Implementation Plan Tweet Chat: 9 January 2015

Another chance to have your say… We are hosting a Tweet Chat on 9 January from 7pm to 8pm: keep the time slot free and watch out for more details…

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Open Meeting Registrations

To register for the upcoming open meetings, go to:

http://nirdp.eventbrite.co.uk/

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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, 4pm to 7pm

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!

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Let’s talk about the plan

NIRDP are pleased to announce that we will be coordinating a series of open meetings across the region for consideration of the draft NI Rare Disease implementation plan.

The meetings are open to all, and are being held in association with senior clinicians, experienced in a range of rare diseases. They are an opportunity to meet others interested in rare disease, and to share experiences and thoughts on the development of services until 2020.

What matters to you?

 

DATE PLACE TIME SENIOR CLINICIAN  VENUE  
17 DEC 2014 GRANSHA LONDONDERRY 2PM-4PM Dr Stewart BOARD ROOM, GRANSHA
6 JAN 2015 SWAH, ENNISKILLEN 2PM-4PM Dr McConnell TBC
7 JAN 2015 NEWRY TBC TBC TBC  
8 JAN 2015 CRAIGAVON Area Hospital 2PM-4PM Dr McConnell Dr Magee Conference Room, Portadown Care and Treatment Centre
12 JAN 2015 ANTRIM 2pm to 4pm Dr Stewart Whinstone Suite, Antrim Civic Forum
13 JAN 2015 BELFAST 4PM-7PM Dr Deidre Donnelly, Dr Shane McKee, Dr Tabib Dabir SCIENCE BLOCK A, RVH

 

The Department wants “to ensure that feedback from service users and carers underpins the identification of the commissioning priorities for rare diseases.” These open meetings are one way of being involved in that process.

We will be putting each event up on Eventbrite- so that you can tell us if you are planning to come, and we can get the tea/coffee and biscuit orders right (or anything else you need to make the event work for you!)

We will also be producing a key points guide to the draft Plan- so you can focus more easily on what matters to you…so watch the website…

You can also email ImpPlan@nirdp.org.uk  chat to us on Facebook or twitter and/or respond to the DHSSPS directly at RDIP@dhsspni.gov.uk

We are looking  forward to seeing you!

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When NIRDP met NIHRC

In early October, a small team from NIRDP presented to the Human Rights inquiry into emergency care. Our presentation can be seen on this link http://www.nihrc.org/inquiry/public-hearings/public-hearing-day-11-belfast

Thanks to all for letting us share your experiences and words of wisdom.

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Twitter chat on #raredisease

On 5 November the regular #irishmed twitter chat (Wed, 10pm) hosted a discussion on rare disease. The regular host is @drlfarrell, a GP and writer, and he asked our own @speccymcspec to co-host. Questions included: how common are rare diseases?; which is more challenging, diagnosis or treatment?; who/where are the experts?; what support is available? There were over 100 individual tweeters from around the world participating and nearly 1000 tweets sent. It was the busiest hour on twitter ever experienced by many of us. So great was the interest it was difficult to keep up. Thankfully, a transcript is available, and is worth checking out.

the #irishmed connections

the #irishmed connections

A flavour of what was said is below- from my own notes: check the transcript for full record.

On diagnosis

– uncommon presentations of common conditions are more common than common presentations of uncommon conditions

– late diagnosis can be disastrous

– disparate symptoms with no dot joining

On management

– hard to do with no experience

– management eased by internet and support groups

– may not need orphan drugs, but better management

– centres of excellence safer than sub optimal local management

– best healthcare professionals realise they need bigger teams

On expertise:

– if you’re a patient with a dangerous rare disease and you’re not dead yet, you’re an expert

– lots of experts, patients, families, doctors, nurses, phas; communication is key

– patients are creative about finding support -‘I don’t know’ leads to progress, new treatments, new ways of thinking

– Dr Google

Key actions noted:

– increase awareness

– support GPs

– support clinical teams

– improve access to genetic testing

– need for validated/ curated sources of information

– guidelines for diagnosis and treatment in line with international expertise

– registries

– working together, importance of collaboration & communication

– research

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Genetics and Popular Science

The School of Biological Sciences cordially invites you to attend the RAE Armstrong Public Lecture Series 2014 which will be given by Dr David Timson, Reader in Biochemistry, School of Biological Sciences, Queen’s University Belfast.

Details are as follows:

Date: 12 November 2014
Time: 4pm
Venue: Medical Biology Centre Lecture Theatre 1
Lecture Title: When genes go wrong

Date: 26 November 2014
Time: 4pm
Venue: Medical Biology Centre Lecture Theatre 1
Lecture Title: Treating the “untreatable”: new ways to treat genetic diseases

Date: 3 December 2014
Time: 4pm
Venue: Medical Biology Centre Lecture Theatre 1
Lecture Title: We’re all mutants

These lectures are aimed for the informed general public and academics and are also ideal for A-Level students in Biology, especially those hoping to do Medicine, Pharmacy or Biomedical Sciences.

Refreshments will be served afterwards from 5:00pm on the days of the lectures. In order to assist with catering arrangements, please confirm via email (m.mervyn@qub.ac.uk if you wish to attend.

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DHSSPS Consultation – your input is needed!

DeptHSSPS-rgb_hr_web

Following publication of the UK Strategy for Rare Diseases in November 2013, all four UK countries agreed to develop an implementation plan or high level strategies, relevant to their respective jurisdiction, to deliver the 51 commitments by 2020. This strategy aims to ensure that people living with a rare disease have access to the best care and treatment that health and social services and relevant partners can provide.

The Department of Health, Social Services and Public Safety (DHSSPS) published a Statement of Intent in June 2014 which set out the Department’s approach to delivering the 51 commitments in Northern Ireland.

DHSSPS in association with members of the NI Rare Diseases Stakeholder Group (NIRDSG) have now developed the draft Northern Ireland Rare Diseases Implementation Plan. It sets out in detail how the Department proposes to deliver the 51 commitments, in partnership with the wider Health and Social Care system in Northern Ireland.

NIRDP wants to hear from you. Please send your comments / responses to info@nirdp.org.uk

For further details see http://www.dhsspsni.gov.uk/showconsultations?txtid=74325.

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Autumn Partnership Meeting – Big News

More news on our Autumn Partnership Meeting, to be held from 10.45 to 12.30 (immediately after our AGM) in the Castleview Suite in the Pavilion at Stormont, on 27th October.

Jim Wells, MLA, Minister for Health, who will be the main speaker, will be making an important announcement about the long awaited Northern Ireland Rare Disease Implementation Plan.

Alastair Kent OBE, the Chair of the UK Rare Disease Forum, will update us on progress in England, Scotland and Wales; and Philip Watt, Chair of the Irish rare Disease Taskforce, will describe what is happening in the south.

There will be an opportunity to meet the Minister, and key officials; ask questions; and think about the key issues we need to tackle in making sure that the Vision of the UK Rare Disease Strategy – that no one is left behind just because their condition is rare – is realised in Northern Ireland.
All MLA’s and MP’s have been invited, so make sure you contact your MLA’s and MP to encourage them to come along, and show their support for this important step forward in getting rare diseases taken seriously in Northern Ireland!

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Foodie Delight Fundraiser

Mark Bevin, head chef at the Maldron Hotel is hosting a charity event with a difference this Friday night (17th October) at the Europa.

Mark has been gathering cookery books signed by the celeb chefs for a huge book sale and foodie event, with the proceeds going to NIRDP. Mark has received donations from Theo Randall, Michael Roux Junior, Ching He Huang, Mark Hix, Nigel Slater, Clodagh McKenna and Chapter One in Dublin. The list just goes on and on.

nirdp books

Are you a foodie?

A shopper?

A cookery book enthusiast?

An autograph hunter?

Do you fancy a night out on Friday?

Join us at the Europa, 8pm for a fabulous evening of fundraising! Bring your friends, neighbours and passing strangers…

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