Friday, 28 February 2014

Coke Floats & Chemo: Shocking care politics

Coke Floats & Chemo: Shocking care politics: Toby's been living in a Residential Care Home now for just over a week, and I'd love to tell you everything is settled and happy, bu...

Shocking care politics

Toby's been living in a Residential Care Home now for just over a week, and I'd love to tell you everything is settled and happy, but it's still very early days. I've seen him lots, and each time all he says is "Mummy's House" over and over again, meaning the exact same place he always used to call "Home" when we were out and about and he just wanted to get back and chill. 

I know he's having some happy times there, because when I ring up (which I can't seem to stop myself doing several times a day) I can often hear him in the background laughing or making his very own distinctive whooping noises, but it still feels like I've lost a limb. We're taking it a day at a time, and at the moment I'm going to visit every second day, but I don't think it's a good idea for him to come and visit us just yet, because he would think we've collected him and brought him back home for good. 

We get a lovely welcome when we visit, not just from Toby, but from all the residents. They don't get many visitors in the home, and so they have all adopted WM and I as their own. If Toby gets a hug, they all want one. There is a bit of a fascination with the fact that Toby has actually got a "Mummy" at all. The residents who can talk all chat very openly about how their Mums and Dads died, and then they moved there. One resident told me that you have to have a dead mummy to live there, and another one asked me "Are you going to die soon, then?". I find it quite hilarious, luckily, considering that Toby's only had to move out because I've got incurable breast cancer. One lady was chatting on about her parents, and I asked her if she missed them. She said, "No, course I don't miss them, they're dead, so they're gone". The matter of factness that sometimes accompanies learning disability can sometimes just break your heart. 

Their openness is also very reassuring. They all seem to want to take Toby under their wing, and it's obvious that they are looking out for him, just as they clearly look for each other.  They also talk about how lovely the home is, and how kind the staff are, all things that you just hope against hope are true even when you're not there to see what goes on, but it's clear that everyone is well cared for, and they all seem to have a very relaxed, happy rapport with the staff. 

I'm trying to get a new perspective on Toby's move. Instead of comparing it to how his life was a couple of weeks ago, still living at home, I'm trying to compare his arrival in new circumstances with the experiences of his new house-mates. It must be so awful arriving somewhere completely new and alien, within hours of losing a parent. These people don't have the understanding or the awareness that most of us have, they must be so bewildered and bereaved, but without the capacity to be comforted and reassured. It must be so frightening, and so desperately sad too. 

By comparison, Toby's had the opportunity to spend a lot of time there over the past few weeks, staff at his college have supported him in buying things for his room and decorating it with lots of photos and things he likes, he knows we live directly opposite and that we'll see a lot of him, and he is still in exactly the same community he grew up in. Yet it's still hard, and he is still bewildered and confused, so goodness knows how hard it must be for most people in his situation. 

I had a really tough time in getting our local authority to agree to fund his place there. The current sociological ideology is that all adults with learning disabilities must be placed in a new type of housing called "Supported Living", and the very concept horrifies me, along with thousands of other parents in my situation. 

The sad thing is that nearly every individual you come across within Social Services is coming from a good place in their hearts, and they are striving to do their best. They must often share the same frustrations we parents feel, and too often, they get cast in the role of the "bad guys". The real bad guys are the ones that simply don't pump enough money, resources, thought and infrastructure into the system they have to work within. They have too many vulnerable people to support, with nowhere near enough funding. So it's often the Social Workers themselves who have to be the messenger, the one who says no to something that the family feel is totally essential. There are no winners in this awful situation, the Social Worker feels dreadful and the family too. 

We were very lucky, we had a very pro-active Social Worker who understood immediately why I wanted what I did. Her honesty really helped make the whole process easier, she was very upfront and told me not to get my hopes up, and explained all the hurdles ahead, but she promised she'd try. Somehow she helped to make it happen. I'd love to buy her chocolates, flowers and champagne as a Thank-you, but sadly, I'm not allowed to. Social Workers have to work within such restrictively tight rules and regulations, that even the tiniest box of chocolates is seen as bribery and corruption, and could lose her her job. 

In the same way as many Statutory organisiations, the individuals within the system are fighting too, to somehow make sense out of a framework that simply cannot work. They are fighting to make a difference to people like Toby, and so often, despite their very best efforts, nothing changes. The policy makers base their decisions on evidence-based research, but sometimes this means taking a broad-based stroke and applying it to everyone, without the flexibility to see that one size really often doesn't fit all. At individual Local Authority level, sometimes this ideological thinking is adopted too quickly, or without the financial resources to really make it happen the way it should, and then the Social Workers have to deliver a watered-down version of something that could have been really good, but actually doesn't work that well for many of their clients at all. They can see this. The clients can see this, and their families can see this. Yet it's always the poor Social Workers that get the blame. 

The ideas behind Supported Living come from a good place, but are being interpreted too widely, and much too quickly, with little long-term thought seemingly being applied. Basically, the idea is that everyone deserves to live autonomously in their own home, with carers coming to them and doing the things with them that they need to be done or that they want to do. It's a fabulous idea if you apply it to the frail elderly, because it means that they can keep their independence and still maintain their own home. However, even with the elderly, the way it is being administered leaves a lot to be desired - a lot of them are trapped in bed until somebody arrives, flustered, overworked and running late, with a 15 minute window of time to get them out of bed, toileted, washed and breakfasted before moving on to their next frail client. The poor care workers don't have time to do what these old people really want, to stop and chat and pass the time of day. They are so time-pressured, and they are working alone and unsupervised, so with the best will in the world, impatience verging on the abusive must occur sometimes. 

The ideology behind it is quite frankly, superb. Let the elderly live longer in their own homes with support. However, the support is lacking, because it is so badly underfunded, and until we, as a society, can prioritise the vulnerable and demand excellent care-standards for all, this situation will continue. 

Supported Living also works reasonably well for those who are physically disabled, but need practical help either with personal care or with their chores. It has to be a much better way forward for these people than consigning them to a care home with no bright future to look forward to. 

In Supported Living placements, the person with disabilities is in the driving regarding all aspects of their finances, paying their own bills and rent, and even becoming the direct employer of their carers, so applying it to people who have severe learning disabilities like Toby will always need a bit more thought, and sometimes it's the thought that goes missing. 

Researchers have surveyed people about what they want, and of course, most people do want a home of their own with as much independence as possible. However nobody asks the young people like Toby, simply because they cannot talk fluently, or even if they can, they lack the capacity to understand the full implications of what Supported Living means. 

However, because they have so much so-called "evidence-based research" at their disposal that this is the sort of housing model "disabled" people want, the policy makers then extrapolate the findings and apply them even to the Tobys of this world. It is so plainly wrong. 

In Toby's case, with the severity of his condition, he would get 24 hour care in a Supported Living environment, but he would be living alone and isolated from the world. I've seen some of the specially designed Supported Living housing units built in the last few years by our local authority, and they are stunning, self-contained flats in a beautiful block with an impeccably landscaped garden. However, all seven residents in the building live alone, and there isn't even a communal living room. The block is staffed by 5 staff during the day, and as part of this new so-called independence, all meals must be individually cooked in the individual's own kitchen. So you can just imagine, instead of being able to produce one nice home-cooked meal for all seven residents, the staff are running up and down the stairs, in and out of the flats, trying to cook like crazy. How could you leave Toby alone in his flat with the cooker on and pots boiling while you rush to turn someone else's sausages in another flat nearby? Well you simply can't, or you shouldn't, or you have to compromise. I wondered how often these people actually managed to get decent, tasty, nutritious meals, or if they instead had to make do with quick and easy ready meals or cheese on toast most of the time. They are also living yards away from each other, but totally isolated, with chances to meet each other few and far between.  Meanwhile, what of these people's mental well-being? Never seeing anyone other than a rushed-off-their-feet carer? Lonliness and isolation leads to major depressive symptoms, which can escalate into very serious mental health issues in people with learning disabilities, but unfortunately, much much harder to spot. 

Believe it or not, the people imprisoned in those self-contained flats are probably the lucky ones. The others are often encouraged to take on a tenancy agreement and rent a flat wherever they can afford. They are cared for round the clock by a series of lone care workers, with no supervision, often no training, and no safety net of colleagues for the care worker to share the stresses and the frustrations or concerns. 

Meanwhile, who takes overall control to manage all the medical appointments, plan his activities, ensure his finger nails are trimmed and his hair is cut? How can being cared for by one lone carer after another prevent all the little things from falling between the cracks, and how can his health and well-being be properly monitored? Most of all, how can abuse be prevented? A whole parade of carers would have uninterrupted time alone with Toby, who knows how they might really behave towards him? Some of them would also have to have access to his money too, it just is too frightening a thought to even go there as to how he may be treated. 

 However, I've talked my concerns over with social workers in the past, and it's all OK actually. Guess why? Apparently, there are virtually no incidences of abuse reported in Supported Living schemes. So that's alright then. Actually no, it is not. The operative word here is "reported". These vulnerable people are incapable of reporting abuse, and unless it gets reported it doesn't exist. In a meeting a couple of years ago, a very senior Social Worker who I have enormous respect for, and who is a very intelligent and caring person assured me that people in supported living arrangements are proven to be much safer from abuse. We discussed it at length, bantering it backwards and forwards, but without finding any common ground at all on this issue. Sometimes, I think that Social Workers are prevented from expressing their own views, but are expected to swallow the latest ideology hook, line and sinker, for fear of seeming to be letting the team down in some way. Either that, or those at the top really do believe it all.  

Another aspect of this new style of care is the social services ideology that these adults with Learning Difficulties must "access the community" as much as possible. That means going out and about to you and me. However, the community these vulnerable people access is often hardly welcoming to them, and there is little for them to do once they are accessing it. You have almost certainly seen a lone adult looking very bored and disengaged while drinking a cup of coffee and eating a slice of cake in a coffee shop, sitting opposite someone, equally bored and dispirited, with obvious learning difficulties. You may have also seen them leave the coffee shop, a mismatched pair who obviously have nothing in common, barely talking, often with the carer striding ahead, maybe talking animatedly into their mobile phone, while the learning disabled adult shuffles some paces behind, looking lost, sad and dejected. Yes, you too have seen the brave new world of care in the community, and it makes a fallacy of the word "care". This is everything I never want for Toby.

Up until 15 or 20 years or so ago, people like Toby would live in large, Victorian style mental institutions, locked away from society. They are remembered as barbaric, cruel places where abuse was rife and the vulnerable were infantilised and treated abominably.

 However, when I was a teenager, our school used to arrange for volunteers to help out at one of these places every Sunday, and I was often on the team. I remember them differently, and with fondness. Obviously, staff are all going to be on their best behaviour when there's a team of 16 year olds with their teacher on the premises, but I remember all the activities they had on offer. It was huge, like a village, but they organised a whole range of activities for their residents, football, gardening, discos, games, drama, singing... all sorts of things. Yes they were locked away, but that also meant that they never got bullied or taunted or laughed at in the street. In some ways, I think Toby would have loved some of the aspects of that large scale care, certainly due to the economies of scale they were able to offer their residents a very full and active life on some levels. 

However, there were some appalling abuses going on virtually unchecked behind closed doors too, but we must never forget that the vast majority of the staff were doing their best with kindness, in exactly the same way that staff behave now. 

So we moved all these people into the community, in small scale homes and units. Most of them were and still are lovely. Some though, guess what? Abuse happened. The Panorama Documentary which uncovered the vile cruelty of Winterbourne View lives with me forever. 

So now, the policy makers are using abuse as another reason why these vulnerable adults should be placed in supported living isolation. Guess what? Abuse will happen, but in supported living settings we run the risk that it will happen far more invidiously, far more privately, and with the perpetrators being given free access in a way they have never have before, which means that any abuse will be harder to detect than ever. 

There are some evil, vile, unpleasant, wicked people who prey on the vulnerable, and there always will be. Our vulnerable adults need all of us to work together to protect them from these vicious people, to keep them safe. Yet according to the policy makers, somehow the size of the accommodation influences whether or not abuse happens. This is dangerous thinking, and it is wrong. Somehow, wherever our vulnerable members of society live, we must do all we can to prevent the abusers working with them or gaining access to them. It's not a failsafe method, but personally I feel there more is safety in numbers, and with other residents and a whole team of staff, at least if abuse is occurring somebody might see something and blow the whistle. 

I'd like to see funding pouring into research to ascertain why abuse happens, what motivates the abusers, and how we can filter out at the interview and selection process, those who are likely to be wanting care-worker jobs for all the wrong reasons. We also need to give Care-Workers a higher status with much more respect. Good ones are capable of transforming lives for the better, and there are thousands of extremely good ones, working for next to nothing while making a huge difference to the quality of life of our most vulnerable people. I would like to see these people recognised, not just by paying them more, but also by valuing them for what they do. 

The other problem I faced with securing a place for Toby in the lovely home directly across the road from where we live was a funding issue. These days it all comes down to money. 

The taxpayer pays for both Supported Living provision and for Residential Care Homes. However the funding for Supported Living is spread across lots of different departmental budgets, both at local and central government level, with elements of the funding coming from the benefits system too. So it isn't such a huge burden on the local social services departments, who have to carry most of the financial burden of the residential care home option. 

Every social services department in the land is having to make tough choices as to where best to spend their very limited finances, so I can completely understand why they are reluctant to place people in care homes. This means that the vulnerable adults in their care may be being shoe-horned into the wrong type of accommodation simply because there is a major funding imbalance. I was often told that Care Home were more expensive by senior social workers. They are not more expensive to the taxpayer, but they are more expensive to the social services department. Equality of funding must be a priority, because decisions must be made on need rather than on cost, and to base a decision on cost when it's not even anymore expensive is quite frankly, stark raving daft.

Financially Toby's placement is safer now that he is in a care home and being funded on a "whole package" basis, because it's an "all or nothing" package, and it can't be tweaked or altered to save a few pounds here or there. Those in supported living are at the mercy of our benefit system. already under attack from Central Government, Those in a supported living situation are also at risk of having their packages cut every time their care package is reviewed, once or twice a year. It would be very easy for a care manager, hearing that a person normally sleeps right through the night, to decide to reduce the hours of the overnight carer, leaving that person alone while they are asleep. But what happens if they have to face an intruder or a house fire alone, without the cognitive skills to understand what is happening and to take action to protect themselves?

While I was working towards getting the very best for Toby, they asked me to look at some alternatives. They were each over 10 miles away, but they were Supported Living units, and therefore I was supposed to be delighted by them. They both actually sounded quite nice, but not as nice as having him on the doorstep. Some of these places actually are quite good, but that's because they have modelled themselves on the sort of care given by care homes, with small groups of adults living together and looked after by a team of care-workers, but somehow they have fiddled the finances so that it ticks the Supported Living boxes. Very clever, but if care homes work so well, why fix em if they ain't broke?  

Even if they had been wonderful places, I already had my perfect solution. A beautiful, specialist care home for adults with learning disabilities, a home I knew well already, and one that I was on first name terms with many of the staff and residents. One that I had watched for 12 years, and had never witnessed anything whatsoever that rang even the tiniest of alarm bells. A home where the residents always look happy, clean, well-dressed and well-cared for, just thirty paces from my own front door. It may as well have had Toby's name already carved in a plaque above the door, I wanted my Toby as close to home, in as nice a place as possible, but still able to be a huge part of our family. 

In the end I had to play my ace card, which I really had wanted to avoid having to do, but it worked. I wrote a letter for the men in grey suits who must work in the basement of our council offices to read. I explained that I had incurable cancer with a limited life-expectancy, and that I needed to live out my last years with Toby close by and still a part of our family. It's the truth, but I still felt very uneasy in spelling it out. However it worked. Within a week, Toby's place was funded. It's great to know that even the council accountants have really kind hearts. 

Wednesday, 19 February 2014

Coke Floats & Chemo: Toby's New Home

Coke Floats & Chemo: Toby's New Home: Toby left home an hour ago, and it feels so final, and so sad, but I know in my head I'm doing the absolute right thing for him, I just ...

Toby's New Home

Toby left home an hour ago, and it feels so final, and so sad, but I know in my head I'm doing the absolute right thing for him, I just need time to allow my heart to catch up and see sense too. 

Toby is my delightfully funny, mischievous, boisterous, best-hugger-in-the-world 19 year old son, who was born with disabilities so rare that he is a complete one-off, the only person in the world with his particular condition. In the early days, keeping him alive was a round-the-clock struggle, his prognosis was extremely poor and we spent most of his first 6 years in hospital with him seriously ill, and with me sleeping on a camp-bed next to his bed for weeks, and sometimes months on end. His medical care was full-on, he needed 24/7 treatment to keep him from dying, and in those early years we had 38 separate crisis close-calls when he wasn't expected to last more than a few hours. He certainly was never expected to make it all the way to adulthood, and I am so proud of him and so thrilled that he has survived against the odds, but in so doing, it does bring a different set of problems and heartbreaks too. 

Toby has the intellectual equivalent capacity of a mainstream 2 year old, and we now know he is severely autistic too. He cannot swallow properly so until relatively recently he was entirely fed via a gastrostomy, and now that he can eat and drink, everything has to be pureed, there are more foods he has to avoid than he can eat, and we live with an extremely high risk of him choking or aspirating food-matter into his lungs. He is also doubly-incontinent, and he has challenging behaviour too, as well as still needing a lot of medical treatment and care. He can walk, which was a joy we never expected, but he is wobbly and unsteady so he also uses a wheelchair, and his speech is limited to one or two word sentences of a very limited vocabulary. None of this gives a real picture of the whirlwind of energy and tenacity and joyousness that is Toby, you really would have to meet him to understand just how very special he is. 

So, he always has and always will need total 24-hour supervision, both from a medical and a behavioural point of view. He has absolutely no sense of danger, and this, coupled with a mischievous curiosity and an ability to wreck a room in 12 seconds, means that he can also be exhausting, and nothing else can get done if you're alone with him. 

I've always known that, if Toby made it to adulthood, I would want him to be settled somewhere else by the time he was into his middle-twenties, simply because I've seen other adults with learning disabilities have to cope with losing their parents once they are well into their fifties, and then also cope with being springboarded into a completely alien environment with no one able to help them understand what's happening and to help them get used to their new home. 

So Toby moving out when he's only a couple of months short of his 20th birthday isn't so far away from the plan I'd always had for him. It was always going to be difficult; Toby and I have been through so much together in his early life that we are closer than close, it's almost that we are a part of one another. What I think is really hard is that my cancer prognosis has taken away the choice of when we do this, and there is a real sense of urgency for a number of reasons. 

Firstly, although I am doing really well on treatment and I may well live for several years, the fact is that my cancer is incurable, and I equally well may deteriorate and die relatively quickly. If that happened and Toby was living at home, it would be catastrophic for him, losing his mum, and having to get used to a new place to live in one fell swoop. Finding good places for people like Toby is like finding a needle in a haystack, and with the best will in the world from even the best social workers in the land, in an emergency situation like this, he could be catapulted into a really unsuitable environment without me around to jump up and down and insist on the best. 

Secondly, cancer thrives on stress. Stress eats away at the capacity of your immune system to keep the cancer under control, and keeping cancer under control is vital if I am to live for as many years as I possibly can. I hate to say it, but Toby living at home is not good for my stress levels. We live on tenterhooks waiting for his next meltdown, or what havoc he will create. Then there is the constant stress of the next chest infection that may bring him down so low that we may lose him - always checking his breathing, always on edge listening for the tell-tale tone of a slight cough, always worried that he may fall or put something in his mouth that will choke him.... the list goes on and on. Then there is the stress that changing nappies and spoon-feeding a young man also brings, and ensuring he gets all his prescribed medicines on time and that they aren't causing him side-effects, it's all the stress of trying to second-guess how somebody else is feeling when they have no way of telling you themselves. 

Thirdly, since I've had cancer, my energy levels and coping resources just aren't as great as they once were. The bottom line is that I'm just not strong enough to look after him anymore, and that really hurts. It feels like he is being jettisoned out of the hot-air balloon so that I can live a bit longer, as if I have had to make a choice between us, and that I've chosen me rather than him. That makes me feel very selfish and very guilty, and it hurts like hell.

 The other thing that I'm acutely aware of is that, after all these years caring for Toby, my time will be significantly freed up, and I will be able to do things spontaneously with the rest of the family in a way that Toby's difficult care regime has previously made difficult. This is just piling on the guilt sky-high, that I may actually enjoy a different level of freedom while he has been pushed out.  Its all adding up to be the biggest guilt-trip I've ever felt. I really need to find a way to reconcile these dichotomies, and move past these negative feelings as quickly as I can, 

I owed it to Toby to find the very best solution I possibly could for him, and that's one area where I really do feel I've done well. 

We have lived on our road for over 12 years, and directly across the road is a Residential Care Home for Learning Disabled adults. They are our neighbours. Over the years I've got to know a few of the more able residents, and I've seen how consistently happy and well-cared for they all are. Today they got a new resident - our Toby!

So he has moved across the road, still in the community he has grown up in, and still able to be an integral part of our family. He will be able to pop home several times a week, but in time, once the dust has settled, hopefully he and I can begin a new phase in our relationship, and for the first time ever, I can be his mother, not his carer. Other people will do all the stuff that exhausts me, the stuff that gets in the way of doing things like playing silly games, singing crazy songs, laughing like drains together at nothing in particular, and just having fun. Just like any other young person who is leaving home, his bedroom will still be here for him to stay over on the occasional night too, and certainly for birthdays and Christmases there's no way that our very own King of Celebrations could possibly be anywhere else but at home. 

He has spent a lot of time over there during the past few weeks and he has quickly worked his magic on the staff who already seem to adore him. He is incredibly proud of his new  bedroom. He can stand on the pavement outside our house and point correctly while saying "Mummy's House" and "Toby's House". However, I don't think it's dawned on him yet that this is permanent. 

Please don't think for a moment that organising such a perfect solution has been easy in any way whatsoever. Normally people like Toby can get shipped off to somewhere miles away, even to the other end of the country. I've had to stand and fight Toby's corner against all the odds to make this happen, and it's taken months. Obstacles, hoops, political agendas, funding, policies, protocols, ideology - I've had to battle my way through more than you could ever imagine to make this happen. Only time will tell, if and when Toby is settled and happy, whether the standing my ground was worthwhile or not. I so very much hope that it was. 

Next blog - I'll tell you about how we made it happen, and some of the rather shocking lessons I've learned along the way. 

If you’d like to buy a copy of Yvonne Newbold's book,  “The Special Parent’s Handbook”,  here’s the link to the Amazon Page:

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Friday, 7 February 2014

Coke Floats & Chemo: Silly Questions

Coke Floats & Chemo: Silly Questions: I'm a very lucky lady today - results day at the hospital turned out to be far better than I'd dared to imagine. The naughty little ...

Silly Questions

I'm a very lucky lady today - results day at the hospital turned out to be far better than I'd dared to imagine. The naughty little lump of cancer on my spine hasn't got any bigger over the last six months, which means that the on-going treatment is working. Totally brilliant news. The only fly in the ointment is a little 7mm something-or-other they've spotted in a single lymph node in my groin. They can't tell if it's another little cancer spread or something innocent like a temporary inflammation, so instead of waiting 6 months for the next round of tests, they aren't taking any chances, and I'm having another PET scan in 3 months, which will decide if it's ominous or not. I've already decided it's not. There's absolutely no point in scaring myself stark-raving stiff every day for the next three months over something that might be absolutely nothing, so I'm banking on the nothing completely for now, and enjoying the counting my of blessings that everything seems pretty marvellously hunky-dory at the moment. 

I do silly things at these meetings like ask daft questions that are enough to frighten the living daylights out of anybody when the answers aren't quite what I was hoping for. Like today, "So if the Herceptin and Letrozole double-act is working so well, does that mean it might work forever?" Why do I let the words roll off my tongue when I really didn't need to know the answer, which is "No, that's very unlikely". Oh. Apparently, after a while, and it's a different length of time for everyone, you just become resistant to the drugs, and they stop simply don't work anymore. I'm such a big mouth sometimes. 

The other thing is that old chestnut, exhaustion, raised it's ugly head all over again. I'm to slow down apparently. Ha ha ha, tell that to the Government who keeps on and on chopping down trees just to generate more and more forms for me to fill in. I'm drowning in them. Not coping at all. Is this David Cameron's dastardly plan to save NHS funding by ensuring I'm crushed under the weight of them so he doesn't have to fund my cancer treatment? 

Today, after a Toby college meeting followed by the Results Moment (which is never a moment - nearly 3 hours we spent at the hospital all together), I got home to 4 urgent forms I've managed to push around the dining table in procrastinational brilliance for several days. 

Firstly, I'm one of a handful of families nationwide who have been picked, at random apparently, to be audited by the Customs & Excise Tax Credit department. Somehow, I have to provide evidence that both Adam and Toby have been in full time education for the past 2 years. Well of course they have, and the government has been paying for their schooling, so there must be an easier way for a government department to collect the evidence.  Over the past week or so I've picked the form up, read it again, and tried to find the elusive "evidence" that fits their criteria. Boxes and boxes of paperwork I've waded through, I've tooth-combed through ring-binder after ring-binder from shelves I can barely reach even from the top of the step ladder. "Why didn't I just ring the number on the letter"?, I hear you ask. Well I did. I think altogether I've rung it around 25 times over several days, and it's either constantly engaged, or you hold on for 20 minutes until they cut you off. 

So I rang them again the minute I got in, and guess what? They answered first time. It turns out they want me to contact each of the 4 educational establishments my boys have attended between them over the past two academic school years, and request that they each send me a letter confirming a whole shedful of specific information. They want this all by next Friday. "Can I have an extension on the date please, because the letters won't arrive that quickly?". I asked. No, they told me, and then went on to explain that they can give me an extension, but not until two days before the deadline, so I'll have to spend all day next Wednesday trying to get through to them instead. 

So I then phoned all the schools and colleges. Only one was able to say, OK, I'll do it now for you and get it in the post by the end of the afternoon. The others want me to put this request in writing. One of them wants me to go into college myself so I can fill out a "Request for Information" form, and I will have to produce proof of ID for both myself and my son at the same time. 

On top of all this madness, Toby's DLA form needs completing all over again. Without DLA he won't be entitled to any of the other services he gets, so it's absolutely essential it's completed, and again, we're nearing deadline. It's 40 pages of mind-numbing questions, with large boxes for you to write essays in each one. A total of 33 essays in all. Toby has disabilities he was born with. They aren't going to go away. Some people are only asked to fill out a new form every 10 years or so. Some people, if they have particular medical conditions that are on some sort of Gold Star type list of favoured disabilities don't have to fill these awful forms out at all ever. 

Yet, for some ridiculous reason, they make me fill out Toby's DLA form every single year, probably just because he is the only person in the world with his particular condition. Maybe they think that this makes him so special that they honestly believe the disability fairy might choose him to sprinkle the "get better" fairy dust over one starlit night in Disneyland fashion? It does make me cross. 

The other horrid thing about the DLA form is that it is so negative. To qualify, you have to write about all the stuff Toby struggles with or can't do at all. Thirty-three times over. As his mum, I want to tell the world how fabulous my children are, not to focus on the tough stuff, and to be honest, DLA time is the pits. Having to describe your bravely resilent and resourceful kids in such a depressing way really gets to you and really hurts. It's not just me, every parent I know dreads the DLA time for exactly the same reasons, and it's simply just not fair.

These are only two examples of about 70 must do's on the admin list, several of which, like the 5 for today, are mega-urgent. 

So how can I rest and take it easy? Admin just sucks out every last shred of my energy and vitality, and totally exhausts me. It's all so pointless, too. Somebody somewhere knows full well that both Adam and Toby were at school and college and what they were doing there, and loads of people also know that Toby has enough disabilities to last a lifetime. In our automated, big brother society, there is just no excuse to expect those of us who are closest to the edge of not coping, like parents already overstretched in caring for severely ill children or those with disabilities,  to fill out endless, pointless, mindless forms for absolutely no good reason whatsoever. 

It's not just the forms, either. Once they are completely, you have to find countless original other documents to go with them, and then photocopy everything before sending it off because you would be staggered at how often these forms are simply lost by the department you've sent them to. Then the filing, mindnumbing, boredom that takes nearly a day a month, or in my case when I haven't had the energy for over a year, seven boxes of forms which will probably take a whole week to file properly. You have to keep everything - absolutely everything, because somebody will ring up and ask for proof of something or other to tick their box or your child won't get the right piece of equipment or the correct help in the classroom. Every parent of a child like mine should be given a  government-funded standard-issue filing cabinet, a part-time secretary or at the very least, a heavy-duty box of matches and a monthly case of very good wine to drown their sorrow in. 

So how can I rest when all these faceless bureaucrats keep clicking their fingers and giving me more stuff to churn out for them? How can I ever put my feet up and drink cocoa and watch daytime television with Jeremy Kyle for company? Basically, how can I ever recharge the batteries enough for my cancer to sleep soundly while I boost my immune system, eat properly, sleep properly and chill? Dream on, because it will be never. 

However, just to cheer me up, here are a few more of the proofs from our photo session a few weeks ago. I'd love to know what you think of them. 

To buy your copy of “The Special Parent’s Handbook please click on the link to the Amazon page below

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Wednesday, 5 February 2014

Coke Floats & Chemo: Born to Dance

Coke Floats & Chemo: Born to Dance: I really shouldn't be writing this now - there is so much else I ought to be doing, things from the tediously boring but frighteningly i...

Born to Dance

I really shouldn't be writing this now - there is so much else I ought to be doing, things from the tediously boring but frighteningly important Paperwork Mountain, but sod it, this is much more fun. 

It's been a crazy few days with hardly a moment to draw breath, but apart from Monday when I thought I must surely be dying, it's all been totally, utterly, completely fabulously brilliant. 

WM and I went off on the course I wanted to do at silly O'Clock on Friday morning. He is so good to me - he drove me to the station, left me on a bench with the luggage, drove back and parked the car, then walked to meet me. If you knew how close we lived to the station you'd realise how pathetically ridiculous it is that I can't walk there without getting puffed out and overwhelmed by joint pain, but I prefer to believe that I'm just a lazy cow with a man who treats me like a princess. 

We managed to get a seat on the rush hour train, and then later on the rush hour tube from Victoria too. Jammy. We fell out of Gloucester Road tube station, and our lovely hotel, The Milennium Bailey's, was directly across the road. The course itself was just around the corner, about 30 paces away, in their sister hotel, The Milennium Gloucester. 

So for the next three days, along with some really inspiring fellow trainees, WM and I were plunged into a super-intensive Public Speaking course. It was so full-on and energetically non-stop, but loads and loads of fun. The trainers managed to break the ice really quickly, and I've never experienced a room of 35 strangers bonding so warmly together so quickly - within no time at all we were a cohesive, supportive family wanting to cheer each other on from the sidelines like we'd known each other for decades. 

I've been a bit shy about admitting it was a public speaking course, to be honest. I've given more speeches to huge rooms of people than I can count, and people always give very warm feedback and it doesn't generally phase me at all. But there is always that little tiny doubting voice in the back of my head that people are just being kind, and because I tend to talk about emotive subjects like my three children and their disabilities or my incurable cancer, of course it's easy to win all the generous sympathy votes in the room. I also always write a script and hold onto it like my life depends on it, reading aloud rather than speaking from the heart. I've always been in awe of those speakers who can just walk on stage and talk with no prompts or cue cards or scripts, now that really is smart. 

Now that I've written a book, the received wisdom these days is that authors would be penniless if they relied on book sales alone for their income, but it's the speaking engagements to talk about the books where you can earn a living. The average sales of a book from a first time author is around 250 copies, which would barely cover all the costs. So I felt I needed proper professional training so that I have the confidence to believe that whatever speech I'm delivering, to whatever type of audience, is just about as good as it can be. 

There were some very impressive people on the course - people who are real movers and shakers, with finely-honed business acumens, running very successful companies in all sorts of fields. Then there was little old me. 

Over the weekend I realised just how far I've come over the past year or two in the self-confidence stakes, and it is so stupidly sad that I had to get cancer to start believing I had any skills or talents that were worth having. I walked into the room, and there were dozens of people all expensively dressed with beautifully toned bodies, and I didn't feel small or insignificant or fat and ugly like I used to feel in similar situations. 

I think a lot of women will understand exactly what I'm saying. I've never had the money to dress like a fashion icon, and even if I had, they just don't make those sort of clothes for people with my body shape. I never quite made five foot tall, and where everybody else's waist are I have a huge, rounded barrel-belly instead. Then my feet have just lost the plot entirely and have spread in every direction - sideways and upwards, so that I can only buy shoes mail-order from specialist "fat-foot" internet sites. Firstly these shoes are not cheap, nor are they sexy, and mostly when they arrive they are far too tight and I can't wear them. So without decent shoes ever, it severely limits the sorts of clothes I can wear even further. I have one pair of ankle boots for winter, and one pair of turquoise sandals for summer, and that's it. Once upon a time I was a shoe-queen, with a selection to rival anyone's. Yes, I hate it, yes, I get mega-embarrassed about it, and yes, I get very insecure and panic-stricken when a pair of shoes begins to wear out in case it's going to be impossible to replace. There, I've said it. Phew. 

When I was a kid and all the way into my early thirties, I was tiny, barely seven stone and with a figure to die for. Each of my pregnancies added more and more inches, and with my six miscarriages that's nine pregnancies in all, and I've never been able to shift any of it. Over time, I developed more and more body image issues, but I've never admitted it until right now this minute, instead, I got very good at putting on a mask and fronting it out. It's a woman thing definitely, that very subtle but very real moment when you can see the flicker of another woman's eyes judging you, and instantly dismissing you as unimportant and insignificant just because you have a different shape. It hurts like hell, it happens all the time and everywhere, and it flourishes and blooms particularly well at the school gate, when you collect your primary-aged schoolchildren every afternoon, standing still, waiting for the bell to ring, but on show to hundreds of pairs of judgemental eyes. 

Every time it happens, a tiny little bit more of your self-esteem dies forever, until you feel that even friends and family are doing you a favour by spending any time with you whatsoever. You feel you have to apologise for even being there, you feel ugly and revolting and disgusting and worthless, to the point where you try to take up as little space on the planet as possible, or just hide away from the world altogether. 

I got very good at brazening it out, and pretending confidence I just didn't have. I doubt even those closest to me have any idea whatsoever of how I really felt. 

So what do you think happened when, diagnosed with cancer, I had a radical mastectomy and went bald for 8 months? This is the incredible bit, because I started to value myself for the first time in 30 years! 

I've got a load of people to thank for that. When I first announced my diagnosis, I was astounded by the tidal wave of love, concern and outrage at the unfairness of it all. Then I started this blog, and before I knew it, it wasn't "my" cancer anymore, it was "our" cancer. People were so supportive, they laughed along with me as I recounted some of the cancer-absurdities that happen, and slowly I realised that actually, the only people that matter don't give a stuff what I look like, they are insightful enough to look beyond the superficial and see who I really am. 

What makes me cross now is why did I waste so many years crucifying myself over things that, quite frankly, just aren't important? Why did it take cancer to open my eyes and realise that I have a load of stuff to offer the world? 

What's really interesting is that now that I don't even worry about what I look like, I must carry myself a lot more confidently in some way, because other women just don't do that eye thing at me anymore. How many millions of women are still tying themselves in depressive knots instead of shining their lights brightly with panache? So so so sad. 

So, back to the course. I loved every last minute of it, and I learnt how to talk from the hip, in fact I can't wait til I'm next asked to make a speech and I can do it without a written script. I think, too, that it has completely and utterly put to bed all those insecurities of old. It was very intense, lots of physical movement, and every session began with dancing on stage to re-energise; my old creaky bones let me down on most of those sessions which was very annoying, because I'm just one of those people who was born to dance. 

The 3 days also had sessions on other book spin-offs I can offer so I'm also really excited by the idea of running seminars, workshops and training courses emanating from the book I've written too. 

It's called "The Special Parent's Handbook" and it's partly telling the story of my family, partly passing on some of the ideas, strategies and tips that I had to learn the hard way, and partly looking at the current statutory services, set up to support and help our children, but which instead, far too often leave them short-changed and abandoned. 

The Special Parent's Handbook covers virtually every aspect of parenting a child who is different, not less. Education, healthcare, and social care, obviously, but also how to negotiate a win-win situation in all the endless meetings, how to build and develop support networks, how to nurture your relationships, how to ensure your other children aren't left out or stigmatised, how to prioritise your own sense of self, and how to ensure your child has a great childhood and can develop into a confident and happy young adult. 

Writing it was hard because there was so much to say on every aspect. I realised I could have turned each chapter subject into at least one book, and choosing which bits to put in and which bits to keep out was very difficult. 

So, I may have incurable cancer, but I now know there are an awful lot of books still inside me waiting to be written. My dream? To create a legacy for my children in two ways. Firstly, wouldn't it be lovely if they do have to cope with losing their mum much too early, that there is money in the bank to help them springboard into adulthood? Best of all, wouldn't it be brilliant if those books help our society to understand much more about the difficulties children like mine face, and how, with just a tiny shift in attitude and understanding, how much more our children will be able to take their full places in society? 

That's the blueprint, anyway, and we'll see what happens along the way. 

The public speaking weekend had a fabulous title "The Ultimate World Class Speaker's Camp", and one of its many catchphrases was "Success happens when preparation meets opportunity". 

Then yesterday, completely out of the blue, an opportunity came knocking which put my voice out to the whole wide world and made the catchphrase take on a whole new meaning!

It was World Cancer Day, and the World Health Organisation have published a very detailed report of a study about the projected worldwide cancer epidemic that is expected in the next 20 or so years, with a call-to-action for Governments to implement public health strategies that may reduce these expected cancers by a half. The report itself ran to 800 pages. 

So what happens? Sensationalist journalists, who probably can't be bothered to read the whole thing, have almost universally twisted the findings and jumped on a bandwagon theme of "Do people with cancer bring it on themselves?". You can imagine the upset that's caused among the cancer community, and it irritated me somewhat, too. So I tweeted just once on the subject yesterday morning, saying:

"According to the National News this morning, it's all my fault I got cancer. Oh, & yours too if you get it. Unhelpful, cruel simplistic tosh".

Well much later on, I got a reply on Twitter from a BBC Journalist inviting me to take part in a BBC World Service Radio discussion programme on that very topic, now, how exciting was that! And here it is, the podcast, if you want to hear it. I'm introduced at minute 38!

So the only possible fly in the ointment is results day on Friday, but even if it's bad news and that spreading cancer is on the march, I'll just have to write all those books even faster than ever!