Syringomyelia Arnold Chiari Association AGM:Europa Hotel, Belfast 19 October 4pm to 6.30pm

The Syringomyelia Arnold Chiari Association is holding its 29th AGM and Conference on Saturday 19 October in the Rotunda Suite, Europa Hotel, Great Victoria Street, Belfast BT2 7AP from 4pm to 6.30 pm

Dr Pamela Bell, Chair of the Pain Alliance NI, is the Keynote Speaker, on the topic of “Coping with Pain” which is such an important issue for all those living with Syringomyelia and related conditions: see the link below for full details

AGM Notice 2019

Please don’t hesitate to contact the SACA Helpline on 07826 004 008 or e mail info@saca.org.uk for more information and to register!

 

 

 

 

 

 

 

 

Registered with The Charity Commission for NI NIC100528

HM Revenue and Customs No. XT6688

 

Phone: 078 26 004 008 (Helpline)                                                                          E-mail:info@saca.org.uk                            

 

 

29th Annual General Meeting Notice

 

Saturday 19th October 2019 at 4.00 pm – 6.30 pm

Rotunda Suite, Hastings Europa Hotel, Great Victoria St, Belfast BT2 7AP

 

Programme:

 

4.00 pm          Welcome

 

4.05 pm          Dr Pamela Bell, Chair, Pain Alliance NI   on ‘Coping with Pain’

 

4.45pm           Refreshments (Please let us know if you have any special dietary requirements)

 

Time to mingle, chat and renew your Membership Fees

 

5.30pm           Annual General Meeting

 

  1. Annual Report Minutes of 2018 AGM     3. Treasurer’s Report
  2. Election of Officers   50% Fund  6. Any other business

 

 

If you are planning to attend please contact our Helpline on 078 26 004 008

or email us on:  info@saca.org.uk

 

This is a free event and all are welcome. Please bring along a prize for the raffle.

 

Paid up members can avail of the SACA Travel Fund which will also assist members with city centre car parking charges for this event.

 

 

Making Change Together: Recruitment, Training and Support Programme

The Patient and Client Council (PCC) is establishing a training and support programme to enable the citizens of Northern Ireland to take part in the various Work Streams involved in implementation of the “Delivering Together Health and WellBeing 2026”  Strategy.

These Work Streams will include such high profile initiatives as re-shaping the way Stroke Services are delivered, as well as more routine matters, such as establishing dedicated centres (“Elective Care Centres”) for routine surgical procedures, which will help cut waiting lists for these operations.

There is acute time pressure, because the need to reform the Health system is so pressing; so the PCC are taking the first steps to recruit people who would be interested in participating in the Work Streams, and to provide the first step of the induction and training process.

Please see the PCC’s Making Change Together infographic 

 

for more details  If you are interested in taking part,  register your interest with Jessica Murray (e mail: Jessica.murray@hscni.net); and spread the word in your networks.  This initiative will be a great opportunity to get our voice heard, where and when it matters, in building our Health and Social Care system.

We in NIRDP are working in partnership with the PCC to design and develop the training and support programme, bringing our NIRDP Members’ knowledge and experience to the table.  Julie Power, our Director and Secretary and a EUPATI Fellow, and Kerry Moore, our RANK Foundation funded  “Time to Shine” Intern, are working with Jessica Murray in the PCC to assemble and develop the training package. This will start with a basic introduction to the HSC system, but will lead on to modules covering wider issues, including how to engage and advocate most effectively as an “Expert” Patient/Service User/Carer.

 

Complementary and Alternative Medicine (CAMs) Discussion Workshop- Rescheduled!

 

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!

BREXIT and access to medicines

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 info@nirdp.org.uk, and we will follow up.

Complementary & alternative medicine (CAMs)in Rare Diseases: Discussion workshop.

 

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; and ran a Survey to gather information (see the post below)

NIRDP and the Centre for Public Health are now 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 more information.

The Workshop is in Lecture Room 1 at Riddel Hall, from 10.30 to 12.30 on 6 March 2019: there will be tea/coffee/water/juice and tray-bakes! Places are limited to 25, so please register now, and share your experience and questions!

NIRDP “Our Governance Role” Workshop: 7 November 2018, 4pm to 7pm, Grosvenor Hall, 5 Donegall St, Belfast,

As part of our NIRDP “training” work, we are holding  a Workshop for those who are Trustees/Governors/Directors of Charities and voluntary organisations; or who are thinking of taking up the role.

The Workshop will cover:

  • “Our Governance Role”, led by Eileen Mullan of Strictly Boardroom ; and
  • An overview of GDPR, delivered by NICVA

This is a great opportunity to learn more about how Boards work; and what is needed from Board Members to make their organisations work effectively, as well as to learn about how to manage information , under the new GDPR rules.  It will be fun and very informative; and it’s FREE!

Places are limited, so if you would like to come, please email: christine@nirdp.org.uk by Wednesday 31 October

 

Joint North South Rare Disease Conference: 5 March 2018

 

We are busy finalising the Programme for this, the Fourth Joint North South Rare Disease Conference. There are still some details to sort out, but see below  for the latest version.

Programme

09.00 – 10.15               REGISTRATION AND COFFEE

10.15 – 10.30               Welcome  and Introductions

Fiona McLaughlin, Chair NIRDP & Philip Watt, Chair MRCG

10.30 – 10.45              “Nothing about us without us”

Les Allamby, Chief Commissioner, NIHRC

10.45 – 11.30               Rare Disease and the Strategies

Dr Michael McBride, Chief Medical Officer, DoH (NI)

Another Speaker TBC

11.30 – 12.30               Participating in Research

Dr Maurice O’Kane, NI Clinical Research Network

Dr Claire Lundy, Regional Paediatric Neurodisability Service

Another Speaker TBC

12.30 – 13.30               LUNCH

Poster Competition:    “Nothing About Us Without Us” (see below)

Side Event – Northern Ireland Human Rights Commission

13.30 – 14.15               Panel Discussion – BUILDING CAPACITY

Chair – Mary Hinds, PHA

Panellists to include: Derrick Mitchell, IPPOSI; Gemma McKillen, EUPATI;  Julie Power, VIA,

 

14.15 – 15.15               WHAT DOES SUCCESS LOOK LIKE?

100k Genomes Programme – Dr AJ McKnight

The 22 Q Journey: Anne Lawlor, Chairperson 22q11 Ireland         Support Group; Dr Tabib Dabir, BHSCT; Gillian Cassidy, 22Q Support Group Dr Mary Dallas, PHA

22 Q Video

15.15 – 15.30               COFFEE BREAK

15.30 – 16.15               Panel Discussion – BEYOND THE STRATEGIES: NEXT STEPS

Chair – Professor Ian Young

Dr Avril Kennan, MRCG

Philip Watt, MRCG

Anne Lawlor, Chairperson 22q11 Ireland Support Group

2 Members TBC

16.15 – 16.30               PRESENTATION OF POSTER COMPETION PRIZES & NIRDP AWARDS

Fiona McLaughlin, Philip Watt & Professor Ian Young

16.30                           CLOSE – Philip Watt

Register NOW to be sure of your place!

Note:  There is a Poster Competition: the Topic,  is “Nothing about us without us” tying in with the Rare Disease Day Theme of  “Research: Patients are not only subjects but also proactive actors in research”https://www.rarediseaseday.org/page/news/the-theme-for-rare-disease-day-2018-is

The Competition (with prizes!)  aims to showcase examples of research, academic, clinical, social where patients and families were engaged and  involved; what difference it made; and what is happening now and into the future.  So if you or your organisation have worked with rare disease patients, families and carers to do any research, surveys, etc which  are being used or could be used to influence and shape treatments,  care and services for people with rare disease, send a short abstract to rarediseaseday2018@health-ni.gov.uk ,  with POSTER COMPETITION in the Subject line, by Friday 23 February.  Posters must be A0 size Portrait, and brought to Riddell Hall on the day by 9.00am on 5 March 2018 for display.

 

Rare Disease Day 2018: Joint North South Conference, Riddel Hall, 5 March

 

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

 


 

 

 

 

Stronger Together Project starts work!

 

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!

Who knows what in rare disease? Engagement, information and communication

As part of the work on the NI Rare Disease Plan, NIRDP has been running a series of Workshops across Northern Ireland, and an Online Survey, to identify information needs in relation to rare disease issues; what information is currently available and what information people would like to help them live or work with rare conditions.

On 7 June, a workshop chaired by Professor Ian Young, the Chief Scientific Officer and Chair of the NI Rare Disease Implementation Group,  heard about progress in genetics, presented by Dr Tabib Dabir, Clinical Lead, NI Regional Medical Genetics Service (and member of NIRDP’s Board)  and in metabolics, presented by Dr Clodagh Loughrey, Consultant Chemical Pathologist and Clinical Director Laboratories, BHSCT.

It’s clear from these presentations that the pathway to diagnosis, and the options available for management and treatment of complex and rare conditions, will soon alter dramatically.  Indeed some changes are already happening, with an individual’s genetic make up helping to determine the best course of treatment in some cases. It’s essential that we think through how to make best use of these advances!

Participants then considered the emerging findings from the Workshops and the Survey, presented by Dr Jane Miller, Research Fellow at the NI Genomic Medicine Centre  and NIRDP Chair Fiona McLaughlin, before working in five groups to validate and  consider how progress could be made on the key areas identified in the Workshops and in the Survey.

Suggestions for improving information and communications

  • Develop care pathways / flow charts / support plans / signposting.
  • Have one ‘go to person’ who co-ordinates care and information sharing between those involved in care:  “Care navigators” to support patients, families, and clinicians.
  • Develop a hub / portal for accessing information for medics, other professionals and people with a rare condition/disease.
  • Develop referral routes to support groups, or to other people with the same condition, from the point of diagnosis.
  • Look and take learning from other models e.g. Cancer Care; Maternity Care (where mothers hold information in The Red Book) Downs Syndrome etc.

There were many valuable suggestions, and much learning across the whole group- for example, about the proposed introduction of the SNOMED coding system across both primary and secondary care; and planned technological developments within Health & Social Care.  Also, locally based training for patients, along the lines of the EUPATI modules some of our members are already familiar with, is hopefully to become available.

We are still processing all the information that emerged; and planning follow up through a virtual working group to take forward the ideas in more detail.

Further details to follow- watch this space!

And if you haven’t already done so, please complete the Survey and get your family and health care colleagues to do so too …