Privatising the NHS isn't as bad as it sounds

In the early morning and every now and then in the car, I actually manage to hear some snippets of radio. On it, I've often heard people spouting off about the 'cuts to services' the government has had to implement. (They're not exactly cuts to services anyway, they're cuts to budget, which some councils apply badly - don't get me started). Anyway, everybody seems very concerned at the spectre of using private provision in the NHS. Once I signed a petition to stop parliament from passing an extremely silly law about internet safety and privacy, and now the same organisation keeps contacting me to sign more petitions. Sadly, I haven't agreed with them since, and the same goes for their latest petition to stop the reforms to the NHS. I say bring it on!

Addison's crisis - Not dead yet, Jim!

I haven't blogged for a bit as I was on holiday and when I returned, my hard drive mysteriously had crashed. At least we weren't burgled, as that is one of the favourite half-term pastimes in our neighbourhood.

It was quite an eventful holiday as we had occasion to use Kirk's emergency 100ml intramuscular hydrocortisone injection.

Star Trek would have it sorted by now

It's pretty official now... Kirk's developed a condition with a name! Addison's disease.
Besides obviously already having a tumour and having lost all the hormones his pituitary makes, he's also lost cortisol, which is produced by the adrenal gland. Well, at least it has a name, some notoriety, and they make you carry a blue card for emergencies. Kind of cool.

Even cooler would be if the 21st century ever delivered what I've come to expect from the future as presented in the past. Star Trek is just one example. How light they make of those perfectly treatable diseases that were still killing people left and right back in the 20th century. No such luck. No quick diagnosis by tricorder, no immediate treatment with a one-size-fits all hypospray and a short spell in sickbay. Your choice of doctor: grumpy drinker, career mum, genetically engineered genius, or hologram.

Science fiction isn't always far from the truth though. Why recently, for the remake of Tron, they scanned the actors into the computer exactly like they imagined in the original. Back then, they made it up. And within their lifetime, it came true!

Anyway, I've invented the world's first artificial pituitary.

On the one hand, the pituitary gland is a kind of thermostat. It measures the values of certain elements in the blood and reacts accordingly to adjust those levels. It also reacts to certain other bodily states in order to, for example, stimulate more cortisol production in times of stress. As I understand it, fairly simple computers can perform similar tasks, like an electronic blood pressure meter or a fingertip pulse oximeter. Given recent experimental developments like IBM's chip on a molecule (http://www.theregister.co.uk/2006/03/24/ibm_nano_chip/), it should be possible to create a measuring device and processor small enough to be portable or even, ideally, implantable.

Of course, implanting foreign objects in the body can cause rejection, so I would look for a solution by building the processor out of biological materials. There's already been successful experiments of this as well (http://news.bbc.co.uk/1/hi/sci/tech/358822.stm). You could use cells taken from the patient's own body. Perhaps even cells from their own pituitary gland, which, helpfully, actually contains adult stem cells so they would be ideally suited to engineer into a new form.

The other role the pituitary fulfils is that, after having monitored the body's needs, it also produces the necessary hormones or stimulating substances for other glands to produce other hormones. Now, making new cells out of scratch can be a tricky proposition. At the moment, replacement hormones are synthesized in big laboratories and then injected or taken as tablets etc. An intermediate solution could be to do much as the continuous glucose monitoring system for diabetics does. A small device is put just under the skin to measure glucose levels and it then radios to another small device to inject synthetic insulin as required. The artificial insulin comes out of vials and needs to be kept topped up.

However, I'm being ambitious here. I'm designing a completely artificial pituitary, to effectively replace a broken one. It needs to be small, implantable, and virtually maintenance free. I'm willing to put up with it needing replacement every 10 years or so (like an artificial heart valve) and I can allow it to be bigger than the actual pituitary gland, as we'd probably not want to implant it in the brain anyway. I was thinking upper arm, and roughly the size of a contraceptive implant.

The replacement pituitary would, similarly to the original one, have to use building blocks that are present in the body to construct the hormones it needs. As we can synthesize hormones in the lab, I assume we have their 'recipe'. Then, it is merely a question of building a finger-sized lab/hormone factory. This would take some serious nanotechnology, but I'm sure both the molecule microchip and biological processors can provide a solution here.

Come on people! This is the 21st century. Let's stop injecting ourselves with needles and taking tablets. None of those methods even come close to mimicking the intricate machinery of the human body. I want my flying car, my robot housemaid, and some miracle medical breakthroughs.

Which is the odd one out? National - Health - Service

I recently read an article about the Jeremy Kyle show, in which it was suggested that, for some, this is the only way they can access essential health- and other care like social and psychological support. It was even claimed that there was some sort of class-related disparity in the way the NHS provides care. An example was given of a woman who had become physically addicted to prescription painkillers after an accident. When she went to her GP for help, he allegedly stopped her prescription cold, without taking into account her physical dependency. This 'forced' her to buy tablets illegally in the street. When asked why she did not go to the doctor for help, she replied: "They don't have time for the likes of me." The journalist held this up as an example that people like her were alienated from and ignored by the medical profession.

I have to wonder though. If doctors don't care for her, who treated her after the accident? Who prescribed pain relief in the first place? Kirk takes potentially addictive prescription painkillers, but he is careful to stick to the recommended dose and monitors his intake to avoid developing a physical dependency, even if that means suffering pain instead. I very much suspect this woman did not follow her medication guidelines and allowed herself to get addicted. She then visited her GP for more prescriptions. No sign of reluctance to access health care yet! She had no interest in getting help to quit her addiction, she wanted it enabled. Quite rightly her GP refused. And that's when it suddenly becomes a class thing. He has no time for her because she's 'working class', not because she's an addict and a drug-seeker. Sure.

In the article people who were - I suppose - not 'like her' were described as 'middle-class' and 'yummy mummy'. Apparently, the latter are articulate, know their rights and demand appropriate care when they need it. And apparently, because they look after themselves, they are somehow depriving others of proper care. Don't we pay taxes? Isn't it 'national' health service? There should be enough provision to see all. Why are there such long waiting lists for everything? Why do we never get to see the consultant? Kirk has an endocrine problem that he practically diagnosed himself and he has had to fight every step of the way to get proper treatment for it. Meanwhile, in the same department he sees type II diabetics who refuse to stick to their diets and are unwilling to take their medication properly. Whether that's class related I don't really care. They're getting more and better 'service' because their own behaviour makes them ill. They risk fits and comas, they risk their limbs and their lives and they are continually seen and helped and treated for all these avoidable conditions they have brought upon themselves. Meanwhile Kirk who is not at fault for the microadenoma in his brain and who is careful to follow guidelines, avoids developing emergency conditions like fits and comas. Inadvertently, this also means he avoids getting seen at all. He's a low priority. He gets to go on the waiting list because he's not going to let himself acutely die in the meantime. So much for service.

If there is any truth in a class disparity in the NHS, I'd argue it is the middle classes missing out. We follow the guidelines so we don't end up in A&E with overdoses, addictions or missed doses. We take prescriptions and wouldn't dream of buying dodgy tablet illegally on the street, even if our prescription was stopped. We book appointments through the proper channels and wait months, rather than clog up the system with real or imagined emergencies. We suffer in silence. And suffering isn't good for our health.

So which is the odd one out? National - Health - or Service? None of them. They're all untrue.

Cortisol... check! Last one to go

After a recent blood test - by recent I mean a few weeks of course, we are talking NHS here - it turns out that as we suspected, Kirk's cortisol levels are now worryingly low. This was to be expected. For the past year, his pituitary gland has been gradually shutting down all production of adult growth hormone, testosterone, thyroid stimulating hormone, and now cortisol. The good news is: it doesn't do anything else so nothing else can go wrong. Unless the adenoma turns into a prolactinoma, but that's unlikely. If it was going to, it would be one by now.

Cortisol deficiency is a bit scary. It's the hormone that the body uses to cope with stresses. It is given in standard daily doses, but sufferers need to carry an 'emergency' dose with them to deal with unexpected stresses. And they have to take extra doses, for example when they're fighting an infection. If levels of cortisol are too low to help the body cope, then the person can suffer some sort of crisis and black out. I'm not quite clear on the details yet, but surely Kirk will learn more from the consultant later this week.

But, ever the optimist, I now look forward to seeing my husband gradually improve as all the different replacement therapies are tweaked and balanced out. With any luck, his condition will stabilize and he might be able to regain the strength, health, and fitness he has lost over the past 18 months of deterioration. Maybe, in a few years, he might return to work? If only the tailored exercise and rehab programs that are recommended for his condition were actually available on the NHS. But that would mean they have to have personal and sustained attention for a patient with individual symptoms. Good luck with that.

Optimism and reality don't match.

Get well soon!

One of the worst things about Kirk's broken pituitary is that nobody understands what's wrong with him. He's been home for more than a year now and unable to work. Summer before last, he finally gave in and stopped working. The GP could find nothing wrong and was about to write it off as 'stress' or chronic fatigue syndrome. After some research on the internet, we guessed it might be an endocrine issue and as Kirk had private insurance through work, the GP grudgingly gave a referral.

Turns out it wasn't stress. It was a pituitary micro-adenoma; a benign tumour on the pituitary gland that was causing the pituitary to shut down. Unfortunately, this is a chronic condition so after the diagnosis, we were sent back to the caring surroundings of the NHS.

More info on http://www.pituitary.org.uk/

The pituitary is responsible for releasing several hormones into the body. You might think an adult doesn't have much need of hormones but nothing is further from the truth. Thanks to hormones, people can recuperate from the stresses of everyday life. And I'm not talking about those things that are generally considered stressful like angry bosses, deadlines, paying the bills; or physical stresses like running a marathon. Everything little thing we do every day puts some level of stress on our body and mind. That's why we have a rest, eat some chocolate, and sleep. Mostly while we sleep, but also generally throughout the day, our pituitary releases hormones as we need them. That's how we add and maintain muscle mass and bone density; it's how we deal with the mental stresses of the day; it's how we build up strength and resilience.

Without his pituitary functioning properly, Kirk has been losing muscle mass but gaining weight, he's developed memory and concentration problems and easily becomes agitated or even depressed, he comes down with every infection that is going around. He's constantly fatigued and in pain. Resting doesn't help and only prescription pain medication even takes the edge off.

And there's where it gets annoying. Try and explain this to all those people who unwittingly ask: "How are you?" What silly suggestions we get! Everybody is tired after a long day of work and school runs and housework. Everybody is so used to hyperbole, that the meaning of the words 'fatigue' and 'pain' are lost. Have we tried their favourite brand of multivitamins? Perhaps some acupuncture or pilates will help? If some other part of one's body stopped functioning, like a leg or a lung or even a heart, would anyone suggest herbal remedies and a cranial osteopath? Of course not. But it's just one of those 'invisible' illnesses, isn't it?

How to get ADHD

I always suspected Bambam might have ADHD, or at least, that there was something about his development that  was atypical. Several parents and teachers have praised me on my persistence and success in pursuing a diagnosis and treatment for him. Perhaps I should share some of my experiences here.

When Bambam was a baby, he seemed to find it exceptionally difficult to calm down. He also did not play 'appropriately'. He had toys that stimulate different senses and are meant to elicit different responses, but he would only throw and bang. Since then, I have noticed that other babies can also, for example, investigate and concentrate quietly. Obviously this is normal for any baby and certainly, at this point, there would have been no reason to suspect a problem.

As he grew up to be a toddler and an older child, his speech seemed delayed to me and he continued to find it difficult to play with toys appropriately. Throwing balls and banging hammers is fine. But most children will build with blocks, fit puzzles, draw with pencils, roll marbles down the track. Bambam was, well, like Bambam, or Godzilla. Constantly on a rampage. At home, I soon organised toys and furniture to be safe to drop, throw, and bang into. When out, I developed an iron grip to hold his hand and it still felt like walking a cat.

He couldn't focus on anything, even if he liked doing it (with the notable exception of screen-activities, common in ADHD) I learned to break down instructions to him into very short, very small steps. Not: "get dressed", not even: "put your trousers on", but "pick up your trousers" - pause for execution - "now turn them over with the button to the front" - pause for execution - "now put your one foot into the leg"... etc. If left to himself with this for even a moment, trousers and all other clothes would be flung around the room and hanging from the light fixtures.

I must stress, he did none of this from malice. He was, and is, genuinely incapable of controlling these impulses and focusing on the task at hand. He was often surprised and even saddened by the havoc he caused, like he wasn't really there when it happened.

By this time, I felt we needed a professional opinion. What really got my goat was the difficulty at reaching the right specialists. I mentioned a problem to the health visitor, who told me to go to the GP, who referred me with no result for more than 6 months. When I inquired, it turned out we had missed an appointment with the specialist centre, because they had gotten our address wrong. So the GP had to refer us again. When we were finally seen, we were assessed by a temporary registrar paediatrician, who tried to claim that speech delay was normal in bilingual kids even when I asserted it had been a problem before our household ever became bilingual. They tried to blame his behaviour on the fact that I'd separated from my partner and had re-married and the stresses that entailed. They wrote a little report mentioning impulsiveness and hyperactivity and left it for six months.

Six months later, at the follow-up visit, the entire medical staff at the centre seemed to have been replaced. Lather, rinse, repeat.
They did suggest I attend a parenting class. I know it is part of the support that ADHD children need, but at that point it just felt I was being branded a 'bad' parent. I have trained both as a primary teacher and a childminder and volunteered as a play leader for six years, so it felt very inappropriate. I couldn't even attend the class because I couldn't get childcare for the other kids! I did look up which system they were using, and got myself the book instead, which has proved invaluable: The incredible years. 

After three entirely unproductive visits, we made an official complaint that 2 years of follow-up had yielded absolutely nothing. I pointed out that he had been described as impulsive and hyperactive in each and every report, regardless of other circumstances, and that his behaviour was the same both at home and at school. Within weeks, we actually saw the consultant paediatrician and a child psychologist and soon we also got referred to a psychiatrist who was able to confirm the diagnosis of ADHD. Then we just had a few months to wait for Bambam's sixth birthday to start ADHD medication called Concerta.

The trick to getting this far was to use the internet to interpret symptoms, being careful to discriminate between hysterical misinformation and actually medically relevant data. Then figure out exactly what you want to achieve, check the NICE guidelines http://www.nice.org.uk/CG72 and quote them at your medical professionals until they listen. Do not give in. They try to avoid getting patients 'on their books' because they are understaffed and overworked. Although they are doctors, it's perversely not in their interest to diagnose. But it was in my interest and in Bambam's interest that we found out about his ADHD, because it is perfectly treatable with specialized behaviour management and medication. The earlier it is recognized, the better.

In future posts, I'll go into some parenting tricks I've learned over the years, the benefits of treating with medication, and how to deal with ADHD in school.