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.

25 Jun 2017

Racing for Life

Me, my siblings Eliza, Jess, Sooz and George and my sister-in-law Rosie are doing Race for Life 5k at Peterborough on Sunday in memory of our Mum.

My mum never saw an oncologist. She wouldn't go. She knew there was nothing they could do, so she wouldn't go. It made no difference. But it meant we were never offered genetic counselling or testing to find out if we carry the genes that make some women more susceptible to ovarian cancer. We don't even know for certain where Mum's primary cancer site was; the histology was not clear. Having endometriosis means I have an increased risk of ovarian cancer anyway, but my gynaecologist is reluctant to test me for the genetic fault on the NHS until someone else in my family gets it. As the oldest ovary-containing child of my mother, the test case is me.

My mum's type of cancer was unusual and incurable. Even if she had been diagnosed two years before, when we suspect it started, she would have been dead within five years. And she would have hated that. She would have hated the tests and the treatments, the desperation and the fear and the hope that led nowhere. I am glad she didn't know. As we come up to the anniversary of her diagnosis, I am glad that we didn't know.

But now we know.

We are not just racing for life. We are racing for hope. Hope for ourselves. Hope for others. Mum has not been the only cancer death close to us in the last year.

So we run (/walk) the Race for Life, and we hope that we live to be a hundred. We will walk around a field on a Sunday morning in the hope that we never have to go through this again. We will walk, we will sweat, we will giggle, we will pant because we are hopelessly unfit, and we will hope that if it happens to us, they will be able to help.

As of today, we have collectively raised £815 (+£167.50 gift aid) and we are so grateful. That's the cost of two MRI scans. The cost of two colposcopies to diagnose cervical cancer. Four prostate biopsies. Eight sessions of chemotherapy.

It's a lot. It's not a lot.

Please donate if you can, if not to us, then to someone who else who is racing or directly to Cancer Research.

August 2016 <3

14 Jun 2017

London's Burning

Imagine your house catches fire.

Imagine, worst case scenario, it burns down and the fire investigator declares it was because your electrical supply wasn't earthed, a dangerous, but preventable occurrence. Imagine, as you sift through the wreckage, how fucking furious you would be.

Now, imagine the above, but also imagine that you knew about this electrical fault. You'd known about it for years, and spent years trying to get the electrical company to come and fix it, only to be told it was fine and to stop making a fuss. Imagine your rage.

This is akin to what the people of Grenfell tower have suffered today. Because they knew their house wasn't fire proof. They knew there weren't enough fire exit routes. They knew the cladding the council had covered the building in was iffy. They knew what happened to similar tower blocks in the area. They knew. And they were absolutely powerless, as council tenants, to do anything other than try and get the word out.

Nobody knows what caused the fire. They've only just put it out; we won't know for months. But we do know that the tenants were formally advised to stay in their flats and put wet towels against the bottoms of the door in case of fire, because the fire wasn't supposed to be able to spread. The flats were supposed to be self-contained fireproof units. The tenants ignored this advice, and thank god they did, or they'd all be dead by now.

Some are dead. Many more are injured. And everyone who lived there has lost everything they owned. Perhaps that is the part that will resonate most strongly. We've all made the mental lists of what we would grab in case of fire, knowing deep down that we probably wouldn't grab anything in our haste to get out. There's nothing left of Grenfell Tower. It will never house anyone again.

I have seen many people say that this is a tragedy that shouldn't be politicised.
I did not see these people claim that terrorist prevention talk was politicising a tragedy after Westminster, Manchester and Borough Market. I did not see the people claim that dead Syrian refugee babies being washed up in the Mediterranean was politicising a tragedy. I did not see these people claim that talk of gun control after Sandy Hook was politicising a tragedy*.

Is a tragedy more or less political when it is directly caused by a lack of legislation?
Is a tragedy more or less political when it affects the poor rather than the unlucky?
Is a tragedy more or less political when it throws the unsavoury housing policy of the incumbent government into sharp relief?

More people have already died at Grenfell tower than died in the whole Great Fire of London.

When David Cameron began to gently dismantle public safeguards and services, he tried to package it as Building a Big Society, where everyone helped each other, so there was no need for governments to do it. Kensington has absolutely thrown itself into helping the people of Grenfell tower, with massive donations of money, goods and services. The badly cut fire and ambulance service has been out in force. But it should not have happened in the first place.

Ultimately, people should not have to face the possibility of losing all their possessions, their home, their loved ones and their lives just because they are in poorly tended social housing.

I hope this sparks reform, I really do.

*Well, I did, but mostly from gun-nut Americans and they are not my friends. 

3 Jun 2017

Stewart Jackson: Redux

It's election time once more! Last time, despite my pleas, Peterborough foolishly elected Stewart Jackson as MP once more by a scant 1950 votes. And, as his leaflet dropped on our doormat the other day, let's take a look at the Life and Lies of Stewart Jackson.

So, the front page. Stewart Jackson stands with Theresa May, as you'd expect really, considering he's a Tory. He's hardly going to claim he hates the bitch and would make a much better PM. There's also a photo of him beaming in front of Peterborough guildhall and supporting a bee protection charity. That's ironic since he's consistently voted against climate change protection measures.

Within the leaflet, he marks out the work he's done for the area, like blocking the solar energy farm that was going to be built on Newborough fen; raising a petition about Werrington freight line  - he doesn't mention it submitted before GE2015, went unanswered, and the plans went to the secretary of state three months ago - and trying to improve the A47, which is underway, notably with the FUCKING AWFUL traffic lights at Wansford A1 junction. Such a trooper. In fairness to Stewart Jackson, he does write to the cabinet with questions pertaining to Peterborough (most of which already have answers available in the public domain), and voted in around 85% of all votes. He pushed for Brexit, which is no surprise, and he's even curbed his expenses a little. He's very proud of Peterborough's low unemployment rates. He also claims that the NHS is his top local priority, which is an absolute joke considering his voting history.

His voting record remains a catalogue of misery for anyone who isn't an older, healthy, white, heterosexual, salaried, homeowning British citizen.
He has consistently voted against gay rights, race laws, benefits being raised in line with inflation, and increasing jobs for young people. He has voted for the bedroom tax, for restricting disability benefit, for restricting disability benefit to those who have been disabled from birth/youth. He has voted against limiting letting fees for tenants. He has voted against people with cancer receiving extended ESA, He voted for the tuition fees raise, for the academy system, and for the various bills undermining the NHS. He has voted against ID cards, but for mass data retention (the Snooper's charter). He voted against a right to remain for EU citizens. He has voted against special provision for military families in the welfare system. He has voted against slowing the rise of rail fares. He has voted against nationalisation of public transport.
Of course he has, he's a Tory.

The rest of the leaflet is given over to the words of The Great Leader Theresa May. Theresa swears she has set out a clear approach to Brexit, which...has she? Really? She says she has a strong negotiating hand. The Tories have been openly mocked by the rest of the EU and Theresa May has demonstrated that she couldn't successfully negotiate a child's bedtime. We have nothing to negotiate with, except tax haven status,
And then, in a rehash of the last election, we are told our election choice is Strong and Stable Leadership in the National Interest OR A COALITION OF CHAOS with Jeremy Corbyn and Tim Farron. DO YOU MEAN TO TELL ME, CONSERVATIVES, THAT A COALITION GOVERNMENT WITH THE LIB DEMS IS A BAD IDEA???

The leaflet then tells us that Trump winning was a shock, even though Theresa May fell over herself to rush over there and hold his grubby, orange mitt. Brexit was a shock, even though the Tories definitely wanted it and it's gonna be amazing, honest guv. And Corbyn winning two leadership elections was a shock.

Maybe Britain is fed up of your lying bullshit about caring, Theresa. Maybe hardworking British families, who are also apparently irresponsible benefit scroungers, have had enough of your shit, of your punishing the economically weak for the faults of the strong, of being told if they would JUST WORK HARDER, they too could be RICH. Maybe normal British people fancy someone with a bit of integrity, someone who is decent, who inspires faith in the politically inactive. Someone who hasn't promised on national TV to NUKE THE WORLD, you fucking bloodthirsty maniac. Maybe the national debt going from five hundred billion pounds under Gordon Brown to a staggering ONE THOUSAND SEVEN HUNDRED AND THIRTY BILLION POUNDS in just SEVEN YEARS of Conservative government doesn't inspire a lot of confidence about your FUCKING ECONOMIC NOUS, which has always been the Tory selling point.

People are dying under this government, unnecessarily. The NHS is being stealthily dismantled, as is the social care contract. We go headlong into Brexit, fronted by a vindictive racist who couldn't lead herself out of a paper bag; who thinks you will vote Tory because you think they're a safe pair of hands. They aren't.

All voting information from They Work For You. Economic information from UK Public Spending. Leaflet published by Matthew Dalton on behalf of Stewart Jackson. Vitriol my own.