The cost of disability

The Kiddicare ‘Traffic’ Group 1-2-3

Above is a suitable car seat for most four-year-old children. It costs £29.99. Below is a suitable car seat for Benjamin. It costs £2,301.00.

The JCM ‘Carrot 3’

Panelled XL Bean Bag in Aqua, from http://www.BeanBagBazaar.co.uk

Above is a pretty fancy bean-bag. It costs £37.99. Below is Benjamin in his bean-bag. It cost £972.00.

Chillin’ in ma p-pod

The average cost of a new bathroom in the UK is £4,500, according to specialists Victoria Plum. Quotes for the downstairs wet-room we need to be able to shower Benjamin in safety (there isn’t even the option for a bath, much as he loves them) range from £9,350 to £14,760. A grant from the council will cover part of this, leaving us to shoulder approximately £8,000 of the cost.

A pack of vests for my youngest cost £3.50 for five; vests for Benjamin are £3.50 each, and these are the cheapest ones. I could go on (and on, and on, as I’m sure could most people with a disability). The charity Scope reported this year that on average, “disabled people face extra costs of £570 a month related to their impairment or condition,” even when their benefits such as Disability Living Allowance or Personal Independence Payment are taken into account. This is undoubtedly our experience. Because of Benjamin’s needs, we spend more than other families on heating our house, more on travel to and from hospital and appointments, more on insurance, more on clothing, more on laundry, etc., etc. Not to mention the fact that our income is lower than it might be because there is no way I will ever be able to work full-time since childcare for children like Benjamin outside of school hours is non-existent.

How are we supposed to meet these extra costs, none of which are met by the state? We were fortunate that the charity Newlife fundraised to cover Benjamin’s p-pod. Radio Forth’s ‘Cash for Kids’ are contributing a generous £3,000 towards his wet-room. The wonderful staff at Kindred have tirelessly applied for small grants to cover the extra travel and childcare costs we face whenever Benjamin is hospitalised.

But that’s it. So far I’ve drawn a blank trying to find a charity that will fund the car seat that Benjamin urgently and desperately needs – without it he simply can’t travel safely which means he won’t be able to get to important hospital and therapy appointments. There are no other charities that will cover the outstanding cost of house adaptations. The reason? The major sources of funding for disabled children, such as Family Fund and the Caudwell Trust set an earnings threshold which we fall just above. Although Benjamin fits the medical criteria, we will never be able to take one of Caudwell’s ‘Destination Dreams’ holidays to Florida, because we don’t fit the income criteria and there is no way we could afford, or have the time to organise, the immense practical and medical support needed to take Benjamin on a plane and far away from his local hospital.

One charity sent back my application for funding to help with Benjamin’s car seat, with pink highlighter over the expenses we declared that apparently indicate we are ineligible for help, including the cleaner that I pay for out of Benjamin’s DLA to allow me more time to look after him, and the amount I estimated I spend on presents (for when the girls go to other kids’ birthday parties, and end of term presents for the numerous staff that help all of our children in such wonderful ways). Benjamin’s sisters are stigmatised enough by association with their brother and miss out on many things because he is in hospital or has yet another appointment. The least I can do is try and ensure they attend their friends’ parties when they are able, and that they take a present with them like everybody else. This despite the fact that I accounted nothing for, say, extra expenses during hospital admissions, or holidays, as there were no boxes on the form for these. Clearly families with disabled children are not expected to enjoy such luxuries. Our girls have had nothing more than a long weekend away since Caitlin was born!

We are one of a large, hidden caste of families with disabled children who fall between two stools: we do manage to work and have an income that puts us just over the threshold for receipt of benefits including carer’s allowance and tax credits, and therefore face the enormous additional costs of disability practically unaided, on top of paying the usual bills such as a hefty mortgage and attempting to provide necessary items and the occasional treat for our children. I know we’re living beyond our means, even if I haven’t got time to sit and calculate our budget: the last time I worked through our income and expenses with our Kindred advocate, a couple of years ago, I was shocked to find we were running at a net deficit of roughly £400 a month.

Yes, we are fortunate enough to have some funds in a savings account in case of emergency. In case, say, Benjamin needs a power-chair that won’t fit down our hallway and we have to move out of our ‘forever’ house. In case, God forbid, he passes away meaning our Motability vehicle would be repossessed and we would suddenly need to buy a car. And of course we’ll happily use our savings for anything that Benjamin needs, because nobody else is going to help us with those kind of expenses. Money in the bank isn’t everything, won’t buy us happiness, and is no use when you’re gone. So unlike most middle-class families, building up their savings to put their children through university, ours will likely be whittled away well before they may choose to go there.

I know we are the fortunate ones. Every family has some kind of unexpected expenditure to deal with, whether that’s a disabled child, a sudden redundancy, a health crisis, or just a little girl who would give up everything to ride a horse. At least we do have some rainy day funds that will suffice for now. For now we can absorb the extra costs of disability without running into debt, relying on foodbanks, or disadvantaging our children’s prospects in today’s dog-eat-dog world.

And I hate doing it, but as well as eating into our savings I will continue to fight for state and charity funding, because that’s the kind of world we live in. That’s what the rich, the influential, the educated and the well-connected are doing. I will write eloquent letters, I will fight social media campaigns, I will go to the press, and I will cry down the phone if I have to (usually I can’t help it anyway). I will reapply again and again explaining our household budget in ever more demeaning detail and pleading for Benjamin to get the car seat that he needs before he no longer needs it.

I hate doing it because it makes me feel mercenary. Because it makes me go over and over our worst case scenarios when I want to hope for the future. Because it means I have to explain and justify our spending habits to strangers. Because it makes me feel guilty about taking limited resources away from those that don’t have the knowledge, education, time, health, resources and energy to fight for them.

I hate doing it because I don’t want Benjamin’s sisters to pick up on it. I want my girls to prioritise the values of happiness, kindness, fairness, gentleness and concern for others over money, and I don’t want them to see me doing any different, but I also want them to know I fought for them to have both. So while I will keep fighting I have to balance that with awareness-raising, fundraising, volunteering, trying to give back to others in as many ways as I can.

It’s draining, it’s demoralising, it’s exhausting. The financial costs of disability are enormous, but the cost is not just financial; disability (by which I mean social disability – being disabled by the world around us rather than by one’s own limitations) costs dear in terms of time, energy, sanity, stress and relationships. We are so fortunate that – at least until our savings run out – we can shoulder the financial burden and this gives us the breathing space to be resilient against the other pressures. Many are not so lucky.

How do I fight for all my children to have the best start in life, whilst at the same time teaching them values of gentleness and concern for others, without driving myself insane in the process?

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Fake it ’til you make it

Someone once told me that, however bad you’re feeling, simply smiling will make you feel happier. It’s to do with the physical action of moving your face muscles triggering neural pathways involved in emotion. Or something. I don’t know whether it’s scientifically proven, anecdotal, or just bullshit.

Anyway, I wonder if the same can be said of looking like you’re in control? Coping. On top of things. If I behave every day – on the school run, at work, in all Benjamin’s appointments, when I’m changing shitty nappies, when I’m frantically suctioning his airway until he can breathe – as if this is all a walk in the park, then is it? If I keep putting one foot in front of the other and holding one tiny person by each hand instead of rolling on the floor and screaming like a toddler am I doing just fine? Or am I just kidding myself? Am I actually kidding anyone else?

I sure want to look like I’m coping. I want to be smart, svelte, smiling and on time, with matching socks and freshly brushed children like everyone else. Why? Because I’m proud (too proud). I’m not about to prove right those I overheard saying, “I don’t know how she’ll cope with three children so close together.” I’m not about to live up to their prediction that, “The eldest will be neglected.” I will bust a gut to show them that I am not only coping with my three children but that all of them are completely loved, cared for, listened to, engaged with, taught, and nurtured.

Look, I even give them healthy snacks

Please don’t squeeze the guinea pig too hard

So worth it (when they are asleep)

And because, actually, coping has always been something that gives me a little buzz. At school I loved to be the responsible one – the pupil the teachers could trust to run errands not just reliably but well. I like being the colleague that people can call upon to take on an extra task and know that it will be done excellently and on time. The more things I volunteer for, the more I can kid myself that I am useful, my life is meaningful and valuable, and that I am in control of what I do rather than simply responding to each demand as it arises.

And, because I have to. If I don’t keep on top of the childrens’ calendar and my work commitments and the shopping and the laundry and feeding the guinea pigs and mowing the lawn and making sure the church magazine is out on time who’s going to do it?

See, they get new shoes. She’d only gone up three sizes…

Yes, we are very lucky to have a ‘village’ that would do their best to step in in a crisis (and we probably wouldn’t have to cook for a month!) and yes, we have a social worker and six hours agency care a week, and yes, we can afford to pay for some day-care for the girls when we need it, but in the end the buck stops with me to organise and coordinate everything – to carry the ‘mental load.’ With school and nursery and reading practice and homework and swimming and music and ballet and a house and a car and all Benjamin’s appointments and prescriptions and equipment and a little bit of campaigning and a little bit of work and everybody outgrowing their shoes all the time, there are just so many balls to drop!

Are they starting to fall? How long have I got before people realise it’s all a façade? Where the professionals once said, “You’ve done so well with Benjamin!” Will they start realising that I should do so much more? Where friends once said, “You’re always on top of things!” Will they start noticing that my to-do list is so long things are dropping off the bottom? That the girls have been promised new curtains since I got my sewing machine, the Christmas before last… That I told a colleague I’d write a ‘topical’ paper two summers ago… Do my family notice that I’m less patient, my sense of humour has shrunk, I drink more wine, and we’re always out of salt and vinegar crisps?

Now that two out of the three children are mobile and talking but only one of them has any sense of danger or ability to understand reason, I am seriously outnumbered. Not to mention the fact that none of them sleep through the night… When I’m home alone with them I’m a nervous wreck: planning, imagining worst case scenarios, trying to second guess which one will need me next, how to keep the other two happy at the same time, and when it’s safe to go for a pee. And out of the house is worse.

Some weeks I feel like I’ve embarrassed myself, let everyone down, like I can’t do this at all; others I feel I have totally got this. Bizarrely, the latter is usually when things are busiest, Benjamin is poorliest, and I am most overstretched. It’s when we’re whiling away a sunny afternoon at the park because we don’t have to be anywhere particular that things seem to go properly tits-up. Perhaps I really do thrive under pressure? Or do I only realise what a car-crash my life is when I have time to think? And am I the only one? Is everyone else doing better? Or are they too just winging it, firefighting one crisis after another and relying on chocolate and a good mascara to face the world? Are we all swans, swimming serenly past one another as we paddle frantically under the surface to stay afloat? And if I keep faking being in control will it one day actually come true?

Sunshine and ice cream make everything alright

Oh, and huggles too

Crazy lady (credit my eldest for this flattering photo)

Captain Endurance and the Imperturbable Girls

I have to admit, I’m not really up on my superheroes. I understand things have moved on a bit from Thundercats (I wasn’t allowed to watch He-Man and the Masters of the Universe because it was on ITV and therefore infra dig). I’m painfully aware of the PJ Masks, thanks to my six-year-old and YouTube, but the whole Marvel Empire is largely a mystery to me.

However, I really don’t feel I’m missing out because I have daily contact with at least three superheroes of the absolute superest kind: my children.

Leader of the gang, Benjamin, is ‘Captain Endurance’ because the number of unpleasant, frustrating, and downright tedious things he puts up with (and, often, sleeps through) without any fuss whatsoever is frankly astonishing.

He’s coped with four-hour seizures that were exhausting just to witness, not to mention the drugs needed to stop them – enough to put a horse to sleep. He’s undergone multiple surgeries under general anaesthetic. He tolerates being physically restrained for MRI scans, and multiple attempts to get a cannula into his veins at every hospital admission. Every few months a radiologist sticks a wire into his stomach and intestines, pulls out his feeding tube, and pushes a new one back in – a process that can take anything from ten minutes to four hours and generally makes Benjamin feel pretty sore and sick for a couple of days, not mention that the radiology suite requires a deep-clean afterwards to get the bile out of all the equipment.

Benjamin doesn’t complain at the worst pain of all – the application and subsequent removal of dressings each time his permanent IV port (he really is half-boy half-robot) is accessed, and that of the hyoscine patches that go behind his ear to reduce his dribbling. He is subjected to an unpleasant round of beating, shaking and squeezing going under the name of ‘chest physio’ twice daily (or more, if his little sister takes it upon herself to emulate the procedure).

At intervals throughout the day (up to half-hourly depending on how poorly he is), a catheter is forced down his nose and into his throat to suck out all the gunk that accumulates there – a procedure that must at the very least be uncomfortable if not distressing, yet Benjamin puts up with it; sometimes he even sleeps through it!

He’s on medications that can make you drowsy, medications that make you agitated, medications that taste horrible, smell horrible and drip all over his trousers. He’s fed nasty-smelling milk into his jejunum (the first part of the intestine) and is nil by mouth so he never experiences the sensation of food on his tongue or the satisfaction of a full stomach. From his vantage point in the kitchen he spends hours every day watching the rest of the family cook and eat meals, smelling curries bubbling, cakes baking, fish suppers fresh from the chippy, without ever getting to taste them himself. Yet he never seems to get frustrated or complain. Remarkably, neither do his wonderful carers who also arrive at tea-time yet aren’t allowed to partake.

However, this is preferable to what went before – months of being fed into his stomach only for the milk to reflux up his oesophagus and down into his lungs causing chronic chest problems. It’s also preferable to what went before that – a constant barrage of bottles and breasts trying to force milk of any kind into his undernourished little body, not being allowed to sleep for more than three hours at a timebefore another feed was due.

Then there’s the hours of waiting at out-patient appointments. There’s being weighed and measured and having the details of your bowel movements discussed in excruciating detail by your parents and a team of consultants and medical students. There’s sleeping constrained by a system of wedges that forces you to lie in a straight line no matter how much you want to curl up cosily in a ball. There’s never having shoes that fit, because by the time they’ve arrived from the Orthotics people you’ve inevitably grown out of them. There’s never having glasses that fit, because, well, no-one seems to be able to make glasses that fit you.

I think the thing that would frustrate me the most – although Benjamin bears it with beautiful grace – is never having control over even the minutiae of his own life. He is poked and prodded when he wants to sleep, and put to bed when he is not sleepy. He is constantly climbed on by his sisters, forced to watch their choice of programme on TV. He is cared for by carers he had no say in choosing (although he clearly loves them to bits), sent to respite when it suits the rest of the family, and generally surrounded by people with whom he can rarely communicate his desires. As yet, he shows no sign of annoyance at all the things he has to go through, no sign of frustration at the things he cannot do. I don’t know whether to wish for him to grow and develop to the point that he does get frustrated, or to want him to stay forever in a state of more-or-less blissful ignorance. And, since Benjamin’s condition has no overarching diagnosis and therefore no prognosis, I have no idea which scenario is more likely.

So yes, Benjamin is super-patient, super-tolerant, super-uncomplaining. He is Captain Endurance. He’s also super-amazing! Before he was born, it was predicted that he wouldn’t survive birth: he not only survived, he needed nothing more than a little rub to get him going, he registered the same APGAR score as his sisters, he spent zero time in the neonatal unit, and was discharged from hospital five days after he was born. It was predicted he would never be able to breastfeed and would need an NG-tube from day one: this superhero breastfed like a trooper until the age of 17 months. It was predicted he would be blind and would never recognise his family: Benjamin sees, recognises, tracks and smiles at the faces of people he knows and loves. Our little man works so, so hard to achieve every tiny milestone, superhero-style.

And is this a surprise? No, because Benjamin comes from a family of superheroes; just look at his sisters, ‘The Imperturbable Girls’! Among his little sister’s first words were ‘syringe’ and ‘suction.’ At the age of two, she can conduct a pretty rigorous round of chest physio when Benjy is least expecting it. At six, his elder sister can look after the little one when I need to look after Benjy; she fetches nappies and muslins, passes me the right size of suction catheter, and knows how to dial 999. Both accept uncomplainingly that they never get to travel further than Granny’s house, that sometimes we can’t go places that have too many steps or no suitable toilet; that we have strangers in our house every evening, that most school holidays will involve at least one long boring day playing on the iPad in A&E.

They put up with all of this because they don’t know anything different. Neither of them can remember a time before Benjamin. Neither of them has seen enough of other children’s home-lives to know that ours is unusual. They don’t know anything different – yet. Unlike Benjamin, they will definitely come to a point when they realise they are missing out. When they start to count the differences between their lives and their friends. Already, although they sleep through the ambulances arriving in the night, they remember for months the mornings that Benjamin wasn’t there when they woke up.

Having a ‘SWAN’ (Syndromes Without a Name; a child with a condition of unknown cause) for a brother will make this harder, as there is no easy explanation for any of us to fall back on. I can’t tell Benjamin’s sisters why he is like he is, and they can’t explain to their friends either. They live in a world of uncertainty because I can’t tell them what will happen tomorrow, next year, or in ten years’ time, for Benjamin or for them. So, imperturbable, yes; unaffected, no, and increasingly no as they get older.

My superheroes in their super-mobile (and a half naked doll for some reason)

In many ways, caring for Benjamin is easy: it’s all practical stuff. I can lift him, bathe him, feed him, medicate him, clear his airways and time his seizures. I can call an ambulance when I know I’ve done all I can. All I can do for my girls is to try to provide them with the support they need when they might need it: their school teachers are aware, they are on the waiting list for our heavily-oversubscribed young carers’ group, I try to let them know they can talk to me about anything and I will do my best to make things right. Perhaps the best way I can help them is to build on their superhero abilities by making their superhero status super-cool! They are part of the SWAN club! They get to join SWAN days out, share SWAN balloons, wear funky hoodies in groovy colours, and meet other SWAN siblings with similar superpowers. And I know – along with their SWAN pals, they will grow up to be super-accepting, super-inclusive, super-tolerant, super-gentle, super-strong, and with a super sense of fairness and justice. True superheroes.

As to Benjy, how will he grow up? Will he continue to push the boundaries of what is possible? Will he become a ‘SWAN graduate’ with a firm diagnosis? Will he join the ranks of SWAN angels gone far too soon but held forever in our hearts? Whatever happens, he’ll always be a superhero to us.

Friday 27 April is Undiagnosed Children’s Day 2018. Support the Superheroes: Text SWAN18 £3 (or any amount up to £10) to 70070. #UCDsuperhero

Torn

We are just back from weekend trip to Aberdeen. I say ‘we’. I mean my husband and I, and the two girls. Our first trip away without Benjamin.

I think we pulled off a pretty good impression of a ‘normal’ family on a ‘normal’ trip. Dare I say ‘minibreak’? A few bags slung into the boot along with sledges just on the off-chance – no squeezing in of feeding supplies, nebulisers, and suction catheters around the wheelchair. We stayed in a simple family hotel room – no phoning round for hours to find anywhere with a wheelchair accessible room that would sleep five (actually, I did phone around for hours before I remembered that, this time, Benjy wasn’t coming with us. Doh.).

But for me it was far from normal. My normal is with Benjy, and Benjy was away having his own holiday. We are fortunate to have access to a specialised, nurse-led, NHS children’s respite service, the kind of service that is under great threat in many parts of the country. We are grateful they can accommodate Benjamin for a weekend once a month – enough time for us to really make time for the girls. We are thankful that the staff have worked with us to get to know Benjamin well enough that we can entrust him to them.

But still, I’m torn. I don’t want to move too fast. We could have flown to New York for the weekend! But no, take it slow, baby steps, for all of us but mostly, if I’m honest, for me. So Aberdeen was a test run, somewhere we could get back from within a few hours at any time of the day or night. A test run for the logistics, yes, but also a test run for the emotions.

On top of the world (or a small hill in Aberdeenshire)

Sure, it was simpler and easier. Sure we could do things – like visit friends with inaccessible houses, like climb a snowy hill, like stay out later than usual – that we can’t do with Benjamin. The girls had a ball, singing songs in the car, playing in the snow, exploring the hotel, ransacking the snacks, a longer bath and a later bedtime. I can’t say we got any more sleep than we do at home – two excited girls and a late night in one room doesn’t compute. Add to that all the packing, and driving. It wasn’t exactly a rest, and it wasn’t a family holiday – how could it be, without Benjamin?

Sure, Benjy doesn’t seem to miss us. He enjoys the attention and the activities and the lovely lady nurses! But does he realise? Does he know that we’ve gone away without him? That we’re having family time without him, because it’s easier; because it’s too much trouble to take him with us? I wouldn’t dream of leaving his sisters with anyone else overnight at the age of four; how can I justify treating him differently? Especially when his needs are so great and his time with us may be short.

What if he gets sick and I’m not there to interpret how he’s feeling? What if the worst happens? Even if the worst doesn’t happen, we are all missing out on precious time with Benjamin. Will we regret these lost hours when there are no more hours with him to be had? Have I drunk in enough of him that I will remember his scent? The feel of his cheek? The little noises he makes when he senses I am near? Have I taken enough photos of his little freckled nose? Have I let his sisters have enough cuddles to last them a lifetime?

But his sisters can’t live their lives within an hour of the hospital. They can’t keep missing out just in case. They need to live now, experience the things their friends do now; they need Mummy and Daddy’s undivided attention, now. And I need time away from Benjamin to realise just how much I do miss him, to appreciate how much he means to me as a little boy, as my son, as my daughters’ sibling, rather than a patient and a full-time job.

So, hard though it is, it is good for us all to have this time apart. It wasn’t a family holiday and it wasn’t meant to be. All we can do is to make the most of our time away, to do things we can’t usually do, go places we can’t usually go, to spoil the girls and spoil each other, to try not to argue and try not to feel guilty if we do. And when we get back together, all we all want to do is hold Benjamin close, hug him tight, listen to his welcoming murmurs, kiss him gently, kiss him hard, hold him some more and appreciate being a family once again.

Time apart … and time back together

It ain’t easy being green

So, this week I got into an argument with some people I don’t know on Facebook (I know, I know, I should know better). The argument was about this picture, originally seen in a viral tweet:

A friend shared the photo with the single strapline ‘wtf’ and there followed several comments along the lines of ‘carry a pocket knife … no excuse for this.’

So I made the mistake of pointing out that some people, actually, do have an excuse, nay, a reason, to need such items, for instance poor coordination or muscular weakness, and that perhaps we could be open-minded enough to consider the difference such pre-prepared foods make to the potential for living an independent life as a person with a disability (as had already been adeptly pointed out on several news outlets such as The Metro). Sadly, few other commenters were interested in being open-minded, they only wanted to show off their green credentials by ramming the point about plastics home.

Similar arguments have been raging recently over the phasing out of disposable plastic straws, for which neither paper, stainless steel, or reusable plastic as yet provide a perfect alternative for those who cannot easily drink from a cup, can, or bottle. Now I do agree – who couldn’t, having seen the evidence on Blue Planet 2? – that, for reasons ranging from climate change to marine conservation to the depletion of resources, we need to reduce massively our reliance on plastic. In fact, living less than a mile from one of Scotland’s most beautiful (albeit inaccessible to wheelchairs) beaches, I am acutely aware of the despoiling nature of drinking straws, cotton buds, discarded flip-flops, etc., etc.

But. For some members of society there’s not ‘no excuse’ for using plastic drinking straws. They can’t just ‘carry a pocket knife’ and peel their own oranges. And vilifying these people doesn’t help build a compassionate society that shows concern both for our neighbours and for the environment we all share.

I try to be green. I walk or cycle where possible. I compost waste and use cloth nappies. We have insulated our house and don’t heat the rooms we don’t use. It’s in our own best interests: I know that working towards a more sustainable way of life is of most benefit to the most vulnerable, with eco-catastrophes such as more frequent and severe winter storms, rising fuel and food prices, and the loss of cultivable and habitable land, impacting hardest on disadvantaged groups including those with disabilities.

But, I also know that, because of Benjamin, our life is less sustainable than I would like. We have the (gas-fired) central heating on at night to keep him warm. We use – and discard – plastic containers, tubes, and packages every day as part of the process of feeding him safely. We have to drive places because public transport is not always feasible. Should we be mocked on social media for this? Should we be criticised for consuming materials that, literally, keep our son alive? Should being green trump caring for our most vulnerable?

Perhaps what is needed is legislation, not to outlaw single-use plastics entirely, but to limit them to those that cannot do without them. Of course, this will eventually make them effectively unavailable even to those that do need them, because a specialist label almost always means a specialist price-tag: the more ‘niche’ a product becomes, the more prohibitive its cost. Perhaps instead plastic goods should be available only on prescription, like antibiotics, to prevent irresponsible users putting everyone at risk. But with some clinical commissioning groups already considering cutting funding for non-pharmaceutical items such as prescription formula, I’m not sure this would be popular either.

There’s no easy answer. Clearly we should seek to develop safe, effective, reasonably-priced, sustainable alternatives to single-use plastics. But we aren’t there yet, and in the meantime I’m not sure banning them and stigmatising their users is the way forward. People with disabilities are discriminated against and misunderstood already; this will just provide the bullies and perpetrators of hate-crime with another weapon in their armoury.

So how can we reduce our plastic use without an outright ban that negatively impacts upon the small sector of society that truly can’t live without them? The first step has to be education: let’s keep up the impetus that Blue Planet 2 has started. At the same time, we need to support the development of safe, effective, affordable, desirable, and sustainable alternatives. In the meantime, it’s up to us all to be responsible: if you don’t depend upon plastics, don’t use them: leave them for those that do (I only hope people’s attitude to plastics differs from their attitude to disabled parking bays…!). With tolerance, thoughtfulness, and responsibility we could build a society that values its environment and its most vulnerable members. Is that too much to ask?

These specs aren’t single-use plastic are they mum?

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.

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.

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)?

‘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.