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, 2pm to 5pm PLEASE NOTE: NEW TIME!!

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!

DHSSPS Consultation – your input is needed!

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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.

Workshop invitation – End of Life Care Patient Passport

The Royal College of GPs NI End of Life Care Group would like to invite you to a workshop in the process of designing the End of Life Care Patient Passport. They have been commissioned to complete this task by the Public Health Agency and, after a long period of consultation and review, need to ensure that such a passport will have the maximum value and use across the region in the many different settings which patients approaching the end of life encounter.

The workshop, which is being supported by the Patient Client Council, will also detail how it is intended that the passport will fit in with other current communication initiatives.

The Passport, as proposed in ”Living Matters, Dying Matters”, aims to provide a road map for patients and families who are facing the challenges and changes of life-limiting illness. It is hoped that the passport will be provided within primary care to all patients when it is judged that they are facing progressive terminal illness and that their care needs are likely to become more complex.

RCGP hope that the passport will:

  • Prepare patients and families for difficulties which they may face in anticipation of those difficulties.
  • Emphasise the multi-disciplinary approach and how to access and make use of care models which the patient may encounter.
  • Provide patients with a coordinated record of contact details for healthcare teams.
  • Help to encourage Advance Care Planning discussions within families and between patients and health care professionals when appropriate.
  • Facilitate the evolution of therapeutic relationships with a range of healthcare workers by giving patients and professionals a discussion agenda to review and collaboratively plan for the evolving stages of illness.
  • Encourage a change in emphasis in end of life care services from a focus on past and present problems, towards an anticipatory focus, with the goals of maximising wellbeing, building resilience, and pre-empting and planning for potential problems.

RCGP hope to consult as widely as possible about the content, layout, and language contained in the document, and also about the logistics of its implementation and use. They are all too aware that without widespread support the potential benefits of such a passport for patients will remain unrealised.

 The workshop will be held on: 26th September 2012 at 9am to 1pm in The Wellington Park Hotel, Malone Road, Belfast.

Please register an interest in attending by contacting:

Claire.Williamson@rcgp.org.

UK Rare Disease Plan consultation and webinar

At the NIRDP launch on 29th February, Rare Disease Day, Edwin Poots, the NI Minister for Health, Social Services and Public Safety, launched a public consultation on a UK plan for rare diseases. (See the consultation document here). This is a joint consultation, run by the four UK Health Departments.

Rare Disease UK and the Northern Ireland Rare Disease Partnership are concerned that the consultation document presents an overly optimistic view of the ability of each of the UK’s health services to respond effectively to the needs of all patients affected by rare diseases. RDUK are organising a series of events in order to create discussion around the consultation. They want to gather as much input as possible to influence the final plan, making sure it is effective, and can make a real difference to the lives of people living with rare diseases in Northern Ireland and across the UK.

The Northern Ireland event will take place at the Dunsilly Hotel, Antrim on the 8th of May between 10am and 4.30pm. Places are limited so if you wish to attend please complete the attached registration form and send to Samantha Reeve via email at samantha@raredisease.org.uk.

NIRDP and RDUK are hoping to gain the views of a broad range of stakeholders at this event. Those in attendance will include patient organisations and patients/carers, clinicians, health professionals, commissioners, researchers, industry and anyone with an interest in improving services and facilitating research to benefit patients with rare diseases.

A webinar for Northern Ireland, which will summarise Rare Disease UK’s views on the consultation, along with advice for those interested in responding, will be held on the Monday 16th of April, at 1.30pm until 2.30pm. The webinar will include a presentation by the Chair of Rare Disease UK, Alastair Kent and time for questions and discussion. [A webinar is a live presentation delivered over the internet].

To attend the webinar, please register your interest with Samantha Reeve via Samantha@raredisease.org.uk and on the day go to the following URL: www.anymeeting.com/RDwebinarNI1

If you are not available to view the webinar live, you can still download it afterwards from our website. You will still be able to email us any questions you may have.

Practical information

Please make sure that your computer is updated to ensure you don’t have any technical difficulties using the programme. You can do this by clicking here anytime before the event is due to begin.

You will need an internet connection and speakers or headphones.

When you join the webinar, please ensure that when entering your information, you write the name of your organisation, or your interest in rare diseases (e.g. patient, carer, professional occupation) into the ‘location box’ NOT your geographical location.

RDUK are grateful to the following companies for their support in enabling these consultation activities: Actelion, Alexion, Baxter, Bio Marin, CSL Behring, Genzyme, GSK, Nordic, Orphan Europe, Pfizer, Shire and Swedish Orphan.