This past wee while, I am reminded of Victoria’s large sigh. She would sigh when the stupidness of the situation, would become plain, to even her. A large wise sigh.
I found myself seeing it quite a bit lately, in my mind. I asked Victoria for guidance quite a bit too.
Like children’s palliative care in Ireland, patient education and involvement in medical Research and Development is new. So… I spend a great deal of time – Confused.
What’s been goin’ on?
Conferences and workshops on patient involvement.
In the photo – Directors of National and EU patient organisation groups. Eibhlin Munroe and Jan Geisler, with the piece in the Irish Times.
Why am I sighing?
There is an overwhelming need from patient organisations to be accepted and included in research that affects them (and others) and a seemingly reluctant, but needed partnership, coming from industry and academia.
But … they all find it hard to listen.
I spoke about the minefield for patients on the way to the promised land of involvement. Dodging egos, politics, others who may trample you. It is exceptionally difficult to break the code of silence that surrounds medical R&D. There is distrust on both sides.
Industry seems to think that patients will be awkward and a burden. They find it hard to hide it, but they try.
Patients assume, that industry will want to use patients and not respect us. They find it hard to hide it, but they try.
Students in EUPATI and patient organisations have a lot to contend with. The study, and there’s a responsibility to be good representatives for their fellow patients. They must remain strong, voluntary and awake in the midst of large brains, industry’s money and terminology.
It’s fecking tiring. Slow bastarding slow, it all seems. Surely patients are the core of the medical system. Why are they not the most important people in the equation?
Everyone in the chain needs a patient. And a patient needs frigging patience.
Victoria had great patience for a small baby. I heard her sigh quite a bit of late. Stay close princess.
Victoria made sure she was involved in this piece. I could explain all the to and fros with photographs, journalists and EUPATI…but all I will say is…… Victoria made sure her voice was heard and no one else’s. Her message is worded by me and Sylvia Thompson (of the Irish Times), but her message is always louder than us all.
Thank you for sticking close by princess. x
Where do I begin?
….. to write about 48 people together in Barcelona learning about medical research?
Like our 4 days of lectures, I could pour reams of facts and figures at you. Instead I will be brief.
EUPATI brought us together. This is the link to them. Please like their page; https://www.facebook.com/eupati.eu
What was it like?
Empowerment and enthusiasm: Everyone was there for every lecture for the whole 4 days. Despite the sun, sea and … whatever else. Amazing!
United: We all grew to feel untied in our endeavours despite the huge range of diseases and conditions we represented.
Pals: We made pals from all across Europe!
Achievable: it feels achievable now, that I can be involved somehow, in National and International Research.
Time: Everything takes time and patience. There is a tremendous amount to learn and sift through.
Inspiring: The other students were the most amazing people. We meet again in September. I feel we will become even closer and more inspired, from the work these people are doing, in their own countries.
Why did I go?
There needs to be a voice for children. A voice for children and babies with rare, terminal conditions. An Irish voice from rural Ireland.
In research and development things need to be profitable for companies. Therefore common adult diseases come first on agendas. Childhood conditions are down the list. It is difficult to research them and bring up such topics. Rare, terminal diseases that affect small babies, that are complex, well… imagine where they are?!! On the very bottom of piles of conditions that are easier to research and will bring greater returns.
I also realised getting a drug manufactured is hard enough, then you must get it to patients. Duchenne’s is one condition where drugs are being stalled http://www.actionduchenne.org/campaign/campaigning-for-safe-and-effective-treatments/
and also this clip about two boys called Sam, https://www.youtube.com/watch?v=-j_z8BQirwI&feature=share says it all
Victoria was very close to me while I was away. I felt exceptionally humbled that she led me there. Although we are supposed to think of the big picture (not just our own cause). I cannot think of anything greater, than representing Victoria and trying to fight to end the awful condition that took her away.
Right now I am waiting Victoria. I’m letting you make the magic happen. xxx
We love and miss you always.
Barcelona March 2015.
Victoria’s story is going to Europe, Spain, where she will be an ambassador for children’s palliative care and rare disease. (and herself of course!)
EUPATI – European Patient Academy for Therapeutic Innovation. (Big mouthful. I know!) is helping her get her message to the EU.
This organisation is gathering all of their students in Barcelona for a four day conference on medical research. I am one of their 5 Irish students. There are approx. 50 students from all over Europe attending.
It is going to be a full, four days of conferences! (No sun time.)
EUPATI are also forming National Platforms where patient representatives can have a voice, in medicine and research development. They have asked me to join their National Platform. EUPATI are funded by pharmaceutical companies, academia, governments etc. It is not a charity.
Their newsletter kindly welcomed me; “We have some new voices joining us across Europe, and I’d like to particularly welcome our new Austrian NLT to EUPATI! We also have Sharon Thompson joining us in Ireland, Witold Michalek joining us in Poland.”
This is new – so I am a bit at sea, without a paddle, sail or engine. Victoria might know what she is doing though? My interests will be in paediatric palliative care and in rare disease research and development.
We love and miss you always Victoria. x
Today is Rare Disease Day 2015. Victoria developed a rare, terminal condition (for those, who are new to our blog).
Victoria’s life story is going cross-border, to Enniskillen, on Tuesday 3rd March, for the
Joint NI Rare Disease Day 2015 and Inaugural World Birth Defects Day Conference http://www.nirdp.org.uk/
They’ve kindly asked me to speak about Victoria. It is a cross-border event. This ties in nicely, with Our Children’s Voice’s wish, to develop cross-border links.
I love the title of the day, ‘Day by Day, Hand in Hand.’
I am hoping that Victoria’s life shows that theme; how we take and took things, day by day and our hands were held, all the way.
This is the official video for Rare Disease day. It is lovely.
love you baby boo. xx
On Victoria’s birthday I wrote the following;
Presently Donegal and Sligo are regions that do not have an outreach nurse. This is because we have a paediatric liaison nurse. This wonderful lady is based in Letterkenny and has mountains of children on her books from the sick to the dying. Her remit is huge and if she’s sick or on holiday, there is no cover for her. Due to her post Donegal/NW did not get an outreach nurse when the rest of the country did.
What is a paediatric outreach nurse?
She/He provides a link between home and hospice/hospitals for families.
Their role is to help families;
- in planning care pathways,
- helping with symptoms,
- sourcing supplies,
- liaising with services,
- Planning appointments,
- Home visits – listening.
- Someone on the end of a phone that knows your child inside out.
Of course an outreach nurse does more than the above – but you get the general idea.
Now – I can announce we have an Outreach Paediatric Palliative care nurse post sanctioned! I am beyond happy and grateful to the mums and families in Our Children’s Voice. We did it.
Left to accomplish is getting the post filled asap. Northern Irish links for appointments and hospice care, hospice and crisis beds in Donegal and of course more trained consultants and nurses in rare disease and palliative care.
I do believe no matter how ludicrous it sounds… that Victoria got her birthday present (finally) and she helped it happen.
We miss and love you always Victoria. xx
I think most people are aware that I’ve been campaigning for a long time for children’s palliative care. Rural, paediatric, palliative services are essential and mostly non-existent in Ireland. Children also travel long distances to Dublin for treatment, appointments and respite.
Somehow – a group of mothers came together in our county (district) and all of our children have/had rare disease. The last post was about our visit with the Health Minister, Leo Varadhkar.
Things have taken off!
Like butterfly wings, our fragile stories took flight and were seen and heard nationally. Radio and newspapers and now Facebook, twitter and blogs are taking our children’s stories to the ears of many.
There is a huge list of media sources for our stories, so many I think it would bore you to see them listed here. If you check out Our Children’s Voice facebook page
this will keep you up to date.
My heart is sore yet full of hope for the future. Please watch this space for some good news soon. We miss and love you always Victoria. xx