NIRDP’s South Down Group

First meeting 7 pm, Thursday 2 July, in the Mourne Country Hotel

Aim: Our aim in establishing this group is to provide support to people with rare diseases, their families and their carers, and to plan activities of interest to both adults and children.

We know that many people living or working with rare disease in the South Down area currently have limited access to support, including information. We include people with the condition(s), their parents, spouses, siblings, friends and other family members, as well as health care professionals who are able to share and learn with us.

Many are very isolated, and feel very alone, living with conditions such as Ehlers-Danlos or Hypermobility Syndrome, Vasculits, Behcet’s Syndrome, Huntington’s Disease, or PSP (Progressive Supra Nuclear Palsy).

Anyone affected by or working with a rare disease is very welcome to attend the meeting on Thursday 2 July, at 7pm in the Mourne Country Hotel

We want to reach out to as many as possible, to see how together we can make life better, by improving access to information, and by identifying and advocating for needed improvements to services for people from South Down.

If you would like to come, please email events@nirdp.org.uk;

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Living Life with Rare Disease: Taking the scare out of Palliative Care

It’s time for our Summer Meeting! This year, we are holding it, on Friday 26 June, in the Day Room at the Foyle Hospice, 61 Culmore Road, L/Derry. Our theme is “Taking the scare out of Palliative Care”.

Palliative care is all about making the very best of life, from diagnosis on; and even when you have no diagnosis.  It’s about how to ensure the support that’s needed to live life to the full, in difficult circumstances.

We have a terrific line up of speakers, so this is a great opportunity to hear and learn about how a palliative care approach can support and improve quality of life, from diagnosis onwards or even if you have no diagnosis.  It’s a chance to have your say about how palliative care can be developed, for all those living or working with rare diseases.
A chance to meet up, make new friends and contacts, and share your knowledge and experience!

Register here:

Outline Programme:
9.30-10.00 REGISTRATION: Tea/Coffee; Scones
10.00 TO 13.45 PALLIATIVE CARE AND RARE DISEASE PROGRAMME:
10.00-10.35 Welcome: NIRDP Representative
10.35-10.45 A Patient/Carer’s Perspective: Sandra Campbell, NIRDP
10.45-11.05 Dr Aine Abbott, RCGP (NI): Supporting Communication: the Patient Passport
11.05-11.25 Dr Damien McMullan, Consultant, Adult Palliative Care
11.25- 11.45 Dr Heather McCluggage, Associate Specialist, Children’s Palliative Care
11.45-12.05. Katie Rigg, Nurse Specialist, Multiple Systems Atrophy Association
12.05-12.25 Donall Henderson, Chief Executive, Foyle Hospice
12.25-12.45 Paddie Blaney, Director, AIIHPC :
12.45- 13.45 Discussion Session: What needs to be done to improve support for rare disease?

LUNCH AND NETWORKING: 13.45 to 14.30
To include Soup, Sandwiches, and meeting and getting to know others.

If you want to join us just for the lunch and networking, please email events@nirdp.org.uk; and we will try to facilitate this; but we would encourage you to come and hear about how a palliative care approach can help make the most of living every day with a rare disease.

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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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