Naughty But Nice

It was great to see a central storyline in BBC’s popular Saturday night hospital drama Casualty involving a person with Cerebral Palsy. Well done to Cara Readle for showing a person with Cerebral Palsy with dilemmas. Not only that, but a person with Cerebral Palsy who was fun loving but fallible because she drove while over the drink drive limit. I’m not celebrating the criminal offence but I am celebrating the inclusivity involved. Disability does not always mean a halo!!! Long may it continue….

All You Need is a Cuddle

I heard an amazing article on BBC Radio Five Live’s Up All Night Programme tonight about Cuddle Volunteers in Chicago USA. These are specially trained hospital volunteers who undertake to give one to one physical contact to premature babies in the neonatal unit. This gives parents respite and the ability to return to work if their baby is still an inpatient after a number of months. Clinical studies have shown that premature babies are much more likely to survive and their overall physical and mental development improves markedly.

As an extremely premature baby in 1966, in an incubator in hospital for 6 months, subject to the best available care at the time, but subject to the lifelong trials and tribulations of cerebral palsy, I wish that this study was enacted all those years ago! It is a great improvement to neonatal care, and perhaps gives a special indefinable something to improve the life prospects of those impatient little ones

When Politics and Real Life Collide

It was heartbreaking this morning to hear of the death of Ivan Cameron, the six-year-old eldest son of Conservative Party Leader David Cameron. I do not think it is often that the business in the House of Commons is disrupted, but the Punch and Judy politics that usually take place on Wednesday’s Prime Minister’s Question Time were cancelled today, out of respect.

David Cameron has been a strong advocate of the National Health Service, due in no small part to his experience as a parent of a severely ill child. Ivan had Ohtahara syndrome – a very rare, life-limiting epileptic syndrome that occurs in childhood. That, along with Cerebral Palsy, meant that Ivan required 24 hour care, and often from his father at 2am in the morning.

It is hoped that the family will be comforted in their grief by the amount of good will messages sent to them today. I hope it will increase awareness of epilepsy and cerebral palsy amongst the population at large.

Tiny Tim vs Little Britain’s Andy – Deserving vs Undeserving Disability

Well, as 2008 closes and 2009 is almost upon us, at this time of year Dickens’ Christmas Carol is festive fare. Even a yet to be converted Ebeneezer Scrooge is moved and saddened when confronted with the imminent death of Tiny Tim. Here, disability is portrayed in an angelic light, Tiny Tim suffering without complaint.

Tiny Tim and his Father

True, this is a Victorian view of disability, where Tiny Tim and his family were the deserving poor. However, it seems that with current British legislation targeting those on disability benefits, the perception of the deserving vs. the undeserving disabled is not just historical, its very much alive and kicking.

The character of Andy in the comedy series ‘Little Britain’, a man who is a wheelchair user, deceiving his devoted carer because he can walk and does so, as soon as his carer Lou is looking away.

Andy and Lou

Andy’s character is perhaps the embodiment of the modern negative perception of disability – the undeserving disabled. Heavens, I hope that this growing perception is just my anxious nightmare rather than reality. We can live in hope…

Concentration and Assisting Death

Well, two of my most interesting subjects are back in the news.

There is an article in the journal Nature today which recommends the drug Ritalin as an aid to improving concentration and memory for those without Attention Deficit Hyperactivity Disorder (ADHD). As sometimes I lack both, perhaps I should take some after all

The other subject, assisted suicide has been raised by a member of the Scottish Parliament Margo MacDonald.

The Lothian MSP, who has Parkinson’s Disease, does not wish her own condition to be the centre of the debate, but is sure from the post she receives from her constituents that the legislation covering assisted death must be changed.

A Sad End…

I have been saddened by the news that Daniel James, 23 year old paraplegic, victim of a rugby accident, decided that his life was so bad that he persuaded his parents to take him to an assisted suicide clinic in Switzerland to end his life. This was after a number of suicide attempts had not worked.

It wasn’t through lack of support, it wasn’t through lack of friendship, it was through lack of will to go on in his paralysed state. He could have lived for many years, but refused to do so. He did not want to live in the prison his body had become, so reports say…

The assisted suicide legislation in Switzerland: “Swiss law does not consider suicide a crime or assisting suicide as complicity in a crime.” but there is growing concern there that many non-terminally ill patients are taking the step to end their own life, which many Swiss people did not vote for. I suppose they may be worried that these people are being pressured to end their own life (Baroness Warnock again and its no surprise she supports this! see my previous post)

Mr & Mrs James are now facing prosecution, and the debate goes on…

[polldaddy poll=1023553]

Tell me why you voted, if you want to leave a comment…

A Beautiful but Distracted Sequel

I was very interested to hear today on the news that the National Institute for Health and Clinical Excellence (NICE to you and me) is requesting that doctors are more careful when prescribing Ritalin for newly diagnosed cases of ADHD. It seems that this particular government agency has realised this reliance on Ritalin is too widespread among the medical profession – at last!!!! I wonder if they read my blog on the subject  

However, it’s advice that alternative therapies should be sought in all but the most severe cases is all well and good as long as the support is available out there. Given the sad history of so called Care in the Community in this country – willing but drastically under-resourced, we will have to reserve judgement for now. A number of parents have told me they only need to resort to the medication at school, because they have found strategies to work with their children with ADHD at weekends. 

Certainly there has been some worried parents in the media today thinking that the Ritalin treatment which has worked for their children will be withdrawn. Hopefully, there will be enough backup to support them – Ritalin or not. Perhaps it should be targeted at teachers too!!!

A Beautiful but Distracted Mind…

There was a story on the BBC news last week about Ritalin, the drug used to moderate the symptoms of Attention Deficit Hyperactivity Disorder. According to the BBC, and other learned sources, symptoms of ADHD range from poor concentration and extreme hyperactivity, to interrupting and intruding on other people and not being able to wait in queues (though this last is shared in my experience by many teenagers!  

Ritalin is an amphetamine (mild stimulant) which works on the central nervous system to improve concentration. Although it is licenced for the treatment of ADHD, it is still an amphetamine, an addictive class A drug. Anecdotal comments in the educational system in Swansea have cited examples of parents getting their sons (as boys are 3 times more likely to experience this condition) on Ritalin, only to sell the drug on the street to boost their income.

This form of treatment has been criticised because it can cause serious side-effects in some children, leaving them depressed, robotic, lethargic, or withdrawn. I remember watching the film A Beautiful Mind the story of the Nobel Prize Winning Mathematician John Nash, amazingly played by Russell Crowe. Although this was a completely different mental condition, schizophrenia, the effects of the medication on him seem to be remarkably similar to the side-effects experienced by some taking Ritalin for ADHD.

Nash decided not to take his drugs and to live with his hallucinations instead. This course of action may not be possible for many to completely abandon Ritalin, as they need the at least some of drug to be able to concentrate for study, at home and to be generally socially acceptable. I assessed a number of students with ADHD, and I do not think that they would have been able to sit in a room with me for 90 minutes, or indeed in lectures without the aid of the drug and even then it was a little bit of a struggle for one or two of them to keep concentration levels at their optimum.

As the BBC reported “The government’s drug watchdog ruled in 2000 that Ritalin should be prescribed on the NHS to children with serious hyperactivity problems. It is not licensed for people under the age of six, but doctors have prescribed it to children as young as 15 months. There is also concern that doctors are prescribing the drug without considering alternative treatments.”

Maybe there is a parallel here again with the treatment of schizophrenia, where there was, and perhaps is still, too much reliance on drug therapy for some clinicians and not enough investigation into alternative therapies. As more and more individuals are diagnosed with ADHD, shouldn’t lessons be learned and natural spirit not be completely wiped out by drug-induced control?

The Blue Genes Time Bomb

I’ve been in very reflective mode recently, with the anniversary of my mother’s death at age 41 releasing a number of memories, both quirky and sad…

I was distraught at 16, holding her on her last morning during a severe asthma attack, until I was moved out of the bedroom by the GP attempting resuscitation. My mother had contracted tuberculosis, a rarity in 1980, and because of asthma from her childhood, didn’t really have a hope of recovery. In her family, chronic asthma skipped a generation, passing from her grandmother to my mother. tick-tock, tick-tock… It is also present in a couple of my nieces and nephews, but with the hope of improved medication, they have a good hope of avoiding fatal asthma attacks.

I am now 42, a year older than my mother was, and yet on the morning of her death, a relative said that she thought that it would have been me to die before my mother. I suppose she had a bit of a point. I was born at 27 weeks, weighing less than 2 kg, given only 5 minutes to live and the almost inevitable cerebral palsy afterwards, due to the infancy of neonatal care in 1966. Follow that with meningitis as a toddler, Type  1 diabetes at 10, with all its hypoglycaemic comas and an accidental medical personnel-induced hyperglycaemic coma which sent me into intensive care 60% dehydrated, and doing a very good impression of an Egyptian mummy! tick-tock, tick-tock!

There is no doubt that the asthma gene eventually played a major role in the death of my mother. My development of type 1 diabetes, where my own immune system caused the disease. It destroyed the smallest, most delicate and, as research into the side effects of diabetes is now showing, one of the most important organs, the Islets of Langerhans within the pancreas, which produce insulin. tick-tock, tick-tock…

This consequence of this genetic destruction, with the visual, kidney, circulation, hearing, dementia, depression and other problems that we are told are in store for us if we don’t try to slow it down, is a genetic time bomb of nuclear proportions. tick-tock, tick-tock, tick-tock…. BANG

Roll on stem cell technology, our best help for genetic disarmament!!!

Mirror, Mirror in Others’ Faces…

I know there has been a great fuss recently about giving disabled children dolls with a disability so that they have a toy to identify with. But to be fair, the dolls must mirror a true image of the disability, otherwise these dolls will only reinforce the negative image held by some in society.

Parents with children with Down’s Syndrome have certainly reacted negatively to the concept, as it looks as if the dolls for their children’s condition are very stereotypical, and therefore quite negative – showing the worst aspects of the condition. Surely that is what the dolls should be counteracting? Having a doll should be a normal thing, but it can’t be if the disability is only a stereotype…

I think that it is fine for those disabled children that wish to have dolls with a disability, but I don’t think they should be a mandatory ‘gift’ from progressive professionals. Also, I hope that access isn’t restricted to the disabled alone, as I think it would be a useful tool for other young children who have limited knowledge of illness and disabilities.

I’m sure the debate will continue, and I will be very interested in how it progresses…