I’m back at the volunteering. My brain is generally slightly more clear, but my body is still on a go slow- one morning of meetings; 5 days sleep. My plans for daily writing and regular recording of achievements haven’t quite turned into regular action, but I haven’t given up on the ideas yet.
My GP has me trying to manage without the anxiety tablets, which is grand as long as I don’t have to do anything. I can leave the house and interact with people, but I have some concerns about the quality of that interaction. “Look at my navy nail varnish!” and “Oooh, I love your new hair” were things I actually said to people at an event in Parliament Buildings this week. Luckily, I knew the people, but that fluffy, vague, smiley persona isn’t all that I am. How can I ever be taken seriously if I’m too hyper to think beyond superficialities?
Later in the week I had wee panics about getting dressed, opening envelopes, and making phone calls. There’s a woman somewhere thinking I’m a complete fool because I left a message on her landline giving my mobile number incorrectly. Twice. In the end I had to email because I couldn’t face another call. Then I gave up for the day and went to bed. It was 11am.
The event was super- loads of patients and small charities gathered to chat to politicians and policy makers, and to connect with each other. It was to launch a survey we’ve developed– we want to capture the real experience of living with rare disease in Northern Ireland in a way that it can be used to influence policy and practice. Even developing the survey was a massive piece of work, now we have to ensure people have the opportunity to tell us their stories, and then we have to process all the information. The hard work is only beginning.
Some of my colleagues are currently working on the first draft of the NI Rare Disease Implementation Plan along with other clinicians and civil servants. That plan is going to be launched by the Health Minister at our next event, on Rare Disease Day 2014, 28 February. We have busy, busy times ahead. That’s ok. We do it because we’re worth it.
The official story of Monday… 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.”
Complete the survey here: http://www.nirdp.org.uk/living-every-day-with-rare-disease/
Register for the rare disease day event on 28 Feb here: http://www.nirdp.org.uk/rare-disease-day-2014-booking-now-open/