Palliative Care: The Lets Talk About Survey

The All Ireland Institute of Hospice and Palliative Care’s “Let’s Talk About” care survey is gathering experiences, good and bad, about palliative care in the Republic of Ireland and Northern Ireland.

Many people with rare diseases live with a serious or progressive medical condition from which they are unlikely to be cured and which may limit or shorten their life.

Taking a palliative care approach helps to give people the best possible quality of life. You can help improve policy and services by sharing your real life experiences in this survey. Palliative care is an essential element in supporting all those living with serious and progressive conditions to live life to the fullest possible extent.
If you have had an experience of palliative care, good or bad, please take the time to complete the AIIHPC’s survey, anonymously, so that your experience can help build better provision for the future. Further information, and the survey, is available on line at http://aiihpc.org; or contact Cathleen Mulholland at cmulholland@aiihpc.org or phone 00 353 (0) 1 491 2948

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What’s On: Coming Events..

Just to keep you all informed- here are two of the rare disease related events which are coming up this month!

  1. The second All Ireland Neuromuscular Research and Information Sharing Day is being held in Riddell Hall, Belfast, on 16th May 2015. This event is co-hosted by Muscular Dystrophy UK and Muscular Dystrophy Ireland with registration starting at 9.30 am.
  • Prof Francesco Muntoni will be discussing their clinical centre of excellence and translational research for the benefit of patients, including briefly updating on muscle disease genes and measures for trial readiness.
  • Dr Ros Quinlivan is focusing on their new neuromuscular complex care centre (e.g. http://tinyurl.com/kx54rac) and transition.
  • Prof Eileen Treacy from Dublin is providing an update from their National Clinical Programme for Rare Diseases, and Aoife Bradley, from the Northern Ireland Regional Medical Genetics Service will be discussing pre-implantation genetic diagnosis.
  • Afternoon workshops will take place on Disability Sports and Independent Living, finishing the day with a LEGO fundraising event.
  • A parallel, medically-focused discussion session supported by the NIRDP is available with our international experts as requested 2.00 pm – 3.30 pm.

Everyone is very welcome to attend all or part of the day; so please spread the word, and please do register to accommodate catering.

For further information and to register for attendance please contact Demelza at d.stuart@musculardystrophyuk.org

2. Vasculitis Ireland Awareness have organised the first Vasculitis Conference in Northern Ireland, on “Managing Vasculitis” in the Burrendale Hotel, Country Club and Spa, Newcastle, Co. Down BT33OJY, on Sunday 24th May 2015, 9am-5pm.  

Topics discussed will include:

  • Vasculitis- the Basics: Dr Dearbhla Kelly, Specialist Vasculitis Clinic, St James’ Hospital, Dublin;
  • How we can help ourselves: Self help and Symptom Management groups available in NI: Tricia Bowers, Arthritis Care
  • How to get the most from our appointments: Kieran Brogan, Patient Advocate
  • Pain Management: Patricia Mc Crystal, Chartered Counselling Psychologist- Specialist in Persistent Pain, Southern  Health and Social Care Trust
  • Renal Patient View and the Importance of Registries: Dr Damian Fogarty, Consultant Nephrologist Belfast Health and Social Care Trust with special interest in research; and
  • How to improve our Health and Well Being: Dr Caroline Harper, Executive Medical Director/ Director of Public Health, Public Health Agency NI

The cost is £27.50 per person, including  lunch and refreshments.

There will  be information stands on how to access help, benefits, aids and appliances, and information on courses available to help maintain and regain independence.

This event will be of interest to anyone interested in improving management of a long-term chronic condition.

Register online at https://managingvasculitis.eventbrite.co.uk

For more details contact Julie at 02844 842889

 

Watch this space for details on the forthcoming Ataxia UK Conference (Radisson Blu Hotel, Gasworks, Belfast; 20 and 21 June 2015); and on NIRDP’s own forthcoming events…

 

 

 

 

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access to specialist drugs- share your opinion!

NIRDP are glad to share information about a series of DHSSPS consultation events. Access to specialist drugs is vital. What do you think of the recommendations below? Can you attend a meeting and get your voice heard?

 

Announcement of Public meetings for Individual Funding Request Evaluation

Health Minister Jim Wells commissioned an evaluation of the Individual Funding Request (IFR) process.

Minister Wells said: “Whether you are a patient, a carer, a member of Health and Social Care staff or just interested in our Health Services then this is an opportunity to have your opinions considered.”

The evaluation was in response to concerns that the process was not providing access to specialist drugs that are not routinely available in circumstances where there is an agreed clinical need.

The evaluation is complete and five recommendations have been published which aim to strengthen the process and improve access to specialist drugs not routinely available.

The recommendations are as follows:

· That the existing exceptionality criteria should be amended to remove the reference to 95%.
· That the establishment of regional scrutiny committees should be considered to ensure all IFR applications are subject to regionally consistent clinical input and peer review.
· That the existing IFR guidance should be revised to include greater transparency and to enhance patient involvement.
· That the Department should establish a Specialist Medicines Fund to meet the costs of administering and maintaining increased access to specialist drugs.
· In order to resource the new fund, the HSC should re-introduce charging for prescriptions.

The Minister invited everyone with an interest to attend their local meeting: “Public meetings have been organised to provide an opportunity for public discussion of the proposed changes. I would encourage anyone interested in the evaluation and its purpose to come along and have an opportunity to add your views and comments into the process.”

The Public Meetings will take place from 7- 8.30 pm at a number of venues across Northern Ireland as listed below:

· 24 March 2015 Lecture Room 1, Altnagelvin Area Hospital, Glenshane Road, Londonderry BT47 6SB

· 31 March 2015 Lakeview 2, Craigavon Civic Centre, Lakeview Road, Craigavon BT64 1AL

· 13 April 2015 The Chestnut Suite, Lagan Valley Island Civic Centre, Lisburn BT27 4RL

· 21 April 2015 Antrim Civic Centre, 50 Stiles Way, Antrim BT41 2UB

· 28 April 2015 Belfast City Hospital, 51 Lisburn Road, Belfast BT9 7AB

Notes:

1.Whilst registration is not compulsory, to assist with catering arrangements it would be helpful if you could register your intention to attend by emailing us at IFRPC@dhsspsni.gov.uk

or post to:
Secondary Care Directorate
DHSSPSNI
Castle Building
Belfast
BT4 3SQ

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Collagen – Why Do We Need It?

With support from the Research and Development Division of the Public Health Agency, and in collaboration with the Regional Medical Genetics Service and QUAMS, we are bringing  two external, internationally recognised experts on Connective Tissue disorders and translational genomic medicine, to join with our local experts in a “mini Symposium”, chaired by Professor Patrick Morrison, on connective tissue disorders.

The expert speakers are:

Professor Dianna M. Milewicz, M.D., Ph.D. President George H.W. Bush Chair of Cardiovascular Medicine Director of the Division of Medical Genetics Professor and Vice-Chair of the Department of Internal Medicine The University of Texas Health Science Center at Houston, TX

Professor William Newman, MA FRCP PhD Professor of Translational Genomic Medicine Manchester Centre for Genomic Medicine St Mary’s Hospital Manchester

Dr V McConnell, MD, MRCGP, DRCOG, PGCCE, Clinical Lead, Regional Medical Genetics Service, Belfast Health and Social Care Trust

Dr A Pendleton, FRCP (Ed), FRCP (I), FBASM, Consultant Rheumatologist,  Belfast Health and Social Care Trust

Our aim is to raise awareness of collagen disorders, and provide information on how to understand the diagnosis, and the appropriate treatment and management of these conditions, which from the relatively mild to the life threatening.

The event will provide a focus for patients and carers to improve their knowledge and understanding, and enable them to participate from an informed basis in their care, and in appropriate self-management strategies.

It will add to the knowledge base of clinicians and other health professionals and scientists by providing a world class up to date information and evidence session: and it will enable medical students to learn from internationally renowned experts not normally available in Northern Ireland.

CPD accreditation (2 external clinical CPD Points from the Royal College of Physicians) has been obtained for the event: Registration is required for Certification.

Please Click Here to Register Now!

Where?
Lecture Theatre, Medical Biology Centre, Queen’s University Belfast, Lisburn Road, Belfast

When?
18.00 to 21.00, 24 March 2015

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Joint NI Rare Disease Day 2015 and Inaugural World Birth Defects Day Conference

wbddlogo-CDC rdd-logo

A “Must Go To” Conference,  marking International Rare Disease Day 2015 with a unique joint event, celebrating the first ever World Birth Defects Day, on 3 March 2015, in the beautiful surroundings of the Lough Erne Resort, County Fermanagh.

Why a Joint Event?

Many rare diseases are present and marked at birth, including many heart defects, others are not; many Birth Defects are rare, some are not.  But there is much in common in managing life limiting and long term conditions. Joining together in this way will raise awareness of both birth defects and rare disease, and will demonstrate the benefits of working together, and of collaboration in tackling these complex problems.

What’s the Objective?

This is part of our programme of bringing high quality learning events to people, across the whole of Northern irealnd; and we are very grateful for the Lough Erne Resort’s willingness to assist us with this- an excellent example of partnership!

International Rare Disease Day’s Theme this year is Living with Rare Disease, Day by Day, Hand in Hand. The aim of World Birth Defects Day, established by 12 leading global health organisations, is to raise awareness about the occurrence of birth defects, develop and implement primary prevention programs, and expand referral and care services for all persons with birth defects.

This event will be a powerful expression of those themes. Presentations will include discussions on what birth and rare conditions are; on living life to the full with rare and complex conditions, for both children and adults; the importance of patient and carer engagement; and what the future holds in terms of research into genomics and the prospect of personalised medicine.

The morning session will focus on birth defects; the afternoon session on rare disease.  The day as a whole will  bring together families, carers, patient representative organisations, industry representatives, and clinicians and other health and social care professionals, with policy makers and advisers. It’s a unique opportunity to share expertise and experience and to look at the way forward for better care and better outcomes.

We look forward to welcoming a wide range of patients, carers, clinicians and health and social care professionals, as well as charities and other organisations, to this important Conference.

Why the Lough Erne Resort?

The Lough Erne Resort is widely accessible, and it particularly enables those in the south and west of Northern Ireland to attend; to hear from experts, and to meet others in a similar situation. We also extend a cordial invitation to colleagues and families across the border.  The theme for International Rare Disease Day is “Hand in Hand, Day by Day” and we’d love to make that real through this event.  It’s also fitting that those who show great leadership in living and working with rare and complex conditions “Day by Day” should have a chance to meet, listen, have their say and learn, in the place which has hosted the “Leaders of the World”.

Book NOW! Please register through Eventbrite.

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