Who cares for the carers?
There are many days where I feel like waving the white flag of surrender. I give up. Stick a fork in me, I’m done. Substitute your own personal favourite motto for when the 💩💩 just keeps on coming and you really don’t want to face it anymore.
As a rule, I am not a woe is me kind of a gal but there are limits and even for the Queen of “the glass is half empty, therefore there’s always more room for wine” claimant, sometimes I just don’t want to play anymore.
So why today? It’s been a busy week – nothing new there. Multiple appointments – again lather, rinse, repeat. Certain “dark forces” (bear with me, having to be slightly obtuse so it’s not too outing; a story for another day!) have done their level best to floor us as family and put up barriers; as my Dad would say: “same sh*t different day.” Nothing especially jumps out as being out of our ‘norm.’
Actually, the straw that broke the camels back today is really rather ridiculous – especially since I’m a grown (loosely termed since I barely scrape 5ft 3″) woman.
I don’t know about you but for me, it’s often the little things that tip me over the edge and today was no exception: there were NO apricot danishes left in a certain food establishment that prides itself on offering not just any old danish…. and boy did I have my heart set on that danish.*
You could in fact say I had built that particular danish up to be the highlight of my week (I know I know, I need to get out more!) and I was relishing scarfing it down with my mid-morning latte whilst staring daggers at my ever-increasing piles of paperwork that needs to be
set light to dealt with and some of it rather urgently (anyone thinking I might be procrastinating by writing a blog post instead of dealing with said paperwork, that’s an affirmative!) particularly if I intend to throw my own kind of shade back at the dark forces. They might be putting up barriers but I’m packing TNT, a demolition ball and an AK47 to pulverize them. Ok perhaps I should STEP AWAY from the caffeine….my over active imagination, key-board-warrior-esque approach and twitchy eye suggest that caffeine, my drug of choice, has been consumed in too vast a quantity.
Whether it was the *slightly*
murderous deranged look in my eyes or the muttering sotto voce of curses questioning the parentage of all food halls connected with this particular establishment that caught the attention of the lovely man on the bakery counter, I can’t be sure but clearly sensing something was amiss from the plethora of delicacies in front of me, he tentatively asked if everything was all right.
Resisting the urge to scream out in the style of Ross from Friends a la “My Sandwich” sketch (you young things aren’t likely to be familiar with that gem so let me share it here https://www.youtube.com/watch?v=6tqmXTYa3Xw) and without resorting to tears either (the struggle was real people!) I managed to convey my deep disappointment that there were no danishes of the apricot variety to be seen.
And then, as if by divine intervention (ok, I’m waxing faaaaaaarr too literally, all that caffeine has really done for me today!) the dear, dear bakery man, (alas I did not find out your name in the ensuing rush of emotions that came over me!) uttered those most blessed of words: “not to worry, I’m just about to put some out!” Yes! Fist bump, air horns and angels singing the hallelujah chorus; the gods and goddesses and the high priestess of bakeries had smiled righteously upon me.
I must confess it felt like there was something in my eye. I’m thinking that as my salivary glands went into over-drive, some sort of neurological spill over occurred to cause watering?
But the thing is, I’m a firm believer in taking your pleasures where you find them (erm just to caveat, legal ones, I’m definitely not advocating lawlessness or reckless criminality!) because being a parent is at times bloody hard work.
Being a parent carer is even bloody harder, thankless work and as far as I can find, there’s no resignation clause and as for the pay? Well if you are “lucky” enough to qualify (there are certain criteria and the person you are caring for has to have significant needs taking up significant amounts of time) for carer’s allowance, do the maths – you don’t even get minimum wage for the hours you put in. Oh and no matter how many people you provide care for, you only get a single carer’s allowance.
When you multiply caring for 3 children and an 18-year-old who all have varying medical/social-emotional needs and complexities, there really aren’t enough hours in the day. I go to bed every night with a to-do-list that grows ever longer. For every 2 things I manage to tick off during the course of the day, I seem to have added at least another 5.
It plays on my mind that I have dropped the ball somewhere; have I requested everyone’s medications from the GP and arranged for them to be sent to the pharmacy? Do we have enough feed/containers/giving sets/dressings/lotions and potions in hand to get to the end of the month? Have I transposed all of the appointments that crop up into my phone calendar so I can plan everything round them in the weeks ahead? And woe betide if any of those appointments were only given to me over the phone and I don’t have an actual letter to cross reference and double-check with – will I get the right child to the right hospital/clinic/specialist on the right day and time?!
I’m not ashamed to say I take a concoction of various medications every day to help me manage one way or another; be that for my severe depression, anxiety and inability to sleep or for the acid reflux that plagues me and the dodgy back/neck/shoulders and most recently, excruciatingly painful sciatica (so many carers suffer with joint/muscle pain and problems as result of the physical demands of caring for a loved one with mobility difficulties) I’m acutely aware that these are a crutch for want of a better word. In an ideal world, it would be far better to tackle the sources of the problems permanently. Even better in some far off utopia, it would be to put provisions in place to be proactive instead of reactive. To prevent the aches and pains and feelings of isolation, despair and all the affiliated emotions and physicality’s that go along with being a carer.
I learned to my cost (and that of my families, not to mention the NHS etc) that if we carers don’t put protective measures in to fortify ourselves it all comes crashing down.
I am not unique. As a member of support groups such as SWAN UK – http://www.undiagnosed.org.uk I read far too many comments from parent-carers who face battles similar or even harder than my own.
On other forums I’m a part of in relation to education, health and social care there is a generalised resignation to the fact that accessing support, working WITH organisations or professionals instead of the THEM and US facade is a constantly uphill battle; at best a ‘sorry there’s no money in the system’ approach to outright horrific accounts of utterly despicable, underhand tactics designed to deprive the most vulnerable members of society from the most basic, fundamental human rights and discrediting, even slandering or making false allegations against those who have to pick up the mantle and strive on their loved ones behalf. Probably best I don’t get started. I can feel the vitriol rising and that won’t help the acid reflux!!
Next week from 11th June to 18th June inclusive is Carers Week in the UK. You can learn more here: https://www.carersweek.org It is estimated that in the UK there are 6.5 million carers and that figure is only certain to rise as we face an ageing population who are living longer, an NHS that is under resourced, over stretched and a welfare system that has been not so much stripped back as hacked to death and lord only knows what, if anything will be around in future times to help and support those most in need.
But for now anyway, I have taken care of myself by refuelling with a double shot, fully caffeinated (you don’t say?!) latte and a belly full of apricot danishso I’m
bouncing off the walls all fired up to tackle the paperwork and smite those dark forces with a mother’s wrath.
*If anyone suddenly feels the need to shower me in delicious pastries of the apricot kind, you know, I’ll happily take one for the team 😉 Or tell me your own personal sanity savers and maybe I’ll see what else I can try!
FRIDAY 27TH APRIL 2018 – What might this date mean to you?
I guess to answer that will depend whether you are reading this before the 27th (assuming I actually manage to publish it ahead of schedule, ahem!) on the day itself or after.
It might be just a normal (whatever that is) day for you. It might be barely memorable or scored across your heart and seared burning in to your mind for a host of reasons: a birth date, a due date, a loss date. Exams? Pass or fail. Post arriving: exciting news, terrifying news, bad news or good? A day to remember or a day to forget.
I can’t predict the future (oh how I wish I could, lottery numbers anyone?!) but with more than a degree of certainty I can tell you what the day will mean to me and mine:
SUPERHEROES – Undiagnosed Children’s Day (UCD)
A day of celebration in conjunction with SWAN UK, on the impact that being undiagnosed has on a child and why this makes them superheroes! Recognition of all their varied, unique abilities and quirks to put it in a more kindly fashion.
This year is the fifth (yes 5th! I’ve been banging on every year on or around this date!) annual nationwide awareness day and the aim of the day is to raise awareness of undiagnosed genetic conditions and to raise funds for SWAN UK: http://www.undiagnosed.org.uk/news-events/news/undiagnosed-children-s-day-friday-27-april-2018/
As I type this I am aware that I have created (more) mayhem than usual. Not really a surprise. I am quite good at that. Perhaps that could be MY Superhero talent/new name – Mistress of Mayhem 🤔- I quite fancy the idea of a costume with MM on it somewhere…hmmnnn.
Don’t worry I promise not to don lycra (the world really isn’t ready for that) or wear my pants outside my trousers any time soon – although I am currently VERY sleep deprived since Minx’s feed pump fed the bed and I was woken at 3am by wails of despair. Full bed change, including mattress protector and duvet plus scrub down of sticky child = all good fun and increases likelihood I may forget myself and inadvertently dress the wrong-way-round!! Please take pity on me if you see me in the street pants on the outside loud and proud!
When bad feeding pumps happen to good people…….Bedroom floor… chaos……everything sticky and wet….teddies and cushions everywhere.
Minx improvising with fleecy onesie, obligatory unicorn slippers naturally and not to be out done, on trend mermaid blanket. A pretty ‘heroic’ effort I think….
Anyway, back to the reason for my latest chaos: G-Man and Minx’s primary school have very kindly agreed to support the SUPERHERO theme for Undiagnosed Children’s Day. Any child that wants to can wear some form of superhero attire for a small donation with all proceeds going to SWAN UK. How great is that?
We have been incredibly fortunate that the children’s school has from day one supported both the children and ourselves on a practical and emotional front and we are eternally grateful for this.
So when I wrote to school about SUPERHERO DAY and they kindly shared it with the school newsletter in suppport of UNDIAGNOSED CHILDREN’s DAY, perhaps I didn’t explain it as best I could and now various parents are (rightly) a bit peeved that there’s yet another dressing up day which they have to scrabble around to find costumes for and potentially plead with their offspring to dress up in. It was never my intention for anyone to have to go and buy (or make) anything specially and I certainly wouldn’t want anyone to be out-of-pocket, other than if they wish to make a financial contribution towards SWAN UK.
Fortunately, not only are the school supportive, so are the parents and having opened up on Facebook that I am the loon behind this Friday’s shenanigans and the reasons why, the responses have been overwhelmingly positive. For any parents (and/or staff) reading this: Thank you 🙂
Moving forward, I best confess that when I started this blog post (and as is often the case when the mood takes me to write) I didn’t have a formed idea of what I wanted to say……
I don’t want to come across all preachy, nor woe is us in terms of the day-to-day practicalities we deal with but I can’t give enough weight to the importance of knowing we are not alone in being undiagnosed and how isolating and scary it can be without appropriate support. Somehow all of that needs to be wrapped up neatly and tied in with SUPERHEROES too, otherwise there’s not much point in sharing this post!
In order to find a place to start, I spent some times searching for inspiration
playing on Facebook and found myself googling heroes and superheroes. Surprisingly there are an inordinate amount of songs and song lyrics referencing heroes – I found a site listing 50 pretty well-known artists – songs from days of yore to the 2017 offering from The Chain Smokers and Coldplay: “Something Just Like this” Actually, I generally liked many of the listed tuuuuuunnnneeeess as in the main they were pretty darn fab – who could fail to love David Bowies 1977 Heroes? (seriously if you don’t love it, what’s wrong with you?? 😉)
A lot of info on the good old web naturally refers to the superheroes we find in comic books, cartoons and on the big screen. It’s fair to say Marvel, Disney et al have a VERY loyal, hardcore fan base spanning a wide variety of genres.
‘Comic Cons’ – comic book conventions – have become a world-wide established phenomenon not just with children but grown adults too, religiously adopting the costumes of their favourite superheroes and priding themselves on knowing every character nuance and remaining in character at ALL times – as a teenager I was fortunate enough to go to New Orleans. My parents had booked on spec into an upmarket hotel chain that was surprisingly reasonable. We found out the likely reason why it was less $$$ than expected: coming down to breakfast the next morning I think we were the only hotel guests not part of the MASSIVE star-trek convention that was being hosted there. Most disconcerting to be in the lift with various characters, aliens and such like all decked out to the nines, mainly speaking Klingon……
What eventually dawned on me (and probably you by now Dear Reader) is that I have been making a hash of things, fretting about the details and getting bogged down in spurious things that have no relevance. I realised I actually didn’t need to research or learn 100 amazing but useless facts about superheroes because I am already in touch with so many real-life heroes – and definitely super ones at that – in everyday life!
How could I forget our SUPERHERO children – and by ‘our’ I mean my own undiagnosed children as well as the SWAN UK collective (massive or posse work just fine!) SWAN children and for that matter their siblings, are all heroes because they deal with so much and miss out on many ‘normal’ parts of being children on a day-to-day basis. How too could I neglect to mention the heroic parents who hold it all together? And it goes without saying the numerous medical personnel too.
In the 6 years I have been a member of SWAN UK, I have learned that SWANS come in all shapes and all sizes, all ages and stages; Our children’s needs are all uniquely different – cognitive, physical, medical or combination thereof; yet I have never come across a stronger, more supportive and cohesive network.
People whom I have only met in the virtual world or followed on social media but with whom I have established firm friendships; those who rise up against inequality, injustice, campaigning for basic rights and dignity, disability access and inclusion. Forging ahead to give hope to others coming after, inspiration and positivity to celebrate the small and seemingly insignificant milestones. The stoic reliance on coffee, chocolate and cake and ability to laugh at the grimmest and most revolting happenstance. A lot of discussions involving poo and lack of sleep. We celebrate and commiserate, sometimes all in the same conversation.
And the darker side: I have seen battles courageously fought, courageously lost. I have seen too many tragedies. Losing even one child is one too many. It is against the natural order for a parent to bury a child.
It would be wrong of me to dwell on sadness when UCD is a day to celebrate but neither can I sweep it under the proverbial rug. It is something that has touched all parents/carers of complex children in one way or another. Be that grieving for the child you thought you would have but recognising their reality, their future, your hopes and dreams for them will be of a different kind or in that most final and catastrophic of situations: death.
In truth I could not do the latter ‘justice’ for want of a better word. Whilst I can be sympathetic to such grief I cannot truly be empathic to such devastating loss or speak from the heart in the ways of those who have been through it personally. For this I feel both gratitude and guilt.
However, since I’m here to highlight and celebrate all things superhero, I can speak passionately and proudly about my own children and the issues that they take in their stride, year on year, day in and day out. I also speak with respect and recognition of all the parents and children detailed above – they are all superheroes in every sense of the word.
In my own children’s case, their benchmark of ‘normal’ is normal only to them and of course children like them. Pain – they experience for a variety of reasons and continue to go through on a regular basis. They have been prodded, poked and jabbed with needles for bloods, anaesthetics, genetics, electrical muscle testing, surgeries. The lists go on and the appointment letters stack up. They have been and continue to be tube fed via naso-gastric tubes or gastrostomy tubes in stomachs. Multiple medications at varied intervals throughout the day. Physiotherapy, supportive footwear, splints, mobility aids and such like are part and parcel of our household.
Daily there are postings in our SWAN UK community group about children on oxygen, ventilated, with seizures or undergoing complex and at times pioneering medical treatment. Of children learning a new skill with the help of technology, vital equipment and achieving all that they can.
It is sobering to reflect that in my own children’s 11 years and 9 years respectively, they have been examined by more GP’s, pediatricians, surgeons, consultants, therapists of various ilks, than I can count. I have forgotten how many anaesthetics each has had, although I know Minx numbers into double figures. There are likely more surgeries ahead based on recent discussions.
The professionals and teams involved in managing care compile a lengthy list. G-Man and Minx have each undergone tests involving noxious liquids and substances, radiation, been forced to lie still or assume a specific position for lengthy periods of time. And their experiences of being scared, uncomfortable, of invasive and complicated procedures would put many an adult to shame. As the years go on, they are less phased by it and more focused on maximum parental extortion – the more scary/painful/lengthy = £££ for bravery rewards. I say this only slightly tongue in cheek, wishing that it didn’t have to be that way but grateful for their resilience.
In the past when well-meaning folk have commented on how brave the children are, I have perhaps done them more than a little disservice. Minx is used to it I have stated matter of factly. She knows no different. It’s been that way since she was merely weeks old and now trips to Great Ormond Street are seen as an opportunity to have a girls day out around appointments or take in a show – her words, not mine. Bittersweet.
G-Man too. Although his issues have become more complicated as years have gone on, he is increasingly less fearful of requests for blood, all too familiar with the boredom of over-booked hospital clinics and lengthy waiting times. He knows how to work the gadgets on the hospital beds and which cord not to pull in the bathroom unless you want a flurry of medics crashing into the room and invading your privacy.
Erm….is it supposed to be that far off the ground?! (Older sibling familiarising himself with the controls….well he does want to be a pilot after all!)
It has been said that you should never try to meet your heroes, lest they be found to have feet of clay.
I know I don’t have to worry about any heroes I meet in the real world being fallible because the ones that really mean the most (to me) are already the biggest part of my life and have already far exceeded all my expectations and achieved so much in all the ways that matter most.
So on Friday 27th April 2018, whilst my children don their favourite superhero attire like numerous other children around the country, I will be extra specially proud of them knowing that their real superhero suits will be hidden underneath!
If you would like to learn more about SWAN UK and the ways you can support SUPERHEROES, please click on these links: https://www.undiagnosed.org.uk/support-information/ https://www.undiagnosedchildrensday.co.uk
To donate: https://www.undiagnosed.org.uk/donate/
When you look a this picture, what do you see?
A smiling girl (admittedly that’s probably stretching the use of the word ‘girl’) and her dog? A woman who looks tired, definitely in need of a bit of slap (literally and figuratively?!) and probably some air brushing?
This picture is so bittersweet in so many ways that I *almost* can’t bear to even share it. My beautiful dog Buddy is in it and he’s no longer with us, departed over the rainbow bridge to be with other furry friends. It makes my heart ache all over again but he still brings warm thoughts and a semi smile to my face nonetheless. The power of canine love.
But what this picture represents is so much more than the image at face value.
Just over one year ago this picture was taken in the reception area of a psychiatric hospital. I was suicidal and had been admitted two days previously having reached crisis point and having made the decision to end my life.
Even trying to write that phrase feels unreal and melodramatic. Like a bad soap opera or overly prosaic novel. This stuff doesn’t happen in the ‘real’ world. Except it does.
I don’t know if it was a surprise when I eventually confided in some of my closest friends about what I had done and what at times, it feels like I still intend to do. In some ways reaching that point was a huge shock, even for me.
If there is such a thing as a poster girl for depression, I’m not certain mine would have been the picture used (hopefully not this one anyway…it’s not my best side!) I was and still am (usually) a glass half full type person – I’ve said it before and I’ll say it again – a glass half full means there’s still plenty of room for more wine!
See, I crack jokes, talk a lot, especially when nervous, I smile, put make up on, clean clothes, prepare meals, answer phone calls etc etc so how can I be depressed? And therein I think lies the crux of it: what does a depressed person look like? What image does someone who has reached the end of their coping skills project?
I wouldn’t dream of speaking for others who have gone through and continue to battle their own demons. But in my experience, depression is such an insidious thing. So even if you seem to be the life and soul of the party, the one that is strong and capable, dependable and reliable, it doesn’t mean you can’t experience the gnawing, dragging, emptiness. The feeling that it’s all too much, no way out, nowhere else to run to.
Too much effort, too much expectation, everything from getting up, dressed, one foot in front of the other a herculean effort. But it doesn’t mean you don’t keep DOING all those things. Sometimes the doing of all those very things is one of the ways you keep some kind of a handle on it, albeit a wonky one.
So it doesn’t in any way seem surprising to me when I read accounts of how someone has gone about their day-to-day life, seemingly taking it on the chin, even appearing to have a great time attending events, get togethers, nights out….and then they end it all.
The shock and grief to their nearest and dearest must be bitter, unpalatable and shrouded in disbelief. There must be soul-searching. What did they miss? What clues didn’t they pick up on? How could they let their friend/partner/family member down so unreservedly? Why couldn’t they be stopped from choosing this final absolution?
And anger, only natural too. Rage at their selfishness; that they left everyone in this mess, they stopped trying. Took the ‘easy’ way out.
All these things run through my mind regularly, over and over, like a fuzzy old-fashioned film negative.
I feel burdened by the weight of other people’s expectations of me and the damage that would ricochet through our family unit if I achieve my objective. I once had a crisis mental health worker give me the statistics of how many young people go on to take their own lives in the event that a parent ‘chooses’ to commit suicide. Harsh and horrifying and heaping on the guilt. Crafty, effective move that was.
Perhaps because so often my every day life involves meetings with professionals in relation to the needs of our 4 children, it is so important (to me) that my armour is in place. Keeping up appearances, stopping them from defining me as *that* mother, that weak, special snow flake.
The vast majority of professionals we deal with have been nothing but supportive and helpful, even sympathetic but there are always a few, (ironically the ones who in my view have most failed our wider family), who would like to define our ASD child’s difficulties by my ‘shortcomings.’
The fact of course that respite care was proffered but never organised, dangled like a mesmerising carrot for so long, just out of reach; the fact that our child required appropriate specialist schooling and wrap around care, the inevitable self harm, suicidal idealisations, violence against myself and our other children, the regular police involvement, ambulance call outs, CAMHS care and so forth, all accumulated into some persistent, momentous ball of hell unravelling at lightning speed had nothing to do with my break down at all. I’m *just* that sad and pathetic and attention seeking……
Mental health is still, despite the (much-needed) increase in awareness and highlighting by people like the Duke and Duchess of Cambridge, Prince Harry and high-profile celebrities, radio presenters and such like, a taboo, a dirty little secret.
Admitting that you have mental health difficulties, at least to me, feels a bit like shouting out the word VAGINA (or other awkward word of your choosing that doesn’t tend to come up in day-to-day conversation!) on a megaphone, naked on stage to a silently packed out Wembley arena, being globally transmitted by multiple satellites……
I can only speak for myself but having chatted to other friends going through similar concerns, I know they too feel a sense of shame, being perceived as somehow weak and feeble, lessened.
One of the most crucifying experiences I had in the latter months of last year related to the ill-health of our youngest son. Due to severe gastrointestinal difficulties culminating in losing 5 Kilos in a 4 month period, an extended hospital stay and the insertion of a naso-gastric feeding tube, the lead paediatrician (also our regular consultant for both G-Man and Minx) called a multi-disciplinary meeting to discuss both children’s health concerns (they share many similar aspects) and a plan going forward.
Present at the meeting (in addition to the consultant) were an Occupational Therapist, Physiotherapist, Dietician, Speech and Language Therapist, Community Nurse, Student nurse, Ward Sister, Disability Children’s Team Social Worker, Paediatrician, myself and Mr DNTW’s and a few others I can’t recall. I think the only person who wasn’t there was Uncle Tom Cobley*
The consultant outlined the various medical difficulties, asked professionals for observations and then having brief knowledge of our background family situation asked for us parents to outline relevant events over the year.
It’s trite but during that account, it did feel like time stopped. There seemed to be a palpable and collective withholding of breath as I relayed the events of significance. I did my best to remain factual, honest, hiding nothing but not (at least I don’t think) boring them to slumber and derailing the topic with a pity party for one.
I couldn’t make eye contact. I didn’t dare look up. My attempt to be detached failed. I cried; big, fat, salty tears of shame. And of course that always brings on the snot. So as I crumpled tissues and wiped and snorted my way through this hideousness, it brought with it crippling anxiety; the awareness that I had laid myself especially vulnerable to the people I need to work with for my children’s sake on a regular basis and I was in their eyes, at least to my thinking, diminished, fallible.
I must take pains to clarify that not for one moment do I think the consultant was doing this to be unkind or humiliate me. His request came from a genuine place: to what impact psychologically were (are) G-Man’s difficulties related to what is going on in his life and how as a collective could we address this for the best patient care.
It’s an ongoing situation. G doesn’t have an eating disorder; his medical ‘foibles’ are complex and require further investigation (even as I type a referral to Minx’s gastro team at GOSH is on its way), interwoven with understandable anxiety around food , the pain it causes and the bigger picture. He’s also under CAMHS.
That there has been a fall out from my ‘situation’ on all the children, there can be no doubt. Even now, if I am unwell physically or seem low the children are hypersensitive to me, like little meerkats on guard. It will take time for that to subside and what I am beginning to realise, it may never go away entirely.
I’m still recovering if that’s the right word to use. I feel frustrated with myself and angry. There are too many should’s/would’s/could’s (which my mental health team would rap me over the wrists for) – unhelpful words those – and I suppose like the layers of an onion, or perhaps the facets of a diamond, (definitely preferable to root vegetables in my eyes!) are to be evolved and discovered in time.
Therefore, just as the 4 c’s in diamond terms are all important – cut, colour, clarity, carat weight – we know there is no such thing as a flawless diamond; technically speaking even those given a flawless classification have the tiniest of blemishes or imperfections – (bet you will sleep better knowing that hey 😉) Having a love of all things sparkly and glittery, I’ll happily compare myself to a flawed diamond (less of the rough diamond please).
Perfectly imperfect. Needing a bit of a spit and polish.
- Uncle Tom Cobley origin:
“Uncle Tom Cobley and all” is a well used British expression to define (in slight derision) a lot of people. It’s akin to the expression “the world and its wife” and comes from from a Devon folk ballad (Widdicombe Fair in case you are really interested!) Uncle Tom Cobley (and all) is named as the last of a long (long!) list of men with a chorus ending Bill Brewer, Jan Stewer, Peter Gurney, Peter Davy, Dan’l Whiddon, Harry Hawke, Old Uncle Tom Cobley and all.
This year 28th February 2018 is the worldwide celebration of Rare Disease Day.
The very first ever Rare Disease Day was held in 2008 – a leap year so the perfect occasion for the initial 18 countries that signed up to celebrate.
Every year since, countries across the world have united to raise awareness of all things rare in terms of disease.
Last year 94 countries highlighted their commitment and support to raising rare awareness which is a pretty fantastic achievement. In fact that’s an increase in ‘productivity’ of 422.2222% for want of a better way of describing it!!! (I had to ask my eldest son taking A-level maths to work that out so if the stats are not right, don’t blame me!!) So it isn’t surprising that highlighting all things rare is close to the hearts and minds of those who live with a rare disease or have family members affected by a rare disease.
What does ‘rare’ mean to you? I googled the word rare in the Oxford English Dictionary and the top definition that came up as an adjective was this- “RARE: – of an event, situation, or condition not occurring very often. ‘a rare genetic disorder’,”
After that it went on to talk about rare steaks, uncommon birds and such like. Interesting I thought however that the very first sentence used to define ‘rare’ was in the context of genetic disorders!
Actually I think the use of the word ‘rare’ in the context of rare diseases is a bit of a misnomer. Why? Because at any given point 1 in 17 of us will be affected by a rare disease! Surprised? Think about this number in terms of the day to day and see how it relates to your experiences.
If you used public transport today (probably a bad example since much of the country seems to be under snow!) was it crowded? More than 17 of you on board? Probably. Bought a coffee in one of the many high street chains? Hopefully not 17 of you in the queue at any one time but probably more on the premises tucking into a hot drink or waiting anxiously for their turn.
17 is lucky in some countries, unlucky in Italy. 17 is the number of muscles it takes to form a smile, 17 syllables in a haiku poem. 17 is the least random number in a study conducted by MIT asking people to choose a number between 1 and 20. So again, not that rare.
A rare disease/condition in Europe is classified as affecting 1 in 2000; in the US fewer than 1 in 200,000. 80% of rare diseases are genetic in origin whilst others are as a result of infections (bacterial or viral) allergies, environmental factors, degenerative or known as proliferative eg cancers.
Of those diagnosed with a rare disorder a staggering 75% will be children. In fact, many of these children are a whole new breed of rare. So rare that their medical/physical and or cognitive difficulties don’t actually have a name!
Presently we know that there are approximately 6000 children born each year in the UK alone who have an UNDIAGNOSED condition. Of those, only 50% undergoing genetic testing on the NHS will ever get a diagnosis. And this is something very close to my heart because 2 of my children are undiagnosed.
Whilst we can indeed be enormously thankful that medical science is evolving and improving so rapidly – approximately 5 new rare diseases per week are described in medical literature – organisations like https://www.raredisease.org.uk provide essential support and a voice for those affected by a rare condition.
For those of us still in unknown murky waters, studies such as DDD – Deciphering Developmental Disorder https://www.ddduk.org or the 100,000 genomes project /https://www.genomicsengland.co.uk/the-100000-genomes-project/ offer families like mine the best chance of getting an answer as to why our children experience various difficulties and potentially the best way to manage their conditions, obtain treatment or assistance and potentially connect with families in a similar situation.
Families such as mine with children who are undiagnosed and/or ultra rare can often feel alone. SWAN UK http://www.undiagnosed.org.uk provide the only dedicated support network for families of undiagnosed children and young adults affected by a genetic condition. Hand on heart I can say that the support I have received by being a member (and now a volunteer parent rep) has been a veritable life-line.
Although my youngest 2 children have a myriad of medical terms/symptoms and diagnoses, to date we have no unifying “umbrella” that explains why they are affected. Their medical notes are vast. Between them they have confounded some of the brightest and most well respected specialists across the country. If I had a £ for every time I had heard the words ‘rare’ ‘atypical’ ‘uncommon’, ‘complex (the list could go on for a while, you get my gist) I would be a very rich woman.
If a part of the human body or a specific organ is supposed to work a particular way, you can pretty much guarantee with my kids that it won’t. If unusual presentations or the extraordinary were olympic sports, my kids would be gold medalists. Several times over.
So over the years, being able to talk to those who understand what we are going through, who have felt left out, different or isolated has been incredibly important and helpful.
If one in 17 of us will be affected by a rare disease in some way, IT COULD BE YOU
Strictly speaking I ‘adult’ every day, albeit some days more successfully than others.
Yesterday however, I ‘adulted’ myself to the nines.
So that you can feel comfortable continuing to read and for the avoidance of any misunderstandings, I should reassure you that this post is perfectly respectable and I won’t be revealing anything x-rated or of a delicate nature. You can all breathe a sigh of relief and resist the notion of poking out your own eye-balls/resorting to mind bleach for fear of dodgy pictures and such like!
I don’t know about you dear reader but the majority of the time I don’t feel old enough, responsible enough or even qualified enough to do the “adulting” parts of life. Certainly not with success and authenticity in any event.
Apparently however, being married having children, dog ownership (he might dispute that as pretty sure Milo thinks he owns me) a mortgage and all the other infinitesimal accoutrements of life plus being over a certain age means I automatically qualify as an adult… and there’s no resignation option (well unless you ‘check out’ entirely but that’s generally speaking a bit drastic)
Over the last year particularly, “adulting” has been a part of my life I’d quite like to have run away from.
Somehow wherever I hide, no matter how precisely I have chosen the deepest, darkest recess or how carefully I stick my fingers in my ears and shout la-la-la, the necessity for “adulting” always has a way of finding me….darn it.
And even before last years ‘annus horribilis’ I must confess that I had very often felt like a player in that game “Hedbandz” rather than a real adult.
For the uninitiated, the game compromises of a plastic head band device with a slot in which you stick a card in which states the object/word/profession and the wearer has to ask a series of questions to try & work out what or who they are.
For added ‘fun’ you can do a timed session so they have to guess in a specific time period or a specific number of questions. Adding alcohol into the equation for the ‘Adulty’ version I’m sure can only enhance the fun 🙄 But never in a million years would any card ever depict me as an adult; in fact I think I’m possibly only marginally up from a lemming….
Anyway, what I mean by my ramblings above is, in theory I suppose I should know I’m an adult but the actuality is very different and frankly I really don’t feel I’m quite mature enough to make life or death (somewhat over dramatic!) decisions on a day to day basis when I can barely decide what to cook for dinner!
So now I’ve long-windedly explained that, I’ll get to why I ‘adulted’ properly yesterday.
For those of you who have followed my blog for a while or who know me in the ‘real world’ you are probably familiar with my involvement in SWAN UK.
SWAN stands for syndromes without a name and it is the only specialist support network in the UK dedicated to families of children and young people affected by a syndrome without a name.
Having 2 children who are classified as SWANS – they are both medically complex and although they have multiple diagnosed difficulties/needs, we don’t have an over-arching diagnosis that draws everything together – getting support from SWAN UK over 5 years ago made a huge difference to myself and the whole family. In fact, if we had not joined SWAN UK (its free!) we would have had no idea where to even begin to think of living when we moved to the UK some 4 years ago.
Mr Def Not The W’s was allocated Leeds as a base when he joined his new airline but we knew nothing about the area, about hospitals, schools, housing and services and so it was to my trusty network of online friends that I turned to to seek advice and guidance in helping us formulate a plan.
Of course SWAN UK’s services go far beyond the things I mention above. You can read more about the vital support they provide here: http://www.undiagnosed.org.uk/
Over the years, the advice, reassurance, sense of belonging and community not to mention the family days out, coffee mornings and get togethers have been a huge source of comfort, support and a wealth of experience for me.
Back in 2013 it became apparent that holding down a job, even working from home as I had done since 2008, in a role that I could fit around my children, was no longer viable.
I eventually found that in order to keep on top of work I was in a seemingly endless cycle of being up very early, going to bed very late and working all the hours in between that weren’t occupied with the needs of the family including weekends. Something had to give. It was *almost* my sanity.
Although I don’t miss the crazy relentlessness of those days and we are fortunate in that we can (just about) manage for me not to work (and are hugely grateful at times to our parents for stepping in when an unexpected bill/costs rears their ugly head) I do miss that feeling of achievement and accomplishment.
So in September 2015 I decided I would like to try and do something useful with my life and if possible, give a little something back.
I recognised that combining this with (at the time) 3 children with extra needs was going to potentially be problematic. (Turns out we now have 4 children with additional needs, although our eldest is almost 18 and would revolt against the use of the word child!)
I decided to volunteer to be a SWAN UK parent representative for North Yorkshire…. if they would have me! And they did.
In fact, this was absolutely perfect because recognising that caring for medically/physically and or cognitively complicated children can mean life doesn’t follow the best, most carefully laid plans, SWAN UK are happy for parent representatives to volunteer as much or as little of our time as we are able to give. They also understand that sometimes we have to drop everything with little to no notice and have always made it clear that the needs/demands of our children, wider family and ourselves are paramount.
Over the years of being a SWAN UK parent representative, I have spoken at a Rare Disease conference about my experience of being a parent of undiagnosed children; I have contacted my MP about being part of an APPG (all party parliamentary group) to discuss and raise awareness of being undiagnosed and the implications that has on families as a whole, not just the affected individual. I have visited Parliament and spoken to a wide variety of professionals about the difficulties of living with the unknown and unexpected as well as assisted in organising days out to celebrate Undiagnosed Children’s Day (last Friday in every April) arranged coffee mornings and fund-raising events.
I don’t want to come across as holier than thou but aside from (hopefully) raising awareness and sign posting SWAN UK, it did make me feel useful and purposeful again.
It gave me an opportunity to step outside the role of parenting my own children’s medical management and hopefully gave a voice to others in a similar situation.
Anyway back to the reason behind the recent adulting: after something of a hiatus in 2017, I attended a professionals meeting at our local hospital.
Having contacted the Harrogate and District Hospital administrative team (via FB messenger no less!) I pretty much threw myself on their mercy. They kindly directed me to the Head of Paediatric Nursing and The Head of Paediatrics and we set up an appointment Gulp.😳
The fact that the head of paediatrics is also my children’s consultant was not lost on me and was more than slightly daunting.
Somehow, seeing me in a different role to G Man or Minx’s Mum felt strangely discombobulating; at least in the run up to the meeting itself and I was plagued with disconcerting dreams that I would somehow disgrace both myself and SWAN UK.
Nonetheless, I asked SWAN HQ to send me some literature and armed with this, my trusty, very bright pink SWAN UK bag, business cards (get me! I’m posh!!) and a lanyard, I put my big girl pants on (erm figuratively you understand, I haven’t gone totally Bridget Jones yet) and my “grown up” clothes on.
Being only 5ft almost 3 inches, adulting clothes usually involve heels for me. Fretting that I didn’t want to look like I was trying too hard or heading out for a slap up meal, I opted for heeled boots, a patterned skirt & top, with a bit of jewellery and a swish of eyeliner & lippy.
On the inside I may have felt about 5 and was quaking like a jelly but externally I *hopefully* projected confidant, knowledgeable and approachable….
Obviously I couldn’t really ask those present at the meeting if I had successfully captured that but my audience were enthusiastic and receptive. They were keen to read and then display the literature I provided and told me that they would be disseminating the information to fellow colleagues, the Paediatric ward, Child Development Centre, Parents Room and Paediatric clinics. I also got agreement to have a stand in the foyer of the hospital to coincide with Undiagnosed Children’s Day in April. So all in all, I think it went well.
I came away feeling positive and uplifted and like a real-life proper grown up for the first time in a very long time. I’m pretty sure I didn’t have my skirt tucked into my knickers at any point or commit any other embarrassing epic social faux pas’s so all in all winner winner… I hope…. 😊
I don’t suppose either of you will ever read this because if I may borrow a phrase from the pop group Journey: “I’m just a small town girl”… and thereby vastly unimportant in the stratosphere’s you preside in.
Strictly speaking President T, I guess you would classify my proclamation as ‘fake news’ since being the wrong side of 40, I’m playing a little fast and loose with the use of the word ‘girl’ but I digress.
So what’s the point of this post if you won’t ever get to read it or even be aware of it on the most peripheral of levels? Honestly, I don’t know but what I do know is if I sit back, say nothing and just let the world continue turning without speaking my mind, then I’m just as complicit and negligent as so many of those who DO hold positions of authority and have the real power to effect change – notably the policy makers and advisers to you important people. Call me naive but surely even they have to report back on the dissension of the people, even though it’s not necessarily what you want to hear?
I’m equally sure the voice of the collective masses can’t have escaped your notice when we annoyingly clamour so loudly. In fact I know you are at least partially aware given some of your recent tweets but more on that later.
What did you do on Saturday night Messrs Trump and Hunt? I don’t see either of you as being of the Netflix and chill persuasion and I assume there are only so many important dinners, galas, schmoozing and events that you have to attend. Surely even you get the occasional Saturday nights to hang out?
If the (un)popular press are to be believed, at least one of you is partial to a Maccie D’s so perhaps you put your stretchy waste band joggers/onesie one and indulged in fries and made friends with Ben & Jerry’s… In any event, I bet you didn’t do this: That’s what my Saturday night looked like – preparing medications and feed for a 24 hour period for 2 medically complex children.
Please know I don’t post these pictures for the sympathy vote; it’s not a pity party for one but as I see it, a picture (or 3) paints a thousand words and sometimes replaces the needs for words entirely. Sorry though, you don’t get that lucky just yet. I’m not done with the rhetoric.
You see as I hummed my away around the kitchen opening and sorting various medical supplies, Dua Lipa on loud, (music concentrates the mind!) I had a mini, well actually fairly major epiphany.
I have said it before and I’ll say it again: I’m so incredibly grateful to our amazing NHS that all these items my children need, depend upon to LIVE are “free.”
I am lucky, for want of a better word, that my children can presently receive urgent care and treatment as well as day-to-day management of their various issues as and when they need it; that I don’t have to choose between putting food on the table or trying to scrape together the funds to pay for specialist equipment, feeds, even consultations with healthcare professionals. But how long will that be the case?
Never was I more aware of how precious such services are as when I had a conversation with one of Minx’s community nurses last week. One of her pesky stoma’s that was surgically resected in December last year (yet more free care) has unfortunately prolapsed again.
This is problematic for numerous reasons: pain, bleeding and the fact that the prolapse occurring even as a first incidence had the medical bods scratching their heads, let alone for a second time. In fact in all the years our community nurse has been in practice and with her vast case load, she’s never had this happen to even one of her patients 🙄
I suppose it’s just another part of Minx’s foibles uniqueness but it’s really time-consuming and causing her distress to have to change dressings (& clothes at times) and clean up several times a day.
Although we have reassured her this is in no way her fault and clothes can be washed, it’s not ideal. As she gets older and more body aware, she is cognisant of the fact this is not something her contemporaries face and her worry and distress increases. We take great pains to build her self-esteem and celebrate how well she is doing but it’s a fine balancing act not to minimise her day-to-day difficulties and yet promote her ‘ordinariness’ – something key to her in wanting to be the same as everyone else. So we need to manage this the best we can.
Our trusty nurse assessed how we should proceed for now before our next trip to Great Ormond Street and set about contacting our GP to get prescriptions for various lotions and potions, dressings and even support garments. Again free.
I assured her I had a stash of dressings at home from past dabblings in stoma management and reeled off a list of supplies that would make a Casualty (TV show) prop-dresser weep.
It’s always advisable to have supplies in hand. Despite our best endeavours to keep both her stomas clean and infection free, by virtue of the fact that it’s a non sterile opening into (& out) of the body and that the body sees it as a foreign object, it’s likely that infections or skin/tissue difficulties will tear their ugly heads at some point in time, especially post-operatively.
Only for one tiny moment did I hear the tiny but sharp intake of breath she gave. And if I hadn’t questioned the community nurse on it further, I’m pretty sure she wouldn’t have said a word.
Her almost imperceptible gasp related to the dressings. These babies on the left to be precise:
You see we have a stash of the foam pad dressings on the left which are used predominantly when a wound/stoma site is infected or particularly (watch out for technical word) “manky.”
These rather innocuous looking, individually sealed dressings are impregnated with an anti-microbial property which helps speed healing, prevent colonisation of bacteria and generally fend off/clear all sorts of overall nasties.
Because I pushed, the community nurse explained they come with a price tag of £2.50 … per dressing… and we have 2 boxes of them, approx 20 per box if I recall correctly. And guess what? I got those “free” from our pharmacy too. Prescribed “free” via our GP.
The dressings on the right of the picture do a similar job at the cost of 9p per dressing so it was more than understandable and acceptable to me when the nurse asked if I would mind utilising those in the first instance.
She stressed that if acceptable progress wasn’t made quickly we should have no qualms switching to the other kind and if I hadn’t questioned her, I’m pretty darn sure she wouldn’t have said anything else on the subject. At no point was I made to feel any kind of guilt or justification for utilising such extensive and expensive resources.
I’m sure those far more worldly than I will point out how in reality none of the aforementioned items or services are “free” and yes, yes I’m well aware that as tax payers, we pay in towards a system that (partially) funds all this but for all intents and purposes, at the point of service delivery, my children can utilise what they need with out exception, without paying and are thriving as a result. Again how much longer will we have this assurity?
Quite frankly Big D, I don’t profess to fully understand all the ins and outs of your heath-care system in the US. But I know enough to be afraid and I dread to think what would happen to my children and for that matter, to my entire family if we lived in the US. I’m pretty sure that at least some of the family would be uninsurable.
What I do know from my friends across the pond are their concerns over yout 2 tier system that favours the wealthy and knee caps the poor; the eye watering medical costs, deductibles, exclusions and/or restrictions on cover that penalises an aging population or those who are medically and physically complex. The demand to know even before treatment can commence as to who provides your medical insurance and what level of cover you have scares the living daylights out of me!
The Affordable Care Act ‘- Obamacare’ – certainly rung the changes and whilst far from perfect, seems to have provided a more level playing field for all walks of life. That you seem hell-bent on repealing it come hell or high water is almost certainly a retrograde step that disincentives healthy individuals from paying into the system, thereby ensuring rising costs for those most in need of protection.
The furore and uproar from us Brits in response to your recent declarations regarding our much-loved NHS may have come as something of a surprise to you. You caused ructions when you dared to criticise our beloved universal health care system and you crossed that uniquely British line that allows us to be both hyper critical and yet extremely proud of British institutions all at the same time.
I think you neglected to bear in mind the fundamental point of the NHS when you tweeted about our front line medical personnel and equally incensed members of the public who recently marched in protest with the “Fix it Now” campaign – the sheer and utter outrage at the lack of funding for services.
The NHS was created out of the ideal that good healthcare should be available to all, regardless of wealth. When launched by Aneurin Bevan on July 5 1948 its three core principles were:
• that it meet the needs of everyone
• that it be free at the point of delivery
• that it be based on clinical need, not ability to pay
Of course it is only right that those core guiding principle are still held true and dear.
That at present our health system is in crisis is not in dispute. The year on year lack of real term funding, the austerity measures, closures, cuts and the insidious but increasingly louder suggestions of privatisation lurking in the wings are of grave concern to anyone with a modicum of sense and compassion.
Whilst you Mr Hunt publicly denounced The Donald’s tweets and are “proud of the country that invented universal health coverage” regardless of bank balance, I think it’s fair to say those on the front lines and those of us trying to read behind them are all sceptical that you intend to maintain such partisan beliefs when it comes to delivering what the NHS really needs.
I guess it’s even harder to believe you will abide by its guiding principles given that you apparently co-authored a policy book back in 2005 called Direct Democracy: An Agenda For A New Model Party.
It is only fair to point out that I suppose this was part of a collection of writings by a group of Tory MP’s and the book was presented as a whole; chapters are not marked with individual authors; nonetheless it stated:
We should fund patients, either through the tax system or by way of universal insurance, to purchase health care from the provider of their choice”
Whilst this ‘gem’ was amongst many varied ideas, the policy pamphlet called for the NHS to be replaced by an insurance market style system and even went so far as to outline how this could be achieved, stating that the private sector should be brought in:
Our ambition should be to break down the barriers between private and public provision, in effect denationalising the provision of health care in Britain.”
So you will forgive myself and my contemporaries if we are more than a tad sceptical of your motivations and your purported promises to main the core principles that the NHS was built on.
It was widely reported in early January that Chris Hopson (chief executive of NHS Providers, the go between between health trusts and the Department of Health) wrote to you calling for extra investment on a long-term basis to address the “fragility of the wider NHS”.
Mr Hopson’s three-page letter requested a commitment to increase the NHS budget to £153bn by 2022/23 – the sum that the Office for Budget Responsibility said is needed, given the projected increased demand for services.
His letter went on to state “The NHS is no longer able to deliver the constitutional standards to which it is committed. We need to be realistic about what we can provide on the funding available.”
You agreed that funding has to be increased….but how this will be achieved still remains a closely guarded secret. Whilst researching facts for this blog piece, I found scores of references, much hyperbole and conjecture but no real concrete plans. Everything seems to be up in the air and awaiting clarification. Smoke and mirrors. Maybe even our own British take on “fake news?”
Certainly a lot of your past ‘promises’ on how services have improved, how more positions have been created with a larger workforce in place don’t stand up to scrutiny when you dig a little deeper.
Perhaps unsurprisingly but extremely scary, when typing your name into google Mr Hunt, plus the words NHS, the most popular ‘hit’ that came up was privatisation….
Considering your much waited plans are going to be the biggest and most encompassing strategy for the NHS since the early 2000’s, I won’t be alone waiting with baited breath…and fear….