The Devil wears polyester….

Warning: RANTY post. There you are: forewarned is fore-armed… on if you dare

Well we have hopped, skipped and jumped into October and Christmas will be here before we know it….yadaah, yadaah, yadaah, bah humbug etc. Yes, in theory I know actually it’s 80+ days away (thank you FB friends who have already started sharing the countdown, yay you!)  but it will likely STILL be here before I get any kind of significantly helpful response from those that have THE POWER  and THE ANSWERS. Getting jiggy with the caps lock on so early into a post can never be a good sign can it?

I am sure that somewhere high up on an ethereal, fluffy cloud sits a Machiavellian figure who is toying with my life and those of other special needs parents at a whim. He or she is better suited to Dante’s inferno and the seventh circle of hell than the prestigious heights they have reached. The proverbial spanner in the works if you will. This shadowy, visceral image possesses an evil cackle and works less in the spirit of “Cinders, you SHALL go to the ball” and more in the vein of “let me see how quickly I can bu@%er up your day with one flick of my cloven hoof.”  The compter says no if you will.

After a peaceful (relatively, all things are relative, literally and figuratively when you have 4 kids 😉 summer of minimal appointments, September was ushered in, less in a blaze of glory but more of an echoing ricochet as the appointments letters thudded through the letterbox and created a significant “elf and safety” implication on the doormat.

The second day back at school manifested in an appointment at lunchtime. Slightly unhelpfully, Minx crashed out in the car on the way there and could not be woken during or after. Embarrassing phone call to school: “Erm, yes hello, I know it’s only the 2nd day back but Amelia’s asleep and won’t be coming back today”….oops. Still that is already a hazy recollection as I have spent the time since the kids went back to school largely being their personal assistant and dogsbody and not just in the “delightful” sense that is motherhood.

Having 3 children with extra needs isn’t just draining in the way that having multiple children is.  Sometimes it’s downright poop; not even because of the extra quirks that they bring to the party (or because of actual poop, although that features quite a lot in my life!) but because of the amount of admin, chasing up services, paper pushing and arguing  polite requesting that I have to do on their behalf to get heard, seen and helped.

This is by no means unique to my situation, nor is it a pop at the NHS who have battles enough to juggle with over stretched resources, services and staff and little in the way of cash injections or morale or indeed praise where it is due. But sometimes, often times, the system seems so crazily orchestrated, it’s enough to make a grown woman weep….or at least utter curse words that would make her Dad cross and a sailor blush.

Our local hospital, I cannot praise enough from the services that we have accessed so far. G Man being the accident prone child that he is has already visited the hallowed portals of A&E on a Sunday night and had multiple X-rays. A 4 hour wait was signposted and therefore expected but the staff could not have been friendlier, more helpful or apologetic about the delays.

That night was a real eye opener for me. You know those people who go in to £1.00 shops and ask repeatedly “so how much is this then?” and you marvel that they are actually allowed to tie their own shoe laces and drive cars? Well in A&E, yep, a lot of similarities from the motley crew known as the general public. How the lovely, receptionists kept straight faces,  smiles a plenty and the same even tone replying to questions like “well what ARE they doing back there?! It doesn’t seem very busy! What do you mean there are ambulances arriving, I can’t see them!” or “If I come back at 11pm, can you just slot me in then, save me having to wait around here?” “Do YOU think I need an ambulance?” and “She’s been seen before me and I got here first!”

We have benefited from the expertise of physiotherapy, occupational therapy, speech and language, dietician, orthotics, orthoptists (don’t get the 2 mixed up!) gastro-enterology and neuromuscular, all locally and countrywide, to name but a few and largely been seen quickly and efficiently.

We have utilised the local CAMHS service repeatedly – Children and Adolescent Mental Health services. CAMHS nationwide have seen vast budget cuts and senior, long-serving staff face redundancies a plenty, despite this being an area of ever-growing number of referrals, sadly stretched by the increasing demands of depressed, anxious, self harming and worse still, suicidal children and teens that require the urgent interventions only provided by this department or in emergency, A&E.

Nonetheless, recently trying to get hold of our paediatrician to write a script for one of the Minx’s meds that can only be supplied by a consultant rather than a GP  would have been funny if potentially it wasn’t so serious.

I am led to believe that the hospital previously had 5 paediatricians; it would seem we are now down to 3 …and possibly a half….although quite how that works, I’m not entirely sure and am presuming it’s more to do with job sharing/shared services with other regional hospitals than some poor medical bod that has been spliced in 2.

I always request the particular medication concerned in plenty of time since I am well aware that it takes time to order in via the pharmacy – it’s not a stock item due to short shelf life.  Added to this, of   course the pediatric Doctors themselves are incredibly busy and don’t just sit around waiting for me to request scripts. Nor is Amelia their only patient and our own paediatrician has admitted that he gets so many e-mails and paperwork to deal with on top of seeing real life actual patients in clinic and ward rounds, that some requests can easily get forgotten unless he is hounded on a regular basis.

I had also previously sent him some video clips of  the odd breathing issues that Minx has developed, especially after a long, busy day and asked him to review, hopefully to reassure me that I was being overly concerned and neurotic. Amelia’s bowel and gastro issues having become yet more complicated and following review with Great Ormond Street in July, (follow-up still awaited but that’s for a post at later date) I also wanted to discuss my concerns with him

Having chased for her medication repeatedly, I was getting increasingly desperate for new supplies and eeking out what was left in the bottle. I plagued the living day lights out of the hospital pharmacy staff – “Hello, yes me again, has the script been sent down? No, erm, pleeeeeeeeaaaassssseeee can you order it in any way and then just hold it until DR XXXX sends the correct details down to you????? Please, please, please? I’ll be your best friend, invite you to my party and share my magical unicorn toy with you? Hello? HELLO….”

I’m guessing the paediatric secretaries drew straws as to who had to pick up the phone or reply to my e-mails – “oh blimey, that mad one is on the phone AGAIN; it’s not my turn, you do it, NO YOU do it….” At this point, I was so desperate for supplies, I actually offered to camp out in their offices clutching a script pad and then pounce on the unsuspecting Dr, tie him to his chair and make him write the damn script with his teeth if necessary. I was only half-joking…

Eventually after 2 weeks of phone ping-pong, cajoling, crying and begging I had THE phone call from pharmacy telling me to come and collect (& probably never darken their door step again); I thanked the     secretaries and joked that I wouldn’t hold my breath for a call about the breathing or gastro issues. To our paediatricians credit, despite his intense work load, he phoned me in his own time at 7pm to go through my concerns.

Unfortunately, I wasn’t being neurotic and he was at a loss as to explain what is going on but concurred it wasn’t normal or habitual and had forwarded it to the neuromuscular consultant at the Leeds General Infirmary (LGI)  for their overview and advice…..I’m still waiting 2 weeks on….sigh.

As for the bowel/gastro issues, this has necessitated yet another referral to a different Leeds team and also the specialist bowel team. We are collecting referrals and specialists these days like kids collect stickers and trading cards.

So much of my day is spent liaising between Amelia’s various Doctors, teams and specialities. We have lots of jigsaw parts but no box and we are not getting any further in terms of the BIGGER picture, the diagnosis, the whats, wherefores and whys and that as the parents of children with special needs is the crux of the matter.

As I have mentioned in past posts, we have lots of individual names of conditions and therefore lots of different departments to see but trying to get each one to co-ordinate with another, to schedule appointments at clinics on the same day or same week if they are further afield and we need to stay over, is nigh on impossible so I end up trying to co-ordinate my own schedule, space the appointments as either best I can or as close together as possible.

We’ve had clinicians disagree with one another and contradict each other. All very well when you are face to face in their appointment but when they won’t liaise with each other, or are at different hospitals, you as the parents are left wishing you had a medical degree, more time, better research facilities (possibly a baseball bat) and feeling demoralised. It’s an isolating, lonely and frustrating place to be.

It reveals an enormous, all-encompassing black hole greedily waiting to swallow you up, especially on those days when your endeavours to fight the good fight, to keep on battling and trying to move forward feel impossible. When your life blood seems to have thickened to sluggish treacle and you are so tired and worn out, just putting one foot in front of the other seems a herculean effort.

It’s especially heightened for those parents whose children cannot communicate and you have to second guess every little thing, whether they are in pain, discomfort, frightened; when your children don’t/can’t sleep or are so medically fragile their life hangs in the balance; how do you move forward, keep up the impetus, just keep going?

Enter SWAN UK. SWAN UK (Syndromes Without A Name)  This marvellous, wonderful, eclectic  group of people have been my life-line over the last 3 or so years. The members here are all parents of children who either don’t have a diagnosis or didn’t have one initially.

Since time and medical science have moved on, new tests have progressed, many parents have reached that particular mile stone of a genetic (or otherwise) diagnosis for their child. For some of course, a diagnosis is really just a bunch of letters on a wonky chromosome and with so little further information to go on and so few other children  affected, they remain just as in the dark; for others it brings relief, reassurance and further places to search for guidance and reassurance. For others it only confirms devastating and heart achingly awful news but through it all, we are in it together. In fact the unofficial  group motto is “once a swan, always a swan”  so most people elect to remain in the group even with a diagnosis. The motto also applies to the families of the ones who gain their angel wings far too soon.

Whether you are a regular poster, a lurker (as I was for many months before I plucked up the courage to post and talk about our family situation) an old hand or a newbie, there’s always someone on-line, day or night to welcome, console, rejoice or share experiences with. It’s a community I feel privileged and proud to be part of with a dynamic like no other I have ever seen.

Though our children may all have very different needs or concerns, there is a real sense of camaraderie, a very British post-war sort of, we are all in it togetherness;  SWAN UK is much bigger than just a Facebook group or an opportunity for parents to get together on days out (thank you to supportive corporate bods for funding these hugely enjoyed and worthwhile events by the way). It’s a real community and comes under the umbrella of the Genetic Alliance UK.

Without a diagnosis, parents can find it difficult to get referrals to much-needed services, to obtain equipment and support, vital not just to their child’s development but also health and well-being (and even to the parents’ health and well-being in cases such as where hoisting/lifting equipment is needed) – shocking really to think of this in a country as blessed as the UK isn’t it?

You can be in a quagmire of doubt and not know where to turn. Professionals can discharge you if you don’t fit neatly in a tick box but SWAN UK will offer support and guidance to all parents of undiagnosed children and sign post them to obtaining the services that our children have a statutory human right too.

So when SWAN UK asked recently if any members would like to sign up as parent representatives, I said YES! If you would like me to stand up and be a bit gobby (as politely as I can be obviously) and raise awareness of this totally fantastic group to both parents and professionals, then BRING IT ON.

Some would argue they foolishly said yes and now I am looking forward to meeting people new and old, professionally and personally. Hopefully helping new parents on this strange old journey to feel supported, less isolated and have somewhere to turn and highlighting to those Doctors and nurses, consultants and therapists,  how blummin frustrating, difficult and all absorping life with an undiagnosed child can be and how they in their professional capacity can make our lives a teeny, tiny bit easier…. so wish me luck……plllllleeeeeeeaaaaasssssseeeee? I’ll be your best friend, invite you to my party, share my unicorn toy…hello? HELLOOOOO?

Until next time…


Jelly tot consuming Mother of 4 kids, 1 cat, 2 dogs. Wife/leader in chief of our tribe. Autistic & medically complex kids keeping us entertained, on our toes & never bored...lover of all things sparkly, handbags & shoes. Proud to be a “difficult parent” in the world of SEND

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