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INSIDE HEALTH – Programme 6.

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TX:Ìý 06.02.18Ìý 2100–2130

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PRESENTER:Ìý MARK PORTER

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PRODUCER:Ìý FIONA HILL

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Porter

Hello.Ìý Today, implantable defibrillators –Ìý the latest generation of smart pacemakers that can shock your heart back into a normal rhythm. ÌýBut what’s it like when they go off?

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Clip

You get a terrific punch in the chest and you get a bright flash of yellow light in your eyes and you wonder what on earth’s happened but believe you me you’re very lucky that it hasn’t happened to you.

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Porter

And drug addiction – how do addicts recover from their habit.

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Clip

What we know about who does make it particularly important are things about social networks and the transitioning from excluded networks of fellow addicts and drinkers to pro-social networks is a massive thing.Ìý Essentially, it’s the contagion of hope that’s at the absolute heart of the recovery process.

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Porter

But before that, a blast from the past – rickets. ÌýJust the mention of the word conjures up images of Dickensian scenes of deprived children with bowed legs. ÌýHowever, despite being eradicated after the Second World War, The English disease – as rickets has long been known – is back.

It affects growing children and results from vitamin D and/or calcium deficiency preventing proper bone growth. ÌýBut it is not just about the bones – rickets is also associated with seizures and heart problems, and at least two children in the UK have died from the condition in the last couple of years. ÌýAnd it’s completely preventable.

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Jacobs

How’s he doing?

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Zana

He’s okay.

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Jacobs

Good.

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Porter

At the Royal National Orthopaedic Hospital in Stanmore paediatrician Dr Benjamin Jacobs is checking a two-year-old boy diagnosed with rickets six months ago. ÌýHis mother, Zana, knew something wasn’t right.

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Zana

I noticed his legs were bending, they were quite bowy and they weren’t getting any better.Ìý As he kept on walking they weren’t straightening up, his left one was bending inwards, his left foot.Ìý So, I thought something’s definitely wrong.

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Jacobs

And since you started given the Vitamin D has it had any effect?

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Zana

Yeah, there have been a lot of improvements, yeah.Ìý I mean they’re not completely straight but I don’t feel like it’s getting worse, I feel like it’s getting better.

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Jacobs

Can I see his legs?Ìý I’d like to see how straight they are now.Ìý So, I agree his legs are not completely straight yet but they are certainly better than they were six months ago.

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Porter

Dr Jacobs shows me the x-rays of the toddler’s legs which, as well the characteristic bowing, demonstrate other typical features too.

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Jacobs

The knees and the ankles are swollen and it’s at the end of the bone, at the growth plate, the part of the bone which is developing and growing, that’s where you see the changes of rickets.Ìý The end of the bone is not clear and clean like a healthy bone, it looks rotten, it looks frayed and splayed.Ìý And this is an old fashioned classic picture of rickets.

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Porter

What’s actually going wrong with the bone, why do you get that bend and that rotten appearance?

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Jacobs

If you look under a microscope the growth plate is disorganised in a child with rickets.Ìý The growing part of the bone fails to calcify.Ìý Because there’s a lack of calcium and phosphate in the child’s blood the bone simply doesn’t form, so the child ends up short and deformed.

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Porter

So essentially what’s going wrong is that the building blocks necessary for healthy bone just simply aren’t there.

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Jacobs

Exactly, because the ingredients are not there – the calcium and phosphate – without Vitamin D you can’t lay down the ingredients and therefore the building blocks simply don’t form.

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Porter

Did you know what you were looking at when you saw his legs?

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Zana

I’ve seen people with bow legs and it doesn’t look very pretty.Ìý But I didn’t really know much about rickets or if that’s what it was, you know.

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Porter

But you were just a worried mum?

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Zana

Yeah, I was worried that it didn’t look right, you know, because he was having difficulty running as well, he would play for a little bit, run and then sit down and rest.Ìý We did notice he was quite uncomfortable that when he was running he seems to be tired very quickly and sit down for a while and then go back again, which is not normal for a child.

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Porter

So, from your perspective, you feel he’s a lot better?

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Zana

Yes, he is yeah, he’s running for much longer and he plays for much longer.Ìý He will be doing jumping, getting on a chair and jumping, which he seems to be quite comfortable.

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Porter

Unfortunately, Zana’s son is far from alone. Rickets may still be rare, but milder degrees of Vitamin D deficiency are not. ÌýIndeed, getting enough of the so called sunshine vitamin is a challenge for most children in the UK.

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Jacobs

The recommended amount of daily intake is about 10 micrograms and we know that you only get about two or three in the diet.Ìý So, we’re relying on people, either making Vitamin D from sunshine or taking it as a supplement and unfortunately in the UK there’s simply not enough sunshine, especially in the winter it’s impossible from November, December, January, February, March to form Vitamin D from sunshine.Ìý So, unless people give their children supplements or feed them foods which have been artificially fortified with Vitamin D a child simply won’t get enough.

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Porter

Who’s at particular risk?

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Jacobs

You need Vitamin D, especially when you’re growing fast, so young babies, children when they’re growing fast in puberty, pregnant women particularly need to be careful to get enough Vitamin D for their health as well as the health of the baby.Ìý The elderly also tends to lack Vitamin D more than the rest of the population.

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Porter

And looking at those groups are there particular sub-groups that are more likely to have Vitamin D deficiency?

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Jacobs

Yes, it’s certainly more of a problem in people with darker skin, because you need more sunshine and also people who dress very modestly, so particularly Muslim women who cover their skin will find it very difficult to make enough Vitamin D in this country.Ìý The other group that we’re starting to discover as a major problem are children on a restricted diet.Ìý So, that might be because a child has an allergy or a child is thought to have an allergy.Ìý If a child is not drinking milk and eating fish, for example, then they will lack calcium and even if you have a reasonable level of Vitamin D unless you get some calcium in your diet you can get rickets.

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Porter

At any stage during your pregnancy were you advised to take a supplement, did anyone mention supplements to you?

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Zana

Well I had a Vitamin D shortage myself when I was pregnant with him and I did take some Vitamin D supplements but nobody mentioned anything about him taking or making sure the baby’s taking some Vitamin D when it’s born.

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Porter

The issue wasn’t raised with you?

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Zana

No.

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Porter

Growing concerns about the resurgence of rickets prompted the British Paediatric Surveillance Unit to survey all children diagnosed with the condition in the UK over a two-year period. ÌýDr Priscilla Julies is a paediatrician at the Royal Free Hospital in London and one of the principal investigators.

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Julies

There were two cases we had actually of deaths from Vitamin D deficiency and one of them was from Birmingham and the other one was actually from London.Ìý And I think you’ll agree with me to die from Vitamin D deficiency is unacceptable in this day and age and extremely sad.

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Porter

The report is still being finalised but Dr Julies shared the interim figures with Inside Health. Nearly 200 children were diagnosed with rickets over the two-year period but that’s likely to be an underestimate. ÌýThe survey only recorded cases reported by consultant paediatricians and more children could have been diagnosed and treated in other tiers of the health service such as orthopaedic clinics.Ìý ÌýAnd there is more to the story than Vitamin D deficiency.

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Julies

One of the things that’s emerging both from the literature and the results from our study are that both calcium and Vitamin D are just as important in causation of rickets.Ìý So, it’s not just about making sure that your Vitamin D level is good, it’s also about making sure you have enough calcium in your diet.

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Porter

So, you could have a normal Vitamin D intake but a low calcium intake and still end up with rickets?

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Julies

That’s right.Ìý Our study is one of the first to show that interplay between the two and how both of them are important.

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Porter

Because there are concerns that there are a lot of children potentially with sub-optimal levels of Vitamin D out there but most of them do not have rickets.Ìý Does your research suggest that you probably need both to get rickets – you need Vitamin D deficiency and a poor calcium intake?

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Julies

There’s a very complex interplay between the two nutrients.Ìý So yes, that’s correct, that at any one time either one of those could be low or one could be normal, one could be high and that interplay actually affects how rickets then develops.

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Porter

But one would hope in a country as wealthy as the UK, with an established public health pattern, with long established advice on Vitamin D and calcium intake that this would be exceptionally rare and it’s not.

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Julies

Yeah exactly.Ìý One of the things we found, sadly, and this is one of the shock findings of the surveillance, was that although there was guidance about who should be getting Vitamin D supplementation, 70% of children who were eligible to take supplements were not on them.Ìý That’s a failure of public health policy and that’s one of the main findings of the study.

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Porter

Advice about when to give Vitamin D supplements to babies and children has, in the past, been somewhat confusing.Ìý The latest guidance – released in 2016 – is much clearer and recommends that supplementation be considered in all babies and children under five unless they’re drinking more than half a litre of formula milk a day. ÌýBut simpler guidance doesn’t mean that it’s going to be followed.

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Dr Wolfgang Hogler is Consultant Endocrinologist at Birmingham Children’s Hospital.

Hogler

Most European countries supplement all infants universally independent of the mode of feeding and they’re doing very well in there but the UK is sadly lagging far behind.Ìý So, for a hundred infants born in England only five to 20 receive supplements, whereas in the rest of the Europe those numbers are over 80.Ìý And that’s policy and a policy implementation problem that is very UK specific.

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Porter

What are we doing particularly wrong in the UK, because I mean the latest guidance suggests essentially that every child under the age of five, irrespective of their age, irrespective of how they’re fed, the parents should consider Vitamin D supplementation?

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Hogler

Yeah, that’s true but…

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Porter

Seems easy advice to follow on the surface.

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Hogler

Definitely.Ìý I mean this is where one has to think how a prevention programme works.Ìý Why is it that – so the prevention of infection through the immunisation programmes, the vaccinations, in the first months and the first year of life works relatively well in the UK with over 90% of infants receiving those vaccinations and why does the other prevention programme, to prevent rickets, not work?Ìý And the answer is because one programme is supported, funded and monitored and the other one isn’t.Ìý In most European countries you get your first bottle of Vitamin D at discharge from a neonatal unit and then you register at your GP or paediatrician who then will again monitor the supplementation at every child health surveillance visit.Ìý And that’s not happening in the UK.

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Porter

Are there any examples of good practice that they’ve managed to make inroads?

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Hogler

Yeah in Birmingham when there was a public health campaign and the percentage of infants actually receiving supplements was increased from 5-20% but you know I’ve just given you the numbers – in most European countries that number is above 80%.Ìý So, raising awareness and talking to everybody doesn’t help, what you need is somebody being made responsible.Ìý The GPs in England are responsible for the immunisation programme, so why does the government not make them also responsible for monitoring the Vitamin D supplementation?Ìý It is a fact that 85% of all parents in the UK actually don’t know that this programme exists.

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Porter

A member of a European Society for Paediatric Endocrinology working group, Dr Hogler was behind a question raised at Westminster.

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Hogler

I asked Her Majesty’s Government whether they have any plans to designate a group of healthcare professionals to be accountable for the prevention of rickets.Ìý And the response by the government was – how can I say that politely? – not satisfactory.Ìý They said rickets can generally be prevented by ensuring that children have a healthy balanced diet, spend some time outside in the sun and take appropriate supplements.Ìý That was their response and they said they have actually published the NICE guidance which says everybody should be on supplements and the local commissioners would wish to consider how best to take forward these recommendations.Ìý Right that’s all nice, but it’s wrong.Ìý The government seems to ignore that UK’s latitude, the fact that we don’t have enough sunshine and the sunshine is the main source of Vitamin D.Ìý They ignore any public health expertise that is out there that says the messages need to be simple and that monitoring is required of such prevention programmes.Ìý So, I – yes I’m becoming a bit frustrated with the UK government’s attitude towards this.

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Jacobs

And we’ll probably ask him to come back in another six months for another check-up.Ìý Do you have any other questions – was there anything else you wanted to tell me?

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Zana

So, will his leg get completely straight if he keeps taking all the Vitamin D?

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Jacobs

I expect he will, as long as he keeps taking the Vitamin D and continues with a good diet.Ìý You need to have calcium in the diet, so the calcium with the Vitamin D should make his legs completely back to normal.

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Zana

So, it’s very important for calcium and Vitamin D to go hand in hand together?

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Jacobs

Exactly, you need both.

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Zana

Okay.

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Porter

Dr Benjamin Jacobs in his clinic at Stanmore.

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We’ve spoken to Public Health England who say there are no plans for a formal monitoring programme for Vitamin D supplementation. ÌýInstead the policy is to continue to work with local authorities and health visitors to give healthy nutrition advice to all new parents during the first two years of life.

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And there is a link to the latest guidance on who should be taking Vitamin D supplements – and it’s not just children – on the Inside Health page of the Radio 4 website.Ìý If you are a parent, please take a look. ÌýBut don’t just depend on your doctor, midwife or health visitor to remind you and please spread the word.

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The number of drug related deaths hit a record high last year, with a particularly worrying increase among cocaine users.Ìý And this is set against a background of growing concern about the impact of misuse of prescription medicines – particularly morphine type painkillers – and the burgeoning popularity of novel psychoactive substances like spice and mamba.

And the changing drugs scene has been accompanied by changing attitudes to how services can help addicts recover from their habit. ÌýA new European study into recovery has just been launched by a team from Sheffield Hallam University in the hope that a better evidence base will help shape better legislation, policy and services.

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Professor David Best is leading the project.

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Best

For around a decade now there’s been an increasing recognition that the resolution of problems is much better predicated on strengths, the building of connections, of communities, of aspiration and hope than on pathology management.

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Porter

Because there has been this perception that once an addict you’re always an addict and there’s something different about the addict’s brain and that’s been popular both with the researchers and the medics and the drug users themselves, it sort of explains things away.

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Best

Absolutely and there was a belief that if we could move away from this idea that it was a disease of the will, some kind of weakness of will, and move towards the idea that this was a medical brain disorder then stigma would reduce.Ìý However, surveys have since shown that while there has been a general recognition of brain disorder it’s actually increased the level of stigmatisation.Ìý So that particular aspiration, well intentioned as it was, has misfired and we’ve ended up in a situation where people will say – yes, it’s a brain disorder but it’s a chronic relapsing brain disorder that’s permanent and irreversible.Ìý

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I think what the recovery movement has shown is that not only is it reversible and the best estimates that we have is that between 50 and 60% of people who have a lifetime substance dependence will eventually recover.Ìý But that we can increasingly understand how and why they recover.

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Porter

And what do we know about those people who manage it successfully, that 50 or 60%, is there something different about them from the 40% or so who don’t manage it?

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Best

Yeah, I mean there are issues about complexity and severity, that people who have, for instance, co-morbid significant mental health problems, who have significant histories of prison time, they have slightly reduced odds.Ìý And what we know about who does make it we characterise now in the science of recovery, capital, so we know what to measure and there’s things about the strengths individuals need, particularly important are things about social networks and the transitioning from excluded networks of fellow addicts and drinkers to pro-social networks is a massive thing.Ìý And while there are health measures that need to be taken essentially, it’s the contagion of hope that’s at the absolute heart of the recovery process.

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Porter

But another popular perception about drug misuse is that you end up in a vicious downward spiral where you often lose the connectivity, you may run into criminality to fund your habit.Ìý All of the sorts of things that help people successfully quit you start to lose.

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Best

Absolutely.Ìý And one of the things we know is that natural recovery, where people recover without any external support or assistance, tends to happen relatively early, so where people still have retained some of that capital, they haven’t lost their job, they haven’t lost their family.Ìý So, for people who do lose all those things it’s a long slow process for people to recover.Ìý And then generally from the point of putting down drink or drugs we estimate it’s about a five-year process till people can self-sustain their recovery journey.Ìý

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So, therefore, there is a core requirement that there are external supports at the start of that process but also throughout it, to build the scaffolding around people to allow them to recover.Ìý So, one of the dangers we have is that stigmatised exclusionary attitudes on the part of the general public, but especially in the part of professionals, are almost self-fulfilling prophecies and reversing those beliefs that once an addict always an addict, is a critical part of managing that process.Ìý But we know that where people do manage that journey, when people do make it to five years into recovery, not only do they become useful viable citizens with strengths and assets to contribute, they actually typically are what we’d refer to as better than well.Ìý They volunteer more, they’re more active in the community.Ìý So, they actually become a positive strength.Ìý In other words, the better than well phenomenon is one that everybody benefits from.

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Porter

Is there something special about that five-year period?Ìý It’s a duration we often use to determine a cure in other things, like cancer even.Ìý Once you get to five years are your chances of relapse very small?

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Best

Evidence would suggest that in the first year after people detox from either alcohol or from heroine the likelihood of relapse is between 50 and 70%.Ìý So, people are more likely to relapse than not.Ìý By the time they get to five years of consistent sobriety the likelihood of relapse has dropped to 15 – one five – percent.Ìý People are never safe, it’s not the case that once you reach a certain point you won’t relapse, it’s just that the odds are as good at that point as there’ll ever be.

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Porter

But they’re still fairly high, aren’t they, I mean you think that at five years you’ve done the hard work but you’ve still got a lifetime of hard work effectively.

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Best

Absolutely, and it’s why if, for instance, you subscribe to an Alcoholics Anonymous 12 step view of recovery, the belief is that you have to keep working at your recovery for the rest of your life, you’re never fully recovered.Ìý That’s not a view that’s shared by all recovery philosophies but certainly the evidence would suggest that people don’t ever become immune, that there is no cure point.

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Porter

What about the differences between men and women?Ìý First of all, in terms of the scale of the problem of drug abuse compared to men and women and in terms of recovery.

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Best

Firstly, it’s far more prevalent in men than women.Ìý And certainly, if you look at any treatment surveys, they will typically suggest that between two-thirds and three-quarters of addict populations are male.Ìý So, it became a really interesting surprise to us, as with criminal justice populations, there appears to be a higher level of stigma around addiction for women than there is for men.Ìý And that all sounds pessimistic but on the up-side women typically have a shorter addiction career than men.Ìý We also know that the mechanism of change for women is different for men.Ìý For women it’s to do with increases in abstinence, self-efficacy, for men it’s much more to do with changes in social networks and the underlying cognitions that brings about.

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Porter

It’s a European survey David, are you expecting to get different results from different parts of Europe?

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Best

That’s what of our core hypothesis for this study.Ìý One of the things we’re most interested in focusing on is the question of whether the two countries – Scotland and England – who have had recovery policies for around a decade, have better pathways of support than the two countries that have recently initiated recovery policies – Belgium and the Netherlands.Ìý Because it’s crucial that we understand whether public policy can actually make a difference in this area.

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Porter

Professor David Best.Ìý And there are more details on his European survey on our website.

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Now, if you have watched any medical drama you’re bound to be familiar with defibrillators – the electrical devices used to shock the heart back into a normal rhythm during cardiac arrest.

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Well, advances in pacemaker technology now mean that some people – those prone to life threatening rhythm disturbances –Ìý carry their own internal defibrillators. ÌýKnown as implantable cardioverter defibrillators or ICDs, the devices, which are only a bit bigger than a matchbox, sit under the skin on the upper chest and monitor the heart. ÌýIf they detect a problem they can deliver a shock direct to the organ.

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But what does it feel like to know, that at any moment, your ICD might fire? ÌýArrhythmia specialist nurse Sharlene Hogan is all too aware of the anxiety they can induce in some of her patients, so she set up a support group that meets three or four times a year at St Thomas’s Hospital in London.

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We caught up with Sharlene at their most recent get together.

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Hogan

I think it’s the feeling when the device goes in that they know that this is there and it’s the fear of the unknown.Ìý They may hear stories and their imagination runs wild and they just don’t know how to cope with it.Ìý So, this is the importance of this group, it really helps you to have somewhere to go to where you can have those questions answered because knowledge is powerful.Ìý And just also meeting other people because you tend to feel like – I’m the only person with this device.Ìý So, they know they’re not isolated or alone.Ìý So that’s the good thing.

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I’m Sharlene, I’m one of the specialist nurses at the ICD support group.Ìý We’re going to start with Jerry, Dr Jerry Carr White, and he’s going to start off with a Q and A session.Ìý So, I’ll just introduce you to Dr Carr White.

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Carr White

Good afternoon everyone, nice to see you all.Ìý So, I’m Dr Carr Wright, I’m one of the cardiology consultants here.Ìý I think I recognise a few faces, so it’s nice to see you all.

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Porter

There are at least 60 people in the hall; many of whom are regulars. ÌýAnd when cardiologist Dr Carr White asks for questions, the first is about what it feels like when the defibrillator kicks in…

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Patient

Is there anybody who can tell me what it’s like when it goes off?Ìý

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Carr White

Yes, please if [indistinct word] hear from you.

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Patient

It’s probably the worst thing that you will have experienced for some time.Ìý You get a terrific punch in the chest and then you get a bright flash of yellow light in your eyes and you wonder what on earth’s happened.Ìý But believe you me you’re very lucky that it hasn’t happened to you.

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Williams

My name is Ian Williams, I had my defibrillator fitted in 2011.Ìý Didn’t realise, quite fit, healthy, jogging, running, ex-jazz dancer, ex-musician – collapsed and ended up at St Thomas’s Hospital, then found out I had this condition.Ìý At first, I was scared because – you know I’m terrified due to – I had this box – electronic gadgets they can go wrong and I was worried about the shocking, terrified, terrified but slowly and surely came to these meetings that happen, then they started to explain what happens inside and the more I went and understood the more easier it became.

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Hogan

Just the fact that this device can shock you at any point is a very scary experience for some patients.Ìý Not even if they’ve had a shock before but just the thought of having a shock and so this group helps them realise that actually you’re not the only one with these fears, there’s ways that you can live your life and work around it, maybe change the way you think, get your family involved, so that they would know what to do if the device did shock you.

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Carr White

Some people actually don’t know they’ve got a shock, so there is quite a variable response in what people describe.

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Patient

Yeah, could I add one thing?Ìý I’ve had quite a few shocks, they are a terrible experience but they’re not painful, it’s just a shock, like you’ve been kicked but there’s no pain with it.Ìý

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Hogan

Often, when they come to the meeting, it’s all that anxiety, that fear that’s built up there, you can just see it in their face and then they start asking questions or they start hearing other people talk and you can see the sudden realisation – actually I can cope with this.

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Patient

Out of experience again I know you think I’m 25, I’m not, I have been doing it a long time and I have had very, very few patients with ICDs fire, it’s not as a regular an occurrence as you think it might be.Ìý So, if that’s something you’re concerned about I hope that reassures a little bit, anyway.

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Carr White

A round of applause.

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Patient

It’s my first time at this group, I wanted to see what sort of discussions they had and it was good to come to see how other people feel about their defibrillator and how they manage and everything and yeah it was good.

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Hogan

It’s very rewarding, every single time we do it my colleagues and I say to ourselves after – absolutely, the patients really benefited from this – and that’s why we do this job because the ICD is there to help you live your life, to help you not be afraid.Ìý It’s like when you go travelling and you take out insurance you’ve got that there in case something goes wrong.Ìý But it’s not to be a hindrance to your life, it’s to complement what you want to do.

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Porter

Specialist nurse Sharlene Hogan at St Thomas’s Hospital in London.

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Now at this stage I normally tell you what is coming up next week, but we are not here. ÌýAll in the Mind’s Claudia Hammond is taking over to launch a survey into loneliness. ÌýBut normal service resumes the week after.

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ENDS