As I’ve just about recovered from the stress of trying to do a half decent job of putting together a video for Undiagnosed Children’s Day (representing over 2000 SWAN UK members, no pressure!), and because pizza hut assured me that they could feed the children, I have finally found a small sliver of time to make sure that in the chaotic rush to meet deadlines, I don’t lose sight of what Undiagnosed Children’s Day means to me. As each year passes I think it is as important for me to spend time looking back and appreciating how far the Undiagnosed community have come as it is to look forward to what lies ahead.
Seeing so many of the notes, diagrams and wish lists evolve from scribbles in my battered note book into plans and meetings and then finally become reality is something that I would have never believed possible in the early days when SWAN UK first appeared online as a holding page that led nowhere. Our campaigning starting point was a brick wall, where people were not even willing to talk about the undiagnosed children in their care. These children were ghosts in the system, uncategorised non entities that remained in limbo until they were given a diagnosis. There was very little understanding that the reality of the situation was that many of the children never got a diagnosis.
Generally people are far more willing to acknowledge that undiagnosed children do actually exist these days, and this invariably makes life much easier when you are trying to talk to them about issues they might face. Being able to sit down with people who are willing to listen to a parent can sometimes be a challenge, but when people do give me the opportunity it gives me the chance to humanises our children and breathes life into the facts and figures that the people that I talk to deal in. This, I think, is the parent advocates greatest strength, because you want people who deal with disabled children to see their actions it terms of it’s positive or negative effect on your child and their family, rather than its effect on percentages or budgets, and that is true whatever level they operate at. There have been remarkable successes and spectacular failures. Undoubtedly, the ongoing campaign to ensure that all undiagnosed children have access to the treatment and services that they need has been some of the most frustrating but rewarding work that I’ve ever embarked on. I’ve sworn as much as I’ve celebrated, but looking back at how far we have come and some of the impossibles we’ve made possible is what gets me up ready to start all over again the next day.
And look at where we are as a community now. From one or two of us mindlessly clicking on a blank website desperate for it to lead somewhere to a to a staggering 2000 SWAN UK members. Nationally we can see the shift towards interventions that are based on need rather than diagnosis in the language that government is now using when talking about disabled children, there is a vibrant SWAN blogging community sharing their stories, there have been information days all over the country, family fun days connecting isolated families, parliamentary groups raising the profile of rare disease and undiagnosed conditions, a rare disease centre in Birmingham children’s hospital with two Roald Dahl specialist nurses for children with undiagnosed and rare disease a transitions nurse currently being created and a Roald Dahl undiagnosed nurse now in position at Great Ormond Street hospital. The SWAN UK community has so much to be proud and thankful for.
And what lies ahead? With an estimated 6000 children born in the UK every year that will remain undiagnosed there are still many, many families out there feeling utterly alone, and we have to reach them. There are still children who are struggling to access basic services, parents who are having to manage and coordinate all their children’s care, parents who are accused of fabricating children’s conditions when the doctors can’t find answers… the list of issues our families face can seem endless. But as many problems as I might see the SWAN community struggling to deal with, I firmly believe that you cannot hope to change lives of undiagnosed children if you alienate the very people that are delivering the care to the families. Education is the key, and the very best way of achieving that is by making an example of those people who are doing it right.
I will let my wonderful children show you our first steps towards trying to achieve this, and I sincerely hope that I will be able to return next year and share everything that has been achieved as a result of the dedication and hard work of so many individuals who want to improve these families’ lives.
So without further ado, our video in honour of Undiagnosed Children’s Day, which I present to you with full acknowledgement of the irony that finds me having to post this when the day is almost over because I’ve been trying to crisis manage issues caused, in part, by a professional’s lack of understanding of my child’s undiagnosed condition. Enjoy!
If you’ve enjoyed the video, perhaps you will consider ways in which you might be able to help us carry on this success. There is still such a long way to go, and the glue that holds it all together, SWAN UK, has lost its Big Lottery funding. Continuing the amazing work is reliant on getting funding to keep SWAN UK up and running. I would happily come and talk to any company who would be willing to consider taking on a unique project like SWAN UK as its named charity. Unlike the bigger charities where donations get lost in amongst the many, every penny counts to SWAN UK and the many children and families they support. You can also donate directly by
Texting SWAN11 (amount) to 70070
Or going online to https://www.justgiving.com/swanuk/
Be sure to check out these posts from other families with undiagnosed children
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I hope your Swan is doing OK ❤️
Kind of you to be concerned Chloe. I’m hopeful he’ll get there once the right support is put in place ?
Hoping things have/are settling down for you all xxxx the video is awesome as are you and those gorgeous talented children of yours, video shared xxxxxx
As alway, thanks for your support Angela. I’m sure things will pick up soon, it’s just hard not knowing how to help
Just Bring the Chocolate you hold things together in a million ways and more bringing more love and support to the table than a lot of people could ever do xxxxxxxx wish I had answers for you too xxxx must come and see you all soon been far, far, far too long X
Shared. I hope you’re all ok x
POSITIVE & NEGATIVE EFFECT
I like this, it says a lot about meaningful, intervention, like the dentist who called us out of the blue with a suggestion to resolve a none dental problem.
This is how we want all practitioners to support all children.
‘…you want people who deal with disabled children to see their actions it terms of it’s positive or negative effect on your child and their family, rather than its effect on percentages or budgets…’
Completely agree. Small things = big difference
My daughter is a puzzle to the local team and we are being referred to GOSH. I had pinned so much hope in the local team diagnosing her, but so far into our short journey they don’t know what’s wrong. She has a short list of issues so far and is under various specialists for each one. we feel we are just managing whatever pops up next as a single issue rather than as one bigger condition.
I don’t yet know if she is a swan as we await further tests and investigations. But as yet, things are unknown.
The not knowing can be so tough. Are you under genetics or is that who you are seeing at Gosh Sarah?
I am assuming that’s one of the team we will be seeing.
So far she is under local neurologist, SLT, physio, waiting to see optomology and audiology as well.
She has had an MRI which seems clear.
She has wobbly ankles and delayed motor skills.
Video fluroscopy revealed she has silent aspiration. Another assessment next week and possibly another videofluroscopy as has another chest infection after choking last week.
What kicked it all off was a drop on the right lower side of her face. They have ruled out bells palsy and a upper motor neuron lesion.
I don’t know what to expect from GOSH, to be honest I don’t know what to expect at all, because we keep getting more things chucked at us and just dealing with it.
I remember those days well. That’s the beauty of SWAN UK, all our kids are different but the emotions are the same. Neurology at GOSH are excellent. You should definitely join SWAN UK, even if she is only a SWAN for a bit, doesn’t mean you don’t need to be around other people who get it. The link to the facebook page etc (where everyone hangs out) can be found on the main website http://www.undiagnosed.org.uk
Is there a community group rather than the main page?
Sarah there is but you have to be a registered member to join (it’s a closed group to protect the members).
Ok. That’s perfectly understandable
This video is fantastic, Renata xx
Thanks Pippa x
Great film xx
Thank you Avril. I hope Raf is ok x
Excellent stuff. Have shared
Thank you Fiona x
Renata do you have a link to video on its own? Might be more shareable and I want to see if I can get it shown at hospital meetings
That would be great Ro here is the direct link http://youtu.be/9qan2bwb2Rk
Amazing video Renata. When I stop crying with the emotion it set off I will share it. Just beautiful and so joyful and positive. xxx
What a lovely thing to say, thank you Anthea
it was a wonderful video! Your kids did a great job ( you did too, obviously! ) and the message was perfect. Thank you. I shared 🙂 xxx
Thank you Alison-Frances, trying to speak on behalf of 2000 people is a responsibility that I take really seriously. I’m always a bit nervous before sharing it with the SWAN UK community, once it’s obvious that no one is going to lynch me I can relax a bit! Glad you enjoyed it x
Brilliant video! Totally agree but I wish that those top tips applied to diagnosed children too 🙁 Sadly there is no communication, no continuity of care, not lead professional in so many cases and no joined up thinking. I suspect it will be light years before parents’ views are taken seriously too 🙁
Many of the issues faced by undiagnosed children are also faced by the rare disease community too sadly. Send the video to some of your doctors, they might pick up some tips!
Fantastic, your videos are so amazing!
Thank you Clare, I try my best 🙂
Best one yet Mrs x
Thanks Katie x
Thank you so much for this. I feel so isolated. No one seems to want to listen. I keep getting passed pillar to post. Xx
Sarah have you joined SWAN UK (Syndromes Without A Name) yet? So many families there who feel the same x
Brilliant as always. Eloquent & witty whilst getting the message across x
That’ very kind Lisa, I’ve written 20+ posts since I last posted but haven’t had the confidence to publish them (because of the subject matter). Having the deadline made me just sit and write and then not re-edit a thousand times!
Great post x
Fab post Renata – You really have achieved amazing things, and if you think about the enormous and unweildy system you are dealing with – you really are dealing with the impossible!
And my minor achievement – I got the blog hop link to work – woo hoo! 🙂
That is no minor achievement Vaila 🙂
Well done Renata, lovely post. Hope everything is okay- you mention having a current battle- hope there’s a resolution soon x
Thanks Elizabeth, I hope we’re just in a dip in the rollercoaster at the moment x
Thank you – this is brilliant. I might send it to our very awesome CCN and say thank you. Sadly our MDT mtg recently was held without me until the very end, then I was instructed what they had decided, and clearly had discussed things with incorrect information (like things have got worse since eating when they haven’t!). It would have made sense to have the parent that cares for the child there, to share with them the patten that is very very clear when doing all the care!
Oh this has happened to me SO MANY TIMES Louise!!!! It just wastes everyone’s time
Yep. I’m so tempted to send each person the video. My dad’s attending the next apt with the gastro consultant who’s insisted on soya and dairy free!
Send this to us and we can share on our twitter feed. In HDU Royal Alexandra Hospital Brighton with my 16 year old SWAN
Sorry to hear your SWAN is in hospital Victoria. I’m not sure what you mean by send it to us though? The direct link to the video can be found here http://youtu.be/9qan2bwb2Rk
Well done Renata another really powerful and moving and clear video your three are even more gorgeous …. Lilia a chip if the old block! Wow!
Thanks Diana. Hope you’re well x
Another wonderful video with powerful and important messages for us all Renata. Lovely to see how the children are growing so fast too! Love from us all, H x
Thank you Hayley x
For some reason I’ve only just seen this. What a great video! I hope things are relatively stable for you guys at the moment. Huge hugs all round to you and those gorgeous children of yours. Sharing video now…. Much love xxxxx
Thanks Mei x
I love this Renata X glad to see u all doing so well look at the children so grown up now X a real credit to u X
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