The Centre for Public Health at QUB (@CPH_QUB) are researching the experience of using complementary and alternative medicines for rare diseases in Northern Ireland. As part of this work, NIRDP and the Centre for Public Health are hosting a discussion workshop for people with experience of using complementary and alternative medicines, or who are considering this approach, to share experiences and gather information.
The Workshop is in Lecture Room 1 at Riddel Hall, from 10.30 to 12.30 on Monday 25 March 2019: there will be tea/coffee/water/juice and traybakes; places are limited to 25, so please register and share your experience!
Before Christmas, NIRDP wrote to the Secretary of State for Northern Ireland asking for reassurance that access to medicines, especially those specialist drugs needed for rare diseases, would be maintained in the event of a No Deal Brexit.
Her reply is below:
Response – SoS – Ms Walker – MC-19-83
Also, the following Written Statement has been issued by the UK Minister of State for Health, Stephen Hammond: https://www.parliament.uk/business/publications/written-questions-answers-statements/written-statement/Commons/2019-02-25/HCWS1358/
Essentially, these confirm that Northern Ireland has been included in the UK wide contingency plans; and access to medicines and medical supplies (including for clinical trials) should be secure, safeguarded by the provision of:
- additional stockpiles in case of delays to ferry crossings;
- air transport for time critical supplies;
- prioritisation of medical supplies in the ferry spaces which government has purchased.
If anyone has a particular worry, contact us on firstname.lastname@example.org, and we will follow up.
Register NOW for our annual general meeting and Autumn Meeting, 3-5 pm, 25 Oct, at Grosvenor Hall, BCM, Glengall St.
Our annual general meeting includes formal updates on our report and accounts presented by directors and the appointment of directors to fill current vacancies.
Then this formal business will be followed by updates from
- our NIRDP Project Officers, Tanya and Ian;
- QUB?Centre for Public Health;
- the Neurological Care Coordinators, and
- the Ten Thousand More Voices programme.
There will also be tea/coffee and biscuits (and cake!)
Come along to hear about what is happening, and to make your voice heard on future priorities for NIRDP.
Register now- by email to us at email@example.com or via eventbrite: https://www.eventbrite.co.uk/e/nirdp-annual-general-meeting-tickets-51068616607
The Foyle and NW forum (NIRDP) meeting took place on Saturday 19th May and it was great to welcome old and new faces to the group. There was lively discussion about issues affecting those with rare diseases with particular reference to:
- Support for carers available via the health and social care trusts
- Importance of raising the profile of rare disease by telling our stories – thanks to Anita McDowell for allowing her story to be shared via the Derry Journal. Attendees were encouraged to utilise 10,000 more voices initiative to share their patient experience
- Courses offered by recovery colleges and how to influence their prospectus
- Challenges associated with travelling outside NI for medical appointments
- Challenges for children and parents accessing appropriate educational support with rare conditions. Signposting to SENAC is advised but need to be aware the service is in high demand and early intervention is important .
- Education Authorities are working under tight budgetary constraints and access to Statutory Assessment and the Statementing process and subsequent provision of support can be delayed.
We look forward to hearing more about the potential for an EDS and associated conditions conference that is being proposed by EDS UK with support from NIRDP.
The group will continue to meet quarterly, next meeting will be planned for September with details to follow.
Rare Disease Day takes place on the last day of February each year (29th February itself being a rare day). Rare Disease Day is about raising awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
We know that it’s not that rare to have a rare disease, but that’s not how it feels when you and your family experience that odd illness that nobody knows much, if anything, about. We know how important it is to come together and share experiences, to learn from each other and to amplify each other’s voices. We know the importance of working together to make change happen.
Today, NIRDP are holding events, hosted by the Mayor of Ards and North Down Council, and the Mayor of Derry City and Strabane Council. Many thanks to them for their help and hospitality. On Monday we host the 4th Joint North South Conference on Rare Disease at Riddel Hall, Belfast. We are all busy, and delighted to be so.
We hope you can join us- at an event, on Facebook or Twitter. Take some time to acknowledge how awesome you are, and the progress we’re making together. And, if you can, grab a slice of cake to celebrate!!
Rare Disease Day is coming ! This year, we are looking forward to welcoming you to the fourth Joint North South Rare Disease Day event, held with our friends the Irish Rare Disease Taskforce, on 5 March 2018 in the splendid surroundings of QUB’s Riddel Hall, Stranmillis Road, Belfast.
The Theme for this year’s Rare Disease Day is Research; and the Joint North South Conference will focus on:
- Rare Disease and the UK and R.o.I Strategies
- Expert Patients: Engaging with Research: EUPATI UK and RoI
- Patients and Researchers: examples of good practice
- Beyond the 2016 to 2020 Strategies: Next Steps
We are still working on the Programme, so watch out for updates!
Register now (FREE) here
It’s time for our Annual General Meeting and partnership meeting- join us on 5 December at the Pavilion, Stormont, Belfast, BT4 3TA.
We’ll be presenting our annual report and accounts for 2016-2017, updating everyone on what we’ve been up to since, discussing the results of the survey on communications, and planning for the way ahead. And, of course, formally launching the Stronger Together project with the Big Lottery Fund!
Research teams from QUB will be helping us to consider educational priorities, and a patient passport.
We’ll start with scones and end with lunch. Will we get a cake?
We’d love you to join us- just register below so we count you in.
We had a meeting of our Foyle group on Monday 6 November & were delighted to mark the start of the Stronger Together project in the area.
Our Project Oficer is Tanya Boggs, and she’ll be working across NHSCT and WHSCT to support people living or working with rare disease. She comes to us with many years nursing experience at Great Ormond Street Hospital. Tanya can be contacted at firstname.lastname@example.org 07927 170 138 and will be working 18 hours per week.
We welcomed Helen, Jane and Ashleen from QUB, all of whom are working in the area of rare disease- education, communication and genetics.
Gina updated us on the work of the Our Children’s Voice group- we’re looking at how NIRDP and OCV can work together to support families in border areas.
Carol reported back from one of the WHSCT meetings on savings/ cuts. The financial shortfall is less significant now, but there’s always negotiations to be had. We encourage members to get their voices heard and participate in discussions.
Creea Convery from MND Association raised the issue of challenging referrals from GPs to specialists- either not soon enough, or with inadequate information for the neurologists to triage appropriately.
Neurological Care Co-ordinator, Tracey Magowan, talked about the role of care advisers based at neurology clinics. They support patients and families to navigate the systems, sign post, and provide localised information and fact sheets. Another care adviser is being recruited to cover clinics at Altnagelvin.
We had another chat about the needs of patients with EDS. NHS England are working on a care pathway. NIRDP are interested in developing a piece of work looking at the patient journey. This may form part of the peer support work during the Stronger Together project. Watch this space!!
We agreed to gather again for a pre Christmas cuppa and chat at the City Hotel on 14 Dec, 11am.
Sandra Campbell, Tanya Boggs, and Fiona McLaughlin: Getting the Stronger Together Project off to a great start in Derry!
Today marks a great step forward for NIRDP and for all those affected by rare diseases in Northern Ireland, as Tanya Boggs, our first “Stronger Together” Project Officer, starts work!
Fiona McLaughlin (NIRDP Chair) and Sandra Campbell (NIRDP Director and Foyle and NorthWest Rare Disease Forum Lead) welcomed Tanya; and started the process of building our “Stronger Together” Project, funded by a grant from the Big Lottery.
Our NIRDP vision is that no one is disadvantaged because of the rarity of their health condition. Stronger Together is a 2 year pilot project which will enable people who live or work with rare disease to connect, advocate, educate and innovate in partnership with each other and others (e.g. Department of Health; other Departments; other charities). The project will provide peer support, volunteering, networking and advice.
It aims to make the ideas put forward in the Communications Workshops earlier this year, for improving accessibility to information and support into a reality; and so to make a positive difference to the way people affected by rare diseases live.
Come along to the Foyle and North West Rare Disease Forum meeting in the City Hotel, Derry on Monday 6 November from 11am to 1 pm to meet Tanya and others, and to celebrate this first step on the road!