12 Dec 2017

Another Really Good Sandwich

Currently, I do not feel the urge to blog. My life is a nonstop whirl of work, because uni hate me and set the deadline for my dissertation proposal/sample chapter for the 9th January AND I HAVE TO POST THE FUCKING THING IN THE ACTUAL POST, so realistically, I need to finish it and post it by the 5th at the latest. I am, however, well proud of what I've got planned. Soph: Crime and Sexuality Historian at your service. I have a four month research break from January-May and then seven months of write up...and then, fuck knows. A job? Hold tight, NHS, I'm coming back to administrate you!

As well as work, I am trapped by the twin rock of grief and anxiety. Grief for my mum, whose loss lingers in every lit up window, in every Christmas card, in every present wrapped. Grief in every present I would have bought her. Grief in everything I want to phone and ask her ("Mum, are you sure this bloody pudding needs three hours steaming??"). Grief in everything I want to share with her, every nativity and every funny thing Alex (experiencing his third Christmas, but his first as a properly aware person) comes out with. 
And anxiety, because having a stupid fucking anxiety disorder which has MOSTLY gone away since The Worst Thing That Could Happen Happened And I Survived, rears its hideous and unwanted head at Christmas. "What if you all DIE ON CHRISTMAS EVE?" it whispers into my ear. "DID YOU LEAVE THE OVEN ON? WILL THE HOUSE BURN DOWN? I BET IT WILL". "YOU'LL VOMIT ALL OVER YOURSELF AND THE CHRISTMAS DINNER AND THE CHILDREN WILL HOWL AND YOU WILL REMEMBER THIS AS THE CHRISTMAS OF PUKE". I know it's irrational. It doesn't make it any easier to bear. My festive anxiety is not a new thing. As a seven(ish) year old, my parents had to take me to the emergency doctors on Christmas Eve because I was in such excruciating pain. It was just excitement. I used to puke every single Christmas Eve. The last time was when I was about 22. It's quite irrational. Thankfully, my endometriosis painkiller is also an anxiolytic, so at a push, I can eat them until I fall into a passive coma (*don't try this at home, kids*).

But this is all by the by. I came to give you a brilliant recipe for your leftover turkey, because I have always been revolted by the very fucking idea of cold turkey with a plate of bubble and squeak (sorry Dad). On Boxing Day, we don't have the older two boys, so I tend to breakfast on prosecco and REALLY EXPENSIVE bacon sandwiches like a luxuriant slattern. But you can't actually live on prosecco and bacon (and cheese) for the entire festive period (I KNOW, SO UNFAIR). 
This is an adapted form of the Vietnamese sandwich, Banh Mi, which I have bastardised from a recipe by Niki Segnit in the fabulous The Flavour Thesaurus. If you're carnivorous, you can probably assemble this sandwich from what you have on hand. And it is WORTH getting rice wine vinegar in just to make it, believe me. It needs a little work in advance, but not like Christmas dinner levels, and it's bright and refreshing in a sea of fat and carbs and fat. 
Sorry, no veggie/vegan alternative, but the pickled veg is bloody lovely in most things or indeed, on its own. 

You Will Need For About Four Sandwiches:
For The Pickle
A peeled carrot
An unpeeled cucumber
Rice wine vinegar

For Assembly
Pâté - chicken liver for preference, but it's Christmas so whatever you've got. Nothing too spicy or herby though. 
Mayonnaise - Helmans is fine
Fish sauce (aka nam pla)
Soy sauce
Leftover turkey shredded into strips
Four short baguettes cut not-quite-in-half lengthways
Fresh coriander, but it's not essential

This is a recipe of two halves, so you need to plan it a tiny bit. 
First, pickle your veg, Cut your cucumber and carrot into matchstick pieces. I am crap at cutting them this fine, but you want them fairly thin because nobody wants to bite down on a fucking enormous piece of carrot in their sandwich. Take the seeds out of the cucumber as you chop it up, or the resulting pickle will be a wet seedy mess. Once they are cut, cover them in salt and leave them for ten to twenty minutes. I do this with them on a piece of kitchen roll in a colander in the sink, because the salt draws the moisture out and then it drains straight out into the plughole rather than sitting about, sludgily. When you think they've had long enough, rinse them, dry them and then put them in a bowl. Mix about four tablespoons of rice wine vinegar with a tablespoon of sugar and then pour if over the veg. Leave it in the fridge to marinate until you want it. I tend to do this in the morning if I'm eating in the evening but you can really do it any time in the 24 hours before you want to eat. This sounds a faff. It is not. 

And so to assembly. Drain the veg. Mix some mayonnaise with a dash of fish sauce and a dash of soy sauce - you don't want to make the mayo too runny. Then spread one cut side of the baguette with mayo. Spread the other side with pâté. Warm it through in the oven. Then stuff the baguette with drained veg and shredded turkey. Add fresh coriander.


At this rate, my first book will be Soph's Big Book Of Fucking Amazing Sandwiches.

Merry Christmas xxx

26 Nov 2017


Stir up, we beseech thee, O Lord, the wills of thy faithful people

When I was a child, Christmas began at some point in late November, when Mum made the Christmas pudding. The last Sunday before Advent, known as Stir Up Sunday, was the Pudding Day by ecclesiastical law. 
My mum, never one to do things by halves, made enough puddings to feed the five thousand. An enormous washing up bowl would be summoned from the utility room and sterilised. My dad (or later, me) would be sent to the shops to buy suet or mixed candied peel, or some other seasonal obscurity. A quantity of booze, usually untouched in a cupboard for eleven months of the year, would emerge. And then the weighing and measuring. She used an old Delia recipe, much amended, and a truly ancient kitchen scale that only measured in pounds and ounces. And the house would be suffused with the smell of allspice and clove, beer and fruit, the same sweetness you get in mincemeat but amplified. 

When the washing up bowl was full, sticky and incorporated, we would be summoned to stir the pudding, traditionally with the youngest going first, but as we grew older, whenever Mum could pull us into the kitchen to stir it. She was loath to portion it up for steaming until we'd all had a stir. Long after I'd left home, I would try to arrange to go round every Stir Up Sunday. It was her labour of love, giving puddings as gifts to loads of people, putting her heart and soul into it and then FURIOUSLY STEAMING THEM FOR ABOUT A DAY once they were made, in a great tower of constantly refilled steaming pans. 

In 2015, my mum's last Christmas had we but known it, her carpal tunnel syndrome was playing up so I made the pudding up. She portioned it all out, I mixed it up and got elbow-deep in pudding mix, working it together while she watched on and told me when I was doing it wrong. 

Last year, she'd just died. My brother in law, Scott, made the puddings. I'd just had surgery. Everyone was a bit numb still. There was no stirring event.

So, as it so often the case, it's this Stir Up Sunday that hurts. I could have made enough pudding to feed the five thousand, but I can't bear the thought of it, the smell, the feel, without Mum there. It's fucking freezing outside, the house down the road is beginning to put its amazing light display up, I've done most of the shopping, but it all feels unreal. 

I miss my mum. 

3 Nov 2017


A few weeks ago, I had to write about the rise of the leisure town in the nineteenth century. I wrote a 5000 word essay on Cromer, my most favourite resort in the world, and the place where we recently scattered my mum's ashes. I couldn't have written the essay without help from Mum's prodigious seaside library, and when I decided to do my MA, Mum was so excited about the idea of helping me with this essay. She couldn't help me in body, but she helped me in spirit.

When I finished the essay, I sent it to my dad to have a look and he said "I prefer your blogs". I know what he means - academic essays can rob all the joy out of a subject - so I decided to rewrite my essay for my dad's consumption, put the stuff I couldn't put in my actual essay, and put it on here. It only covers up to 1900, so you will have to go write your own essay for the Edwardian period. I got 82% for the 'proper' version.

A Brief History of Cromer as a Resort

Long ago, in the mists of time, Cromer was a prosperous market town, a little inland from the coast. It was almost the site of Edward IV's successful reinvasion to take the crown (again) from Henry VI, but he changed his mind and went up the coast to Ravenspur. But erosion took its toll. Shipden was swallowed by the sea in the thirteenth century, giving rise to certain legends, and it seems likely that part of the reason for Cromer's diminishing size across the sixteenth and seventeenth centuries was that it kept falling in the sea. In 1724, Daniel Defore, then roaming the country and writing up the first travelogue of England, said that "Cromer is a market town close to the shoar [sic] of this dangerous coast. I know nothing it is famous for (besides it being thus the terror of the sailors) except good lobsters”. Not long after, seabathing became a popular health treatment for the wealthy of the age. All kinds of hydrotherapy were used by the rich - my favourite is the visitors to Matlock Bath who paid a princely sum to have buckets of cold water dumped on them from above - and seabathing was widely accessible, and had a royal pedigree - George III in his madness was a frequent visitor to Weymouth, and Brighton developed alongside as a favoured resort, being close to London.

Cromer, however, was not close to London or any other useful municipal centre. Norwich, the closest city, was a busy market and textile town. King's Lynn, further round the coast, was a very busy port full of important folk. What secured Cromer's fortune as a future resort was its local gentry. The gentry were the celebrities of the day - in Bath, famous guests were announced by a peal of bells, as much an attraction as the spring waters and balls. In North Norfolk, Holt was the place to be. It was almost entirely rebuilt in fashionable style after a fire gutted it in the eighteenth century, and the local gentry (of Felbrigg, Gunton, and Melton Constable) held horse races, balls and assemblies to provide the rich with something to do. Where else would they go to bathe in the sea than Cromer; splendidly placed on high cliffs, with plenty of shipping and beautiful scenery, and untouched by the burgeoning industrial revolution.

Now, we skip forward a little to 1800, when the first guidebook to Cromer was published. It was written by a surgeon named Bartell, who wanted to advertise the benefits of the town, possibly inspired by a 1799 piece in Gentleman's Magazine which waxed lyrical about Cromer's coast: "Had Neptune himself sent his azure chariot to receive [me], I scarce could been more awed, more softened, or more enchanted". Bartell wrote of its beauty, its lighthouse run by two women (there's a cracking story there somewhere), and the many country houses in the vicinity for those who wanted to go and peer through the windows of the aristocracy. He wrote of how you could hear the bells of Shipden church ring at high tide (most likely nonsense, although church rock undoubtedly remained an issue for shipping into the nineteenth century). He also wrote of its dearth of attractions, complaining that all it needed was one good inn for the rich to stay in, to catapult it to fame akin to Brighton. It was already hosting the rich for short seasons in leased houses, but there was no hotel, no bath house, no assembly room.1 Cromer's population at the time was around 700 people.
Bartell's book worked. By 1815, Jane Austen was able to refer to Cromer as "the best of all the sea bathing places. A fine open sea [...] and very pure air" in Emma. This implies that the sort of people reading Jane Austen at the time knew where and what Cromer was. Cromer began to grow. Adverts such as this one began to appear, advertising large houses for sale in order to lease them out to holidaymakers:
Norfolk Chronicle 18th August 1827

A bath house was built on the seafront, as was an assembly room. These were both washed away in high seas in the 1830s, but the bath house was rebuilt soon after, and remains standing. In the 1820s, Lord Suffield of Gunton Park built himself a mansion on the cliff, changed his mind about twenty seconds later and sold the house to a developer. The developer cleared the site and built the first Hotel de Paris. This was not quite the grand structure we see today: it was small, white and two storeys high. Later, an extra storey was added on. Two other hotels (the Belle Vue and New Inn) flanked it. A little further along the cliff was built the Regency Hotel:
Engraving from 1867. Prints Collection, Victoria and Albert Museum. Original available here
It is now called the Craft Burger Company. As far as I can tell, it is the oldest hotel still standing in more or less original form in Cromer.  The Red Lion was also an early hotel, but has been rebuilt at least twice. Tuckers Hotel was popular among upper class guests, and stood near the church on Tucker Street. In 1870, Gertrude Marion Gillow went swimming from Tucker's (not a sensible move in the choppy sea on that particular day) and was washed up drowned a few days later. She was the daughter of a Kentish farmer and there was a £5 reward for information before her body was found: about four months wages for a fisherman!

The people who visited resorts liked to have somewhere to walk. This was partly because sea air was healthy and free, but also because it gave an opportunity to be seen and to hobnob with other rich guests. Cromer had a jetty, 'well paved for walking', from 1822, in much the same place the pier now stands. It was washed away on numerous occasions, but always rebuilt as the centrepiece of the town. Although the pier in its current form wasn't built until 1901, the older jetties held concerts and firework displays and functioned as the formal pier does. Happy Valley, being considerably broader in the 19thC, was also a popular place to walk. At some point in the Victorian era, this walk was paved and supplied with porches to shelter in and view the sea. When it finally occurred to the great and good of Cromer to build sea defences, lest their lovely money-spinning hotels fall into the sea, they included a promenade for guests. This was initially built in the 1870s.

It wasn't enough to have hotels and walks to attract the wealthy. Cromer's status as fishing village turned good meant it lacked the amenities that people were beginning to take for granted: safe water, gas power, transport links, room for coaches. Part of Church Street was demolished in the 1870s to widen the road to allow for more traffic. There was a daily coach in the summer season, taking guests from Tucker's Hotel to Norwich railway station in time for the 11am train:
Norwich Mercury. 23rd June 1849.
In 1866, Ellen Buxton of the Quaker banking Buxtons described her first class railway carriage from London to Norwich as "most comfortable and beautifully fitted up. There was a table in the middle, two easy chairs, a sofa fixed to the wall at one side. There was also a little carriage opening out of this big one which we called the nursery, and there was a wash basin and place for the luggage". To then clonk down to Cromer in a horse drawn carriage would have been considerably less luxurious. In the 1850s, Lord Suffield had proposed a railway link to Norwich, with the idea of improving agriculture through faster transport. It took ages to get going, but Cromer High Station opened in 1877. Almost immediately, it started attracting far greater numbers of visitors than had been expected, requiring a platform extension. It didn't provide a very fast link to London - six hours - but was still a popular and luxurious way of getting to the sea. In 1887, Cromer Beach station opened on Cabbell land, and provided a much faster link to London and the Midlands. Indeed, this new station later eclipsed Cromer High, as it was not only faster, but there was no mile trip down to the town. Then, as now, the visitor to Cromer Beach station could walk straight down to the sea, and the development on the west cliff meant that lodging houses and hotels were immediately available.

Gas power and piped water were both introduced in the 1870s, under the guidance and on the land of the Cabbell family of Cromer Hall. The Cabbells had bought Cromer Hall in the 1820s and their influence was strong; as described above, they were instrumental in the opening of the Cromer Beach station and sold off a swathe of land to be developed into lodgings and hotels along the west cliff. This network of terraces, built in the 1880s and 1890s, still stand, in their original layout, although most of the hotels have gone. The Cliftonville is still there, but the ghastly Albany Flats have taken over the site of the former Grand Hotel and the Morrisons garage is on the site of the old Marlborough Hotel. A travesty, if you ask me.

The reason the Cabbells built the West Cliff estate was primarily because of guests complaining bitterly that there was no room at the inn. When Clement Scott, he of Poppyland fame, arrived in Cromer in the early 1880s, he couldn't find anywhere to stay so wandered off to Overstrand looking for lodgings. As you do. In doing so, he discovered the church tower on the cliff, the Garden of Sleep, and weaved the mythology of Poppyland, so potent that it remained in advertising use for a good century after he wrote about it. So perhaps the lack of lodging was a good thing. Or perhaps it was simply overstated to discourage common visitors from coming to have a look. One thing that became abundantly obvious when researching Cromer is that its reality was a far cry from how it was advertised. Cromer was undoubtedly full every season, but the advertising was designed to underplay its attractions. One guidebook said "on undeveloped tastes, Cromer would be thrown away". In 1800, Bartell wrote pages on the art, the light, the beauty, while acknowledging there was nothing much to actually do. This was more or less true in 1800. However, when Clement Scott wrote eighty years later about there being "nothing to attract the fashionable young lady", he was LYING. Oh the lies Scott told! "We have no representative brass band, no rotunda on the pier head, no fashionable promenade, no evening dances, no assembly rooms, and very few opportunities for social intercourse". There was no brass band or rotunda, that's true enough, but there was a string quartet, regular concerts in the inns and on the jetty - even fireworks displays. There was at least one assembly room in 1880. The only possible conclusion to draw from these lies is that Scott was trying to put off the working class hordes that had begun to infiltrate Great Yarmouth and Hunstanton. THERE'S NOTHING HERE, PEONS, STAY BACK! A scant twenty pages later, he calls Great Yarmouth "a playground by the sea". Scott wanted to protect his little Cromer haven from the influx of Sheffield smiths that were already using Yarmouth as their preferred holiday destination.

Was he successful? Of course not. In every directory of businesses published in the 19th century, Cromer is described as a 'fashionable bathing resort'. The rich residents of Cromer - the Gurneys, the Buxtons and the Barclays all made their holiday homes here - were a clear indication to those in the know that this was no mere beautiful backwater. A look at the businesses listed in the directories back this up: no less than two piano warehouses in Cromer by 1892 were surely a sign of the upper class. The residents of Church Street doubled in number between 1851 and 1891, and a few fisherman aside, most were affluent and had servants. Almost every business also offered rooms or apartments to let - usually those above the shop. Holidaymakers were huge business. However, Cromer remained difficult to get to for those who could not afford the train fare, and maintained its exclusivity well into the Edwardian age.
Some of its poshness can be ascribed to the Prince of Wales, later Edward VII. Edward VII made his home at Sandringham, about forty miles from Cromer, from the 1860s onward. He was a regular visitor to Cromer, and patronised the golf club from its inception in 1887. The Royal Links Hotel (long gone, alas) became the royal residence of choice when visiting. His sister, Princess Louise, and daughter Princess Victoria, were frequent guests.

And so, here endeth the tale of Cromer, before the pier was built, before the Seaside Special became the longest running end-of-the-pier show in the country, before Henry Blogg became a household name, before Winston Churchill summered in Overstrand. Before Paul Theroux had a chance to describe it as “very empty [with] a sort of atrophied charm, a high round-shouldered Edwardian look, red brick terraces and red brick hotels and the loudest seagulls in Norfolk”. From fishing village, to a town with a population of 3700 in 1901, Cromer blossomed throughout the nineteenth century because of its exclusivity, rich inhabitants and royal allure.

A quick note: an assembly room was basically a space for hire, where you could hold balls, lectures, concerts etc, like a very posh community centre. They were usually owned by the local bigwigs and the events were accessible by subscription to keep the riff raff out. Coaching inns usually were built with an assembly room, to increase the profitability as well as to attract customers. Towns like Stamford had as many as three assembly rooms in the early 19thC.

29 Sep 2017

The Anniversaries

My dad said, rhetorically, on the anniversary of my mum going into hospital "Why do the anniversaries hurt so much? What makes that day different? Why a year and not eleven months and two weeks"

If only the anniversary of Mum's death was one day. If only the whole of autumn was not stained by loss. My mum lay dying in the garden as the leaves turned yellow and red and brown, and as they fell from the trees, her life fell away. There were conkers and chilly, bright days. There were crosswords, and quiet reading wrapped in fleeces, and five different drinks in case she got thirsty. There was family everywhere, always. The fairy lights twinkled around the garden. The rain swept in and our frightened tears turned to a strange mix of waiting and desperation. It turned cold. Mum still went out for a fag, even if she forgot to smoke it while she was there. And she slipped away quietly, without an audience, on a dark October night. That day was eleven months and two days ago. That day, to quote my six year old, was ages ago. That day may as well have been yesterday for all the difference time makes.

They say time is a healer, and they are quite right, but grief is an unfathomable chasm to cross. It is far easier to say she died eleven months and two days ago than to admit she will always be gone. The first anniversaries are always the strongest, whether it be a happy anniversary or a bad one, but I have no illusions that everything will be fine in a month's time. Or another year. The shock has faded. The reality is unconscionable. The memories, some wonderful, some unpleasant, churn around and keep me awake.

I am flattened by grief at the moment. I wake up exhausted regardless of how much sleep I get, and my head hurts, and my eyes are swollen, and my body is numb. It's as though I have cried all night, but I cry so rarely. I sometimes wonder if my soul is crying all night and my body just hides it away. Maybe I'm doing the grieving in the background because I ensure I have too much to do to ever let it overwhelm me. The slightest hiccup sends me floundering without anchor.

Anniversaries are hard. And when a whole three months is anniversaries, it's even harder. We will endure.

15 Aug 2017

I Miss You

To grieve is to be human.

We all love. We all lose people we love. It never feels timely. It never feels right. There is a grave injustice implicit in loss. There could always have been one more day. One more perfect day, spent well in good company. There is so much regret. There is so much to miss.

Grief is so lonely. For such a collective experience, there is isolation in grief.  Those who know grief understand. Those who have not yet experienced it are wary, struck dumb by not wanting to say the wrong thing or full of platitudes. Lord knows, it is hard to say the right thing.

For the one grieving, there aren't words. There aren't words invented to express the spectrum and depth and breadth of grief. There aren't words to describe the cold-water shock of the world without them, the torrent that sneaks up to engulf you when you don't expect it. Metaphor and simile are a poor substitute for the silent, numbing, screaming agony of loss.

It was my third wedding anniversary last week. On my first wedding anniversary, I had a month old baby. My mum made me and Tom a three course, takeaway meal and looked after the baby for an hour so we could nip to the pub where we had our wedding anniversary for a drink, and the kids for a bit longer so we could eat our takeaway meal in peace. On my second wedding anniversary, I held her hand in hospital. This year, we went out for lunch and as we were leaving, I went to grab her a menu*. And then I remembered.

The slings and arrows of grief come suddenly, from nowhere. It has been nine months and nineteen days since I saw Mum breathe. I have not recovered from the shock of a loss we knew was coming for three months. I have tucked my pain away in a pocket called "later", holding it at bay for a time when I have time to consciously grieve. But there will never be time, so instead it lies beneath the surface and comes spilling from the blue, particularly at this time of anniversaries. The anniversary of her initial illness has passed, so has the anniversary of her diagnosis, and her hospital discharge. But the next few months are chequered with memories of the same days of last year, those nightmarish, weird, unreal days of happiness and fear, joy and pain.

I wrote last year how I might not get to taste my mum's roast dinner again. And I never did. She taught my dad how to do it, but it's not the same. Such a tiny thing to pierce the soul. There are millions of tiny needles, just piercing the skin, each one labelled with something she did that she doesn't anymore, and sometimes they don't hurt at all. Sometimes they dig deep.

This is nothing unique. This is nothing special. This is universal. So why does it feel so lonely?

I miss you Mum.
In every single thing. In every phonecall I would have made. In every word I write. In every book I read. In every photo that you're not in.  In every photo that you are in. In every conversation I have. In every meal I cook. In every meal I eat. In every news story, in every tennis match, in every gathering.
And every time I go to bed, and every time I wake. And in everything the children do, and say. In everything I do and say. And everywhere I go.
In every sunset, in every sunrise. With every tide. On every single wave. In every shooting star. In every breath of late summer breeze.
I miss you. The world is not the world without you.

* Mum collected menus. She had hundreds, stolen from such diverse places as Spanish kebab shops and Rick Stein's restaurant in Padstow. The rules of eating out for us children were simple: nick a menu or memorise what you ate, because there will be questions.

21 Jul 2017

The EHCP! Part One: Applying

In the olden days of pre-2014, kids with Special Educational Needs and Disabilities (SEND for short) got Statements of Special Educational Needs. These were legally enforceable requirements to assist children through schooling. But the government got rid of most of these because they were legally enforceable and sucking up budget like nobody's business.

And now, instead, most SEND children get very little support at all. Schools are expected to fulfil children's support needs out of their budget. If they can't, they can apply for an Educational Health and Care Plan, which covers children until they are 25 and is supposed to be a more holistic representation of needs than statementing ever was. EHCPs have no force in law, but they do have to be agreed with the council and budgeted.
The government expect 2% of all school children to have needs that require an EHCP, which sounds suspiciously like a target to me, but I cannot be ARSED to do all the FOI requests to prove it.

To get your kid an EHCP, you first have to apply to the council. You can do the application yourself, or the school can do it. I have wanted to apply for an EHCP for Jim for two years, but this was the first year the school agreed they couldn't manage without one anymore. I would strongly advise getting the school on board before you apply, or getting them to lead the application. Your SENCo will know whether your child is likely to be awarded one and on what grounds. The application form is long and requires evidence. Lots of evidence. Evidence with clear links showing what has been done, what is in place and why this is not enough. For Jim, this ended up being seventy pages long. If you are even considering an EHCP in the future, check that your papertrail and the school's papertrail is in place. Get copies of every letter that pertains to your child. Be involved. Be honest.

Now, when the council get your request, they have four weeks to get it to panel. The panel comprises various experts in children's health and they decide whether or not your child gets an Education and Health Assessment (EHA). If your child does, then the assessment process begins. If not, you can reapply entirely or appeal. The council usually phone you with the results of the panel, and will advise you to get in touch with their parent-council advisor (also known as SENDIAS or SEND Partnership) for help.

Guess what happened when Jim's case went to panel?
They rejected it because the paperwork didn't demonstrate that his difficulties were due to his autism.
So, after taking advice from the school and the SEND partnership lady, we decided to go to mediation.

First, I had to apply for mediation with an independent charity. Although I did this immediately after receiving the letter from the council, it took me a week to get through to the charity because of being on holiday, and another week to set up the pre-mediation chat about whether to go for mediation or a tribunal. If I had decided to go to tribunal, I would have been issued with a certificate to say that mediation had been bypassed.

The mediation charity then set a deadline of when the mediation had to be done by, and got in touch with the council for a date.
I waited.
I waited a bit more.
Eleven days, in fact, I waited.
And then they sent me two dates, both after the mediation deadline date. Not only after the mediation deadline date, but in the first week of the summer holidays. Call me cynical, even paranoid, but it felt calculated to minimise the ability of school staff to attend.

I er...expressed my displeasure politely, agreed to the date and then waited.

While I waited, I spoke to the school, I spoke to the mediator in a premediation chat which formed the outline of my case and I spoke to the SEND partnership lady. And I stressed and I vexed and I worried. The problem with being Jim's sole advocate is that it is all on me. One wrong sentence, one form filled in on a bad day, and he gets nothing. The SENCo was confident that the council would overturn the decision but I was not.

Mediation day dawned. I had a very stressed week before, worrying. I mean, ultimately if you're unsuccessful, you just reapply. There's nothing stopping you applying every month until they give up if you want to. But it doesn't feel like that.

Mediation requires someone with decision making capabilities from the school and the council, the parent and the mediator. The parent can invite other people, including the child at the centre of the case. I invited the SENCo, Jim's TA, and the SEND partnership lady (who couldn't come). I decided not to bring Jim as the first day of the holidays is not the time to be dragging an autistic kid back into school. In addition, a man from the council who hadn't sat on the original panel attended, and the mediator. The mediation was held at the school, but you can request it to be held elsewhere if school is not neutral.

And so off we went. We started by signing forms - whatever is said in mediation cannot be used if the case goes to tribunal, no minutes are taken, and it's entirely confidential. We discussed Jim, and his issues, at great length, for two hours. I took my Giant Folder o'Jim and was able to evidence how long his issues have gone on for, and prove his behaviours have deteriorated. This is all important and useful. The decision was overturned.

An action plan was formed. In September, we will proceed as though the rejection and mediation had never happened and I will tell you all about the rest of the process when it's finally done.

If the mediation had not been successful, we could have proceeded to a court tribunal. As this is just for an assessment, the judgement would have been done on paper only - we would not have had to attend and all the paperwork from the initial application, the initial decision, and the mediation would have been used to make a final decision.

The other time you can request mediation in the EHCP process is if you do not agree with the provisions the council are prepared to make. The process is the same, but if you then go to tribunal, it is done face to face in court.

It's such a stress, but it's so necessary for a child like Jimmy with such a classic autism presentation. He's going into year four in September, puberty looms in the future, and it terrifies me. We began this process in April. It's now July and I feel like we're finally getting somewhere.

13 Jul 2017

Charlie Gard

Charlie Gard is dying. He's been dying since the moment he was conceived. He has mitochondrial deletion syndrome. To put it very simply, the batteries in his cells don't work. There is no treatment for his condition: it's extremely rare and where diseases are rare, you have to improvise as you go along. He has been in Great Ormond Street Hospital for months, kept alive by machines, because keeping him alive is all they can do for him. My family has personal experience with GOSH's genetics team and you'll find no criticism of them here. Where there is hope, they will do whatever they can.

But it's hard, so hard to accept there's no hope, especially in a child so small. His parents have gone to every single court in this land and in Europe, begging for a chance to send Charlie to the US for experimental treatment: experimental treatment that even the doctor advocating it admits won't save him. They have blamed GOSH's workplace culture, saying GOSH refuse to admit they may be wrong about his chances, his prognosis. Their case has gone, to use a rather grim medical term, viral. Donald Trump has stuck his oar in. So has the Pope.
Today, the case goes back to court, to be tried on fresh evidence that Charlie is growing. The hospital say he is not growing. His parents say he is. The judge says he wants proof, and will base his judgement on that proof.

There are several contentious points here:

Medical Ethics
Is it ethical to send Charlie to the USA for treatment? In the UK, candidates for experimental treatment must be able to consent, they must be kept safe, there must be a fair chance of a good outcome. Charlie cannot consent. There is almost zero chance of a good outcome. The reason GOSH do not want him to take part in the trial is because it will make no difference. The reason the US doctor wants him in the trial is because people with mtDNA conditions this severe rarely survive - he's a useful little guinea pig. The key ethic in medicine is DO NO HARM - do nothing that will make the patient worse. Now, Charlie's ultimate outcome is death whichever way you look at it, but there is real suffering implicated in making a tiny baby travel nine hours across the Atlantic, in intensive care, for futile treatment which may kill him in the USA meaning his parents will have to repatriate his body, far away from their network of support. If he survives, he will come home and continue to require high dependency care for the rest of his life. It is traumatic enough to have a child in GOSH, which is often miles away from the family home. To have that child on a different continent is many times more traumatic.

The Rights of Charlie vs The Rights of his Parents
I have seen a lot (A LOT) of people insist that Charlie's parents have the right to decide whatever they want for their child. This is, fortunately, absolute bollocks in law and in practice, to prevent child abuse. As soon as a child is born, they have rights in law to be protected by the state in cases where a parent could do them harm. As described above, the move to send Charlie to the US can easily be considered causing harm to him. No parent is capable of making objective medical decisions about their child, which is why ethics panels exist, which is why doctors try to work with parents to do what is fair to the child. This is why Charlie has his own advocate in court. His parents are fighting for his life at all costs. GOSH are fighting to end that life. Charlie is neither old enough nor capable of having a voice. He gets no say in this.
But his parents, his poor parents. They have the most difficult time of all. Not only are they fighting to save their child, however fruitlessly, they are fighting the state on this matter. When you have a disabled child, however small the disability is, you have to fight and advocate and it feels like the entire system is set out to be as obstructive and difficult as possible. The NHS is an enormously potent and powerful institution. Of course his parents want to take Charlie to the US. Of course they want to exhaust every single possibility. How will they live with themselves if they give up? Every parent would do the same. There may be an unreality about their hopes and ambitions, but he's their baby and they're with him every day. What else can they do but fight?

The Interference of Donald Trump
Urgghh, this man. In case you know nothing of US healthcare, they don't have an NHS. All their healthcare runs on insurance, to a capitalist model that doesn't really work (as previously discussed, it's very difficult to run a capitalist health market when the ultimate outcome of the consumer is death - no profit). Obama brought in an Affordable Healthcare Act (known as Obamacare) to try and implement universal healthcare provision. Trump and the Republicans FUCKING HATE the ACA. Not only are they dismantling it, they are also attempting to bring in legislation to give insurers more power to refuse healthcare to people with preexisting conditions - preexisting conditions like having previously taken contraception, having been pregnant, having been raped. The Republicans do not believe that healthcare is a right.
So, it's somewhat ironic to have both Trump and his VP, Mike Pence, shout that Charlie should be allowed to go there for medical treatment. It is likely that they are going to use this as a stick to beat the NHS with, and since the NHS is one of the bargaining chips that Theresa May has admitted she is prepared to use to establish a trade deal with the US, WE SHOULD BE CONCERNED.

The Interference of the Pope
The Roman Catholic church believe in the inviolable right to life. No abortion. No euthanasia. You would think that the Pope would accept God's divine will in this sort of situation. Apparently not.

BUT THEY HAVE RAISED OVER A MILLION POUNDS!?!! It's not about money. The NHS regularly invest millions in treatment for dying children to improve their quality of life - essentially throwing that money away since it's not curative. But it works both ways. You cannot throw money at illness and hope it goes away (although, money sure helps).

The shift in media's tone has moved away from SHOULD he be allowed to have this treatment to WHY WON'T ANYONE SAVE HIM? There seems to be a total disconnect of the reality of Charlie's condition. If the court rules he can go to the US, he has the treatment, the treatment somehow works a bit and he comes home, he will STILL be terribly ill and disabled for life.

Sometimes, medicine can't help, and that's the real problem here. It's not about citizenship, the perceived failings of the NHS, the monopoly of GOSH, the court system, money, or human rights. It's about the fact that medicine is unlikely to help this child and that is a blow to the heart of us all. Our culture has a faith in medicine, that one day it will destroy death itself, and this sort of case reminds us that medicine is fallible, some illness is written on the genes, and any of us could have a child like Charlie.