Month: May 2015

It is MUCH better to be STUPID and unemployed/disabled

~ drjfernihough ~ Leave a comment

This week has been a bitty one to be honest. One sensory review of my smallest ADHD son, coupled with the ever increasing joy of signing on and parenting classes. Let’s start with the post though, and a refusal to renew the Disability Living Allowance for our eldest son who was born with bilateral cataracts and CMV infection. He only uses one eye, so has no 3D vision and what vision he has is low contrast, with poor visual acuity. His CMV infection has left him with a strange way of viewing the world. I spent half an hour with him recently trying to answer the question, “Mimi, what would happen if you’re stuck in a queue of traffic that’s not moving and as a result of an emergency you had to go backwards?” No amount of “you can’t drive backwards over the car behind you” was an acceptable response apparently. As his parents, we spend a significant amount of time helping him to make himself understood, adjusting his environment to remove visual hazards or helping him navigate his environment when it can’t be changed and making sure his glasses are clean and in front of his eyes, not half way down his face. As a result, he doesn’t manage too badly. This is particularly true when he doesn’t actually go anywhere new very often because we’re too exhausted or broke to go anywhere new with him. Therefore, he lives in a familiar, (visually speaking), world and he is bright enough to compensate for poor vision by using his brain. This requires a huge amount of effort for him, so comes at a cost to his ability to process mental challenges simultaneously. However, he’s smart, and at the age of 10, when nothing he does at school taxes his brain hugely, he manages this pretty well too. So, when he’s assessed for his level of disability he doesn’t rate as “vegetable” and is therefore not in need of significantly more care than his peers. If you’ve already invested significantly more care on your disabled son, you will reach a point where objective analysis deprives you of the means to continue providing that support. If you’re too stupid to do anything imaginative and constructive to help your son’s mental development and your son isn’t smart enough to compensate for his visual challenges by using his brain, you can receive £70 a week to spend in Lidl to feed your baby peperami (later my dear reader, bear with me). Instead, the benefits bill is clearly being cut significantly by removing entitlement from all the smart disabled people who have found their own alternative strategies intelligently and independently.

Which brings me on to my smallest son, currently (at least) in receipt of disability living allowance for ADHD with oppositional defiance disorder (ODD). The school staff, and us as his parents, are still at a loss to identify some of the triggers that cause spontaneous combustion of smallest son. These outbursts are violent and troubling for everyone involved, so solving this issue would be handy. Suggestion has been made that they may be sensory in origin so this week we went off to have a sensory assessment. As an aside until I had actually parked the car and already committed myself to a £3 fee, and gone through to the reception desk, I did not actually know what on earth the appointment was for. A full page letter received week ago, scattered with barcodes, snowflake codes, hospital number, an NHS number and lengthy text about parking and missed appointments said nothing about what the appointment itself was actually about. It could have been bed wetting. However, as the waiting list for this is so long, Connor has worked with the Rodger bedwetting system and/or grown out of this long before the referral has come through. I called over a week ago to try and find out why we needed a paediatric occupational therapist in our lives, and spoke to an answering machine. My voicemail was later called back, but no information left. When I rang up on the day, the reason for this lack of information became clear as there was no record of anyone making the referral at all. Instead they asked if my smallest son “had issues” to try and ascertain just which ones were being addressed that day. I resisted the urge to refer the paediatric occupational therapy department to my earlier post and promised to turn up at the prescribed time and place.

So, a sensory assessment is clearly an exciting thing for a bright 7 year old to do. Balancing, jumping, socks on and off, counting to 10 with your eyes closed whilst simultaneously doing things with opposable thumbs, it’s a riot. When he discovers that the “aim” of the game is to score 3 rather than 1 for each task, it becomes an Olympic sport. This level of activity, focused on getting an ever higher score appeals so much, that all thoughts of chewing pencils, defying orders or having a mega strop are long forgotten. End result, we have a kid with strong preferences (all school food is disgusting) and extremely high activity levels, but no dominating sensory issues. His level of ability means that all available strategies, like close fitted, stretchy, “huggy” shirts will be less than useless.

Note to self, stop carrying huggy shirt to and from school each day in the hopes that one day smallest son will think it is a good idea to wear this.

I did ask briefly if they thought if they thought that the child and adolescent mental health services (CAMHS) would be able to help, but this was not only outside their area of expertise but also pretty unlikely by the looks of the facial expression I got back during the polite silence. The parenting classes I’m doing are the gateway for access to CAMHS which now inspires me even less……….

On the topic of parenting classes, my dear reader, what can I tell you? Nothing I’m afraid, I am forbidden by confidentiality to blog on this topic. So instead I will delight you with information on the geographic area immediately surrounding the location of the classes: specifically, the city’s brand new Lidl. Now we’ve had a Waitrose in town for as long as people have been rubbing two sticks together and using them to eat sushi. A Lidl is a very new addition and a long way away from the centre of town/Waitrose/the library. As I needed to get some ingredients for supper after the parenting classes I thought I’d go in and see what the fuss is all about. It was also lunchtime so I thought I’d pick up a sandwich. Once I’d walked past the opening aisles (plural) of biscuit based carbohydrate, I was relieved to hear another couple ask someone for the location of ready-made sandwiches. They were shown to the location of the deep fill BLT and cheese ploughman sandwiches. That’s it, that’s the whole range. The couple decided they weren’t interested. As you can see from the image below this was a wise decision, with hindsight. However, it turns out this was not a decision made for themselves, oh no, it was made for their son in arms, probably no more than a year old. Before I had time to think “thankfully at least one couple in this neighbourhood knows how to bring their kid up moderately well after all” the father turned to the mother and said, “oh well, let’s go and get him a pepperami then”. *sigh*

unnamed

Back home I quickly fill out the online form to prove I’m looking for work. This is dutifully ignored the next day as I sign on. I ask if the job centre has any support from/access to companies that can sponsor me to get security clearance in order to be eligible for MOD contracts. At the immediately blank faced response, I pointed out that the online information makes it clear that I cannot apply myself; I need a sponsor and that personal contacts have told me that there is a six months backlog in people waiting for clearance and hence a lot of jobs available. The blank face continues to be blank. I knew this was a waste of time, it’s just too much fun not to try. “Have you tried the .gov web page to find a list of companies?” I tried to explain (again) that I know there’s a list of companies that can do the sponsoring, I wanted to know if the job centre could actually put me in touch with one of them. My question has been noted (on a post-it) for the advisor at my next appointment to help me with. We spend the rest of the 10 minutes appointment discussing my adviser’s month long holiday in Thailand he’s going on soon. I can’t wait to sign with “a member of the manager’s team” next time. Be still my beating heart.

I did get to engage my brain cells briefly at a professor’s book launch at Bath University, on the topic of manufacturing in the UK. I was able to discuss starting our own companies with a fabulously smart MBA colleague and friend and ask a former member of the government how to improve gender equality in technical industries. None of us could identify the content of the canapes, but the future of “making” in the UK looks safer than I had previously thought.

So what did I learn this week? Parenting classes, signing on, getting access to DLA and probably many other state derived support mechanisms are all much easier to access if you have done nothing intelligent to help yourself first. This seems wrong. Granted, I’ve watched parents (years ago) frustrated with their toddler’s aggression towards an older brother, who did not realise the hypocrisy of smacking him to tell him so. These parents may, therefore, be too stupid to help themselves and need state intervention. There’s a strong argument for the state being there to help those who cannot help themselves. Should the reverse logic be equally true, that those who can help themselves don’t get support when they need it? The quality of the state intervention leaves so much to be desired in this situation. The job centre may be the best oxymoron ever and the health service may be beyond repair. I certainly can’t fix either one myself, the worrying thing is that I haven’t seen much evidence that the people inside the government can either.

Vodafone- I’m loyal, not masochistic

~ drjfernihough ~ Leave a comment

As a bona fide geek, I joined the line of people waiting for the Samsung Galaxy S6 Edge phone last month, and when I saw its metallic beauty in the shops at last, I called Vodafone customer services (191) from my decrepit elderly iPhone in order to upgrade. I’m calling this day, April 14th, Tuesday, Day 0. After pointing out to the Vodafone man at the end of the phone that their packages were more expensive than all other providers put together and I could just go to Carphone Warehouse for a much better deal, I was instantly offered a 25% discount. I ummed and aaaed further as the Vodafone signal at our house is on a par with a cup and piece of string, so there’s a lot to be gained from leaving Vodafone. My umming and aaahing got me a further 5% discount, apparently the maximum he could do, bringing the monthly contract bill for the hottest phone in town to £37.80. I had to pay £9 upfront for the “gold” handset, which is actually way more beautiful than it sounds. Excited beyond belief, I got a text on my phone promising next day delivery with DPD.

Day 1, April 15th, Wednesday, I waited in all day for DPD to bring my shiny new plaything. No phone. No additional text suggesting that it will ever be with me.

Day 2, April 16th, Thursday I call Vodafone, which is a fairly tortuous procedure through menu item 1 (problems with your account) followed by menu item 3 (upgrading) to get through to a random person as there isn’t a menu offering that says “hacked off with not having a Galaxy S6 phone here yet? Press 4”. The next thing you need to do is put your phone number into the system as although they can detect the number you’re calling from, this may not be the account you want to talk to them about. This would be a genius bit of process were it not for the fact that the very first question you get asked by every operator after that is “what is your phone number?” Once you’ve put your number in, at top volume the next thing you hear is “GREAT NEWS! The Galaxy S6 is here!” Irony noted, I finally get through to a real someone who tells me that in fact they don’t have any stock yet, and so it is likely to be Friday or Monday that I will receive my phone. I thank him and wait until Monday, when of course, I do not receive my phone. As the delivery slot runs to 6pm and the Vodafone lines are open until 6pm, it is Tuesday before I can call again.

Day 7, April 21st, Tuesday. I go through the whole menu, phone number inputting, “GREAT NEWS!” message and hold music to get through to a helpful man at Vodafone who gives me £10 credit on my account straight away for the inconvenience of not having my new phone yet. I should have been suspicious that this part of their system works well, but I feel quite amused that now Vodafone have paid me £1 for me to wait for my phone. Helpful Vodafone man also has access to a system that tells him that my phone is in the first batch to be delivered next, which will either be Friday or Monday. I begin to suspect that all Vodafone call centre trainees are told that their customers have goldfish like memories and one good weekend out will wipe their minds of calling 191 and listening to John Newman singing “Know I’ve done wrong, Left your heart torn, Is that what devils do? Took you so low, Where only fools go” for 20 minutes on a loop.

Day 11, April 25th Saturday I get a text to say that my parcel is on its way and I can track it with DPD online. Thrilled to the core, I do just that. At 2:51am it was in a ‘hub’ in Birmingham and is on its way to a depot very near me. Monday, it’s got to be Monday, I’m going to get my phone on Monday.

Day 13, April 27th, Monday, I don’t get my phone. By the time I realise I am definitely not getting my phone today, it is too late to call Vodafone.

Day 14, April 28th, Tuesday. I have to go out first thing for the thrill that is parenting classes and when I return home, my heart sinks to see the little red sheet of paper on the floor of my hall. DPD are “sorry to have missed me”. I am invited to track my parcel online where I can also change my delivery date. Online, my parcel is still “on its way to the nearest depot” and there is no option to change or do anything about that. Then I remind myself – DPD are not in the delivery business. Bear with me, because I’m sure you’re thinking they have white vans, surely one of the D’s in their name must stand for delivery? No. The only thing DPD deliver are little notes to say “sorry we missed you”. The numbers on these do not correspond to your package, so they can try multiple times and all you will get are more little numbers.  DPD’s business model is to get you to call them. They do not have a freephone number, but they do have long hold music and cheery people who try to talk to you for ages. They have to do this to a certain extent, because they are also trying to search through their systems to match up a random number generator (the card through your door) with one box in a million in a depot somewhere. Once they’ve tried to do this for me, and failed, they ask me if I am expecting more than one parcel. If so, I need to call the sender and ask them where it is. I point out that if I was expecting a second parcel, I would have tried the tracking number for that parcel, and got a different message online, so clearly I am not. So who exactly should I call about a parcel that I am not expecting? I give up with DPD and call Vodafone. “GREAT NEWS!”……. they suggest I call DPD as they have no information on my parcel other than “it’s on its way”.

Day 15, April 29th, Wednesday. I spend 3 hours dialling 191 10 times, yes, ten times. “Now I’m rising from the ground, Rising up to you, Filled with all the strength I found, There’s nothing I can’t do. I told you once I can’t do this again, do this again, oh no” – John Newman’s ‘Love me Again’ hold music was an apt, if not slightly repetitive, anthem for my afternoon with Vodafone. Part of the 3 hours was spent on hold because I had initially joined their queuing system 3 times and waited for them to call me back. However, even though I was sat in my office less than 2m away from a Vodafone “Sure Signal” box, all I got were voicemail messages saying that Vodafone had tried to call me. I did get through to someone once, they put me on hold to look at the system and half an hour later I was literally losing the will to live and wanted lunch. As there’s no chance of getting a signal outside my office, I hung up and Chose Life. The last person I got through to after another half an hour on hold told me that there was nothing she could to help, and there were no systems she could check as the last person I spoke to “has opened an inquiry” to see where my phone has gone. This can take up to 5 days. She admitted that they had lost my phone, and in fact, that entire shipment. At £700 per phone, that’s quite a loss for a company that appears to be competing on cost rather quality of service. Beyond fed up, I let this woman know that if they haven’t found a metallic Galaxy S6 Edge to deliver to me at the end of the inquiry I will be going to Carphone Warehouse.

Day 21, May 5th, Tuesday. With the Monday being a bank holiday, I would have called Vodafone on this Tuesday, except I was in the middle of the Peak District for a photography day with my mum. We had just had a wonderful lunch seeing a former colleague I haven’t seen for 10 years, hearing about her brilliant work outlined on www.breathingremedies.co.uk and we were all set for a day of beautiful landscapes. As our most knowledgeable and lovely tutor Stephen Elliott turned up, I reached into my pocket to turn my phone off, only to see that Vodafone had chosen that precise moment to call me. The all too familiar terrible, crackly line and Indian accent made me realise I was in for a good 5 minutes of pre-amble before the reason for the call became clear. The caller told me that I should have received my new phone two weeks ago. I told her I knew this. She apologised profusely for losing my phone, and I thanked her. She promised me that I would receive a new phone the next day, she was sorting it out for me NOW, to make sure I did not have to wait any longer. I received a text almost instantaneously to support this claim. The only slight snag in this whole plan was that the next day, I was still in the Peak District a good 4 hours at least from my house. There was no way I could bear to hear the overly loud and cheery “GREAT NEWS!” again, never mind listen to the hold music again, so I simply said “that’s great, I need to go now, thank you.” Manic texting followed to make sure my wonderful neighbour was OK with being available until 3pm and to my husband to put a note on the door to that effect. Finally, phone off, smile in place, I had a great day out and even managed to get a couple of good photos despite the weather.

millstones        Carhead

Day 22, May 6th, Wednesday. Exhausted, I arrived back in Bath in time to sign on in town, with my semi-regular guy. He asked me to use the electronic system and I couldn’t resist asking what benefit this gave over pen and paper. Call me cynical, but I had not seen a great benefit in any electronic system for a good few weeks. I was reassured that not only did the electronic system confirm that my signature was 98% similar to my last one, but it also approved my payment as well. I stopped short of asking how much longer he expected to be sitting on his side of the desk in the face of technology doing 98% of his job. I decided to go home and get my phone instead. So I thought………….. Once again, I realise that my text is only information that a phone is somewhere in limbo between Vodafone and a DPD depot and there’s no confirmation of anticipated delivery. Online tracking tells me that DPD is “experiencing technical difficulties in locating my parcel”. Just for the hell of it I call 191. Apparently, there’s great news: the Galaxy S6 phone is here! Once I get past the ironic announcements, menu items, hold music and an obligatory being cut off and starting all over again, because suspiciously, they no longer seem to have a queuing system whereby they call you back; I am told by a real person that Vodafone have no stock of this phone and they have no idea how or why I was called with a delivery promise.

Day 23, May 7th, Thursday. It’s my birthday and so I decide to celebrate by NOT calling 191. I go out into town and put a note on the door asking any delivery driver to try half the village before leaving a note but no parcel. I have a great day, and decide that I will call Vodafone the next day.

Day 24, May 8th, Friday. “GREAT NEWS!” More hold music, and two hours later I get through to someone. I’m so fed up I ask if I can still cancel my contract as it has been longer than the 14 days cooling off period since I started it. As I haven’t even received my phone, this action is indeed possible. I drive into town, park in Sainsbury’s to get an emergency 6 pints of milk (this lasts ~3 days in our house) and 90 minutes free parking and walk straight to one of the four Carphone Warehouse shops in town. 90 minutes later and £100 extra cost compared to Vodafone over 24 months I have a Galaxy S6 Edge phone in my hand and a contract with EE for £31.99 a month. Better reception in my home town, better service from the Geek Squad and staff in the shop use a computer system that can identify where their stock is, live. I even have a spare phone so that if there is any gap in service as the PAC code migrates, I will have a phone I can be reached on. How did we manage when phone screens were this small?

spare phone

My life is complete, or will be after just one more task. I call 191 and ask to cancel my contract. I am put on hold. When the person finally returns, she tells me that my phone is on its way, it’s being delivered with DPD, she can see that this has been delayed…………………. I have to stop her and remind her that I called to cancel my contract, not to be told the same thing I have been told for 23 days and could she please do what her customer has asked and cancel my contract. I am told to wait on hold while I am put through to cancellations. Half an hour later I am back with her and she tells me she is putting me through to Ian in cancellations. I am on hold again and another 10 minutes later, I finally talk to Ian. He offers to sort out my phone delivery for me. I stop short of hanging up as this might actually be the last call I have to make to 191 ever and I tell Ian that I do not want anything more from Vodafone at all. Ian offers to drop the monthly contract price. I resist the urge to sing back to him the hold music song Vodafone have been playing at me for days and which is now permanently etched in my brain, “It’s unforgivable, I stole and burnt your soul, Is that what demons do?, They rule the worst of me, Destroy everything, They bring down angels like you, Can you love me again?”

I tell him that I am happy to pay an extra £100 to leave Vodafone and there is nothing he can do to keep me, especially by dropping the monthly cost. I tell him that I value good customer service and promises being kept, and will pay for this even though I am in fact not even earning at the moment. I don’t appreciate companies who compete on cost alone to the point where all value has been removed for both the company and the customer. In the time it takes me to say that (rant), Ian has cancelled my contract and got my PAC code for me. Now totally unsurprised that this bit of Vodafone’s system works well, I pick my kids up from school and play with my new and very lovely phone.

Galaxy-S6-Edge

 

A week of contradictions

~ drjfernihough ~ 1 Comment

As a celebration of diversity, I think it is amazing that we live on a planet with the starkly contrasting environments that I have observed this week. We have huge multinational companies striving to make the world a more efficient or easier place with technology that makes your mind boggle and climbers on Mt Everest facing perhaps the world’s greatest natural challenge, particularly in the face of this week’s monumental earthquake. In our modern day global village, these stark contrasts butt harshly against each other, appearing as they do on my PC window onto the world in nothing more complicated than two Google tabs. Despite the close connection in physical space, there could be no greater disconnection between these contrasting environments this week, and I think that is a shame.

Let’s start with the natural challenge that is staying upright on Mt Everest’s base camp on the Saturday morning of 25th April. Within hours of the earthquake that decimated every building not built to withstand  a 7.8 richter scale impact, drone footage was broadcast around the world of Kathmandu and the devastation it experienced. Facebook was awash with tourists sharing past photos of people smiling in front of buildings now destroyed, expressing concern for people they met. Less immediately accessible but available now, here and elsewhere, was footage of the resulting avalanche at Mt Everest’s base camp. This footage comes from an interview with a man called Nick Talbot, aiming to be the first person to climb Mt Everest with the genetic disease, Cystic Fibrosis, he has had from birth. Nick is an experienced climber who has been to Nepal on many occasions and has trained hard to climb the nearly 30,000 feet to the summit with his impaired lung function. Indeed, he was there last year to attempt Mt Everest’s summit when the avalanche hit, killing 13 sherpas, and abruptly ending the season’s climbing opportunity. One year later and the link above has Nick talking from a hotel in Kathmandu about running from an avalanche, not as he points out because you can outrun one of these, but simply to reach a position of some shelter. Being knocked down and pulling himself up numerous times I can’t help but run the Chumbawamba song in my head and marvel at the internal strength that makes someone dig themselves out of the snow, with fractured ribs, in a T-shirt and trousers (no shoes), in freezing temperatures, knowing that their whole camp is destroyed. Anyone who has laughed at a Dilbert cartoon and remarked on their first world problems cannot fail to be shocked and humbled by listening to this short interview. Nick himself is doing all of this to raise money and attention attention for Cystic Fibrosis and the ever present need for better therapies. His fundraising page is HERE. I ran a half marathon for this cause in 2014, so anything you can do is much appreciated. So far, Nick has raised over £50,000, just over half way to his target.  So what will £50 or even £100,000 get you in the drug development world? Average costs to develop a drug now stand at $1billion dollars. Even those now confused by my laissez faire attitude to converting $ to £ cannot fail to see a monumental gap here. So raising awareness is even more important, please share this blog if you feel moved to do so to help with this. Because until corporate sponsors pay little more than lip service to their social responsibility, public donations are not going to increase the budget for funding research into diseases that have small numbers of patients.  And this brings me to the corporate tab on my Googling history this week…..

In other posts (here and here), regular readers will know that my mind frequently boggles at HP printers in particular that despite having both a PhD and MBA, I am totally incapable of operating. I suspect it may be printers in general and it is unfair to wage war on HP’s offering in particular. However, HP has been in the news recently as this 75 year old birthplace of Silicon Valley is splitting in two. hp Inc lives on with all the unmanageable printers and a new sibling is born, Hewlett Packard Enterprise. A new company requires a new logo and so this was the big announcement from the CEO of a company that employs as many people who live in Leicester/Iceland. The new logo and back story behind it was unveiled on the 15th April:

hp_enterprise_logo

I can’t help but wonder (in relation to Nick’s fundraising) how much they paid for someone to come up with a green box and to join the t’s together. These two features are symbolic of simplicity and collaboration apparently. The internet is awash with opinions on this announcement which can be summed up by “meh”. For a company with the tagline “invent”: as the CEO puts it, “we are innovators at heart – that’s in our DNA”, perhaps a box was not the best branding metaphor?

I can’t help thinking that if collaboration was really important to HP would it not be reaching out to connect with the rest of the world on a more meaningful level than remarking on how the two tt’s in Hewlett are joined together for the first time in history? I would be slightly more moved by evidence of connecting with others than font kerning. Perhaps HP are enabling the data streams from every one of those drones taking film footage over Kathmandu, perhaps they are restoring communications to thousands of homeless Nepalese families as I type. If so, Google does not know of it and hp do not seem to be shouting loudly about doing so. I am not pointing the finger deliberately at HP alone; philanthropy is at the heart of HP’s founding history, with continued connections to the Lucile Packard children’s hospital at Stanford University. I’m sure many other companies share Hewlett Packard Enterprise’s seemingly heightened ability to look inwards whilst expressing the values of collaboration. Every day there are companies all round the world struggling to differentiate themselves to the jungle of customers and a green box proudly presented to the world 10 days before an entire country felt the force of nature at its most raw was undeniably, unfortunate timing. It would be great to see some corporate social responsibility at work in action not words now. I wonder how many companies will sponsor Nick in his continued quest to raise awareness and funds for people like him with Cystic Fibrosis?