Update from Victoria’s birthday post -6 months later

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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,
  • supporting,
  • advocating,
  • 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

Voices in flight.

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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

https://www.facebook.com/pages/Our-Childrens-Voice/752244394892184?ref=hl

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

Victoria’s Voice, goes to Leo V.

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Our Children's Voice

‘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.

Why go?

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.

How?

    • 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.

Our Children's Voice

 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

IMG_018810645090_10153081493044187_7189564019516207886_n10896831_922554124423913_5604863481013723362_n More to come..

Donegal Hospice making plans for children’s palliative care.
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 We miss and love you always Victoria. xx

Hitting Twitter with Victoria Magic! #irishmed

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be a voice not an echo

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.

Why tweet?

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

Christmas – “The Credenza’s Heart”.

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The Credenza’s Heart

The auctioneer’s gavel slams downs and the large old credenza is sold. The display cabinet’s dark wood will shine when polished and the bevelled glassed end compartments can display good crystal on blue-velvet shelves. There is one, large ornate door between the glass ends. Behind this door, is the credenza’s heart. It holds items that are not for display.

The intricate inlaid top panel will help her blend in with the other furniture in her new home. Tiny pedestals of turned wood help her stand off the ground as if she wears heeled shoes. Dust will gather easily under her.

The credenza heaves a settling in sigh. If she could speak to humans she would tell them many wise tales. Where she sits she can be interested in the comings and goings in her new home. The other furniture’s tales are from long ago. The credenza feels privileged to have had such a varied life and yet be so beautiful.

Dogs inhabit the friendly settees in the room the credenza now enjoys. The new carpet is snobbish. The gentlemanly coffee table has always been in the house. His tales give a feel of the past. The walls hold the love of years. The entire house wonders what the future might bring, now that their new owners are married.

One precarious move is enough for the credenza, as the human couple try to haul the other furniture here and there. The female has a large belly which makes this task difficult. The credenza knows that there will be sticky small hands on her curved glass ends again. Her heart is happy.

When the pains come, the entire house can feel each one. Birthing books litter the coffee table and he is weighed down with responsibility. The credenza can see the gate way that takes their owners away. The whole house waits patiently, until the credenza says that the humans are back. The noise is new to most of them. The credenza can tell them all – that this is the cry of a baby.

The room is filled with pink, family, dogs and callers. New-fangled and functional equipment is in front of and all over the olden furniture. This is maddening for some furniture but the credenza knows now – all is complete. The house’s walls seep up this new love. The female talks, the credenza’s heart listens.

Christmas comes and all is decorated. Everything sparkles in a perfection only true happiness brings.

Over time though, something is not quite right. Christmas decorations are thrown away into large boxes. The cries of the baby become louder and longer. The baby does not sleep or suck as well. The credenza is worried and talks to the house. The house whispers to the female. It tells her it will remain here to give her strength, but for now she must get help. For many months the credenza watches the gate. The male returns alone some days. He cries to the walls and into the couch. The dogs are gone for now. All is silent, except for the cries of the male. No baby cries.

The female comes in the gate finally with empty arms. Together the couple clean the room of all the precious, pink possessions. The female rests her head on the credenza and sobs. The credenza can see the long black car that came to take the short, white box away. All gathered humans are silent and sombre.

Barking dogs return full of life. Yet the house still feels empty. The walls echo the promised strength. The credenza teaches the female to fill her mind with unspoken memories. Together they will become stronger over time. She places precious pieces inside the door in the credenza’s centre.

She knows that the credenza will hold the precious memories in her heart.

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Donegal Mitochrondrial sufferers meet Buster & Betty Brown. Yes Mrs Brown’s Boys!

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I was invited to Letterkenny to be involved in a get together for children suffering from rare disease. What a privilege to be part of such a special morning.

Danny and Amanda O’Carroll (aka Buster and Betty from Mrs Brown’s Boys) met with families affected by mitochondrial disorders in Letterkenny today, 1st December. Danny and Amanda hope their involvement will highlight conditions like mitochondrial disease and help families get much needed services in the North West.

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Mothers of children affected by this rare, life-limiting illness explained to Danny and Amanda how services are non-existent for their children in Donegal. Nationally life-limited children have no proper supports. Mitochondrial disease affects every cell in the body. Children with such conditions live shorter lives with very complex needs.

‘We love our children and must fight for everything to improve their quality of life,’ said Aishling Nibbs Oran’s mother.

10392382_348941995278113_1661473397448009713_n Ashling & Oran

Organiser of this first get together Gina Grant (mother to Francis) said, ‘As a group, we hope events like today highlight mitochondrial disease. We will link families in Donegal with information and friendship. Together we will push for an understanding of rare, complex conditions and secure better services to make our children’s lives the best that they can be. Anyone affected please feel free to get in touch with me – ginagrant72@gmail.com.’

10416600_348941998611446_8567389491741033109_nFamilies with Danny & Amanda.

10460416_348942848611361_6697642277337210330_n Gina & Francis

For further information on some other help available nationally: www.cypph.com

I missed you an awful lot today Victoria. xx

 

EUPATI – Victoria hits Europe.

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EuPaTI 2

EUPATI  is helping Victoria get a voice in Europe.  

While I sat in Crumlin, with Victoria, I naively e-mailed drug companies in the hope that I would prompt them into researching conditions like hers. I’ve discovered that it definitely doesn’t work that way. One lone voice or email will not change how the experts research drugs or cures.

I harp on about being interested in Research, Development & Education about Rare Disease. I tweet about it all the time @Victoriabttrfly. So I got an email from a very special lady Pat Roberts (from Save Babies UK). Her encouragement led me to apply for an online course with EUPATI. The course is about medical research and development.

Who or what the ‘eck is EUPATI?

It’s the European Patients’ Academy on Therapeutic Innovation. (Mouthful I know).

The reason I like EUPATI is they use the term ‘Patient-centred’ a great deal. EUPATI as an organisation seems big and includes universities, industries, patient organisations and non-profit organisations from all over Europe.

What do they do?

They want to educate ordinary Joes/Josephines about medical research and provide information to patient reps about trials, the development of medicines, how patients can be consulted and a valued part of the process.

What is medical research and development?

It’s about how experts decide on what drugs to make and market. How they do research to find drugs and cures (and much more.)

How did I get on the course?

I applied. Sent off an application and Motivation letter and waited on Victoria magic. It worked. 300 people had applied. 53 people were chosen. Only 5 were chosen from Ireland. I was one of them. Yipee!

How am I finding the course?

As it’s online mostly (with two face to face sessions) it’s hard to tell yet. It’s massively more complicated than I thought. The medical jargon would ‘melt your head’. It’s all explained, but even the explanations should come with explanations. But, I’m enjoying it.

What’s good about it?

  • Networking with the other passionate patients or patients’ reps.
  • Learning how research happens and how complex it is.
  • It’s online, so I can do it anytime.
  • There’s a feeling change is coming for patients. Patient power is growing. (Slowly)
  • There is an interest in taking patients’ perspectives on board.
  • The other students on the course are hugely inspiring with lots of knowledge.
  • Sharing posts and finding out how different medical systems are in various countries.
  • This course links people throughout Europe from a patient’s perspective.

Where does it lead? – I have absolutely no idea. I hope a little angel (we all know), has a plan – otherwise Mummy is going to be very fed up of molecules and studying.

Miss and love you always Victoria. XXxx