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

As diabetes is an increasing problem, not only in the UK but also in the rest of the world, there is going to be an interesting radio series on BBC World Service on 15th June. The first episode Diabetes: the Silent Killer is aired at 09:06am GMT and it is repeated a number of times throughout the day. The series is presented by Justin Webb, the BBC’s North American Editor, whose son has Type 1 diabetes. It is also available from the BBC World Service Website as a podcast.

Living in the USA, his son has the most up to date medical care for his condition, but the presenter examines the impact and possible future of Type 1 diabetes, and I would recommend it as a very good listen.

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.

I and many other people are outraged that parents want  Childrens’ BBC presenter Cerrie Burnell taken off air because she only has one arm and is “scaring” their kids. How criminal that she only has one arm!!!! How on earth are we going to get rid of prejudice if children are not given access to all sections of society through the media.

There is little enough representation of those of us who are “different” on these channels. How are children going to develop fair and balanced views if they are constantly exposed to the biggoted vieat home. Let’s hope that the children realise that there is not something seriously wrong with those disabled people who dare make themselves known, but with their parents for harbouring these horrible prejudices.

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…

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.

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…

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

There has been controversy recently about the free Concessionary Travel that Old Age Pensioners have been granted in England recently. Local Councils have been complaining that they have had to cut front line services to make up the shortfall in the Government grant to cover the service.

Now it is true that there are more Pensioners on the bus, but it could be argued that they are out and about getting exercise, meeting people and getting on with life. Surely they are at less risk of having to use the social services which may be subject to the cuts proposed. At a very basic level for instance, an individual needs exposure to the outdoors to produce vitamin D which is vital for bone health. An older person with good bone health is less likely to suffer fractures in the case of falls. Note that I did not say that a person needs exposure to the sun – because we don’t get a lot of that in Swansea.

So I think Local Government needs to be less short-sighted about its provision, given that a happy, healthy older generation will cost less in care in the long run.

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!!!

Lady Warnock has won great respect for her work in medical ethics, but she has certainly stirred up an awful hornet’s nest with her recent comments about the burden placed on society by Alzheimer’s patients. She said they have a duty to die, as they place too many demands on their carers.

It’s true that we have a funding crisis, and no one would wish to have dementia, but she is going too far here. Baroness Warnock is using her media access to advocate the awful course of eugenics. If the cared for person desperately wishes not to deteriorate and can make a living will, yes, then possibly they can ask for their life to be ended if they wish to not deteriorate beyond a certain level they themselves define. However – no one should make that decision for the person, especially if they are incapable of doing it themselves.

We all know that if decisions are taken for people with Alzheimer’s disease it won’t stop there, don’t we?!!!