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PLEASE, tell us your experience of healthcare while living with a rare condition in Ireland. We want to understand the challenges people living with rare conditions face accessing diagnosis, treatment & care. With your help we can advocate for improved health services for everyone living with rare conditions in Ireland.
*** PLEASE SHARE WITH YOUR COMMUNITY ***
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Over the coming weeks a UN Resolution for people living with rare conditions will be brought forward to the UN General Assembly for adoption. This Resolution aims to highlight the challenges that people living with rare conditions around the globe face in their daily lives and how the UN can help to promote equity and inclusion for the rare community.
Please join the #Resoultion4Rare campaign – show your support on social media OR write a letter to the UN OR join our campaign. More details at rdi.ie/resolution4rare/.
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https://www.smartsurvey.co.uk/s/Vasculitis_Care_2019/
This is for people living in NI only
This survey was developed to complement the project ECHO scheme for Vasculitis in Northern Ireland and gives individuals living with Vasculitis a chance to express their opinion on the treatment they receive and the effect it has on living every day with this condition. It has been designed by patients, for patients, with help from researchers, clinicians, and charities. This project has been externally peer-reviewed and has ethical approval.
Come and join us for a coffee and a chat about work, volunteering, retirement with a chronic illness.
When: Monday 26 June 2017 @ 11am
Location: Niki’s Kitchen Cafe
107 Central Promenade, Newcastle BT33 0EU
028 4372 6777
For more details or to book your place, contact Emma at emmadtinsley@gogglemail.com
Saturday 17th June, 2-4pm, in the PIPS Building, 30 Kilmorey Street, Newry BT34 2DE.
TOPIC: MANAGING PAIN AND FATIGUE SPEAKER :DR Ann O Hanlon BA (Hons), MSc, PhD Ann is the director of The I Can centre, and is also qualfied in Person centered Counselling and CBT Thanks to the funding received from the Lottery we (Behcet’s NI) are able to offer this workshop at no cost to participants. to book a place or to ask any questions regarding this workshop please contact Fionnuala on 028 417 54773
- Vasculitis Ireland Awareness support group to date, by Julie Power
- Vasculitis the basics, by Dr Dearbhla Kelly, Specialist Vasculitis Clinic, St James’ Hospital, Dublin
- ‘How we can help ourselves’, Self Help and Symptom Management groups available in NI, by Tricia Bowers Arthritis Care
- ‘How to get the most from our appointments and help ourselves’- Kieran Brogan, Patient Advocate, Peer Support Worker
- 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.
- Dr Carolyn Harper, Executive Medical Director/ Director of Public Health – HSC- Public Health Agency, Informal Talk about Commissioning and then discussion about what would make the biggest difference for people in managing their condition.
In the months following this last talk, meetings were held to assess possibility of setting up a tertiary Vasculitis service that would avoid crisis management by having people experiencing difficulties referred by their Rheumatologist/Nephrologist/Immunologist to a specific team, who would recommend appropriate care and if necessary see the person. This service was agreed, along with plans to provide education re vasculitis to the healthcare professionals via an online system. However, due to staffing difficulties and delays in setting up the eReferral system, this is still not operational. Watch this space for updates.
We are at the exciting stage of designing a new app with PatientmPower, Clinicians and researchers in Trinity Kidney Research and Vasculitis UK. This app will be used to help us manage our symptoms, record our health over time and hopefully help us identify triggers which cause flares. It is at the very early stages of development and is currently at design and trial stage.
It is anticipated that it will record
- Activity levels (walking, running, cycling)
- Medication usage & self reported adherence
- Wellbeing through ePRO (EQ-5D)
- Health Journals / symptom journals
- Home Diagnostics data (e.g. Blood pressure & weight)
- Location data
The last item will be correlated against other data sets, e.g. weather, air quality, notifiable diseases etc to help determine environmental effects on our condition.
For more information contact eamonn@patientmpower.com
We were fortunate to have 4 members attend this meeting, Patricia Ryan, Seamus Beausang, Ann O’ Brien and myself. The meeting on Wednesday was very detailed and intense and the following is a synopsis of the content.
Evolving spectrum of Scleroderma morbidity and mortality – Dr Bernie Lynch, Galway University Hospital talk of Royal Free Scleroderma group for information and latest research showing that posterior tibial nerve stimulation may help in the symptoms of faecal incontinence.
[…]
World Orphan Drug Congress, Brussels, 15th-17th November 2016
On 15th November, I travelled to Brussels to represent Vasculitis Ireland Awareness at the 7th World Orphan Drug Congress in Europe. I secured a free place along with a colleague from the Northern Ireland Rare Disease partnership (James Cauldwell, Rare Cancers support group) and we travelled together to find out more about this area and how we as patient groups could expedite access to these important medications.
Perhaps at this stage it would be good to define Orphan drugs – according to European Medicines Agency they are ‘for the diagnosis, prevention, or treatment of a life threatening or chronically debilitation condition that is rare (affecting not more than 5 in 10,000 people in European Union) or where the medicine is unlikely to generate sufficient profit to justify research and development costs. […]
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