Thanks to the generous support from Ards and North Down Borough Council, we are holding our second North Down and Ards Rare Disease Forum event on 16 January 2020, in the Carnegie Library, Hamilton Road, Bangor BT20 4LH, from 12.15pm to 2.30 pm.
This event is focussed on those who are caring for someone with a rare condition, in partnership with the QUB Rare Disease Team, who are gathering evidence about how support for rare disease carers could be improved.
EURORDIS, through its Rare Barometer programme, has launched a new survey on rare diseases/ rare cancerspatients’ experience of treatment. The purpose is to highlight unmet treatment needs.
The results of the survey can be very useful for the advocacy work that EURORDIS do in the field of rare cancers and would complement other survey’s results you may have completed for the organisation before.
EURORDIS have a team of professional researchers, specialised in surveys, who shall be able to conduct a thorough analysis of the responses received.
The survey is available in 23 languages and is intended for patients, their family members and carers. All responses are anonymous and will be kept in secure storage only accessible to their research team.
We know that if something isn’t counted, it doesn’t count… And we all want to use our experiences and our knowledge to make positive change happen in our health and social care system. So we are working to make sure that the voices of rare disease patients and families – and the voices of their carers, whether that is family, friends, clinicians, social care professionals – are gathered, and reported so that those voices count.
We are running our own short survey at the moment – and the response has been great! Spread the word and get more responses in so we can have a report ready to publish in the autumn.
It would be good if as many people as possible can complete these surveys: the 10,000 Voices Team have facilitators who can help; and are keen to work with us to ensure that the experiences of rare disease patients and families are heard.
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 firstname.lastname@example.org or phone 00 353 (0) 1 491 2948
Good News! Our original end March deadline for responses to the “Living Every Day with Rare Disease” Survey has been extended: so we now have some more time to get our voice heard.
If you haven’t done so already, go to the Survey (see the Living Every Day with Rare Disease tab, on the bar above) and complete the survey; or e mail email@example.com and we will send out paper copies, or arrange for someone to phone you to complete it .
And please pass the word around; get Support Group Members, carers, professionals to complete the Survey too. We need as many responses as we can, to demonstrate that Rare Diseases matter to a lot of people, and to show the impact that they have on people’s lives…
In Northern Ireland it is estimated that more than 100,000 people will be affected by a rare disease- that’s approx. the size of a city like Derry~ Londonderry. Each condition lacks a critical mass, but collectively, rare diseases are not uncommon.
On Monday, 13 January, over 100 service users, carers, health care professionals, policy makers and representatives from the community and voluntary sector came together to encourage people living with a rare disease in Northern Ireland to take part in a regional involvement exercise.
The ‘Living Every Day with a Rare Disease’ event, hosted by the Northern Ireland Rare Disease Partnership in collaboration with the Public Health Agency (PHA) and the Health and Social Care Board (HSCB) took place at Parliament Buildings and was sponsored by Simon Hamilton MLA.
The event formally launched the ‘Living Every Day with a Rare Disease’ survey which will inform the development of the ‘Northern Ireland Rare Disease Implementation Plan’. This survey is the first of its kind in Northern Ireland, responses will help shape the way that future services are managed and delivered.
Our Chair, Christine Collins said, “1 in 17 people in Northern Ireland are affected by a rare disease at some point in their lives. They may be the only person they’ve ever heard of with that condition. They may have to travel hundreds of miles, and across the sea, to see a specialist. Specialist support in the community can be limited. Individual conditions are rare, but collectively, rare diseases are not. A common feeling is one of isolation. This survey will give people a voice to explain their everyday needs, challenges and the obstacles they face.”
Launching the survey Michelle Tennyson, Assistant Director for Allied Health Professions (AHP) and Personal and Public Involvement with the PHA, said: “We are committed to supporting people to tell us what it is like to live with a rare disease, listening to what they tell us and learning how best to provide services to meet their needs.”
Dean Sullivan, Director of Commissioning at the Health and Social Care Board added: “The findings of this survey will be used to inform the commissioning of health and social care services for patients and clients with rare conditions.”
Sharing his experiences with policy makers, Michael Holden said the survey was an opportunity to make sure his experience helped make a difference. “Being diagnosed with a rare disease, in my case Motor Neurone Disease, is life changing. There are many areas we need to improve in terms of supporting patients. It can be difficult for patient support groups and charities to impact services, so I would ask everyone affected by a rare disease, personally or through a family member, to complete the survey and have their voice heard.”
The Patient and Client Council is an independent voice for people in Health and Social Care. They want to find out about people’s experience of the treatment and care they have received for long-term pain, to ensure that those voices are heard by decision makers in health and social care with a view to developing a pain strategy for Northern Ireland. The PCC will use what people tell them to produce a report for decision makers that is based on experience. The report will make recommendations for changes and improvements based on what you say.
If you need any further information, please contact:
Sorcha Forbes Project Officer
Patient and Client Council
Tyrone & Fermanagh Hospital
0800 917 0222