Love on the NHS (15 page)

"Hello, Mr Jefferson."

"Hi Jolly. I need to add more to my complaint."

"Ah okay!" chuckled Jolly. "What is it you need to add?"

"I think the staff in the NHS need Autism training -"

"Yeah. That's a good idea."

"- because I've looked on the internet and since a couple of years ago a law has been in effect that means all staff in public roles are advised to receive training in understanding Autism."

"Let me just note this down. The only thing is we've already started on this complaint now and we can't add things to it unfortunately. I can start a new complaint for you though."

"But this has to be added! It's essential. Other people will be treated the same unless they change."

"I can appreciate what you're saying, Mr Jefferson. Do you want me to call Laura? We can get a second complaint started. It won't be difficult. It'll all follow the same procedure as the first. Just so you know, though, it will be longer than your first to be answered - with it starting later."

"God! I don't see why it can't be added," despaired Luke. "It's part of my Asperger's to be forgetful. What If I had dementia or a low IQ? There must be room for adjustments for people. I would have included it in the first place if I could think normally."

"I know," sighed Jolly. "If it was up to me, I'd lump it on to the existing complaint. But don't worry," she reassured in a deep lilt. "We investigate people's complaints carefully and we do take people seriously. And when people need extra help we use advocates like Laura, and I will talk to her about your concerns so she can help you better. But listen, I will put this into a new complain;. and I'll write you a letter with a space for your signature. Then you just need to sign it and send it back in the free-post envelope and I'll be directly working on it."

"Can I give permission over the phone?" Luke asked incredulously. "I'm saying it for you now, I want it started. Don't you record all these calls? That's what it says when I call up - that calls may be recorded for staff training purposes."

"It's for legal reasons we need your signature, Mr Jefferson. It's all very long-winded, I'm afraid."

"It is," Luke agreed. "It took a lot of effort for me to make this complaint. I almost didn't. I was so scared of what might happen. Most people don't make a complaint. They drop it. I can see why now! None of it makes sense."

"Fear not, Mr Jefferson. I promise you I will be on the trust's case. I will get this sorted."

"Thanks," answered Luke more softly. "Oh, there's another thing! I want to put in the complaint that it's wrong there isn't an Autism team in Duldock. There are hundreds of thousands of Autistic people in the United Kingdom according to the National Autistic Society. There are probably thousands, at least hundreds in Duldrum alone. Suicide rates are higher among Autistic people and we are failed by so many services. Because those services aren't designed with us in mind. There really needs to be a specialized service."

"Right, okay, I'm just going to write that all down."

She went silent for half a minute and then her voice returned. It floated through the air like a sweet birdsong. "That's all in the new complaint now. I really must be going," she said with urgency. "I've got a lot of other cases I'm working on too. Thanks for calling, Mr Jefferson."

"Thank you," Luke replied.

"Bye," said Jolly.

"Bye," mirrored Luke.

The counselling course had now only a quarter of its duration remaining. Many new ideas were buzzing in Luke's head and a burst of confidence had entered him. In classes students had revealed their darkest fears and feelings. Nobody had said a bad word, there was only acceptance. It made Luke wonder if he had always been wrong. Had he just been depressed? Always assumed the worst in people and situations and sealed a sorry fate?

He could not quite believe that. For what incensed Luke the most were  the small things. The kind of things that get tolerated. The buses that drive past elderly women who put their hand out seconds late; the buses that turn up an hour late; and when your bus turned up right behind another so that it was very hard to attract the right driver's attention. These problems could all be sorted in a more organized, conscientious world - but people opposed that. How then could folk truly be good-hearted? There was the dull array of subjects they discussed on his commute and in queues in shops.

How seats on some buses in the front faced the rear and nosy loved sitting in them to stare at him; or the buses with a black reflective surface at the front that people moodily looked into, watching people's reflections. The soggy, insipid food local eateries dished up with brash service. How so many people wore black clothes and clothing lacking style. The way people let their dogs and their children run riot and could not be bothered disciplining them; if anyone else did, the modern assumption that it was the complainant who was guilty, never the spoiled animal or child. If people could not get little things right... then what hope was there? There are enough problems in the world. Life is complicated enough. People should not overlook the little things, Luke would think.

He had written to his Member of Parliament, he had written to others. So-called important people. He had written many times, on many issues. About the need for prison reform to help victims of miscarriages of justice; and the need for better conditions to rehabilitate rather than degrade. On the need for inspections to prisons to be a few times a year  rather than every few years - it had just been in the news that a woman in a female prison was kept in isolation for seven years before inspectors found out. They had inspected five years before and had known she was in a lone cell then but had believed the prison when they said they would soon let her out. Words. When would people learn words were not enough? It was actions that counted.   Luke had sent letters to his MP about giving a voice to disabled people, and to people deprived of independence in care homes and hospitals. He had suggested banning or taxing chemically modified foods. It would help people who did not understand nutrition and no matter what people protested there were always those who did not. The savings to the NHS, to social services, would benefit the economy enormously when all those people's full potential was harnessed; when many expensive services would no longer need commissioning; when taxes could be lowered as a result.

He compelled her to organise the painting of houses along a street in Duldrum to be done in multiple colours. This would bring a touch of seaside-like wonder and awe to such a poor and grey town - no doubt both attracting tourists and improving the economy and reducing cases of depression. Yet no matter how brilliant, especially the more fantastic and sensible his suggestion was, the less enthusiastically was it received. Luke could achieve nothing he wanted to. Nobody listened. Why? Who knew. The answers might be in a play by Pinter or Chekhov play or in the mind of a young child, unspoiled by life experience, playing on a swing. It could be on the notepad of an elderly man with dementia sitting lonely in his sheltered apartment or nursing horse; or brought up in a conversation between two inmates languishing in a prison.

Drugs were another of Luke's pet peeves. How was it that all were illegal except alcohol and tobacco? It was silly. Alcohol made people depressed and violent. Not always but certainly too often to overlook. And it was LSD, an illegal drug, that had been found to be most effective in treating alcoholism in experiments in universities. Opium, so many great writers and artists had consumed it. A lot of fantastic thinkers and musicians had taken heroin; its modern synthesis.       He would have liked to see all natural drugs legalized. To be sold in shops and to let people make up their own minds. If people were provided with enough information they could make up their own minds. The possession of synthetic drugs such as heroin and ecstasy, even if they were not allowed to be legally sold, could at least be decriminalized It would put an end to prisons being filled with people who merely had something in their hand - or pocket, or living room - that nature herself had provided us with. Luke had even read that ecstasy could help people with Asperger's syndrome. Then it would probably be worthwhile to legalize it for medicinal purposes. For a few months he had tried politely, but in vain, to persuade a professor in a university to write a letter on his behalf. He asked the professor if she would mind writing to his doctor to ask if Luke could try ecstasy for his own Asperger's; the professor was researching ecstasy's effect on Autistic people. Like most university staff she lived in her own bubble and had no interest in someone like Luke who lived outside her confines. She did not even grace him with a response. She had no time to talk with people who did not have letters after their name.

But If Luke felt there was little he could do, that he could not influence anyone, then in the big scheme of things what would he do? Be a father; a lover; a lost soul? A street sweeper? Maybe a librarian or a footballer. He could be conscripted in a future war or might die from the fallout of a nuclear bomb attack. He might even revolutionize the design of fountain pens. Or serve a fifteen year term as a professor of humanities. But -

Life had to have a purpose! "Maybe not," he said, exhaling deeply. "Maybe I am insignificant." There were six billion people in the world and barely anyone noticed him. He was twenty five years old, aging by the day. Still young but not that young. Identification was not requested as much at bars. The bands youngsters liked were so odd. An indefinable shift in social mores had occurred. Luke had developed in an era of pub crawls and TV. He had gone fishing and to bake sales at the church. Now alcohol was demonised, pubs were expensive and closing. Pubs were not even inviting places to go in anymore, what with the ever present bouncers. They leered at the doors that had used to be open. Not to mention the fact that they were being taxed out of existence - value added tax was charged at a rate of almost 20% on food and drink bought in pubs while supermarkets did not have to charge anywhere near that amount. It was a brave new world. Social networking and virtual loneliness dressed up in phony optimism ruled the roost. Facebook, Twitter, Pinterest, LinkedIn. People's whole lives at the click of a button. Wheeling and dealing on an industrial scale; from online auction sites to jobs: it all happened through a screen.

Although he hated Facebook, Luke did use it for a while. Had was one of the late bloomers but became quite fond of it. It became as natural for him to check his Facebook as to read the daily news. He would look a few times a day. A counsellor he saw for depression recommended he seize the day. "Do whatever you like. Be like a dog. Does it ask for permission to chase its tail? Does it care what anyone thinks of it? Do what makes you happy." And so as Luke missed his old friends he added them on Facebook. Half did not accept his requests and he was too wary to add people who had fell out with him worst; but those who did accept him as friends had drifted away.

His old neighbour, Reese, sent a jovial message. "Hey, Luke! You've joined the world of Facebook at last." Reese had found a partner who he held in his profile photo. They were settled in Swansea where he was a telecoms engineer. The old neighbours exchanged a few messages but it became awkward; when Reese asked Luke what he was doing these days Luke said not much. It was obvious he did not work. Reese wrote, "I'm out on the road getting minimum wage. Eh, someone's got to." Was there a resentment there?

Luke was embarrassed to not have a job - not because being unemployed was a crime. But because newspapers had made so many attacks on unemployed people. The amount of coverage they had given about stories of benefit recipients being wealthy was disproportionate. It was also full of lies. The suggestion was being on benefits was better than being in work. That was plainly not true. Even most working people received tax credits - a form of benefit - now because of how expensive renting or buying a home was. There are sad people who enjoy reporting people on benefits. They make accusations of people cheating the system  - and more often than not it is only because they are bitter. Instead of fighting for fairness, a good wage for all, the poor would rather attack each other like scum. They did not seem to understand that only £1.2 billion was estimated to be given to people in benefits fraudulently while over £30 billion pounds was known to be avoided in tax by wealthy British companies - who were the real criminals?

Luke had not been able to work for a long time. Perhaps he still could not. There was a shortage of jobs too, especially for people lacking qualifications. The job market was very competitive. Dozens of people wanted every job. Friends he used to know and added  posted messages about benefit recipients too. The news played on their worst instincts; with every propaganda item released, Luke dreaded the aftermath. Who knows what comments they would make? And the replies from others agreeing could be worse still. It all knocked the confidence from Luke.

Ed had not changed much. He was still the joker. Luke almost felt he was back Ed's good books but he had moved on. Facebook presented the illusion of keeping in touch. In reality it was for the here and now. Talking to past friends, not receiving a response, not getting the response he expected - it was too much. They would laugh at something serious or mourn at a joke. He gave up. He could not be bothered to comment them anymore.

Luke wrote and then deleted posts; many times. He would delete before putting on his wall or ever after. What should he write to people? Why? How? It was too hard to judge. A joke, how one is feeling; invitations to drink; a simple question; gossip about the news. How unsatisfying. All that freedom was woeful. Not because it offered choice - because people didn't care. They didn't care. Why try? It was like texting. The ambiguity around language. Some people wrote correctly, others slang. Some liked abbreviations, others not. Using a period - no, no, no! Not to finish a sentence. Too final. Arrogant. Rules, rules everywhere. This digital communication... spontaneous... new... and full of rules.