Coke Floats & Chemo: Life as it happens

Coke Floats & Chemo: Life as it happens: Health scare Did you know I've got a new health scare that might or might not be another spread of cancer? It's made me very poorl...

Life as it happens

Health scare

Did you know I've got a new health scare that might or might not be another spread of cancer? It's made me very poorly on and off for the past couple of months or so, and then it all got very serious and became infected. I'm now waiting for biopsies, operations and a proper diagnosis of what's going on. I think I should have had a letter weeks ago, but I just haven't had a minute to chase it up. When you have stage 4 cancer, although it's nice to have things to take your mind of things, I've had so many other things to worry about lately that the whole cancer thing really has had to go to the back of the queue. Tomorrow, I promise I'll make that phone call and see whether or not I've been forgotten. 

Please don't ask in too much detail what it's all about. I try to be open and honest, but this is just too embarrassing to talk about and expect you to keep a straight face. It's bowel related. Ha ha ha not. It was hard enough having dozens of doctors taking it in turns to peer intently at my boobies in the last few weeks of having two of them. Now they want to peer at my bum. Dignity and decorum go out the window completely with cancer, and I don't think you ever get used to it or comfortable with sharing the best-hidden parts of your body with total strangers, no matter how well qualified those total strangers are. The idea of talking about it outside of a doctor's room fills me with cringing dread, so I need to quickly find a way to say something without telling anything, and for someone as naturally open as I am, that's the very hard bit. 

Beyond my control

Never mind, there's so much else going on that there's plenty of other things we can talk about. I'm on the brink of exhaustion all the time and stressed up to the earlobes and not very well, but when life happens you have to be there, take it on the chin, deal with it and cope whether you want to or not. Sometimes I look at the way things are in my life and it's hardly any wonder that cancer might be winning. A little bit more control over my own life would be very nice sometimes, to be able to choose what I do and when, make my own priorities every day, and actually be allowed to see them through to fruition. Instead, I'm fire-fighting, responding to crises, and mainly sorting out the mess other people have imposed on my life. It gets wearing, it's very frustrating, and it's something that's really hard to accept, even though I've been living a version of this life from the moment Toby was born all those years ago. When a child is as profoundly disabled as Toby is, you have to rely on other people. When those people don't always join up their dots, somebody has to, or Toby will pay the price. What mother would let that happen? It's a joyless, thankless task, and it means that parents in my situation come from a different starting point. Before we can start doing the things that we want to do, the things that make our souls sing, we're sorting things out, putting wrongs right, making things happen - but sometimes the sheer scale of keeping all those essential balls in the air just spills over into ridiculousness. 

Another move for Toby

Toby has to move care homes. Long story, and maybe when the time is right I'll do a longer post about it, but it's dominated virtually every waking hour since Christmas week.

Care-home hunting is like a full-time job for an entire office-block of people. I've read 70 CQC reports. I've spoken to 50 care home managers. I've visited 12 care homes. I've written a report for each of them for our Local Authority, as well as a more generalised report about the search itself in terms of expectations and success-critieria. I've had countless meetings with Toby's social worker and other members of her team. The emails I've written and the forms I've filled in would rival the word-count of War and Peace. 

I've taken Toby back to visit the best places we're seen. That was emotional. Suddenly this whole care home search became real - it stopped being a paper-exercise and became something much bigger. It's a huge responsibility. Toby cannot talk, he doesn't understand that his little world is about to be thrown into turmoil all over again and he will have to readjust to new people, new routines, a new environment and different ways of doing things. 

Luckily there was one place where he just looked so happy and relaxed. The staff responded to him with warmth and enthusiasm, and he soon had them playing games his way with him. While Malcolm and I chatted to the care home manager at the kitchen table, Toby took himself off and wandered around, until finally settling down on an armchair near some of the residents, perfectly content and relaxed. It's the closest I could get to involving him in the decision-making process, but it worked better than I could ever have expected. 

That's the place we want, the local authority have asked them to start their assessment on him, and the ball is finally beginning to roll. It's taken nearly 3 months to get here, and there are still a lot of things that can go pear-shaped between now and him moving in. They may not want him, although they dress it up in nicer words along the lines of "unable to meet his needs". This place has an upstairs bedroom, so he has to have an occupational and physiotherapy assessment to ensure the staircase is safe for his reduced mobility. 

Yesterday he hurt his foot badly and today he still can't walk, and I can see a shadow of impending doom looming unless he fully recovers by the staircase assessment day on Thursday. If he passes that test, there are still about another 100 things that could go wrong, and that's before we can even begin to think of the funding fight that has to be overcome before anything happens. I'm holding my breath and crossing my fingers. I just hope I don't have to add banging my head against a brick wall to that list before the next couple of weeks are over. 

Fire-fighting - literally! 

Then, three weeks ago, my father accidentally set fire to his house. That was a huge shock, but luckily, despite some minor health-related smoke-inhalation problems, Dad got out safe and well. He's living in our house - he and I haven't lived together for over 30 years. It's all a bit surreal, particularly when he tells me off for things like being on the phone for too long (Dad, you were allowed to do that when I was 14 and you were paying the phone bill, but I'm a grown-up now and this is my phone....!), but he makes the best cup of tea for miles, and we're all thoroughly enjoying having him around. 

Trouble overhead

On top of everything else, just to make life even more interestingly diverse, directly behind our house they are building a new development, which hasn't been much fun for the last couple of months. The noise is horrific and relentless, and so close to our house it we can feel every thud and clatter. Sometimes the house shakes, and sometimes it's so bad you can feel your own spine revererating. The builders working on the site don't seem that competent or cautious either. So far, due to their negligent drilling through things they shouldn't be touching, we've lost electricity for whole days at a time, we've lost our internet connection and our land-line telephone for nearly a week, and they also cut through the cable that brings TV into our house. Oh, and the gas leak too - a whole sleepless night of the gas board noisily digging up the road while they had to fix the damage the builders had done before anything really serious happened. 

Now, the construction company wants to erect a crane which will loom over us for the best part of the next three years, swinging freely over our house and garden. So more meetings, emails, phone calls, emotion, discussion, rallying of the troops among the neighbours ..... and we still aren't any further forward. It looks like it will happen, we'll have to sign an agreement and get a few paltry pennies a month for our co-operation, but with it will come a whole new raft of worry as to whether they have secured every load properly or will something heavy fall and flatten our houses. 

A & E family day out

Yesterday both Toby and Malcolm ended up in A & E. Toby with this mystery foot injury - his third similar injury since he's lived away from home. Malcolm is very poorly indeed, I've watched him get steadily more and more unwell over several days and yesterday I took one look at him and I just knew this was serious. They managed to bring down his raging temperature, they gave him i/v antibiotics and a litre of saline through a drip, and now he's back home but still really unwell. While I've been writing this, I've had to go over and see Toby too - he's started being sick. Is it related to the foot injury in some way? How much pain is he in and can pain alone cause vomiting? Too many questions to try and second guess. I'm going over again in a couple of hours to decide if he needs to go back to hospital tonight or if it can wait til the GPs surgery is open in the morning. 

Let's blame mum

It was Toby's second trip to A & E in 5 days. The one on Monday caused no end of stress. No one at his current care home can change his gastrostomy feeding tube, so I always do it. No big deal - I've done every change since he was a baby - I could do it in my sleep and standing on my head, so I thought nothing when they asked me to put a new tube in on Saturday.  However, by Monday, some sort of miscommunication whispering campaign seems to have got going, and specialist nurses and our GP were demanding that the care home staff took Toby straight to hospital to ensure there was no internal damage, and that I'd changed it properly. Hello? Why? What? 

Suddenly I was plunged into the middle of a nightmare where it seemed that none of the professionals involved with his care trusted me to change his tube. Phrases like "compromising his safety" started being bandied about, and next I was being interrogated over the phone by someone demanding to know what training I'd had and how I could prove it. These things are serious - I know from bitter past experience that before you know where you are a parent is up in front of some local authority kangaroo court on a trumped-up safeguarding charge. By the time it gets that far, all the professionals will have closed ranks, and the finger is firmly stuck in the "pointing at mum" position, which means that nobody else can possibly be implicated in anything whatsoever. 

So everything had to stop for the best part of three days while I tried to unravel the chain of events that had escalated such a minor detail into some sort of life-threatening emergency with me somehow portrayed as the vilified perpetrator. To be perfectly honest, fuming, incandescent with rage and livid doesn't come close to the fury I was feeling, yet in these situations fury gets you nowhere. Instead, you have to swallow the anger, present as Mrs Nice and Utterly Reasonable, and use every last vestige of tact, diplomacy and social skills that you can cobble together as quickly as you can. Yes it took three days of phone-calls, emails and research to get back to square one, which was that Toby's tube was fitted perfectly correctly, he had never been put in any danger whatsoever, and that I am perfectly competent, capable and responsible to change each and every tube that ever needs changing again. What a total waste of time. 

However, this week I did hear of another looming safeguarding meeting, this one about Toby's second unexplained foot injury incurred at his current care home. Another half day stolen away, more reports to read, things to get my head around, mustering my wits about me so that I can ensure that when the music stops the fingers aren't all pointing at me. They can't be, I wasn't there, but sometimes people will say whatever they have to say to shift blame and wriggle out of responsibility. 

My workshops launching

What I'm really trying to do is to find time to write my next book and launch my new series of Workshops, but it seems like the world and his family want to conspire to stop me ever getting on and earning an honest crust. That's the fun, exciting stuff, the stuff that makes my soul sing, gets me excited and fills me with energy. I'm sure it's what's keeping me alive, whereas everything else just drains me of energy. 

If I could just win a little bit of time back so I could focus and really get this off the ground, I'm sure everything else would fall into place. Instead, I'm walking through treacle sorting out other people's messes. Of course, when they are Toby related, I wouldn't trust anyone else to sort them out, so I have no choice, but that doesn't mean it's any less frustrating. I've got over a hundred lovely people who are waiting for replies to emails, tweets, messages and texts, but there aren't enough hours in the day. As it is I'm lucky to snatch more than 6 hours sleep most nights, and trying to work in a full house of lovely chatty people all day long isn't easy either. 

The Workshops? Oh I'm so glad you asked! I don't know how long I have left on this planet, and I want to spend as much time as I possibly can in helping to improve our Public Sector Services be more responsive and appropriate to the families who most need their help. I've designed a series of workshops for parents of disabled children. If we can make families stronger and more resilient, they will be better able to assert themselves with the teams of education, health and social care professionals who work with their children. 

I'm now working on a parallel series of workshops for the professionals. When you have a child like Toby, it can all get very "them and us". That leads to mistrust, miscommunication, and poorer outcomes for everyone - stress for the adults, poorer decisions for the children. 

We're moving into an era of less public sector spending, so we have to do it differently if we are going to support the families most in need. I see a future where kindness, partnership working and simplicity dominate how things are done rather than wasted resources being squandered on policies, procedures and processes, with families back in the centre of things instead of endless committee meetings and tick boxes. These simple changes cost nothing, in fact they save money, but the difference they could make is priceless. 

The nice bits

There have been other fab things going on - here's a whistle-stop round-up. 

A wonderful Saturday lunch with my breast cancer twitter-sisters! They've kept me going through thick and thin for nearly 3 years now, tweeting support, encouragement and love in 140 character bursts. Well it was a highlight of this decade to actually sit down together for a whole afternoon and natter, chatter, laugh and hug the hours away. 

I also met a very special lady while she was on a rare day-trip to London. Marie Ennis-O'Connor has been there for me every step of the way since I was first diagnosed with breast cancer, through to starting to write this blog, and she has been holding my hand and cheering me on all the way through The Special Parent's Handbook Adventures. Marie was everything and more that I thought she'd be, and we hugged so hard to make up for the three years we'd waited to say a proper hello

Earlier this week, I was invited to a really inspiring evening out, and Malcolm and Francesca came along as my guests. It was the Sutton Community Awards, where local people are the stars of the evening. I was both honoured and humbled to be nominated for The Outstanding Achievement Award 2014, there I am in the front row proudly holding my runner's up framed certificate. 

There was a very special bonus during the evening. A very long time ago, when Toby was tiny and fighting for his life on a daily basis, we were featured fairly regularly in the national press, and we appeared in charity brochures. One morning, a really lovely photographer patiently waited while I tried to ensure Toby was breathing sufficiently well enough to come off his oxygen for just long enough to take some good photos. Last year I found my copy of the photo that very kind photographer had taken that morning and I just knew - it had to be the iconic photo on the cover of The Special Parent's Handbook. The photographer's name was printed on the back of the photo, so I googled him and rang to ask his permission to use the shot. We ended up talking for ages, his warmth and enthusiasm completely undinted by the passing of what was nearly 20 years. If you read the book, please look out for his name, Richard Bloomfield, in the acknowledgements. Guess who was the official photographer on Tuesday at these awards? None other than the lovely Richard! Seeing him again and catching up was like the jewel in the crown of an already very special evening. In case you haven't seen it, here's Richard's original photograph taken that morning of Toby and me. 

It was the week of Awards for the Newbold family. On Thursday I was the proudest mummy when Adam won a Jack Petchey Award for his support work in rehearsals and on stage with Action Replay, the adult learning disability drama group under the Savvy Theatre Company umbrella. Adam was one of King Arthur's knights, and make sure that all the other knights were always on stage with him, in the right places and saying and doing the right things. 

Here's Adam collecting his Jack Petchey Award

And here is is again, as a Camelot Knight in a Princess Hat. 

Sadly, I was too ill to actually be there - I had the tail end of whatever bug has laid Malcolm down so low, and I would have embarrassed him like crazy by coughing all the way through the ceremony. 

Feeling rubbish

Lately, I've been ill too much. Not only is this extra unmentionable health problem bringing me down lower than I like, but I'm catching every bug that's going and not shifting them as quickly as I should be either. Some days I wonder if this is the beginning of the end, other days I think I'm just on overload and it's nothing whatsoever to do with cancer, more to do with curved balls coming faster than I can catch them all. Whatever, today is March, Spring is on its way, and I'm determined to plan exciting times ahead for as long as I possibly can. This month alone, I'm speaking at 3 conference, and bookings are already coming in thick and fast for the Workshops. Later this month I'm off to North Wales, and I'm getting enquiries from all ends of the country and even Dublin. 

Letting everybody down

Meanwhile there are so many emails, tweets, messages, facebook comments and phone calls that I'm not getting time to reply to - every day the list mounts up and up and there are over a hundred lovely people I go to bed every night feeling guilty about because I haven't got back to them yet. Huge sorry if you're one of them. You've probably gathered that some days I'm barely keeping it all together. Eating and sleeping fall off the radar too several times a week which isn't very clever, but there just aren't enough hours in the day at the moment to fit it all in. Can't wait til things ease up, and I hope I don't lose too many friends in the meantime if they think I'm ignoring them. 

And next....

Tomorrow, I'm organising business cards and banner stands, and I'm struggling over how to word them to represent what I do without blowing my own trumpet in a terribly unBritish fashion. Earlier I asked Francesca for some iconic words that describe me. "Annoying", "Short" and "Crazy" was how she thinks I should describe myself. Oh, and "insufferable". So if you know anyone looking for a conference speaker who is insufferably annoying, short and crazy, I'm your man! 

It would be great if you'd like to keep in touch through my FB pages 

Coke .Floats & Chemo Page  for cancer information and support

Special Parent's Handbook Page supporting special needs parents 

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.