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Magical therapy transforming the lives of disabled children

5 Sep
Sam practicises his vanashing ball trick at Breathe Magic camp

Sam Loveridge with Breathe Magic therapist Emma Cahill. Photo by Gabriel Larmour.

Last week I was privileged to witness an innovative health project which is transforming the lives of disabled children. Unlike your average NHS experience however, there’s wasn’t a uniform in sight or a whiff of surgical spirit and the practitioners’ tools included sponge balls, playing cards, seemingly bottomless Mary Poppins’ bags and spinning tops.

Breathe Magic is the result of an inspiring collaboration between Magic Circle magicians and occupational therapists and comprises an intensive programme of therapy – packaged as a two-week magic camp. The intervention, delivered by Breathe Arts Health Research, has been designed to improve the motor skills of children with hemiplegia (a weakness or loss of control affecting one side of the body). Each magic trick taught has been carefully selected to incorporate a series of precise exercises that help develop essential movements – such as reaching out the arm, rotating the hand, or picking up a small item using the thumb and forefinger.

The impact has been astonishing, with many of the children being able to do every-day tasks for themselves for the very first time (and using both hands), such as getting dressed, or cutting up their own food. The testimonials of the children who have taken part in Breathe Magic show that the programme not only increases children’s motor skills and independence, but also their communications skills, self-confidence and self-esteem – which makes a big difference to those who have had problems socialising or worse still, have suffered bullying at school.

The strong anecdotal evidence is backed by a formal clinical evaluation which showed that after taking part in the camp participants could do more than 85% or everyday tasks independently, compared with only 25% before the camp.
A total of twenty one children participated in two Breathe Magic camps this summer and they will now attend monthly clubs (for six months) to maintain their skills and motivation. Funding from NHS Lambeth Clinical Commissioning Group enabled children from Lambeth and Southwark to take part in the 10-day camp in London and an earlier camp at the Stepping Stones School in Surrey was made possible with support from the COINS Foundation and parental contributions. Data from these camps will inform the ongoing clinical and economic evaluation.

The initiative initially received funding from Guy’s and St Thomas’ Charity to test the effectiveness of embedding magic into therapy for children with hemiplegia. Breathe Arts Health Research is now tailoring the intervention for other patient groups, including a programme for young people with mental health at Great Ormond Street Hospital and a project for people who have had a stroke is in the pipeline.

The success of the approach is all down to the fact that the focus is on having fun and learning magic. The participants are so engrossed in learning tricks they are distracted from the frustration of practising repetitive therapeutic exercises.

“The children are just so determined. They are supposed to practice their tricks for 20 minutes every evening, but instead, they’re practicing for up to an hour,” said Richard McDougall, one of the Magic Circle magicians involved with the project. “Seeing the satisfaction and pride on their faces when they master a new trick, or perform a task on their ‘wish list’, is such a privilege,” he added.

Shanakay with magician Richard McDougall. Photo by Gabriel Larmour.

Shanakay with magician Richard McDougall. Photo by Gabriel Larmour.

The enthusiasm of the Breathe Magic team is infectious and the energy and excitement of the children at the camp is palpable. The ethos of the programme is about empowerment, so parents are reminded not to help with taking off coats when they arrive in the morning and children are encouraged to cut up their food using both hands at lunch time. Each day brings with it a moment of celebration when a child accomplishes a new task for the first time, be that opening out their fingers from a clenched fist, or doing up their shoe-laces on their own.

Elspeth Burnett’s Mum, Seonaid, told me: “It’s been a really pivotal moment in Elspeth’s life. When Elspeth was very young we were advised that after the age of seven her ability to increase the functionality of her affected hand would be greatly diminished; but here she is, at eight, after just 10 days of Breathe Magic and she’s pushing herself to do things now that we thought were beyond her capability.”

The final performance of the London camp, in the hallowed surrounding of the Magic Circle, was inevitably an emotional event. The culmination of two weeks’ tireless practice showcased before an audience of proud family and friends. An uplifting speech by patron Bethy Woodward, the award winning Paralympic athlete, about her own experience of learning to embrace her hemiplegia and I am sorely regretting wearing mascara.

As well as an impressive array of tricks, the young performers also dazzled the audience with their comic timing and stage presence. By the time each of the children have been awarded their certificates, and are holding them proudly on the stage (with both hands, of course), I am a blubbing wreck.

But the magic of the experience promises to continue well after these children go home. 11 year old Sam Loveridge has thrown away his hand splint since attending the Breathe Magic camp in Surrey, his Mum, Jayne, says he’s like a ‘brand new boy’, and his friends have been asked not to help him tie his shoe-laces anymore.

One only hopes that this life-changing intervention receives further investment from other NHS Clinical Commissioning Groups to ensure that more children across the country can benefit.

Related links:

Breathe Arts Health Research

ITV London Tonight Lambeth Children Glimpse Magic Circle


Turning 40 – What’s it all about Alfie?

20 Jul

40th birthday

It seems I’m in good company – recent celebrities to hit the big 4.0. include Heidi Klum, Gwen Stefani, and Jennifer Aniston; and what a fine stable of fillies they are too. Back in the real world, I know I need to put some effort into getting into shape; my excuse of post-baby muffin top some two and half years after giving birth is stretching it a bit.

Of course, keeping fit and healthy isn’t driven by vanity alone. (Although I’d be lying if I said I didn’t care about my appearance. Then again, life’s too short to spend time worrying about the circumference of your thighs). It’s more that I’m daunted by the fact that as an older mother I’ve got a heck of a lot of running around ahead of me in my 50s and, eek, 60s.

But what are my long term health prospects (assuming I don’t get run over by a bus, or more likely a tractor, here in rural France)? Well, the UK average life expectancy for women is 82 years, but of course old age is likely to bring with it a variety of ailments, typically osteoporosis, arthritis or heaven forbid, dementia. That’s assuming one of the five big killers: heart disease, stroke, cancer, lung and liver disease (which account for more than 150,000 deaths a year among under-75s in England) don’t get me first.  As such, a healthy living regime of a sensible (preferably Mediterranean) diet, regular exercise and daily flossing is a must – it’s not exactly rocket science. As long as I can still indulge in a cheeky vino a few times a week and the occasional devilish dessert, I think it’s a reasonable ask.

But my physical decrepitude is not the only thing worrying me about entering the dreaded mid-life phase. What do the next 40 years hold? How can I live a happy, healthy and fulfilled life knowing what I know now: that ‘the best laid plans [of mice and men] go oft astray’?

Financially, I’m neither destitute nor financially buoyant, but with no mortgage and little savings, a ‘secure’ future seems like an abstract concept. Currently living with my mother and venturing into the world of self-employment, I am undoubtedly at an interesting crossroad in life – but which direction it will ultimately take, I just don’t know. A full time job may well be necessary (and practically, more possible) when my daughter begins statutory education, but the astronomical cost of paying somebody to look after my child whilst I work full time seems nonsensical when there’s an alternative to be explored. And with 1.52 million people claiming job seekers allowance in the UK currently, setting myself up as a sole trader until the economy improves is probably not a bad option. In addition, the process is sure to be a valuable, if not personally fulfilling, learning curve.

On a more philosophical level: What’s it all about Alfie? Really, what should I be doing to ensure that my middle years make for a ‘good life’. How do I ensure that I meet my own need for friendship and love, while retaining my re-established sense of self? When I’ve provided a roof over my head and food on the table, how do I go about meeting that burning desire to see more of the world and feel I am making my mark (remember Maslow’s Hierarchy of Needs from school?). I don’t know the answers to these questions, but I do know that money isn’t necessarily the route to achieving these simple goals (although boy, can it help!).

Although I’m far from being a wise old crone yet,  the most valuable lessons about life, I’ve learnt thus far are:

don’t sweat the small stuff;

be kind to yourself;

true love is a ‘doing’ word;

and laugh, sing and dance at every opportunity

So, I’ll try my best to eat my five a day, while working towards a secure future and looking after those I love. I’ll also be celebrating entering my 5th decade by doing some unashamed ‘mum’ dancing with a few friends, and looking forward to another 40 years filled with meeting new people, seeing the world and creating more happy memories, because, although it’s a cliché : life really isn’t a dress rehearsal.

Related links:

European men lag behind in life expectancy

ONS – Measuring National Well-being – Older people and loneliness, 2013

Unhealthy Britain: nation’s five big killers

Maslow’s hierarchy of needs

Gingerbread – Campaigning for single parent families

What’s it all about Alfie, song Lyrics

E-cigarettes – just what the doctor ordered

14 Jun
E-cigarettes may help you to stub it out

E-cigarettes may help you to stub it out

News that the Medicines and Healthcare Products Regulatory Agency will licence e-cigarettes as a medicine by 2016 (when new European tobacco laws come into force) has been widely reported this week. The directive, which will encompass all novel nicotine replacement products, reflects a commitment to ensuring quality and effectiveness.

The premise of e-cigarettes is that they allow people to carry on smoking without ingesting the horrible toxins which are known to be responsible for cancer. Given that around 100,000 people a year die of smoking-related diseases, the availability of e-cigarettes to help people wean themselves off the odious little cancer sticks must be a positive move.

An Action on Smoking and Health survey has revealed that 13% of smokers in the UK use e-cigarettes and they estimate that as many as 400,000 people have replaced smoking with puffing on an e-cigarette. The British Medical Association has tentatively welcomed the advent of e-cigarettes but calls for greater evidence of the safety and efficacy of the devices. Similarly, the National Institute for Clinical Excellence’s draft consultation paper on tobacco reduction highlights the lack of evidence around the long-term safety of e-cigarettes.

The reason that e-cigarettes are growing in popularity is, presumably, because they allow the smoker to enjoy the act of smoking without the associated health risks.

You see, smoking addiction is not just a physical craving, it has cognitive (I see smokers therefore I must smoke), emotional (I’m happy/ stressed) and social (let’s all be mates and smoke together) triggers.

I know this as back in the day I liked nothing better than kicking back after a hard day at work with a glass of chilled chardonnay and a fag. I finally stopped smoking with the introduction of the ban. Nothing’s that good to have to stand outside in the drizzle and cold to ‘enjoy’. Of course I relapse from time to time, usually as a result of a boozy evening out (a rarity since becoming a Mum).

But the cynic in me wonders if the manufacturers of e-cigarettes aren’t just trying to cash in on people’s smoking addiction – as nice as the people at NJOY and ahem, Marlboro are, I’m sure they don’t really have the world’s health on their conscience.

Furthermore, in Paris, apparently numerous bars are promoting the sale of e-cigarettes in various enticing colours and flavours. Now I’m no smoking cessation expert, but I would think that one of the first challenges in giving up smoking is breaking the association between holding a short stick in your hand and having an alcoholic drink…

In short, I don’t have a problem with e-cigarettes for those who need a temporary crutch to help beat their cravings. What I do take exception to is flagrantly encouraging the act of ‘smoking’ in bars and restaurants (and even on public transport). It somehow seems to go against all the progress made to reduce the visibility of smoking in public places.

I certainly hope that future generations – not least my own daughter – don’t feel the need to give smoking (electronic or otherwise) a try to be ‘in’ with the ‘in crowd‘. We’ve come so far with the smoking ban, it seems a shame to start making the act of puffing on a device masquerading as a cigarette acceptable.

Related links:

E-cigarettes face new restrictions

E-cigarettes are in vogue and at crossroads

ASH briefings – e cigarettes

BMA website – Tobacco / E-cigarettes

What’s the etiquette with electronic cigarettes?

Image credit: Copyright Piotr Marcinski /     Title: Tobacco addiction metaphor

Getting to grips with fibromyalgia

9 May
Mum and guide high up in the Atlas Mountains

Mum and guide high up in the Atlas Mountains

The term multi-tasking was invented for my Mum. Granted it’s a slow start in the morning, but after a couple of mugs of Yorkshire Tea she’s like a whirling dervish. An average morning might involve mowing the lawn, throwing a casserole in the oven, doing a pile of ironing and checking her emails . Nothing that remarkable you might think for someone who has raised four kids and run a successful business – except she is in constant pain with a condition known as fibromyalgia.

Fibromyalgia is the term for a group of symptoms including intense chronic muscle pain, fatigue, headaches, sleeping problems, joint pain, numbness and tingling, restlessness in the legs (particularly at night), irritable bowel syndrome, problems with memory and concentration, sensitivity to cold, bladder complications, depression and a swelling sensation of the hands. With fibromyalgia the soft muscles and tissues around the joints hurt, as opposed to arthritis, which is caused by the immune system attacking the joints. The pain is inconsistent – you may hurt in one place one day and not the next. The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. Most people with fibromyalgia have sleep problems – either struggling to get to sleep, or not getting the deep restorative sleep needed.

The cause of fibromyalgia isn’t known, but it’s almost certainly something to do with disturbed pain messages from the brain. There isn’t a cure, or a one size fits all treatment for fibromyalgia, but there are a range of medications available which can alleviate the main symptoms of muscle pain, anxiety and sleeplessness. Like many long-term conditions, non medical approaches can provide relief such as warm baths, or applying cold packs to ease areas of pain, gentle exercise and complementary therapies.

I’m rather ashamed to admit that I’ve never really looked into fibromyalgia until now; not least because Mum always seemed to have it under control and never complained about the problem. This week I managed to sit her down for an hour in her busy schedule and found out about how it has affected her life…

Ten years ago, when the symptoms of fibromyalgia first reared their ugly head, the prospect of living an active and fulfilling life in her mid 60’s was hanging in the balance. Even sitting in the same position for too long was unbearable and activities such as knitting and playing the guitar were too painful. Despite being very understanding our family GP was flummoxed. Pain killers had little effect and a brief period on a drug (now prescribed for epilepsy) rendered her unable to string a sentence together.

It wasn’t ‘til she moved to France, a year later, that the term fibromyalgia was mooted and thanks to a referral to a rheumatologist who undertook a battery of tests – MRI scans, blood tests, allergies – the condition was diagnosed. By this stage she wasn’t driving as the pain in her shins was just too painful to control the pedals and she was often in tears due to the pain in her lower back and shoulders. The fear of ending up in a wheelchair was also making her even more anxious and depressed.

An aggressive cocktail of eight drugs was prescribed to tackle her symptoms and after three months the dosage was reduced. Since then she has continued to take three medications to relax the painful muscles, reduce anxiety and aid a restful sleep.  She also knows to listen to her body and moderate her activity accordingly. She’s learnt the hard way that overdoing things will result in excruciating pain the next day, and forgetting to take medication is just not an option. She swears by swimming, gentle walking and not doing a repetitive activity for more than 20 minutes – hence the multi tasking.

Crucially, a positive attitude has helped her get through some really tough days and she claims that she’s never let fibromyalgia stop her doing anything (although I’ve seen her crash and burn a few times). To her credit, since being diagnosed she’s scaled the Atlas mountains in Morocco, sewn an intricate lace wedding dress and sang lead vocals and played guitar in a rock band. My Mum’s just far too busy to let fibromyalgia get in the way of life! Which brings to mind the hilarious French and Saunders sketch of the two ladies bemoaning the fact that a concerned relative called an ambulance when they were unconscious. On a more serious note, I wasn’t at all surprised to hear that people with A1 (high achieving) personalities are more prone to fibromyalgia than the rest of us mere mortals.

The bigger picture is that fibromyalgia affects nearly 1 in 20 people worldwide. In England and Wales, there could be up to 1.76 million adults with the condition.

Anecdotally at least, it seems that awareness of fibromyalgia in primary care was pretty poor a decade ago, but my Mum concedes that as a temporary resident in the UK in recent years, doctors have been more ‘au fait’ with the condition and the medication she is taking.

My fear is that recognition of fibromyalgia by the medical profession is still patchy. I recently spoke to a man whose wife was convinced she had fibromyalgia, but her GP refused to believe otherwise and continued to treat her for depression. She may well have been suffering from depression of course, but which came first, the chicken or the egg?

Fibromyalgia Association UK are doing some fantastic work providing information and support networks for people with fibromyalgia and anyone who feels their GP needs educating can request that a medical information booklet is despatched to them.

For my part, I hope that my Mum’s story provides solace to anyone who’s just been diagnosed with fibromyalgia, or indeed any long-term condition. So please do share this post with anyone who might be interested and let me know if you’ve had a similar experience. I’d love to hear from you.

Related links:

NHS Choices – Fibromyalgia

Dr Kevin White, MD, PhD, author of Breaking Thru the Fibro Fog

How challenging misconceptions could save lives

19 Apr

79082-20130419 jab image

They said, “If you teazle
A sneezle
Or wheezle,
A measle
May easily grow.
But humour or pleazle
The wheezle
Or sneezle,
The measle
Will certainly go.”

An extract from ‘Sneezles’ by A A Milne

A A Milne died in 1956, seven years before the introduction of the measles vaccination. In 1988 the MMR (measles, mumps and rubella) vaccine was introduced, to protect against three significant childhood diseases in a single combined vaccination. A subsequent booster jab was found to provide nearly 100% protection.

A decade later the MMR vaccine came under close scrutiny with the publication of the findings of a small study of 12 children, which revealed a potential link between the MMR vaccination and autism and bowel disorders. The scientist responsible for this controversial research, Dr Andrew Wakefield, published an article in The Lancet recommending that the MMR vaccines be administered separately to avoid any risk.  With a group of impassioned parents of autistic children championing his theory, the story could not fail to make the headlines.

Since then, Wakefield’s claims have been discredited by subsequent research studies, but the impact of his work on the public’s consciousness has been far reaching. Only this week, the news of a measles epidemic in south Wales affecting over 750 children (those aged between 10-18 worst hit), has been top of the health news agenda.

Although Wakefield’s credibility has subsequently fallen on stony ground, the Welsh outbreak reminds us that efforts to allay people’s concerns about MMR have been insufficient.

For many parents, who perhaps recalled the thalidomide scandal, the persuasive testimonials (backed by a report in a serious academic journal), were sufficient to convince them that the MMR vaccine posed a greater risk, than protection for their offspring. In reality an astonishing 16 youngsters died of measles the year before MMR was introduced.

The NICE target is for 95% of the population to be immunised to gain ‘herd protection’, but the measles statistics speak for themselves, with over 2000 cases last year – four times the number of cases than in 1998, when Wakefield’s findings were first published.

In Wales the finger of blame is wagging at the South Wales Evening Post for reporting the concerns of parents back in the late ‘90s. But this does rather smack of shooting the messenger and potentially alienates an important ally in the war against inoculation avoidance that needs to be fought.

A programme of emergency clinics is now underway in south Wales, but in addition, it is now expedient to address the misconceptions about the risks of the combined MMR vaccine, as well as general ignorance and apathy towards childhood inoculations on a national scale.

In short, those delivering public health information (now under local authority control), have a responsibility to get the vaccination gospel out to the masses. This will be no mean feat: Dr Google cuts more sway with your average Joe Public than their local GP. Add into the equation differences between rural and urban populations, transient, and multi ethnic communities and you begin to comprehend the complexity of the PR task in hand – this isn’t going to be as simple as putting out a Department of Health press release

As with any successful communications campaign, propaganda alone will not cut the mustard. A thorough understanding of audience and current perceptions, effective communications channels and influencers needs to be mapped out. Consistent messaging needs to be disseminated across a comprehensive network of health visitors, nurseries, childminders and schools to ensure that no-one slips through the net.

Crucially, the healthcare professionals interacting with parents every day need to be ‘on message’. How many organisations forget to adequately engage their staff before going ‘public’?

Competing priorities, budgets and bureaucracy will have to be negotiated to get the right resources in place; but doing nothing may result in the newspapers having a fresh headline – the death of a child who could have been protected with a simple jab.

Photo courtesy of David Castillo Dominici.

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