Special Needs and Children in Scotland

Puberty Vids from the BBC

2005-08-05T13:45:00.000+01:00

Flash animations on puberty
These are just great and made me giggle. Why didn't they have things like this when I was at school?

Orthotic Shoes

2005-07-22T14:26:00.000+01:00

From the guideance (link to pdf) given by the Rehabilitation Technology Services Advisory Group (now there's a snappy title):

"2. Supply of Prescription Footwear

2.1 Two main criteria may be employed to justify the supply of prescription footwear
2.1.1 those patients who are unable to be acceptably fitted with standard footwear due to abnormal foot shape;
2.1.2 those patients for whom standard footwear cannot accommodate a prescribed orthotic device;
2.1.3 other requests will be individually assessed.

2.2 Non-ambulant light user patients or children will normally receive only one pair.

2.3 Ambulant patients will normally receive a duplicate issue of the first prescription."

So; if your child has a condition meaning that standard shoes are not suitable then they can only have one pair of shoes at a time. Did the people who wrote this guidance not meet any children? There are plenty of possible conditions that will leave you needing specialised footwear, but also leave you entirely capable of jumping into puddles. A relatively sedentary adult will qualify for two pairs, but a highly active child only for one. Yes, parents can buy an extra pair - but these shoes can cost well over £100 a pair.

Milk with your melatonin?

2005-07-19T19:06:00.000+01:00

Some background; in the UK melatonin is an unlicensed drug, meaning that it can only be acquired by prescription, and then only on a 'named patient' basis. However, the fact that it is used in children's sleep problems (especially in children with ASD or AD/HD) is becoming more widely known.

So in steps 'Night Time Milk'

All milk contains some melatonin, but Night Time milk has more than most because it is collected from the morning milking from a small number of Somerset dairy herds that have been specially selected to provide milk that is rich in melatonin.

Sleep expert Dr Chris Idzikowski comments "Melatonin is the brain's way of telling the body that it is night time. It helps to reduce the body temperature which is necessary for a good night's sleep. A bedtime drink that provides the brain and body with additional melatonin has a theoretical reason for aiding sleep."

Weirdly, this isn't as bizarre as it first sounds. There are a couple of studies on melatonin in cow's milk:
Diurnal rhythm of melatonin in young calves and intake of melatonin in milk
Diurnal rhythm of melatonin in bovine milk: pharmacokinetics of exogenous melatonin in lactating cows and goats.
Milking cows at the 'right' time will increase the amount of melatonin in the milk. (Incidentally, there's also melatonin in rat milk, but they're much harder to milk, and the marketing to get people to drink 'Night Time Rat Milk' would have to be fairly strenuous)

So far so good. But then we come to the amounts of melatonin in the milk. The first study gives an amount of 40 picograms per millilitre; the second gives a 'high' melatonin level of 26 picograms per millilitre (+/-7pg). Accosting a passing doctor I'm told that an 'average' dose for sleep problems in children (with obvious variations for size of child and so on) would be 3mg. Mathematics is not my strong suit, and I welcome corrections, but if we use the figure of 40pg/ml that would mean that a child would have to drink 75 litres of 'Night Time Milk' to get this dosage. At 91p per 750ml that would be £91 of milk.

Even if forcing a child to drink 75l of milk wasn't child abuse of itself, it wouldn't work as a sleep aid anyway: five minutes in bed and they'd be up to use the loo.

Aspergers and Armed Forces

2005-07-12T14:12:00.000+01:00

Something I've had to look up recently: does Aspergers bar you from serving in the armed forces? All the answers have come from coversations with the people on the relevant recruiting phone lines.

Army: Diagnosis of Aspergers is an automatic bar to service.
RAF: Ditto.
Navy: Diagnosis is not an automatic bar, but you would have to convince those at recruitment testing/medical that it would not affect your ability to do your job. Personally, I think that it would be hard for someone with AS to convince a Navy medic of this, but probably not impossible.

This, of course, tells you nothing about undiagnosed aspies in the forces.

Fighting Obesity the eco-way

2005-06-12T19:30:00.000+01:00

A great idea: involve overweight children in environmental projects as a way to get them to exercise. Declaration of competing interests: I am an overweight adult; I was an overweight child. I also hated sport with a passion. Projects to get children more active tend to focus on sport, without actually thinking about it; the children who like sport aren't the ones who are overweight. It's the ones who would do almost anything than get invloved in a game of football/netball who are overweight. There's this obsession with competitve sports as exercise, when those who are not already fit know that all that lies at the end of that is losing and being humiliated. Promote going out and doing environmental volunteering, going for walks, taking salsa classes; anything, please but more school sport!

More on alternative medicine...

2005-05-04T10:22:00.000+01:00

I just can't keep away from this subject can I? From the Guardian:

The latest research is a triumph for conventional medicine, because only its methodology enables us to say with any conviction that these treatments work and why. The reasons the new evidence provide in support of alternative treatments are precisely the same reasons for at least suspending judgment on countless others. That is why the sign outside the Royal London homoeopathic hospital is as bad for my blood pressure as meditation is good for it. The truth is that among the scientific community, almost everyone believes homeopathy not only doesn't work but cannot work. Yet the Royal London receives NHS funding. Why? Surely because the public demands it. This is doubly scandalous: the treatments don't work, and we give people the impression that they do by officially sanctioning them.

Nothing about the election tomorrow; as far as I can see, almost all the issues that concern children with special needs in Scotland are devolved issues.

Cannabis and Mental Health

2005-04-28T10:09:00.000+01:00

Young Minds on the subject of cannabis and mental health.

Cannabis use often comes wrapped up in a parcel where it’s hard to disentangle cause and effect because cannabis is often used by young people trying to manage psychological problems, as a form of self-medication. Nick Kerry a ‘substance misuse officer’ in a child and adolescent mental health team says, “those already suffering from mental health problems are the most likely to turn to cannabis to manage feelings. But the stuff they are trying to manage is also a factor in making them more at risk from the effects of the drug.” Dr Young agrees. “Cannabis can help manage social situations, and difficult feelings. But a significant proportion of users are susceptible because of a genetic tendency to psychosis or other mental health pressures.”

These would be the sort of grey areas that are totally missed in this run up to a general election.

2005-04-25T15:01:00.000+01:00

We must respond to our patients' trust with integrity. Let's do more soul-searching before we advise patients about untested therapies. Let's make sure we are not administering acupuncture needles or gingko to patients just because of market demands. We must insist that clinical trials test alternative approaches before we embrace them. We would not place our patients on methotrexate before learning that it was safe and effective. Let's not give them magnetic treatments without the same standard. That's not "alternative medicine,” or even "traditional medicine”; it's just good medicine.

And, to balance this, something on conventional medicine:

Doctors trust articles in journals and rely on the experts whose names adorn them. If they do not know the origin of those articles, then the system needs reforming to eliminate both ghost and guest authors, and to ensure that marketing pieces cannot masquerade as academic articles.

This is relevant to AD/HD especially. You can get oodles of glossy leaflets for patients and their parents on AD/HD, with vast amounts of information and strategies, worksheets to fill in, cards to cut out... all produced by the same drug companies that make the major treatments of AD/HD. And they all promote their drugs in them. Do you get the same literature for autism? No, because it's not treated through drug therapy. It makes me very edgy; if possible I try and source information for patients and parents that comes from charities, like ADDISS, but this problem still persists there. Their best leaflet is one on 'Family Stress Points' that I regularly hand out. If you take that leaflet and look very hard at the bottom: 'This leaflet was produced with the help of an educational grant from Eli Lilly'. Eli Lilly are at the moment in the middle of a hefty marketing campaign for Strattera, their new non-stimulant AD/HD drug. And this leaflet coincides quite well with that.

Nappies

2005-04-14T13:44:00.000+01:00

It only takes bloody national news coverage to get the really essential things for children with special needs sorted out:
http://news.bbc.co.uk/1/hi/scotland/4442801.stm

This is the sort of crap (literally) that parents have to put up with.
NHS 'Aha! We can save money on nappies! We will issue only one brand of cheap nappies, and not many of them.'
Parents go 'But they don't fit! What's the bloody use of a nappy that doesn't fit!'
Etc etc etc.

Sometimes you just need a little rant.

Terri Schaivo

2005-04-04T15:51:00.000+01:00

There may well be an obligation for anyone with a medical blog mention this case. Ragged Edge has an interesting view from the disability rights perspective.

However, when you really get down to it, strip the case of the medical debates as to the exact nature of her condition, the warped family relationships, and you get down to one single question: when is a life not worth living? Death has been taken out of the hands of 'nature' to some extent, and given to humanity, be the decision ultimately taken by doctors, lawyers, or family.

Turn the question on its head: what is a life worth living? What do we need to provide to create a 'good life'? We're into philosophy territory here, but it presents a more positive view. Mourn the dead, but concentrate on the living: what we can do, as people, as society to make lives worth living. I hope all those who have stood in vigil, either for Terri, or for the late Pope will remember this after they leave their vigils.

Blog roundups

2005-03-14T11:59:00.000Z

Tangled Bank is a weekly roundup of good science writing in blogs.

Grand Rounds is much the same for Medical blogs.

Sceptics Circle draws together sceptical writing.

As with much in blogsphere these is a distinctly US slant to these (and obviously a huge English language bias), but there's still much to interest.

Veganism, diet and other things

2005-03-14T10:39:00.000Z

Yet more on the how to feed your children debate. Vegan diets not good for children. The Vegan Society's Current front page offers a direct riposte to this. From the Guardian

However, the British Dietetic Association said the study looked at impoverished, rural children with a poor background diet low in essential nutrients such as zinc, B12 and iron, and its findings were not applicable to vegan children in the developed world.

"There is no evidence that our vegan and vegetarian children in this country suffer impaired development," a spokeswoman for the association said.

She said Prof Allen's assertion that some nutrients could only be obtained from animal sources was incorrect. Even vitamin B12, which is only found in animal products, was used to fortify vegan alternatives such as Marmite.

Vegetarians could obtain sufficient calcium from sesame seeds, nuts and fortified soya milk, and iron from dried fruit and fortified breakfast cereals, the spokeswoman added.

An article from the Observer gives a quick rundown of the likely deficiencies in a vegandiet, and how to get round them; my favourite part is this:

Vegans are prone to iron deficiency, and may need to eat such foods rich in this mineral, including cocoa, prunes, raisins, seeds and nuts.

So vegans have carte blanche on the chocolate-covered raisins and peanuts. Sounds like good news to me.

The polticisation of food shows no sign of abating, but I suppose since the days of 'bread and circuses' it has always been so. The problem is the guilt and the conflicting information that is produced from so many angles make any kind of really rational choice exceedingly difficult. Add in children and you have all the ingredients for a 'moral panic'; vegan children are now a focus for our anxieties about food in general.

A Plumbing Parable

2005-02-03T15:21:00.000Z

This is a very good story, about alternative medical approaches.

You may guess that I don't have much time for alternative and complementary therapies. This is something of an overstatement; the old adage of 'do what thou wilt, harm none', holds in this instance. If something is not harming a patient, it is not causing distress (financial, emtional or whatever) to them or their friends and family, then there would be no reason to stop them. The placebo effect, while still not fully explained, seems to be powerful, so if a person believes that something is working, then it may well work. Then again, we now seem to have the evil 'Nocebo' effect, lurking in the wings.

Nutrition

2005-01-18T13:00:00.000Z

Nutrition these days seems to be a much contested subject. Beyond 'eat more fruit and vegetables', which no-one seems to be seriously challenging (and is, of course, the most difficult to persuade children to do).

There seems to be much contradictory information about; this article in the Guardian sums up some of what's going on in the food industry. Then, of course, there's the 'Polymeal', which claims to be able to put years on your life (I wonder if anyone has come up with the antithesis of the Polymeal, the diet guaranteed to take years off).

The people at Food and Behaviour Research can be very convincing when arguing their case that what you eat and how you act are intimately linked. However, they are very strident in recommending fish and fish oils for their EPA and DHA without really taking into account the amount of mercury contained in a lot of fish stocks. (Conflict of interest declaration: I'm a vegetarian, and I generally find the idea of people encouraging increased fish consumption at the point when fish stocks around the world are collapsing to be rather short-termist. I take linseed oil, and hope that my body's rather inefficient conversion system produces at least a reasonable amount of EPA and DHA).

This is a rather wooly post about nutrition, mainly because the main points are debated so much. From the large agribusiness corporations to the Soil Association, food is an area where everyone approaches with an agenda. It is incredibly difficult for parents to make really informed decisions about feeding their children; especially in the cases of AD/HD and Autism where diet has been suggested as a way of allieviating symptoms. Dieticians and scientists can't even agree, so the only thing left to do is to make up your own mind as best you can.

Sleep Scotland

2005-01-14T14:38:00.000Z

Sleep Scotland do indeed have a website, though it seems nigh on invisible to seach engines:www.sleepscotland.org

I was wrong about their helpline: it opens at 9.30 in the morning and stays open until 11.30 at night on weekdays: 0845 6031212

Thoughts on the Additional Support for Learning Act

2005-01-12T20:28:00.000Z

In general this Act seems to be a positive step forwards; certainly if it carries out the promise at the beginning of the Code of Practice,

The Act aims to ensure that all children and young people ar provided with the necessary support to help them work towards achieving their full potential. It also promotes collaborative working among those supporting children and young people.

There are lots of similar well-intentioned phrases, on integreation, multi-agency working, holistic views and so on.

‘Special Educational Needs’ have been replaced with ‘Additional Support Needs’, a much broader definition, which can cover needs arising because of, for example, family circumstances. In a lot of schools this support system has been in practical use for some time now, so how much change on the ground this will create is debatable (though I’m sure that teachers would say ‘more paperwork’).

The provision of mediation services is also new to this act, though how much they will actually be used remains to be seen. The Key Worker system, which has already been adopted in some areas, is also part of the Act, which hopefully would lead to better communication.

There are issues that need to be resolved though. For example, at the moment it seems that the Act has provisions that are legally binding on Education Authorities, but not on NHS Boards. Since material about a child’s additional needs may have to come from Health sources this may be a problem, for example if they are not bound by the 12 week time limit for preparing a CSP.

Also, there are worries about the replacement of the Record of Needs with the Co-ordinated Support Plan. Not all children who have a RoN will be eligable for a CSP, which means that the legal protection that a RoN gave the provision of services in school will disappear for those children not getting a CSP. This is coupled with the fact that the Act means a transition to a needs-based approach to additional needs, but without the money needed to make this transition a reality. So there are very real concerns that while some children may benefit and get extra help in school some children may lose the help that they have at the moment. The Act includes a statement that Education Boards do not have to make provision for children that results in ‘unreasonable expenditure’, which is judged by the local authority itself. The fact that each child is considered individually, so similar circumstances in two children may result in once getting a CSP and another not, may heighten parental feelings of an iniquitous system.

In general, whether or not this ‘works’ will probably only become clear when it is implemented; it’s likely that the real problems (and positive effects) are ones that people won’t be aware of until they put it into practice. I tend to be quite negative in my analysis of things like this, and I’m more likely to have missed good points than bad points.

Child Policy Updates

2005-01-10T15:00:00.000Z

4 Nations Child Policy Network offer e-mail bulletins on issues relating to child policy, and you can select which area/s of the UK you want to be updated on.

Self-esteem

2005-01-10T10:51:00.000Z

I think that everyone these days is familiar with the maxim that large numbers of problems encountered by children and young people today are the result of low self-esteem. However, this article in the Scientific American challenges that view. I've read an article before (I now can't remember where - one of the reasons for starting this blog) which suggested that of the behaviours most commonly associated with low self-esteem the only teenage pregnancy and self-harm seemed directly related to low self-esteem. Given that the above article suggests that unwanted pregnancies served to lower self-esteem this might be cause rather than effect. I'm sure that there have also been suggestions (again, I can't recall where at the moment) that very high self-esteem can also have negative consequences, for example in social relationships where the person with high self-esteem always assumes themselves to be the superior.

The authors do conclude though:

In the course of our literature review, we found some indications that self-esteem is a helpful attribute. It improves persistence in the face of failure. And individuals with high self-esteem sometimes perform better in groups than do those with low self-esteem. Also, a poor self-image is a risk factor for certain eating disorders, especially bulimia--a connection one of us (Vohs) and her colleagues documented in 1999. Other effects are harder to demonstrate with objective evidence, although we are inclined to accept the subjective evidence that self-esteem goes hand in hand with happiness.

Though I personally find that discovering the existence of the word floccinaucinihilipilification, 'the action or habit of estimating as worthless' has probably increased my happiness for today.

I've also been reading the Autumn Newsletter of the Association of Child Psychology and Psychiatry (passed on by someone who is a member), which has a summary of a paper called 'Time Trends in Adolescent Mental Health'(in the Journal of Child Psychology and Psychiatry, free abstract). This seems to show increases in both emotional and conduct problems in adolescence, and that these problems are real, not a change in how they are reported. The most interesting statement is:

There were parallel increases in mental health problems for adolescents from both intact and divorced families, and for children from all social groups.

This seems to discourage any kind of 'easy answers' as to why this increase has come about. Given modern lifestyles there are huge numbers of possible culprits, and the liklihood is that there will be no simple cause, but rather a multi-faceted explanation.

To sleep, perchance to dream

2005-01-08T19:43:00.000Z

This article has some very interesting things to say about sleep. People who give advice on sleep hygiene might want to take more account of the effects of artificial light than they do at the moment, though the advice for people to get out in the sunshine as soon as they get up isn't really practical for the parts of Scotland that don't get light in winter until after eight in the morning. Also, it doesn't have anything to say about conditions (such as autism) which seem to have effects on sleep patterns.

Sleep Scotland is the major charity working in this area in Scotland: they don't have a website that I can find, but Charities Direct have contact details. The charity also has a helpline that is only manned at night (ie when you can't get them to sleep), but since I'm blogging from home I don't have the number.

First Work-Based Blog Post

2005-01-07T06:58:00.000Z

This is my first post in this blog, so to make the place look less bleak and bare I'll put in some general links.

Disability Now Very good general disability magazine. Read 'Candid Kate' if nothing else!

Ragged Edge is a bit more strident in its language. Cal Montgomery's articles are great, especially this one.

I'd always encounted autism from the perspective of the parents of autistic children, so the perspectives of people with autism themselves (or autistics, or autists; the preferred description varies) provide a useful corrective to this. Autistics.org is one such place; the Institute for the Neurologically Typical made me laugh at my desk, and I'm passing it round everyone I know who works in the field. Michelle Dawson writes very eloquently.
(I'm not going to get into any arguments as to whether or not people who describe themselves as autistic on the web are or are not)

SciScoop is a very useful science blog, which has health related links.

Contact a Family is the first stop for anyone looking for a support group or association for a child with a particular disability. This list of UK Self-Help Groups also has some useful contacts.

Right, I think I'm going to stop there - I've used 'useful' twice in as many sentences, which I think is a sign that a post is starting to go in circles.