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.

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!

ANNUAL VASCULITIS IRELAND AWARENESS ALL IRELAND CONFERENCE

Vasculitis Ireland Awareness are hosting their annual All Ireland conference on 28th and 29th of October in the Royal Marine Hotel, Dun Laoghaire.

This year will open with a patient panel, where attendees will have the opportunity to hear more about living with Vasculitis, from diagnosis through to management, comorbidity and the disease from the carer’s perspective, followed by a Consultant’s panel in the afternoon with specialists from Rheumatology, ENT and Orthopaedics.

Julie Power, Founder and Chairperson at Vasculitis Ireland Awareness says “The event will offer many opportunities for discussion about Vasculitis and will include information for attendees about recent developments in research as well as offering a chance to talk to the people involved. This is an ideal opportunity to meet others living with the same issues and to engage with the experts.”

The cost of the event is €45 with accompanying attendees paying €35 each. The cost includes lunch and refreshments on Saturday, after an evening of networking the event will close at noon on Sunday.

To register visit  https://vasculitis2017.eventbrite.co.uk/ and follow us on Facebook for updates Vasculitis Ireland Awareness, alternatively, if you would like more information about this topic, or the event please contact Julie Power at 02844842889 or email at julie@vasculitis-ia.org.

Staff Vacancy: Project Officer (part time, home based)

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

As a result, we currently have an new opening for a part time, home based member of staff, to cover the Southern, South Eastern and Belfast areas.

The Project Officer will build up knowledge and support in their areas, linking with health & social care and other voluntary organisations and 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.

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

NIRDP MOVING FORWARD AFTER A SUCCESSFUL RECRUITMENT PROGRAMME!

We were one of six delighted community groups across Northern Ireland celebrating a shared award of £1 million from The National Lottery this June, receiving a £112,124 share of this total fund to employ 2 part-time members of staff who will work on an outreach basis.

We have since had a very successful recruitment programme which took place in August with plans for the new project and recruits to begin in November.

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.

Fiona McLaughlin, Chair of Northern Ireland Rare Disease Partnership comments “We are absolutely delighted to have this remarkable opportunity to provide the additional support that is so crucial to all our members. This is first for us in Northern Ireland and we are keen to ensure that this funding will make a real difference to families, carers, medical professionals and member charities as well as offering us an important opportunity to raise awareness at government level and beyond”

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.

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 …