Postcode Lottery

I’ve always thought of myself as fortunate. Opportunities have landed in my path. My parents bought a house in the catchment area for a good school. My teachers saw to it that I got into a good university. That good education got me a job that I love. I have three beautiful children. My husband works hard so that I don’t have to choose between my career and spending time with my children. Childbirth aside, touch wood, I have never needed a night in hospital. I have not yet been reliant on benefits. We have been able to choose, get a mortgage for, and afford a deposit on, a perfect home in a stunning part of the world.

Benjamin looking contented, wearing a warm jacket in a SN buggy

Comfy in his new buggy

Now we have Benjamin, still, we are fortunate. The healthcare he receives is second-to-none. He gets all the therapy in the community that he needs. All the equipment that he requires is also provided (albeit a little slow to arrive at times). He attends a wonderful SEN nursery and will attend a wonderful SEN school. He has a dedicated pair of support workers who keep him safe (and give him many, many cuddles) whenever I am not with him. Social care-funded agency carers help us for six hours a week, Benjamin gets two nights a month in a specialist respite care unit, and we have the support of our children’s hospice whenever we need it. Benjamin gets disability living allowance, we have a car through Motability and a blue badge. Our house will soon be adapted to suit Benjamin’s needs and the local authority will fund 80% of the cheapest option as quoted by the cheapest supplier; moreover, the work will should be completed by the time we really need it! Yes, we had to fill out some forms and write some letters. Yes, we had to dig around to find out what we were entitled to and we had to fight a little to get some of that. Yes, once or twice I have had to write to my MP and the local paper. But, generally, we get what Benjamin needs and what we as a family need. We are indeed fortunate, or so I thought.

Benjy in his kitchen chair, with Caitlin sitting on his lap, her hand on his chest as if doing chest physio

Expert physio

Then, I started talking to other parents. Some families, in local authorities not too far away, get 12 hours nursing care a day. Some families get additional care in the school holidays. Some families received an automatic referral to psychological support to help them to deal with the trauma surrounding giving birth to a child with severe disabilities. Some families get twenty new syringes a day. Some families get liquid drugs so they don’t have to faff around crushing and grinding tablets to within an inch of their life to ensure they don’t block the feeding tube… I started to feel less fortunate. I started to feel jealous.

Then, I started talking to other parents. Some families’ only respite centre is being closed down. Some families have to self-fund essential equipment such as a suitable wheelchair. Some families can’t get a blue badge even though some days their child can’t get out of bed. Some families have to fight and fight and fight and go to court and pour every ounce of their energy and resources into fighting to get their child into a school that simply meets their needs. Some parents are forced to give up that battle, give up their career, and home-school their children. Some carers are carrying 50 kg children up and down stairs, or risking their backs lifting them into the bath because adaptations plans have stalled. Some families are crammed into a single room in a bed-and-breakfast because their local authority can’t find, won’t build, or refuse to adapt, a suitable property for their needs. Some children have seen half-a-dozen different paediatricians and never the same one twice. Some children have been discharged from all the services that might be able to help them. Some parents are accused of faking their child’s condition, or of poor parenting. Some are pushed so close to breaking point that they fear having their children taken away… Some families have their children taken away. I started to feel like the luckiest mother on earth. There, but for the grace of God, go I.

Why does it have to be like this?

Why do families at different ends of the same street, let alone different ends of the country, have to meet different criteria to get the same support? Why do families in very similar circumstances receive such vastly different levels of care (if any)? Why are we placed in these situations where we feel jealous, or guilty; where we have to compete? Why can’t there be a level playing field? Why isn’t access to support – health, education, social care, housing, advocacy – based on need and not on where you live, how deep you dig for information, how hard you’re prepared to fight, how well educated you are, who you know, who you can afford to employ, whether you are able to give up work, even whether you earn little enough to qualify for support (yes, it can work both ways)?

A circle of reusable nappies in a range of pastel shades

‘Why does it have to be like this?’ I asked Jenny Gilruth MSP at a recent round table discussion at the Scottish Parliament, Getting it Right for Parents of Children with Exceptional Healthcare Needs. She said I couldn’t expect everything to be centralised. But I’m not asking for provision to be centralised, I’m just asking for the rules, the criteria, the tick-boxes, the ‘decision making tools’ to be standardised. It could be as simple as saying ‘which area provides an example of good practice in terms of [insert essential service here]? Let’s employ their strategy across the board.’ How can it be so difficult to ensure, for example, that all children with continence needs should receive enough suitable continence products to meet their needs from the same age? Presently, some NHS boards provide pads from age three, others age five; some areas won’t supply pull-ups and others won’t supply cloth nappies; and some children get three pads per day while others get an unlimited supply. It should be as simple as every relevant organisation paying more than lip service to GIRFEC (Getting it Right for Every Child, in Scotland, or its English and Welsh equivalent Every Child Matters).

We might live at different ends of the country, but unlike some politicians, policymakers and bureaucrats, SEN parents do talk to each other. We know there are discrepancies, huge discrepancies. We share as much knowledge and as many tricks as we can to help each other out, to level the hideously uneven playing field we find ourselves on. We try to get around the borders that divide us and to fight as a team, while the system tries to make us compete to be the loudest voice clamouring for limited funding and limited support. We know it’s a postcode lottery, and we know it’s all our children that are losing out.

Lottery tickets, a pen, Euro notes and coins

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Just a cold

The males in our household have been stricken with a cold. My husband has adopted the standard attitude of shuffling around the house looking sheepish, occasionally being wracked by paroxysms of coughing that needlessly shake his entire body, and ostentatiously ironing handkerchiefs and boiling kettles for uncertain purpose. This in itself is pretty hard work for the females of the family (with the exception of the guinea pigs who seem remarkably unbothered by the whole thing).

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No preschool today

Benjy, however, takes it to another level. It usually begins with a sudden dramatic increase in secretions (i.e., snot). During his morning physio routine, a white froth starts pouring from his nose. He’ll need suctioning every half an hour, day and night, rather than twice a day.

He’ll be uncomfortable – as you or I would be – but he cannot tell me so. Instead, his muscles will tense, he’ll be stiff, hot, jumpy and irritable, making me fear a seizure. He won’t sleep, and neither will I.

After a couple of days the secretions will thicken and he’ll wake choking in the middle of the night. This is the scariest time, frantically suctioning a frightened boy to clear enough of his airway so that he can breathe. His heart rate rockets and so does mine. I try to remember that, despite all his complex requirements and specialist equipment, Benjamin is still just a little boy with a cold. I give ibuprofen and Calpol, drop Olbas oil on his pillow and place bowls of steaming water in his room.

Then the wheezing starts – ‘viral induced wheeze’ they call it. Although his secretions are clearing, his oxygen levels are dropping. So it’s sixteen puffs of his salbutamol inhaler a day – twelve at scheduled times and four to keep in reserve for that middle-of-the-night panic.

A week in, and when most of us would be starting to get over it, the rest of his system starts to respond. This is what would have put us in hospital last year but now we are (hopefully) equipped to deal with it at home. With Benjy – and this is typical of jejunum-fed children, I’m assured by our patient specialist gastrointestinal nurse on the phone – his output of stomach juices and bile increases dramatically. So dramatically that they can’t all drain out into a bile-bag, but end up being vomited out of his mouth and nose. Now I know all our kids are superheroes, but sometimes I really wish Benjy’s superpower wasn’t firing green slime out of his nostrils onto his poor unsuspecting support worker…

IMG_20171220_221317_051.jpgWith the vomiting comes an increased risk that Benjamin will aspirate his stomach contents into his lungs and cause a chest infection. Our amazing team of ‘rapid response’ specialist respiratory physios come to the house to assess him and take swabs for analysis. We embark on a cause of strong antibiotics in addition to the prophylactic antibiotics that he is on permanently through the winter, just in case. We put Benjy to sleep on his side (worse for his back, better for his lungs). I ‘sleep’ with the video-monitor inches from my face, ready to leap up when I hear him cough. I wonder how we’ll manage in the New Year when we move him to a downstairs room.

The antibiotics have their usual effect of (without going into too much detail here) producing nappies that require an entire change of clothes, several times a day. I resort to sitting him on an incontinence pad to save washing his chair, car seat, or buggy. And I double his daily dose of Imodium. But he goes 48 hrs between bile-vomits, which is an improvement. We feel safe to send him to our wonderful NHS respite centre for a couple of nights. I feel glad they will be dealing with the nappies. I keep my fingers crossed they don’t panic and send him to the hospital.

I don’t know how much it has cost the NHS to see Benjamin through one simple cold – providing us with a sats monitor, suction machine, catheters, nebulisers, inhalers, medications; giving us the expert assistance of doctors, pharmacists, nurses and physios. I know it’s cost our family about a fortnight’s sleep, two swimming lessons, one meeting about Changing Places toilets and a whole lot of Christmas shopping.

But for all of us, this is infinitely better than having Benjamin in hospital, splitting our family up and putting him at risk of catching all manner of other winter bugs. I’m proud of what we’ve achieved, and I’m grateful for the equipment and training we’ve been given and the trust that has been placed in us, to keep Benjamin safe at home. Team Benjamin has risen to the challenge, so far.

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On the mend

We are the 57%

A few days ago, in a fit of frustration, I churned out a quick post about parking. Exciting, huh? But to my surprise it’s received over 11,000 views and generated a whole lot more Twitter traffic than I’ve ever had before.

So, what gives? Even posts I’ve sponsored on Facebook rarely get more than a few hundred views. Of all the posts I’ve written – on the difficulties of being undiagnosed, on the amazing work of children’s hospices, on the sanctity of human life, even on the importance of properly accessible toilets (which are certainly more scarce and arguably more important than parking bays), it’s the one on parking that’s sparked the most interest. I’m not bragging; I’m gutted.

So, what gives? Sure, in the UK we love our cars. We talk about the traffic almost as much as we talk about the weather. Victoria Coren Mitchell, presenter of Radio 4’s Women Talking About Cars, said the other day that for women, especially, cars represent a very special combination of both freedom and safety. For people with disabilities, cars probably mean even more in both those respects. Having only had one for six months, I love my Benjamin’s car, although I wish we didn’t have to use it so much. But I certainly don’t love parking – once I’ve got within a yard or two of the kerb I just want to shut the door and forget about it.

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If this was a disabled parking bay I guess I’d be tempted to park in it too…

So, what gives? Sure, in the UK we hate being told what to do – whether by a traffic warden, or Brussels, or a yellow line on the road and a blue badge in the window. But does that fully explain why I struck such a chord (or hit such a nerve, depending on your side of the debate) with a post about parking?

My theory is, it’s because parking is one of the few everyday battle lines between the disabled and the able. In fact, it’s one of the few situations in which disabled people are actually visible in our society. Yes, the able can complain about those of us ‘scrounging’ benefits. They can complain about us giving birth to children who will be nothing but a drain on society. They can complain about the effect inclusion has on the educational achievement of their mainstream children (hint: bugger all, apart from possibly making them less judgemental than their parents). But unless you actually know a person with a disability, you are unlikely to come up against these issues every day. Yet even if you don’t know a person with a disability, you probably park in a supermarket, school or public car park on a fairly regular basis.

And that’s the root of the problem really, isn’t it. Many people simply don’t know a person with a disability – or don’t realise they do. The Disabled Children’s Partnership, a coalition of charities campaigning to improve support for disabled children, young people and families, last week launched a new campaign called The Secret Life of Us. The aim of the campaign is to change the fact that an amazing 43% of the British public don’t know anyone who is disabled.

In parking, the 57% of us who have a disability, care for someone with a disability, or know someone with a disability, come directly up against the 43% who, through no fault of their own, don’t think they know anyone with a disability. The former know all too well the need for disabled bays, and cannot understand why anyone else would park in such spaces when they are so clearly needed. The latter cannot see the need for disabled bays, consider them an unearned privilege – particularly if we are not in a wheelchair, do not look disabled, or have children that are small enough to lift – and don’t see why they shouldn’t use them when it suits them.

So maybe this is where we should start. At the battle line. At one of the few places where the 57% become visible to the 43%. Disabled parking spaces are all about accessibility. Without accessibility it is very hard to have inclusion. Without inclusion it’s impossible to have integration. Without integration, it is extremely difficult to foster understanding. And without understanding, well why the hell shouldn’t I use that disabled parking space to save me a couple of minutes of my valuable time as a contributing member of society popping into the shop to get a pint of milk? It’s a vicious circle.

The Secret Life of Us campaign aims to break that circle, to help us – the 43% and the 57% – get to know one another. Now, the 43% can’t do anything about this – they don’t know we exist, remember. Their hands are tied. It’s up to us, the 57%, to start building awareness, to be brave and not shy away from sharing our stories and showing our lives in all their flaws and their beauty. Because everyone’s life – disabled or not – has flaws and it has beauty.

If you read my blog (thank you!) you’ll have a glimpse of that: stressful, sometimes traumatic, hard work, rewarding, ever-changing and featuring rather a lot of bodily fluids… But there’s a lot more I can do. Everyone in my community knows Benjamin, but not everyone in my community knows that I had anorexia in my twenties. I’m in awe of friends who are becoming more open about their mental health – in person and on social media. Social media certainly has a role to play here: the ease with which we can share The Secret Lives of Us – anonymously if we wish to – makes now an ideal time to bridge the gap between the 57% and the 43%.

I’m not saying we all need to go around shouting about our bowel movements and breakdowns and whether we’ve had breakfast all day long… but if the 57% can share a little more and the 43% can listen a little more, maybe we can all judge a little less. Because parking shouldn’t be a battle line. There shouldn’t be any everyday battle lines. ‘The disabled population is the world’s largest minority of which anyone can become a part at any time.’ We are the 57% – and one day you might be too.

If you would like to be involved in the Disabled Children’s Partnership, you can sign up at http://e-activist.com/ea-action/action?ea.client.id=78&ea.campaign.id=71897, follow it on Facebook and on Twitter. Share your stories, and read others, using the hashtag #SecretLifeofUs

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I’ll let you into a secret: sometimes our life is a bit dull #SecretLifeofUs

This is a disabled parking bay…

This is a disabled parking bay. There are four of them at my son’s school. They are close to the school entrance and they are wider than normal bays. Doesn’t it look inviting?

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This is my son Benjamin’s blue badge. I had to apply for it, and pay for it. Many disabled people have to fight for it. It entitles me to park in the disabled bays at my son’s school (and anywhere else) when I have him with me and he will be getting out of the vehicle, or when I will be picking him up and putting him into the vehicle.

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These are four of the cars that were parked in the disabled spaces at my son’s school today. None of them is displaying a blue badge.

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Maybe their drivers aren’t aware that although this isn’t a public road the school still enforces the blue badge scheme? Maybe they thought they had a good reason to park in the disabled bays – all four of them? Maybe they were short of time? Maybe they’re just lazy? Well, in case any of them are reading this…

Here are some of the reasons I need to park in these bays:

  • Benjamin comes with a lot of equipment: not just a wheelchair, but a feeding pump, suction pump, medications, syringes, nappies. More equipment than I can fit on his wheelchair, which means I have to push it with one hand. The further I have to push it with one hand, the less safe that journey is for him. If I have my other children with me, well, they just have to take their chances.
  • If I have to park in a normal parking space (if I can get one), it is too narrow to get Benjamin’s wheelchair alongside the car. This means I have to park it (and him in it) behind the car, in the path of other vehicles looking for their own parking spaces.
  • If I have to park in a normal parking space (if I can get one), it is too narrow to get Benjamin’s wheelchair alongside the car. This means I have to carry him (all 18 kilos of him) round to the back of the car. I don’t mind the damage to my back. What I do mind is the risk of pulling out his feeding tube, which won’t stretch from his seat to behind the car. If his feeding tube is pulled out, he has to undergo an operation under general anaesthetic to replace it. When Benjamin undergoes an operation under general anaesthetic, he usually comes back ventilated and in intensive care.
  • If I have to park on the road (which I usually do, because if the disabled bays are full you can bet it’s because all the non-disabled bays are full), all of the above apply, plus I have to carry Benjamin out into the path of oncoming traffic.
  • If I have to park on the road, the likelihood is someone else will park so close up to the back of my car that I won’t be able to open the boot, let alone get Benjamin’s wheelchair into it.
  • One of Benjamin’s problems is that he cannot control his own temperature. In the extra time it takes me to get him out of a warm car into his buggy and under a blanket if the buggy is at the back of the car and not beside the door, he can become hypothermic. In the extra time it takes me to push the buggy from the main road to the school, he can become hypothermic. An extra couple of minutes in the cold can mean several hours of struggling to get his temperature and heart rate stabilized at a normal level.
  • If Benjamin becomes suddenly ill, which he does, often, without warning, and dangerously, I need to be able to pick him up and get him into the car and off to hospital, pronto. I may not have time to wait for an ambulance. I may not have time to drive around looking for a parking space, walk round the corner from that parking space to the school, and push Benjamin back round that corner to the car. Minutes count.

Here are some of the reasons you may not need to park in these bays:

  • You are not disabled
  • You don’t have a blue badge
  • You don’t have a disabled child
  • You don’t have a pile of medical equipment to transport
  • You can walk 100 yards without getting hypothermic (no, that’s not an exaggeration)
  • You can self-transfer to your car seat
  • You don’t need to get a wheelchair into your boot (God forbid need enough space to use a ramp or hoist…)

Now, you may think ‘I’m only parking there for a minute.’ But if that minute is the minute when Benjamin and I arrive at school, you’ve put us in an unsafe situation for the whole day.

You may think this is a small, petty issue. But this issue puts my son, and many others like him (after all, this is a school with a special unit attached that caters for children with severe and complex needs from across the county) at risk.

Please, think again. Thank you.

Our Inclusive Home

Just because it’s difficult, doesn’t make it right

A few of days ago an article popped up on my timeline. It was entitled How working in an abortion clinic changed my mind about terminations, and was written by a student midwife, Lucy Kelly. A bit ‘clickbaity,’ but I was baited and I clicked.

It is a beautifully written, convincing, strongly worded essay. The direction in which the author changed her mind (spoiler alert) was towards terminations. She wasn’t put off by what she bravely and compassionately witnessed, she was inspired by the fortitude of the women she met in that clinic. And some of what she wrote, yes, I do agree with. It is a terrible decision to have to make and I do not believe many parents take it lightly, whatever they decide.

But some of it, profoundly, no.

‘Women who are having late term abortions are only doing so if their baby will not have any quality of life outside the womb.’

Termination of pregnancy after 24 weeks may legally be considered, in the UK at least, on the grounds of foetal abnormality if there is a substantial risk that the child would suffer physical or mental abnormalities that would result in serious handicap. There is no definition, in the law, as to what constitutes a ‘substantial risk’ or a ‘serious handicap.’ Quality of life is not required to be evaluated.

Sadly, on this basis, women are undergoing mid and late term abortions of babies with Down syndrome, with spina bifida, with hydrocephalus, with cleft palate. Conditions which do not, necessarily, affect ‘quality of life,’ whatever that means. Let alone affect it so much as for it to be preferable to have no life at all. Who are we to decide, as mothers or as a society, that those lives are not worth living, or would be better not lived?

I was advised to abort my son at 38 weeks because his brain was not properly formed. Because he would likely never walk, talk or feed himself. Ours wasn’t one of those miracle stories you read in the Mail where the doctors are proved wrong. My son is indeed profoundly disabled – he will never walk, talk, feed himself. He will likely never roll, sit, or support his own head. However, I would dispute anyone who says he has no quality of life.

And, while the child’s quality of life may be one of the reasons (rightly or wrongly) for women to have a late term abortion, I know that it is not the only one. In fact, the child’s quality of life may be less important in the decision-making than the effect on the mother and any other members of the family. I know because I could have been one of those women. The arguments (and yes, there were arguments: painful, heated, lengthy and almost irreparable ones) surrounding our decision whether to abort, centred partly on our son’s likely quality of life, but partly on the impact on the rest of the family – myself, my husband, our at the time one-year-old daughter, the grandparents. Had we decided to abort – and don’t get me wrong, we very nearly did – it would have been in no small part for the latter reason: to ensure a better life for our existing daughter, to protect her from the isolation, stigma, and lack of opportunity that may come with being sibling to a disabled child. Protection that I believe could and should be achieved by changes in society: by inclusion, accessibility, support, kindness and a lack of judgment. Not by terminating the life of an innocent individual.

I do not doubt that the mothers, fathers, families, who choose abortion on the grounds of disability do so with much heart-searching. As, in fact, do those who choose abortion for other reasons. They may do it on the basis of misinformation. They may do it under strong pressure. They may do it because they truly believe they have no other option. But that does not make it right.

‘I cannot fathom how any politician can believe that they understand more about a woman’s health, and survival, than the doctor caring for her… This is not your life. This is not your pregnancy. This is not your experience. You do not get an opinion’

No, I cannot fathom that, but this is not just – or often even at all, except in incredibly rare and tragic circumstances – about the mother’s life. This is about – as Ms Kelly agrees from 24 weeks at least – a child’s life. The child whose life is at stake doesn’t get an opinion unless doctors, parents and policymakers give them one. That is our duty as a civilised and compassionate society – to give a voice to those who are voiceless.

‘Until you have lived this hell, made this decision, held the tension of two terrible fates and had the courage to make a choice that will break you to pieces, you do not get to judge a woman or decide what is best for her.’

I have lived this hell. I have made this decision. It still breaks me every single day. I am not judging these women; I am judging the circumstances they are placed in, the information they are given, the pressure that is brought to bear, and the expectations forced upon them by the misguided and mis-prioritised society that we live in.

I wonder if Ms Kelly is confusing respect for these mothers – which I share unreservedly – with agreement with their decision. Just because the decision was difficult, just because it was made thoughtfully, carefully, heartbreakingly, soul-searchingly… doesn’t make it right. The solution to this terrible, terrible dilemma is not to make it more acceptable, easier, less traumatic to abort a baby; the solution is to work change in our society so that it is easier to bear that baby, to birth that baby and to bring that baby up, whatever its nature and its circumstances.

**As a courtesy, I offered this piece to Spinoff, the site on which Ms Kelly’s article was published. They declined to publish, saying they weren’t ‘that kind of website’. I think it’s sad that they aren’t the kind of website that would like to show two perspectives on this issue; that they are willing to publish an opinion piece about a certain group of women, but not willing to publish the thoughts of one of those women; that they are not keen to be involved in working the kind of change in society that I describe above. I hope other readers will be**

Benjamin doesn’t tick boxes

An open letter to the Head of Education at East Lothian Council

Dear Ms Robertson,

Not having a tracheostomy is a good thing, isn’t it? Not being on TPN, not needing daily IVs, that’s good, isn’t it? Not if it means you can’t access the support you need.

I am sending you an open letter, because your response to my previous, urgent email about my son’s education was met – more than a week later – with a dismissive, incorrectly addressed, response from a ‘service administrator’ advising that it had been forwarded to ‘appropriate personnel who will respond in due course.’

If this administrator had actually read my letter, she would have seen that I am not ‘Mr Davey’ but Dr Davey, Benjamin’s mother (even ‘Mrs’ would have done), and that this matter requires a response not ‘in due course’ but urgently, and not by ‘appropriate personnel’ but by someone at the very highest level who has the ability and resources to make things happen, and make things happen fast.

This is Benjamin. Benjamin is undiagnosed. He has multiple, complex, interrelating conditions affecting many organs and systems of his body, but we don’t know why. When something is wrong, it is difficult to tell which part went wrong first. Chest or stomach? Breathing issues or muscle tone or a seizure?

Benjamin is intractable. Benjamin smiles when he is happy or with people that he loves. Benjamin also smiles when he is in pain. Benjamin tenses up when he is trying to reach for something, and also when he is trying to pull away, and when he is distressed.

When Benjamin is well, he’s very well. On a good day he only needs his regular medications, four times a day, his inhaler and a saline nebuliser once a day, chest physio and suctioning twice a day, a few checks of his gastrostomy and his temperature and you’re done! When he’s poorly, he can be very poorly. He may, within a couple of hours, become so dehydrated he needs IV fluids. He may produce so many thick secretions that he cannot breathe. He may have a tonic-clonic seizure that is resistant to rescue medication and lasts up to four hours. His temperature may drop so low it cannot be recorded with a regular thermometer. His heart rate can drop to 30 or rise to 180 beats per minute. His muscles can become so tense it is impossible to bend him into a sitting position. He can vomit fluorescent green slime out of his nose (Britain’s Got Talent, are you reading?). Benjamin can go downhill very rapidly and recover almost equally rapidly. Sometimes it is impossible to tell whether he is deteriorating or improving. Benjamin needs someone on hand, 24/7, who is able to respond to all these medical eventualities.

Benjamin doesn’t tick boxes. Benjamin doesn’t meet criteria. Especially when we don’t know what criteria he is being measured against. Especially when the ‘professional’ opinion is that he doesn’t even justify being tested against the criteria. Benjamin confuses panels and confounds ‘decision making tools.’

Benjamin, like all three year olds in Scotland, is entitled to 600 hours of funded early learning and childcare per year. Benjamin has a place at a fantastic special needs nursery, attached to the special needs school provision where he will hopefully eventually receive full-time education.

Benjamin loves nursery. He loves his teachers. He loves painting and baking, soft play and ‘body awareness’. He loves the sensory area and he loves when he gets a foot massage.

I love Benjamin’s nursery. But I don’t want to be there the entire time that he is there. Like other mums of three year olds in Scotland, I am entitled to 600 hours early learning and childcare for Benjamin per year to allow me to care for and spend time with my other children, to catch up on paperwork (oh, the paperwork), to catch up on laundry (oh, the laundry), to have a coffee, go for a pee, read a magazine, get my haircut. God forbid, I could even do my job.

But, since Benjamin started his three year provision in early January, I have had to accompany him to nursery because there is no-one there who can meet his medical needs. This was intended to be a temporary arrangement until either his nursery staff could be trained to meet his needs (voluntarily, because they are wonderful, caring people who will go beyond the requirements of their role as long as it is safe to do so), or until provision could be put in place for a medical professional to be with him at nursery. This would be a ‘reasonable adjustment’ as required under the Equalities Act to ensure that Benjamin can safely attend the education to which he is entitled.

As it transpires, Benjamin is too complex to be cared for by nursery staff. They are, after all, teachers, nursery nurses and classroom assistants. They are not medical professionals. (I am not a medical professional but, since having Benjamin, I might as well be). They cannot be expected to, should not be expected to, take decisions about Benjamin’s highly complex, variable, unpredictable and rapidly-changing health needs.

Benjamin’s teachers can be trained to do chest physio but not how to tell when chest physio might make his wheezing worse.

Benjamin’s teachers can be trained how to suction him but not how to tell when he needs suction or when it would cause too much trauma.

Benjamin’s teachers can be trained to aspirate his gastrostomy but not when that is necessary, how to evaluate the contents of his stomach, when to discard them, when to stop his feed, when to switch him to a different feed regime, when to worry, or when to take him to hospital.

Benjamin’s teachers can be trained to administer his feeds but not to evaluate what rate is appropriate for his stomach at any given time.

Benjamin’s teachers can be trained to clean up if he vomits but not how to tell if some vomit has got into his lungs, if he is getting dangerously dehydrated, whether he needs to go home on dioralyte or go immediately onto IV fluids.

Benjamin’s teachers can be trained to administer his medications but not to determine when he needs a higher dose than usual.

If Benjamin’s teachers make the wrong decision, because they are not medical professionals, he could end up in A&E wasting everyone’s time, or he could end up gravely ill. It wouldn’t be their fault. It shouldn’t be their responsibility.

And yet, because Benjamin doesn’t have a tracheostomy, because he is not on a ventilator, or on TPN or regular IVs, nobody will assess him for the Lothian Exceptional Needs Service for Children with Exceptional Health Care Needs (LENS) scheme, despite that he fulfils many of its ‘issues relating to need’ including needing ‘sustained medical support … seven days per week,’ requiring ‘professional trained intervention on a regular basis or in response to an acute incident in order to prevent acute hospital admissions,’ demanding ‘a degree of complex problem solving, and revision of the child’s care plan, on an hour by hour or day by day basis,’ and an inability or lack of competence of carers to meet these needs.

Because no-one will even bother to assess Benjamin for the LENS scheme, he has been downgraded to the frankly mythical HESS (Healthcare and Education Support Service). Because no-one will supply us with a copy of the criteria for referral to HESS, we do not know what boxes he needs to tick. Because the member of staff responsible for making the referral has been slowly drip-feeding us the information we need to supply and the evidence that needs to be provided, rather than giving us a clear outline of the application requirements from the start, it has taken far longer than it should have to put all that evidence together, extending the process well beyond the end of last term and into the next. Because parents apparently have no input into this information, only ‘professionals,’ there is no one to complete the documentation: I, his parent, am the one taking care of him at nursery because there is no professional there trained to do that (Anyone else thinking Catch 22 here…?). Because East Lothian has never even signed up to the HESS scheme, there is no guarantee that Benjamin will get the support he needs through it, and in the meantime we are left waiting, hanging, clinging to the concept of a ‘decision making tool’ that we have never seen and know nothing about. From Christmas to Easter, and now into the summer term…

I know this isn’t your fault, Ms Robertson. If anything, it’s mine: fancy agreeing to go to nursery with Benjamin as a temporary measure until something more permanent was organised? How gullible was that? Of course, that removes any incentive for anything permanent to be organised! I know this isn’t your fault, Ms Robertson, but it is your responsibility, so that’s why I’m writing to you (again) now. I’m no longer prepared to give up my time and my family’s time to provide something that should be provided to Benjamin as a right. The buck stops with you and it stops now.

There are many possible solutions. You could answer – and even fast-track – my request for Benjamin to receive a Coordinated Support Plan. You could provide all special school provisions in East Lothian with a full-time school nurse. You could support Benjamin’s immediate referral to the LENS scheme. He cannot be the only child in the county who needs this kind of support? Even if he is the only one without a tracheostomy…

I don’t want to be one of those mothers. The difficult ones. The ones who kick up a fuss. The ones who go to their MP and MSP and write viral posts on Facebook and go to the press. I am nervous. I wonder, is it too early to protest? The HESS application is, after all, still ongoing. The school staff say they are drawing up a ‘timeline’. The nice lady at the council says she has sent some emails. But how long do we have to wait before we start working together on ‘Plan B’? Do I and the nursery actually have to call your bluff, refuse to provide essential medical support for Benjamin, in order for someone to take us seriously? Does it have to wait until my family is at crisis point?

I don’t want to be one of those mothers, but believe me, I will. If Benjamin does not tick your boxes, your boxes are the wrong shape. If Benjamin doesn’t meet your criteria, you need to rethink the criteria. If Benjamin doesn’t fit your ‘decision making tools’ then those tools are not fit for purpose. Maybe together we can make some better tools?

Yours,

Benjamin’s mum

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To those who make our lives difficult … and those who make them better

It has not been a great week. Friday night I finally worked out (with the help of a head-torch and strong stomach) what had been keeping my five-year-old (and therefore the rest of the family) awake for large proportions of the last couple of nights: threadworms. Cue a weekend of swallowing foul-tasting medicine (okay, banana-tasting, but I don’t like bananas so it tasted pretty foul to me), nail-cutting, disinfecting, hoovering, and washing every damn sheet, towel, and pair of pants in the house.

About six loads into the approximately twenty loads of washing that needed doing (why my husband needs to keep six pairs of jeans on the go at the same time is beyond me), the trusty washing machine gave its last gasp and went to Hotpoint heaven. Well, you have to laugh don’t you? Off to the shopping centre for a new washing machine and some more pants.

If we huddle together maybe she won’t wash us? (I did)

The day the new washing machine was delivered, which also happened to be the day the temperature went down to -1 degrees outside and it snowed a blizzard, and the day Benjamin was back home from respite, our central heating thermostat decided the washing machine was having far too much fun up there and headed off to join her. Cue another sleepless night waiting up for the British Gas man and making sure Benjamin was not alternately freezing to death or catching fire due to the slightly rickety electric heater we set up in his room.

Perhaps surprisingly to those who know me, I actually did manage to stay positive through these tribulations, despite a niggling sinus infection and a baby who still decides to feed for five hours a night, because I know they were really nobody’s fault and I could make a plan to resolve them. I always feel better if I have a plan.

What does upset me are the things that I have no control over but somebody else does. The things that just aren’t fair. The things where people just don’t think. The things that make our life – already stressful, exhausting and expensive – just that little bit more difficult. The things that, on a good day, I can shrug off, but on a bad day tip me over the edge.

The neighbour who consistently parks her car overlapping our disabled space, sometimes so close that I can’t even open the boot, let alone open it wide enough to get a wheelchair in.

The parents without blue badges who fill the disabled parking spaces next to my daughter’s nursery, and those who do the same at my son’s even though it has an SN nursery attached so clearly they are going to be needed.

The parents who think it’s okay to leave their towels and clothes ‘bagging’ the only disabled changing cubicle at our local swimming pool while they shower, so I have to wait with a dripping, freezing five-year-old, or leave Benjamin outside the cubicle blocking the gangway, or confront them and risk their (sometimes vitriolic and frankly foul-mouthed) wrath on their return from the shower.

The medical secretaries who repeatedly ignore and refuse to return my worried calls.

The paper-pushers who drip-feed us form after form over week after week, while they mark Benjamin up against their secret criteria to decide whether he is entitled to medical support to enable him even to attend the nursery placement to which he is legally entitled.

The last straw…

But these are minor niggles, really, compared to the worms, ohmygod the worms those that many SN parents (and carers) face. Parents who feel compelled to take horribly drastic measures because they see no other way to get their child the support that he needs. Parents who have to go to court to get the right school, the right house, or the right care for their child. Parents who need physical protection from their own children. Parents who risk losing their homes because they cannot work to pay the mortgage. Parents who aren’t believed that their child has needs because they behave perfectly at school but let all their emotions out at home. Parents who have been allocated respite but have no one to provide it; parents who desperately need respite but have been refused it. Parents who have to fight every step of the way just to ensure their child is healthy, happy and included and their family stays together and has the energy to fight another day. And these parents still put a brave face on it and support each other because that’s what we do.

And they are minor niggles because, for every one of the people who make our lives difficult, there is always at least one who makes it easier.

The washing-machine man who fitted our new machine with a cheery smile and a knowing nod. The boiler-man who came out in the middle of the night and returned the next day with a brand new, all-singing all-dancing internet-enabled thermostat. The friends who volunteer to hold (and jiggle) Caitlin while I get Jackie changed after her swimming lesson, so that I have one less child to keep an eye on. The neighbours who look out for us and invite us over for coffee. The agency carers who come in on their day off and spend time encouraging Caitlin to walk and listening to Jackie chatter as they take care of Benjamin’s needs. The lady at the council who actually listened to our problems, understood, and promised to do something about them. The hospice staff who arranged a photographer to take some family photos for us, and the photographer who refused to charge for them.

New washing machine (and expert washing machine selector)

So we’ve got through this week with our humour (if not our wallets) intact. With a few more grey hairs and bigger bags under the eyes. There is still enough in our lives to smile at and plenty to laugh at. Often it’s not about money and limited resources, it’s just about thoughtfulness, consideration and an inclusive attitude. Just don’t mention the worms.