next steps- staff!

We are delighted that we have been awarded funding by the National Lottery through the Big Lottery Fund, for a 2 year pilot project. The Stronger Together project will work to build capacity within and across the rare disease sector and help to identify development areas for the future.

We will employ 2 part time, home based staff, one to cover the Western and Northern Trust areas, the other to cover Southern, South Eastern and Belfast areas.

The Project Officers will build up knowledge and support in their areas, linking with health & social care and other voluntary organisations. The project officer team will be first point of contact for people living and working with rare disease.  The project will provide practical advice, signposting, peer support and volunteering opportunities. It will also work to improve networking, partnership engagement and seek to influence relevant policy.

Our application to the Big Lottery Fund was heavily influenced by the discussions in the workshop series held in the Spring- thanks to everyone for their input in shaping what is becoming the Stronger Together project. We will continue to share our learning to improve services.

Information about the posts and the application process is available at Community NI

 

Please share with anyone you know who may be interested in working with us. Applications close on 7 July, 5pm. CVs will not be accepted.

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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 …

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NORTHERN IRELAND RARE DISEASES IMPLEMENTATION PLAN – FOCUS WORKSHOP FOR HEALTHCARE PROFESSIONALS

This is to provide more information on the Focus Workshop, aimed primarily at Healthcare professionals, which is being held from 4pm to 7pm on 7 June, in the Grosvenor Hall, Glengall Street, Belfast BT15 5AD.

The Focus Workshop builds on the Workshops held across Northern Ireland during March and April. It will consider the findings and recommendations from those Workshops; and agree priorities for action.  It will also focus on identifying existing information and communication channels used by clinicians and other healthcare professionals working with rare diseases; and consider how these might be improved.

Please register now to attend; and also complete the Survey to ensure that your voice is heard!

 

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NI Rare Diseases Implementation Plan: work in progress!

At last, work is underway on all four of the Priority Actions in the NI Rare Diseases Implementation Plan:

  • The NI Genomic Medicine Centre is now established; staff are being recruited; and protocols for evaluation of the outcomes are being developed with NIRDP input;
  • Over the past month, NIRDP has  held well attended Communications and Information Review Workshops across Northern Ireland.  Thank you, to all those who came along and contributed so powerfully; and a special “Thank You” for their time and support to our speakers, Dr Fiona Stewart, Dr Vivienne McConnell, Dr Deidre Donnelly, and Dr Gillian Rea from the Regional Medical Genetics Service, to Ryan Wilson from the Department of Health, and to our Facilitator, Grace Henry.

The views and ideas from the Workshops are now being analysed; and will be added to the information from the Online Survey- which is still open.  So please go to the Survey, and make your voice count! The emerging findings will be considered in a Focus Workshop on 7 June: Register your interest in attending this event here

Work is now also starting on:

  • Scoping for a Rare Diseases Registry for Northern Ireland, looking at how to establish a Registry, including the need for information on congenital abnormalities, and for links to existing and developing information systems (such as the new English system, NCARDRS), whether in the UK, Ireland, or internationally; and
  • A Training Needs Analysis for doctors and other clinicians in rare diseases building on the existing presentations, delivered in part by NIRDP Members,  in year 1 and year 5 of the medical training course.

This work programme is being overseen by the Rare Diseases Implementation Plan Steering Group, led by Professor Ian Young,  Chief Scientific Adviser to the Department of Health.  The aim is to have a Report by Christmas; an “action research model” is being used, so wherever possible learning can be translated into practice without delay.

 

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Communication and Information Review: Have your say, and make the NI Rare Disease Plan work!

Northern Ireland Rare Diseases Implementation Plan

As part of the Plan we are working with the Department of Health and the HSC bodies to carry out a Communications and Information Review; and on the basis of the evidence gathered, to make and implement recommendations for improvements to current systems.

The Review will provide both face to face and online/paper opportunities to participate; so please make full use of all the opportunities there are- your knowledge and experience is needed to build a better system!

We are starting by holding a series of interactive Workshops (see dates/times/venues below) facilitated by Grace Henry, designed to find out:

  • what information you need to help you tackle the challenges of a rare disease- whether you are a person living with a rare disease, a carer, a health professional, or a policy maker or service manager;
  • how that information should be made available; and
  • how you would like to participate in designing, delivering and evaluating services for rare diseases

These Workshops will give you an opportunity to hear about what is happening on the NI Rare Disease Plan (including on the NI Genomic Medicine Centre; the NI Rare Disease Registry; and medical education) and to have your say  in shaping how you will be included and involved in planning, decision making, and evaluating services.  It’s your chance to describe the information that is available, and how you get it; what is missing;   and to define the information and support you need- and how it should be delivered.

Workshop Outline Agenda:

  • What are Rare Diseases? Consultant in Genetics, Regional Medical Genetics Service
  • The Rare Disease Plan and the HSC: Department of Health Official, Secondary Care Directorate
  • What information is there/What do you need/How should it be delivered: Questionnaire and Facilitated Discussion Groups; Grace Henry

Workshops

  • 16 March 15.00 to 17.00 Conference Room, Portadown Health and Care Centre, Tavanagh Avenue, Portadown BT62 3BU
    Eventbrite - Communications Workshop 2 Have Your Say: Make the Rare Disease Plan work!
  • 22 March 16.00 to 19.00 Larkin Room. Post Graduate Medical Centre, Belfast City Hospital, Lisburn Road, Belfast BT9 7AB
    Eventbrite - Communications Workshop 3 Have Your Say: Make the Rare Disease Plan work!
  • 27 March 12.30 to 14.30 Mulberry Suite, Corrs Corner Hotel, 315 Ballyclare Rd, Newtownabbey, BT36 4TQ
    Eventbrite - Communications Workshop 4  Have your say: Make the Rare Diseases Plan Work!
  • 4 April 15.00 to 17.00 Boardroom, South West Acute Hospital, 124 Irvinestown Rd, Enniskillen BT74 6DN
    Eventbrite - Communications Workshop 5 Have Your Say: Make the Rare Disease Plan Work!

Online Survey

Please comment on Facebook or through Twitter – we are planning a Tweetchat soon; but it would be good to meet up face to face, and share views, ideas and experiences!

Connecting  Advocating  Educating and Innovating

Stronger Together

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