News

Best wishes from the NIRDP to Dr Heather McCluggage on her retirement

NIRDP wish Dr Heather McCluggage a very happy retirement, she will be sorely missed by all who had the privilege of knowing her over her years working in paediatric palliative care. She was a valuable resource and support to all of us within NIRDP, particularly in the North West.

As a very fitting tribute to all of the fantastic work that Dr Heather McCluggage has achieved over the years the Derry Journal has written a beautiful piece where they say that she “has been described as a ‘guardian angel’ for children with life-threatening or life-limiting illnesses and their families.”

To read more on this feature click on the link to The Derry Journal here.

 

EURORDIS Rare Disease & Rare Cancers Survey

 

EURORDIS, through its Rare Barometer programme, has launched a new survey on rare diseases/ rare cancers patients’ experience of treatment. The purpose is to highlight unmet treatment needs.

The results of the survey can be very useful for the advocacy work that EURORDIS do in the field of rare cancers and would complement other survey’s results you may have completed for the organisation before.

EURORDIS have a team of professional researchers, specialised in surveys, who shall be able to conduct a thorough analysis of the responses received.

The survey is available in 23 languages and is intended for patients, their family members and carers. All responses are anonymous and will be kept in secure storage only accessible to their research team.

The survey shall take about 10 minutes to complete: http://bit.ly/eurordis-survey

EURORDIS would like to reach out to all who are affected and ask them to please answer this survey and disseminate it widely to anyone else that you know who may also be affected.

The more results that the EURORDIS team are able to gather the more they shall be able to sort results by:

–       Age group (paediatric cancers vs rare cancers in adult)

–       Countries (or maybe just Western Europe vs Eastern Europe)

–       Type of cancers (or maybe just haematological malignancies vs rare solid tumours)

Please also note that the research team shall be able to come up with tailored infographics, based on our request and needs.

The survey is open until 30 April.

EURORDIS Website: https://www.eurordis.org/

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.

Join us in raising Rare Disease  Awareness: Host a RariTea event!

Raising awareness of Rare Diseases is crucial to every aspect of our work to improve services and the quality of life.  So in Spring 2019 we are launching our first Northern Ireland wide awareness-raising Campaign, aiming to make an impression in every town and townland.

Our approach is based on the popular “coffee morning” model, but our focus is on our favourite tipple, Tea!

We are partnering with local tea company, Infuse Artisan Tea, a Coleraine based business, who will be helping to lead the way.

The RariTea events will coincide with the worldwide events marking International Rare Disease Day on 28 February, so will focus on the period from mid-February to mid-March (21st February – 7th March)

To get involved, just get together – a few individuals, an organisation, a business, a sports team – and hold a RariTea event. It can be a posh Afternoon Tea; or a mug of Builder’s Brew…just have some tea, and take a picture (or two) for Twitter, Instagram etc tagging @NI_RDP (twitter) or @NIRDPNews on Facebook, and use the hashtag  #RariTea

Register your interest via this link; show that we are #StrongerTogether, and help make a difference in 2019!

All money raised will go directly towards raising funds for a full-time Northern Ireland Coordinator who can help families and patients affected by rare conditions access the help and support that they often fail to receive.

Show your support this February and help make a difference to the lives of those affected by rare and hard to diagnose conditions.

To find out more contact us via email at info@nirdp.org.uk 

Ards and North Down Rare Disease Forum: Forthcoming Events!

 

Thanks to generous support from Ards and North Down Council, we have been able to arrange two events over coming months for all those living or working with a rare disease in the Ards and North Down Borough!

First, on 9 December 2019 in the Ards Blair Mayne Wellbeing and Leisure Complex , from 10.00 am to 2 pm, we are holding the inaugural meeting of the Ards and North Down Rare Disease Forum: see here to register .  This is a great chance to get together, and to find out more about what is available locally.

Then, on 16 January 2020, in Bangor Library, we are holding an event focussed on those who are caring for someone with a rare condition,  in partnership with the QUB Rare Disease Team, who are gathering evidence about how support for rare disease carers could be improved.

 

Please Save these Dates- and Register to come along: there will be good company and cake,  information and support; and a chance to influence and shape change.

 

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.

 

 

Role of Sessional Band 5 Service User/Carer Consultants in the Western Health and Social Care Trust.

Job opportunity:

Role of Sessional Band 5 Service User/Carer Consultants in the Western Health and Social Care Trust. These are pilot roles funded through Transformation monies until March 2020 and are an exciting opportunity for any active service users or carers to become involved in the development of Trust services and remunerated at a Band 5 rate for their time.

Please see below link to the role on HSCRecruit. Applications for the role can be made online through the HSCRecruit portal.

 

https://jobs.hscni.net/Job/6588/whsctservice-user-carer-consultant-sessional-band-5–temporary

 

The closing date for the posts is 1st October at 3:30pm.

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.

 

Improving Neurology Care in NI

 

 

 

 

 

Improving Neurology Care in NI

Engagement Workshop – 2ndJuly 2019

 

The Department of Health and the Health and Social Care Board are jointly hosting a workshop as part of the Department’s Regional Review of Neurology Services.

 

The Review is looking at how neurology services can be improved and become more effective over the next 10-15 years, and we want your views to play a central role.

 

The workshop will take place on Tuesday 2ndJuly 2019, from 11:00am to 3:00pm at

Grosvenor Hall,

Belfast Central Mission (BCM)

Grosvenor House

5 Glengall St.

Belfast

BT12 5AD

 

The morning session will focus on providing information on the Review and seeking your thoughts on the main areas you feel should be improved. This will help us develop a vision for neurology services.

 

The afternoon session will focus on how we can ensure services are better coordinated and patients can access help and support in a simple and accessible way.

 

The Department of Health is committed to a coproduction approach to the Regional Review. We hope that you will considering joining us to share your views. If you would like to participate, please contact us at hsrd@health-ni.gov.ukor phone 028 9076 5643.

 

This is the start of a conversation and there will be further opportunities to share your views throughout the Review process.

THE BRITISH PORPHYIA ASSOCIATION IRELAND CONFERENCE: DUBLIN – SUNDAY 23 JUNE 2019

 

IRELAND CONFERENCE: DUBLIN – SUNDAY 23 JUNE 2019

The British Porphyria Association are delighted to announce their very first conference in Ireland. This will be in Dublin at the Ashling Hotel on Sunday 23 June 2019 from 1200 to 1700.
The invitation is open to all porphyria patients and their support networks, and it is completely free to attend.

The programme is still being finalised but there will be doctor talks with the support of various porphyria specialists from across the UK and Ireland, as well as patient talks, updates on research and plenty of opportunities to speak with other porphyria patients and their families/friends.
If you would be interested in registering for this event contact sue.burrell@porphyria.org.uk ASAP
#PorphyriaConferenceIreland

For more details log onto www.porphyria.org.uk
Or call 0300 30 200 30

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!