Disease Implementation Plan, to be published for consultation this summer.

Read the Statement of Intent, see the 51 Commitments, and see who is involved in the Stakeholder Group here:

http://www.dhsspsni.gov.uk/statement-of-intent-rare-diseases

This is a welcome step forward in the long process of making a real difference for all those living with with rare disease in Northern Ireland.  We are looking forward to the draft Implementation Plan; and we will be making sure your views are gathered and represented in developing the final Plan.

Keep in touch through this website; and make your voice heard, by sending your views to: info@nirdp.org.uk

NIHRC: National Inquiry into Emergency Care

The Northern Ireland Human Rights Commission (NIHRC) has launched a National Inquiry into Emergency Care.

The Commission wants to hear from those who have recent experience of Emergency Care, including from patients, carers, and members of staff.  There is a confidential freephone, open from 10 am to 3 pm Monday to Friday, for the next three weeks; or you can complete an online Questionnaire.

The Commission will also be holding Public Hearings in the autumn, across Northern Ireland, to go into more depth on the emerging issues; and will be visiting A & E Departments.

This is a chance to have your say on your experience of Emergency Care, in a confidential, inquisitorial manner, and to help build recommendations for improvement: go to http://www.nihrc.org/inquiry to see full details!

SURVEY DEADLINE EXTENDED

Good News!  Our original end March deadline for responses to the “Living Every Day with Rare Disease” Survey has been extended: so we now have some more time to get our voice heard.

If you haven’t done so already, go to the Survey (see the Living Every Day with Rare Disease tab, on the bar above) and complete the survey; or e mail info@nirdp.org.uk and we will send out paper copies, or arrange for someone to phone you to complete it .

And please pass the word around; get Support Group Members, carers, professionals to complete the Survey too. We need as many responses as we can, to demonstrate that Rare Diseases matter to a lot of people, and to show the impact that they have on people’s lives…

UK Rare Disease Strategy

“JOINING TOGETHER TO MAKE LIFE BETTER FOR THOSE WITH A RARE DISEASE”

NIRDP WELCOMES UK RARE DISEASE STRATEGY

The Northern Ireland Rare Disease Partnership welcomes the UK’s Rare Disease Strategy, and the commitment it gives to ensuring that no one gets left behind just because they have a rare disease.

How rare diseases, like Muscular Dystrophy, Huntington’s Disease, or Spina Bifida, are diagnosed, treated and managed, so that those affected can live their lives to the fullest possible extent, is important for all of us. Failures in the system lead to wasted resources and needless suffering.

The UK Rare Disease Strategy was developed with the involvement of Patient Groups, Clinicians, academics, and others: we in the Northern Ireland Rare Disease Partnership had a voice in the process. This approach is a step forward in empowering patients and families.

The Strategy provides that that the Northern Ireland Implementation Plan should set out tangible and achievable steps towards:

  • Empowering those affected by rare diseases
  • Identifying and preventing rare diseases
  • Improved diagnosis and prevention of rare diseases
  • Better co ordination of care; and
  • Improved research opportunities and translation of research into practical treatments.

We look forward to working with the DHSSPSNI and Health Authorities, and with colleagues across the UK, Ireland and further afield, to develop the Northern Ireland Implementation Plan, and to make it a reality.

The UK Rare Disease Strategy, signed by all 4 UK Health Ministers, was published on 22 November 2013. A copy of the Government Press Release is available on the Department of Health website

Minister Poots’ Statement will be available on DHSSPSNI’s website

Annual General Meeting!

It is hard to believe, but we have been up and running as a company for 18 months, making it time for our first

Annual General Meeting,

11 September in the Ulster Hall, Belfast, from 11.00 to 11.30am

The key items of business are:

• The appointment of the Directors

A Resolution to amend our Articles to increase the number of Directors we can have from 14 to 20. This increase will allow us to build the capacity and increase the skill sets amongst our Directors and given the pace of change and all the work there is ahead this is a very necessary change.

The formal “Business” of the AGM will be followed by a normal Partnership Meeting – time to discuss what is going on, exchange views and experiences, and catch up with all that is happening, across Northern Ireland and further afield, on things which impact on all those living and working with rare diseases.

There is a very long list of interesting and important things, including for example:

• The forthcoming UK Rare Disease Plan: NIRDP are on the UK Stakeholder Group, and participating in developing that Plan
• The Northern Ireland Rare Disease Implementation Plan: The DHSSPSNI have set up a Northern Ireland Stakeholder Group, and planning will be starting in earnest very soon. We are members, and need to make sure the Implementation Plan makes a difference, in the home, in the schools, at the clinic…
• What’s happening on Transforming Your Care? Are we properly linked in to the process at the local levels?
• Planning for next year’s Rare Disease Day event in Riddell Hall, Belfast on 28 February 2014: this is going to be a real opportunity to advocate and educate about Rare Disease issues, so put the date in your diary now, and bring your ideas – we want this to be a fun and memorable day
• Planning for our Rare Disease Awareness Week, starting with a Long Gallery event on 13 January 2014. Another diary date! Who are your MLA’s; who your local papers/media contacts are; please share any ideas on how to get them involved and interested.

We have done an amazing amount in the last 2 years, thanks to the energy, commitment, knowledge, and mutual support of all the members, but we have a lot more to do! There is a wonderful opportunity over the next year to build on the foundations we have been able to lay. To do this, we need to keep up the pace- and that means using all the knowledge, skills, and experience of each and every one of our members to the best possible effect.

So please come to the AGM and Partnership Meeting; hear what is happening; say what you think; and let’s make sure that at the 2014 AGM we have a lot ofprogress to report!