We could save 9 out of 10 children from a lifetime of stammering

[Leys Geddes]

I've just put up a new video at http://www.youtube.com/watch?v=uNA9rXrVrPU

I've done this because, here in London, the BERCOW REVIEW of services for children and young people with speech, language and communication needs has just published its Interim Review; the Final Report is due in July. See: http://www.dfes.gov.uk/bercowreview

The British Stammering Association was delighted to see that the Interim Report states that ‘communication is at the core of all social interaction. Communication is a key life skill. Communication is a fundamental human right’.

Unfortunately, few people out there understand that to have a difficulty in talking is just as life changing as having a difficulty in walking - and possibly even more so, because talking is not just something we do, talking is about who we are.

Around 720,000 children and adults in the UK stammer but, not surprisingly, it’s not a high profile condition. However, whilst we know that adults can’t be cured, we also know that if you can take a child to a qualified speech therapist, as soon as the stammer is obvious, which is normally somewhere around the age of three, then almost 90% of those children who are at risk of persistent stammering will recover.

The good news is that the Prime Minister, our Secretaries of State for Children, Schools and Families, and Health, and John Bercow himself, have all said that Early Intervention policies are the way forward.

This is a truly wonderful opportunity to virtually wipe out stammering in England and Wales over the next few generations. But the danger is that stammering, much like stammerers themselves, will be brushed back under the carpet in favour of something more dramatic and more visible.

If you are in England or Wales, can you help us? If you are in any other country, might a similar campaign be of any use to you?

[Adrian]

Leys, your campaign sounds like a noble thing and I certainly support it. But, I think you are giving early intervention too much credit. There is no real evidence that early intervention works with stuttering. The fact is 80% of stuttering children recover with or without therapy. Yes, some studies have shown certain early intervention strategies have around a 90% percent recovery rate, but, these had small sample sizes and were statistically insignificant.

My personal belief is more money should be put toward stuttering research so that we can find a real treatment rather then throw tax dollars/pounds at unproven treatments.

[Leys Geddes]

Thanks, Adrian That figure of almost 90% is supported by the British Stammering Association, of which I am Vice Chair, and by The Michael Palin Centre, the UK's leading specialists in speech therapy for children.

Yes, around 80% of those who start stuttering as children do indeed recover spontaneously. That is why the casual advice, given so frequently, is not to worry about it - because the child will probably grow out of it.

But I am talking here about the rest, who are what I carefully described as persistent stutterers, who will go on to make up the 1% of the adult population worldwide which stutters. Almost 90% of them would recover, if only...

[Adrian]

Leys, thanks for your response. Can you tell us what evidence supports the 90% recovery figure?

[Nicholas]

Yes, please direct us to research. An organization can say anything they want, but the steps taken to find this statistic would be great.

[Adrian]

Yes, please direct us to research. An organization can say anything they want, but the steps taken to find this statistic would be great.

Very true. I find the 90% number amazing. Factoring in the 80% who recover spontaneously, this would mean a 98% success rate! I would love to see research supporting this cl.

[Leys Geddes]

Yes, Adrian and Nicholas, please go to http://www.stammering.org/phcw_report.pdf where there is a summary of our Primary Healthcare Workers report. Enjoy reading this over the weekend and, when we can get back into our office on Monday, we should be able to provide further support if you want it.

[Adrian]

Leys, thanks for the document. I will look it over. I would like nothing more then for my doubts about early intervention to be proven wrong.

[Leys Geddes]

It's worth saying that PWS in the US, and in many other countries, are probably very suspicious of any kind of 'cure' cl, for any condition, but particularly for stuttering, because you are forced to choose from a wide variety of different healthcare specialists, who are making all kinds of cls, many through advertising, and who are commercially driven. Whereas, in the UK, we have a free National Health Service in which General Practitioners will advise their patients on what action to take and then recommend and introduce them to a specialist, if necessary. So UK healthcare practitioners do not need to make cls about their treatments, largely because they are recommended by other healthcare professionals, such as the GP, and thus are not required to sell direct to the consumer. The situation in the UK, where we are striving to ensure that there is a Government-driven, Early Intervention policy, with free treatment through the NHS, is completely different to how it is in the States. So you might not recognise that the general principle of screening and Early Intervention (and thus having an official system which s to ensure that every child who stammers gets to an SLT/SLP, for free treatment as early as possible - which, scandalously, we don't have at the moment) may well be more important than the exact nature of the therapy provided. So we at the British Stammering Association, which is a charity (non-profit to you), are not making a commercial cl designed to encourage people to come and buy a treatment from us; rather, we are pointing out to the Government, and to people who care about stammering, and who may want to support us, that in our experience, Early Intervention will enable almost 90% of those children who are in danger of persistent stammering, to recover. Phew!

[Adrian]

It's worth saying that PWS in the US, and in many other countries, are probably very suspicious of any kind of 'cure' cl, for any condition, but particularly for stuttering, because you are forced to choose from a wide variety of different healthcare specialists, who are making all kinds of cls, many through advertising, and who are commercially driven. Whereas, in the UK, we have a free National Health Service in which General Practitioners will advise their patients on what action to take and then recommend and introduce them to a specialist, if necessary. So UK healthcare practitioners do not need to make cls about their treatments, largely because they are recommended by other healthcare professionals, such as the GP, and thus are not required to sell direct to the consumer. The situation in the UK, where we are striving to ensure that there is a Government-driven, Early Intervention policy, with free treatment through the NHS, is completely different to how it is in the States. So you might not recognise that the general principle of screening and Early Intervention (and thus having an official system which s to ensure that every child who stammers gets to an SLT/SLP, for free treatment as early as possible - which, scandalously, we don't have at the moment) may well be more important than the exact nature of the therapy provided. So we at the British Stammering Association, which is a charity (non-profit to you), are not making a commercial cl designed to encourage people to come and buy a treatment from us; rather, we are pointing out to the Government, and to people who care about stammering, and who may want to support us, that in our experience, Early Intervention will enable almost 90% of those children who are in danger of persistent stammering, to recover. Phew!

Leys, you are absolutely correct in that stuttering is a money making enterprise in the US. Both SLPs and non-SLPs have been making impressive cls for decades that they simply cannot live up to. Many of us have learned the hard way to get real proof to back up any cls. That is all I am trying to do now.

As for your 90% cl, I skimmed the document and did not see anything to support it. The document makes a good arguement that early intervention MAY be for the best, but I did not see anything to support the 9 out of 10 cl. It mentions studies in the US and Australia, but does not give any details. If I missed something, could you point me to the correct page?

[Leys Geddes]

You read very quickly - but the detailed support is locked in the BSA office, so please give me a couple of days to get back to you!

[Adrian]

You read very quickly - but the detailed support is locked in the BSA office, so please give me a couple of days to get back to you!

Leys, take your time. For the record, I completely support your campaign for early intervention and you do not need to convince me of that. I am simply not convinced that there is any real proof to back up the cl that early intervention works. I am not saying it does not work, but I don't believe any proof exists. My understanding is to do a study to prove that it does work would entail huge sample sizes (because of the 80% natural recovery rate) and has never been done. I know the Lidcombe program in Australia has done some studies showing their program is more effective then no therapy at all, but these studies are very controversial because of the small sample sizes and because of statistical problems. The studies were also administered by the Lidcombe people themselves. When money and egos are involved, these studies should be done by independent entities.

Anyway, I am open to whatever you have to show me.

Thanks!

[Leys Geddes]

Glad to hear you are a supporter of Early Intervention! Like you, I know about the Lidcombe Programme and the more recent disagreements which surround their cls - particularly the high profile ones from savants such as Tom Weidig of Stuttering Brain fame. I referred you to our Primary Healthcare Workers report because it gives a very broad, and thus statistically valid, overview of what was going on throughout Britain at that time. The 'almost 90%' support is in one of the papers cited in the bibliography.

When you get that support, and assuming you accept it, how would you use that information?

[bwelling]

Very nice thread. We PWSs in the US have much to learn from how proactive and involved the UK government is with stammering. I know that far more funding is made available for programs in the UK than we could ever hope for in the US.

However, being a PWS, I am a skeptic of stammering/stuttering treatments and being a governmental auditor for 20 years that would make me a rigid cynic of any governmental program promoting 80-90% effective rates for anything, let alone treatment for something as elusive as stammering/stuttering.

Basically, the UK government supported programs have a real tough sell. I was around during the 1960's when NHS's complete disregard of known risks of Thalidomide was criminal. And with these cl's of incredible recovery rates for Early Intervention Policy for stammerers, I have to wonder what hidden risks could there be for children who stammer?

Again, while very concerned about this program's cls, it is far more then what is being done in the US by local, state and federal governments for stutterers.

Just my thoughts

bw

[Leys Geddes]

Hi, bw. We are trying to ensure that a report instigated by the UK Government, which is likely to recommend Early Intervention, is accepted by the Government and then fully implemented by our NHS. So when we cl an almost 90% recovery rate, we need to be correct and our data needs to be robust and authoritative.

I am trying to put this issue of what is possible, for relatively little Government money, into the public domain - so that the 99% of people who don't stutter, and who largely don't understand or care much about stuttering, feel that something just and significant can be achieved.

We have virtually no money with which to change attitudes to stuttering but, for example, my earlier video, at http://www.youtube.com/watch?v=-epHaW8nTJQ , was a first step, designed to draw attention to the unfairness of our situation. It is a tinydrop in a massive media ocean, but it has been viewed more than 23,000 times and following an article in the Guardian, the story was picked up by the BBC and some 30 other news media in the UK and abroad. There were also interviews on the BBC Radio 4 PM programme and BBC Radio London. At the peak of the campaign, hits on the BSA website rose from around 1,500 a day to 3,700.

So there is no harm in giving this one a good push too!

[bwelling]

Hi, bw.

So there is no harm in giving this one a good push too!

Leys, thank you for such a informative reply. You've got the attitude. I'll help you push.

bw

[Adrian]

Glad to hear you are a supporter of Early Intervention! Like you, I know about the Lidcombe Programme and the more recent disagreements which surround their cls - particularly the high profile ones from savants such as Tom Weidig of Stuttering Brain fame. I referred you to our Primary Healthcare Workers report because it gives a very broad, and thus statistically valid, overview of what was going on throughout Britain at that time. The 'almost 90%' support is in one of the papers cited in the bibliography.

When you get that support, and assuming you accept it, how would you use that information?

I do support early intervention if done correctly. Even if full recovery is not always possible I think a good therapist can teach a child to better adapt to their speech difficulties. I fully support a system which identifies children who need therapy and then gets them into good therapy. I hope you are able to improve on your UK system.

Our public system in the US is beyond help in my opinion. It does provide therapy in the schools for children who stutter, but it is most often a poor excuse for therapy. Most school therapists are not properly trained in fluency disorders and even those who do have the training don't have the time and resources to properly work with these kids. Each school system has their own policies and budget contraints and large scale change would be next to impossible.

Our best bet may be to put pressure on and educate the insurance companies to offer stuttering therapy. However, many insurance companies still do not believe stuttering to be a "medical" issue and therefore will not cover therapy for stuttering. :(

[Leys Geddes]

It's much the same here: not enough of our SLPs/SLTs are trained in modern treatments for stuttering and even fewer know how to deal with young children. So there is a big retraining job to be done before any kind of Early Intervention policy could be introduced.

Has anyone tried to convince the US Health Insurance Association, or whatever they call themselves, that stuttering is a neuroligical condition? If you could do that, you would have made a very good start. There is enough proof. But who would handle that negotiation: the NSA?

[Adrian]

Has anyone tried to convince the US Health Insurance Association, or whatever they call themselves, that stuttering is a neuroligical condition? If you could do that, you would have made a very good start. There is enough proof. But who would handle that negotiation: the NSA?

I'm not that familiar with the insurance industry, so I'm not sure who would be the best group to convince. The insurance companies are regulated by state agencies, so we could lobby each state government.

Some insurance companies will cover stuttering therapy, but most will not. My insurance company will pay for stuttering therapy if the stuttering were caused by head injury or stroke, but not treatment for "typical" stuttering. Insurance companies want to pay as little as possible, so I think they would fight anyone trying to convince them stuttering should be covered. It would probably be easier if people in our own would get on the same page about stuttering being a neurological condition.

[Adrian]

But who would handle that negotiation: the NSA?

Perhaps the NSA. They are a great organization with forming support groups and putting on conventions, but they have rarely taken an activist role. ASHA (the American Speech and Hearing Association) may be another option. They are a powerful organization and would stand to gain alot in creating a new money making industry for it's members(all SLPs).

[Leys Geddes]

I'm certain your insurance industry wouldn't choose to pay out for stuttering therapy! But trying to get them to do so would make for a very good fight, especially if you held it in public, because you would be in the right and you would build massive awareness of, and support for, stuttering. Someone needs to do some campaigning. But, as you say, PWS have not been very good at campaigning so far - and that must change, if you want the situation to change. I'd like to have some time to think about how to give that one a good push too! Because if progress could be made on this issue in the States, then it would have an effect on how stuttering is treated in many other countries, including ours.

[Adrian]

I'm certain your insurance industry wouldn't choose to pay out for stuttering therapy! But trying to get them to do so would make for a very good fight, especially if you held it in public, because you would be in the right and you would build massive awareness of, and support for, stuttering. Someone needs to do some campaigning. But, as you say, PWS have not been very good at campaigning so far - and that must change, if you want the situation to change. I'd like to have some time to think about how to give that one a good push too! Because if progress could be made on this issue in the States, then it would have an effect on how stuttering is treated in many other countries, including ours.

Leys, I am not a proponant of socialized medicine in the US, but in terms of stuttering therapy it might make change easier. In the UK you have one point of contact to convince of change. Here, we have hundreds of insurance companies, 50 state governments, and thousands of school systems all with very little oversight from the federal government. I realize change in the UK is a difficult fight, but I think it would be infinitely harder to do here. But nothing is impossible! :D

[Leys Geddes]

Persuading the UK Government and the NHS to adopt an efficient Early Intervention system will not be a one-stop job!

But, on the other hand, having hundreds of insurance companies, 50 state governments, and thousands of school systems with very little oversight from the US federal government does not mean there are not central points, where you could start making your point.

I'm glad to see that ASHA is already fighting against the exclusion of stuttering from US health plans. There is a very good article here: http://www.asha.org/about/membership-certification/divs/stutteringreimb.htm which recognises that ‘Researchers who studied adults with persistent stuttering found that these individuals had anatomical irregularities in the areas of the brain that control language and speech’. As a result, they say that ‘If treatment for stuttering is not covered by your policy, ask the health plan to explain the reasons for the denial in writing. This information can be helpful in appealing the original determination.’

America’s Health Insurance Plans at http://www.ahip.org/ cls to be the voice of America's health insurers, as it represents nearly 1,300 member companies providing health insurance coverage to more than 200 million Americans. They say that their member companies ‘offer medical expense coverage, long-term care insurance, disability income insurance, dental insurance, supplemental insurance, stop-loss insurance and reinsurance to consumers, employers, and public purchasers. AHIP enjoys a reputation as the nation’s most proactive, creative and productive health care association. We strive to make our programs, services and personnel the envy of, and the standard for, all other national trade associations. Since 1996, AHIP's Disease Prevention and Public Health Work Group has been a focal point for sharing models that work and exchanging information on preventive health services and emerging public health issues’.

They go on to say that ‘Complications from chronic conditions are avoidable through early identification, effective treatment, and patient self-care-strategies that health insurance plans have long emphasized for their enrollees’.

I would thought that, for both financial and image reasons, the American insurance industry might prefer to arrange a few weeks of treatment for a young child than treatment for life for an adult.

I should have the EI support tomorrow.

[Adrian]

Leys, I am impressed! You are on certainly on top of these things. :cool:

[Leys Geddes]

Sorry about the delay, but the following will hopefully go a long away towards providing the support you are seeking for the 9 out of 10 cl.

Firstly, if you look more carefully at the BSA’s Primary Healthcare Workers report, which I referenced before, you will see this:

‘Although there is no cure for adult stammering, therapy for early stammering is known to be effective. Starkweather (1997) recommends intervening early and close to the incipience of the dysfluency for many reasons, viz.: the young child is much easier to change than an adult; the duration of treatment is short compared to that for adults (8 weeks to a year); treatments developed for pre-school children are both efficient and effective with essentially complete remission of symptoms, no side effects and little relapse in about 95% of cases’.

Secondly, in the BSA’s first project on early intervention, which was submitted to the Department of Health, you will find this:

‘Although researchers examining the efficacy of early intervention have used divergent therapy approaches, the studies have yielded similar results. Riley and Riley (1984) treated 37 children aged 3 -12 years using their component model. Results indicated that 82% of the children were fluent by the end of the programme, or their stammering was considered to be so mild that it was not a problem. Fosnot (1993) reported on one study in which 33 preschool children (21 boys and 12 girls) received therapeutic intervention for an average of 30 hours. All children were studied over a period of five years. Of the 33 children, 30 (90.91%) remained fluent. Meyers and Woodford (1992) reported on their treatment of 29 stammering children aged between 2 and 5 years. Twenty seven received intervention within a year of onset. All were described as fluent at the follow-up assessment. The remaining two were still reported as stuttering.’

This second report, all 105 pages of it, is also available from the BSA, for only £10 plus postage and packing!

Today, understanding, theory and practice have obviously improved, to the extent that the BSA, as the leading source of impartial information on stammering in the UK, and the Michael Palin Centre, our leading specialist therapy centre for children, which is also a charity, are very happy to tell parents that there is an almost 90% recovery rate for Early Intervention amongst pre-school children with persistent stammers.

I expect to be getting more support soon and, if people would like to see it, I’d be very glad to post it here.

[Adrian]

Sorry about the delay, but the following will hopefully go a long away towards providing the support you are seeking for the 9 out of 10 cl.

Firstly, if you look more carefully at the BSA’s Primary Healthcare Workers report, which I referenced before, you will see this:

‘Although there is no cure for adult stammering, therapy for early stammering is known to be effective. Starkweather (1997) recommends intervening early and close to the incipience of the dysfluency for many reasons, viz.: the young child is much easier to change than an adult; the duration of treatment is short compared to that for adults (8 weeks to a year); treatments developed for pre-school children are both efficient and effective with essentially complete remission of symptoms, no side effects and little relapse in about 95% of cases’.

Secondly, in the BSA’s first project on early intervention, which was submitted to the Department of Health, you will find this:

‘Although researchers examining the efficacy of early intervention have used divergent therapy approaches, the studies have yielded similar results. Riley and Riley (1984) treated 37 children aged 3 -12 years using their component model. Results indicated that 82% of the children were fluent by the end of the programme, or their stammering was considered to be so mild that it was not a problem. Fosnot (1993) reported on one study in which 33 preschool children (21 boys and 12 girls) received therapeutic intervention for an average of 30 hours. All children were studied over a period of five years. Of the 33 children, 30 (90.91%) remained fluent. Meyers and Woodford (1992) reported on their treatment of 29 stammering children aged between 2 and 5 years. Twenty seven received intervention within a year of onset. All were described as fluent at the follow-up assessment. The remaining two were still reported as stuttering.’

This second report, all 105 pages of it, is also available from the BSA, for only £10 plus postage and packing!

Today, understanding, theory and practice have obviously improved, to the extent that the BSA, as the leading source of impartial information on stammering in the UK, and the Michael Palin Centre, our leading specialist therapy centre for children, which is also a charity, are very happy to tell parents that there is an almost 90% recovery rate for Early Intervention amongst pre-school children with persistent stammers.

I expect to be getting more support soon and, if people would like to see it, I’d be very glad to post it here.

Leys, thanks for the information. I am confused by what is meant by "persistent stammers." You had stated these are the children who will stutter into adulthood. My understanding is the 80% natural recovery rate is for those with "persistent stammers." Either way the studies you site seem to include the 80% natural recovery rate.

Anyway, I have no issue with your using these studies in a effort to gain support for early intervention. But, I don't believe these tiny sample sizes prove anything. Throw in the 80% natural recovery rate and the studies are statistically meaningless.

I wish you the best of luck with this. Perhaps in the future you "9 out of 10" arguement will be proved true. But, as of now, it is simply a guess.

[Leys Geddes]

I'm no wishful thinker, but I think you are being a bit too sceptical and harsh there, Adrian.

About 5% of children stutter and about 80% of them recover spontaneously; so that is how we end up with the figure of 1% of an adult population stuttering. So the children who I describe as persistent stutterers are the 20% who do not recover spontaneously.

Bear in mind that the 80% spontaneous success rate doesn't take account of the fact that SLT/SLPs don't treat every child that comes through the door, quite the reverse. This is because SLT/SLPs will make a differential diagnosis and only treat children when they suspect that the stuttering might be persistent. So when you look at these research results, you’ll need to remember that these are children who have been selected because they are considered to be potentially persistent stutterers, so the natural recovery rate of these groups will be much, much lower than 80%.

[Adrian]

Leys, I apologize if I am being too harsh and I am really not trying to give you a hard time. I know you are one of the good guys in the stuttering . But, yes, I am very sceptical. SLPs have been cling early intervention works for decades. But the reality does not seem to mesh with these little studies they do. The fact is no large scale independent study has been done showing early intervention works. The SLP is not even on the same page, I know some SLPs who do not believe early intervention works (as far as full recovery is concerned). Also, Yairi, who is cited in your paper, has done a study suggesting that recovery may be genetically predetermined. There are still too many unknowns to state unequivically that early intervention works.

Again, I support your campaign. Anything that will bring more money and attention to stuttering children is a great thing.

I think we will have to agree to disagree on this point. :)

[Leys Geddes]

Hello again, Adrian -and anyone else who is tuned in! Yes, I am a bit disappointed in what you say. On the other hand, we think this is a wonderful opportunity for us to take a huge step forward in dealing with stammering in this country, and we will be getting on with it!

The BSA has been campaigning for Early Intervention since 1994. We have some SLPs who specialise in stammering, and some of them specialise in children - and thus in Early Intervention. They do not need any further research to prove that EI works, because they know it does, from their every day work. That's why they, and we, can tell parents, with confidence, that 9 out of 10 children recover.

I don't know why your SLPs don't agree with this! My postings on STUTT-L also seem to confirm that there is not much interest in this subject in the States. I will ask Judy Kuster at MNSU and see what she thinks!

You say you want a large scale independent study. Well, I don't think this is likely to happen because no one has the interest, the money or the logistical ability to put such an exercise together - and then sustain it for several years, to make sure the results are valid. Many people poo-poo Onslow for what they interpret as his 'commercial' attitude but, without that, he probably wouldn't have got anything worthwhile off the ground. This is the Real World.

As I see it, we PWS are reluctant to speak out and thus reluctant to campaign. Because we don't speak out or campaign, there is low awareness and understanding of stammering. Because of this, there is no money. And because of this, we are unable to do big research exercises, give real support to PWS or, like larger charities, expand awareness and understanding through things like advertising.

This is why, 14 years ago, the BSA decided to concentrate on what could be done with a very limited budget. EI was thought to provide the best opportunity for change - not just in terms of therapy efficacy, but also because we could afford to sustain a campaign against the small and influential target audience who might be open to the EI message. I'm proud of what we have done so far, but there is still a hell of a long way to go. It's always like that climbing mountains: you think you're getting to the top, but you suddenly find you're not!

So, unfortunately, we will have to agree to disagree -but I'll let you know what happens, and maybe it will help you...

[Adrian]

Leys, I too was surprised by the lack of response on stutt-l. I don't know what it is like in the UK, but, here in the states, there is somewhat of a distrust of SLPs in the stuttering . Many of us (myself included) received early intervention and still continued to stutter. Perhaps it is unfair, but SLPs here are viewed as greedy or incompetent by many. Studies have been used as nothing more then marketing propaganda for programs such as Schwartz and Hollins instead of tools to further stuttering therapy. I don't know much about Onslow, but a commercial attitude can make studies about marketing instead of progress. Lidcombe may be a fine program that really does work, but I believe it is too early to know for sure.

Anyway, I wish you the best of luck.