Entrepreneurship

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*

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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.

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:

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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?

7am, Monday morning, on the paediatric ward

~ drjfernihough ~ Leave a comment

After a surprisingly OK shower, I head towards the parents’ kitchen which proudly bears the sign “free tea and coffee” on the door. I need to defrost; I do not need powdered coffee with no milk. Note to self – find café. I go to see how my girl is getting on, still fast asleep in bed, so I return to my room to tidy up. It is only now I appreciate the true beauty of my temporary accommodation. What more could an anxious parent need than Monet’s “Waterloo – Gray Day” painting on the wall to cheer them up? Surely the picture they left down the back of the plastic armchairs was better than this?

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8am – despite being told that breakfast starts at 7am and the ward round would start at 8:30, cold toast and rice crispies are just arriving now. This is followed by the water jug game. This hasn’t changed in the 10 years since I spent a few nights in with my eldest son, and it’s a hoot, you’ll love it. In the searing heat of the wards, water is pretty essential, some might say, as essential as the medical care given here. So, with my love of process shining bright, it is always curious to me that every morning all the water jugs are removed from the ward as these could be a source of infection and are therefore a health risk to be removed. However, it is not the job of the person who removes the water jugs to replace them. Oh no. This happens later, much later, much much later when dehydration has set in, particularly for nursing mothers. So the water jug game involves smiling sweetly (a lot) and walking around the floor trying to find the rare beasty that is a jug and two cups, or even better, a nurse who can find these for you. Eventually we find water and dad arrives to take over at 9:30. I have an appointment on the other side of town in half an hour, persuading predominantly female life science researchers to become entrepreneurs.

It strikes me that on balance, being a female, techy entrepreneur is considerably less stressful than being a parent. Many, many women leave well paid jobs armed with little more than breasts to take up the mantle of childcare single handed, whilst dad tries to keep his eyes open at the desk job. The woman is left on her own at home with an incredibly valuable, challenging, essentially unpaid job, 24/7 with no training. Not getting it right first time is really risky. If you sit and listen to Margaret Heffernan (http://www.mheffernan.com/index2.php) and I am lucky to have done so on more than one occasion, starting and running a company is remarkably similar to having children. So how is it that when asked, many women would not start their own company, citing the challenges of fitting this round children as one of many imagined barriers? If you’ve even considered having children or actually managed it without the intervention of social services I cannot think of anything more invigorating and suited to your skills base than starting a company.

I digress. Whilst I am persuading a fabulous scientist to pursue her dream, my husband is watching my daughter’s internal organs being examined by ultrasound. I return to the ward at 3pm, for the changing of the guard (dad does actually have a job to go to) and to hear my girl declare herself as “losing the will to live”. In practice this means it’s time to eat a KitKat (other forms of dental decay inducing, chocolate based life forms are available). Having eaten baked beans for lunch I can’t help thinking once again that my daughter’s diet since entering hospital and sitting in bed all day has not exactly been ideal for intestinal disorders. My daughter spends much of the day having 1:1 art tuition with an amazing woman and has already amassed a sizeable collection of plaster of paris artifacts that need painting. An educational assistant keeps walking round and remarking on our daughter’s maths skills. I wonder if she is officially employed by the hospital for frequent flyers/long stay car parkers; simply volunteering, or whether the nursing staff have just given up on trying to get her to leave the building.

5pm, and a mere 7 hours after the ultrasound has been performed, all internal organs are declared fit for purpose (in words of one syllable of course), if not swimming in a little more fluid than is normal, by another surgical registrar. They’d still like to keep an eye on her for another night. Smiling, the doctor leaves. Staying, my girl bursts into tears. I text my husband and warn him we’re going to need warm bedclothes and another spare change of clothes. My girl has supper – a jacket potato with a side order of potato wedges. They have no soup, and the ice cream is “the same as school’s, I’m not eating that”. *sigh*

7pm that evening, dad turns up with a second overnight bag to do a swap for the nightshift. The bag contains no change of underwear for our daughter and no change of clothes for me at all. He has brought the film Maze Runner on a USB stick, chocolate brownies and our daughter’s duvet. He holds up our eldest son’s sleeping bag for the arctic parents’ room and offers to stay the night. I let him; at least as far as his knees, he’ll be warm. Youngest son wants to stay and watch the DVD. There are many problems with this, not least the fact that this is not going to fit into the free 20 minutes parking allowed. Despite looking like the mutant lovechild of Metal Mickey and a Nintendo Wii, there is no remote control for the “Starlight” system. As a result, it’s almost impossible to hear the film from two foot in front of the screen, and my daughter has already watched the first half hour twice as a result of hitting the stop button on the front of the player, but without being able to hit fast forward on the remote. This lack of remote control is slightly dampening its promise of “brightening the lives of seriously ill children” emblazoned on the side.

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To be honest, it’s a blessing in disguise as Maze Runner is not entirely appropriate for the 6 year old girl in the bed next door (or our youngest son for that matter) and we’ve killed another half hour of time with the DVD repeat. I manage to tear our youngest son away from playing with the bed controls and take him home in time to avoid a parking fine and to pick up the eldest son from cubs.

9:30am Day 3 and I’m back on the ward as soon as the school run is done. This was a slightly prolonged affair as it involved 1) a lot of parents asking after our daughter (lovely); 2) the receptionist remarking on the fact that the educational assistant up at the hospital had already called and informed them that our daughter had been discharged (inaccurate, slightly creepy and in breach of confidentiality somewhere I’m sure) and 3) a friend asking if I can watch her son for 15 minutes later that day (a walk in the park after the last couple of days especially given the laid back nature of their son compared to ours). Back at the hospital and again, in the magic 20 minutes allowed by the ruler of free parking, I hand my slowly defrosting husband a cup of tea and he leaves for work. In reality this involves telling him that I have left the tea on the desk at reception as you’re not allowed hot drinks on the ward. Hot food is barely allowed in, it’s only fair.

A few minutes later, just as I am preparing myself for a long haul DVD watching/bird drawing/heart painting session and texting the parenting classes’ teacher to let her know I can’t make week 2 of 11, the surgical consultant shows up with a whole clutch of green student medics flurrying in his wake. They all remain silent while he barks at one blue clothed doctor for the blood test results. Armed with data, the anomalous, raised results are read out to a reception of total apathy. A little bit of excess peritoneal fluid is also unimpressive if you’re female, apparently. So, with that, we are free to go. They are happy to keep her in for longer but if I am confident to keep an eye on her at home, she is officially discharged. My daughter is already putting her shoes on and hobbling, bent over in slight pain, for the door. I reassure the consultant that despite not being medically qualified, I have a suspicion I might be just fine. He smiles, calls me a proper Dr, and provides cursory details on what circumstances would warrant returning. I walk half way round the hospital to pay the additional £12 parking fee, with coins, no cards accepted, no change possible. If anyone in the family is seriously ill now they are in grave trouble as I have just blown my job seekers allowance at the same rate it was accrued solely on parking one car.

What did we learn:

  • My daughter, when asked, “how are you?” now answers with a number on a 0-10 pain score scale as she has been accustomed to doing at two hourly intervals for the last 43 hours to generate a lot of completed forms for nurses.
  • There are a LOT of things that your body can do that will baffle the most senior of medics and for which an army of tests will be inconclusive. You will be absolutely fine.
  • It will have cost the NHS several hundreds of pounds to complete 1 and 2 for which I am eternally grateful, but also feel could have been better spent somewhere else. Perhaps on some training on managing customers’ expectations; subtitled “how not to lie about how long all NHS processes take and report past events as a false guide to future ones”.
  • Don’t google your symptoms, simply follow the scheme below:

Do you need to attend A&E? (Follow these instructions at your own peril)

Have you had an accident that has caused your limb to be seriously bent at an awkward angle, NOT where it normally bends?  If yes – go to A&E.

If no, have you had an accident that caused your parent to go white as a sheet, as though they are very scared and/or sick and they are trying not to cry? If yes, lie them down, reassure them everything will be fine, administer tea and wait for a bit. If you were able to do this without hitting a 10 on the pain scale, i.e. the worst pain imaginable, take paracetamol, neurofen and savlon as necessary and stay at home with a DVD player with a working remote control.

If you have not had an accident, but are in pain; as they say in Big Hero 6, “woman up”, at home. Take paracetamol and neurofen as necessary and watch your temperature. If your pain reduces, even slightly, after 30-40 minutes and your temperature remains normal, the drugs are, on this occasion, working. Rest, perhaps with a DVD player with a working remote control.

Do you have a high temperature, vomiting, pain and diarrhoea? If yes, you probably do need to go to A&E and there will probably be a sign on the door saying that anyone with a sickness bug is not allowed on the ward. Pack a decent overnight bag with you, using an ascent on Mt Everest after a long haul flight with airport parking paid in cash as the guide for the quality and quantity for the contents.

New email. Simple. February 24th 2015

~ drjfernihough ~ Leave a comment

Need a gmail account for my new company – simples – go to Google. Get half way through the interminably complicated procedure of demonstrating that I own my own domain and realise that I am actually going to have to host my web page somewhere to show that I own it. I build my web page and transfer hosting domain. In this process, I discover that a) I now have superior technical app development and software coding skills that I’m not sure I will ever use again until the moment I forget how to do this and b) my web hosting provider is cheaper than Google for a google email address. Buoyed by my new skills, I apply for a gmail account with my web hoster only to be told that Google still thinks I want this domain and has an account open for me, they can’t give me a second one. Enter the neverland of google app account deletion (I am now a jedi software manager) and receive an email to say I don’t exist. Brava. Log back on to web hoster and get the same message again that Google thinks I STILL have that domain, but they will refund payment, honest guv. Log back into Google with Bath gmail details to enter the neverland again, but can’t do that, because my Bath account isn’t an administrator account, I’ve deleted my company’s administrator account and don’t exist any more, yah boo sucks to you. This all started because I logged on to register for VAT and the form asked me for my company email address. Loving the paperwork vibe this week.