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
‘Our Children’s Voice’ is meeting The Minister for Health, LEO V
On Wednesday 4th Feb, Victoria will have the ear of the Minister for Health, Leo Varadhkar.
‘Our Children’s Voice’, the group of parents from Donegal that have/had children with life limiting illness are to meet the Minister. Victoria’s life and beyond will be presented to him, along with the journeys of 5 other families. Special children Francis, Oran, Jack, Leah and Katie will all be represented at the meeting by their mothers, Gina, Ashling, Marie-Louise, Brenda and Fiona.
We are asking the minister to remember rural terminally ill children (and those with high-complex medical needs). We wish for the government to remember that they exist. That they have the right to proper care, to be counted, to be thought of in policy preparations and implementations and to have practical, specialised medical help.
What can he do?
He can facilitate change and make Donegal an example of good, quality rural-palliative care for life-limited children.
- He can give Donegal an Out Reach nurse. A specialised nurse that almost everywhere else in the country has.
- As a small nation, children don’t need to know about borders. Cross border partnership makes sense in the treatment and care of terminally ill children.
- Outreach clinics from Dublin by consultants in rural locations so many times a year is not a great deal to ask. Or again Cross border facilitation of these.
- Another paediatric palliative care consultant. There IS ONE ONLY – IN DUBLIN!
- More paediatric palliative care specialised nurse placements in Donegal.
- Help with providing crisis and respite hospice beds for children in the county.
- Reinstating the feeding clinic in Letterkenny and the Genetic services supplied in Crumlin now gone.
- Access to earlier diagnosis and pathways of proper, quality home care support packages.
- An education and research programme into rare disease. Implementation of the National rare disease plan.
- The new children’s hospital’s location is considered by the parents to be an inadequate site yet the government refuse (so far) to listen to the people, who will rely on this service the most.
- Automatic medical cards for life-limited children or seriously ill children without a fight.
As wonderful as charities are, they shouldn’t be the only life lines for families.
As you can imagine our list could go on and on. There are many statistics, links to policy and reports in our presentations. It seems wrong that we have to produce figures and fight for what is a basic need.
We are asking for our children to be heard. Although some of them will never speak, their lives are important and their stories need to be heard.
‘Our Children’s Voice’ – A positive, clear, strong Voice for our children and those that will come after them.
L-R Gina Grant, Fiona Farrell, myself, Ashling Nibbs, Marie-Louise Crossan with supporters Dr.McDaid (far left) Michael Murphy, Rev Wright and Danny O’Carroll. (abs Brenda McGeehan)
Media links etc
What are we up to now?
Tomorrow night Wednesday 21st of January, @Victoriabttrfly will co-host a tweet-chat with @drfarrell about children’s palliative care issues in Ireland.
We hope to connect with people from all over the world. We wish to inspire and talk about caring for children at end of life. I hope this tweet-chat will link people, make discussion and highlight gaps. It should highlight http://www.cypph.com. A national website for palliative information.
What do you do to join in?
You simply use the #irishmed and chirp in with tweets. Everyone is welcome. Don’t worry if cannot tweet. Set up an account and tweet a message with the #irishmed. I did and know a little more about twitter – but not a lot!
If you wish to talk directly to someone use the @ and their twitter name. For eg; @Victoriabttrfly thks for tweeting about this #irishmed. You must make your point in less than 140 characters. (not much space eh?)
What will we tweet about?
To follow a structure, we use four questions, (but you don’t have to stick with those necessarily). If you do comment on a question, use the T1, T2, T3 or T4 to show what your comment is about. It can get a little confusing on twitter, but that’s half the fun!
At 10pm (5 ET), there will be an Introduction and Greetings. Everyone says hi and who they are.
T1 What do you know about life-limited children?
T2 Is home care always the best care?
T3 What would you ask the Minister for Health to ensure better care for life limited children?
T4 Do you think medicine values end of life care, as much as care at start/during life? If not, how we change this?
There will be a round-up and good-bye at 11 pm.
It is surprising how chatting with a limited amount of characters, all mussing in together, all talking at once …. actually gets some interesting feedback and connections.
#Irishmed / @drFarrell and company, have been very kind and included me in many discussions now. Although, I am not a medic/pro they accept me very readily. Of course, I am hoping this Tweetchat will be a productive and magic affair. As we are going to meet the Minister for Health about rural, paediatric, palliative care, we hope this discussion will add to that also.
We must talk about children with life-limiting illness. It’s the least they deserve. They need a voice and at present, we need to trend on Twitter at #irishmed to get their voices heard.
Tweet Magic needed tomorrow night, Wed 21st 10pm!
We miss and love you always Victoria … xx