Visit BSA's new blog. It'll tell you something about the BSA – what we do, how we do it, stories we encounter, stories that move us. Perhaps it will also make us think about the everyday stuff we do, take for granted, and don’t realise we never told anyone we’re doing them.
Today is just my second day in the role of Membership Manager for the Employers Stammering Network. I wanted to take the opportunity in my first week to introduce myself, to say how delighted and excited I am to be here and to thank everyone for the warm welcome I have had.
By background I am a linguist and a librarian, but I have worked for a number of charities and membership organisations, including the Association of Charitable Foundations. I've also co-ordinated projects that relate to supporting diversity and inclusion and managing cultural change. I am particularly interested in issues that relate to people, places and identity. This is my first connection with stammering, so I am looking forward to listening and learning!
I was looking for a new part-time job and first found out about the ESN Membership Manager role from Jan Logan, a speech and language therapist, previously at the City Lit, whom I know not because of her background, but because we have both been going to the same Tai Chi class for a number of years. It confirms my view that chance conversations can lead in unexpected directions!
Lionel Logue: “Why should I waste my time listening to you?”
King George VI: “Because I have a right to be heard! I have a voice!”
Colin Firth exorcises the words across the halls of Westminster Abbey. It is my favourite moment of The King’s Speech. It is such an empowering stammering epiphany
King George, to me, is not speaking to Lionel; he is speaking to himself. He is re-claiming his right to speak. A right that he had lost among all of the negative thoughts and feelings he had around his own speech.
“Because the nation believes that when I speak, I speak for them. But I can't speak”, the King laments early in the film.
All this week StutterTalk have been at the International Fluency Association’s 2015 World Congress producing numerous podcasts with experts on stammering research. The episode I found most interesting was with Dr Michael Boyle on self-stigma in stammering. Stigma it seems can come in two flavours. Public stigma is the most recognisable form. The stigma enacted by society on those who stammer: laughing at an individual who stammers, turning them down for a job because of their speech.
Self-stigma is a more subtle form. Self-stigma is the internalisation of the negative opinions of society. It is those moments of holding back on saying or doing something because of a fear about the reaction of others to stammering.
Self-stigma is thought about in three stages of de-valuing ourselves: awareness, agreement and application of stereotypes. The individual first becomes aware of a stereotype about their stigmatised conditions from society (King George realised that those around him believed stammering showed weakness). They then come to agree with that stereotype themselves over time (King George believes his stammering is a sign of his personal weakness) and finally, and tragically, they come to apply it to themselves (King George believes himself unable to be king because he is weak).
To me, this self-stigma is an understandable response to a society designed for fluency, which wrongly and incorrectly discriminates against our natural way of speaking by a thousand cuts: from strange looks, through automated telephone systems up to the “you can’t even remember your own name”. It is no surprise an individual who stammers can come to view their own speech as inherently wrong and that that subsequently negatively affects the course of their lives. And research shows us that this does happen.
In a galling study into employment aspirations of people who stammer in the UK, nearly three-quarters of participants reported that their speech dysfluency meant certain roles were ‘definitely out of bounds, like a policeman, soldier etc’. One participant explained ‘I had to think about what I could do, not what I wanted to do, 'want' really didn’t come into it'.
This is the tragic end-point of discriminative views of general society on stammering. The person comes to hold themselves back.
However, research into self-stigma has highlighted a surprising finding: some people “are energized by prejudice and express righteous anger”. Some people with disabilities come to rage against the negative stereotypes that proliferate in society rather than accepting them. They gain in self-esteem rather than lose it. They believe themselves capable with a disability and place blame for any lack of ability with a discriminating society rather than anything inherently wrong with themselves.
King George in that great scene kicked out his old negative self-stigma of his own speech and replaced it with an anger demanding a right to speak.
Perhaps before we begin to change society’s negative opinions of stammering, we too must fight to change how we ourselves think of stammering. Then we can begin to demand our right to be heard.
Tonight, Professor Paul Dolan talked about stammering and happiness. Paul is something of an expert in happiness, having written last year's bestselling "Happiness by Design".
So, I was interested. Paul is an economist and as an economist he asked himself the question ‘why does money make us happy’? You have an input (money) and an output (happiness) but what happens in between, what turns one into the other?
His answer was “attention”. Important to us is only that which we pay attention to. So more money makes us happy while we pay attention to it - but unfortunately, we soon stop doing so.
Why? Our brain doesn't like paying attention - it's much happier running on autopilot because that's much less effort. It’s not for nothing that we use the phrase ‘pay attention’ – there’s a cost to it. But whatever our brain does choose to pay attention to seems really important to us - probably far more important than it actually is. So, the 'trick' of being happy is to focus attention on things that make you happy: spending time with friends, walking in the countryside, listening to music, etc. We are happy through paying attention to things that make us happy; we’re unhappy because we pay attention to things that make us unhappy [terrible simplification on my part, but you get the drift].
So, what is the link to stammering, I hear you ask? Well, stammering is unpredictable. If, as Paul says, we'd be guaranteed to stammer on every sixth word, we'd soon get used to it, and our attention would wander because the brain doesn't like to waste effort paying attention to utterly predictable things. But predictable is what stammering is most definitely not. Unpredictable is dangerous. So we watch out for it, anticipate it – we pay attention.
If the old dictum of "stammering is what we do when we try not to stammer" holds true, well, you couldn't focus more attention on trying not to do something if you tried. "Don’t think of the white teddy bear", said Paul. What are you thinking of right now? See?
It would also explain why secondary behaviours work - for a while. They distract our attention from stammering. Until they become so automated that our brain can stop wasting effort on them.
But I was most struck by the importance of happiness, when I was asked to say a few words at the end about what BSA does. And what I said was that we can't give people fluency. No one can. We can offer knowledge, insight and choice. We can fight to ensure every person who stammers gets the understanding and respect they are entitled to. And we can hold and nurture the stammering community which is a rich source of mutual support and wellbeing.
Not every person who stammers can become fluent. But I believe that every person who stammers has the potential and the right to be happy. And to help that along is, in essence, what the BSA is here for.
The Leeds Stammering Support Centre has been a great success since its inception in 2011 – not just through the delivery and development of service for children and adults who stammer but also by serving as a Northern Centre of excellence and training for many SLTs, both specialists and generalists.
It had many determined and supportive god-parents like BSA patron Ed Balls and the Trustees of Action for Stammering Children, the Speaker of the House of Commons opened the Centre, and it had the enthusiastic buy-in from Leeds Community NHS Trust (LCH) and the Leeds stammering specialists around Trudy Stewart (aka Dr Trudy) - as well as the Yorkshire and Humber Primary Care Trusts who were willing to block-fund the Centre so that clients from all over the region could simply show up on their doorstep and receive help.
Over time, things became more difficult. Primary Care Trusts were abolished and Clinical Commissioning Groups came in so that funding from outside Leeds became more difficult. Expected numbers of referrals from outside Leeds failed to materialise as money in the NHS was getting tighter.
At present, the Centre will continue to offer specialist speech therapy services for adults and children in Leeds who stammer albeit with reduced staffing. Leeds Community Health will remain committed to accepting referrals for specialist services from outside Leeds, though the funding would now have to be in place before they can do so.
BSA wants to see excellence in service for everyone who stammers, and we believe given the cuts we see in NHS speech therapy services that a Northern Centre could serve as a hub to test out different models of service delivery. There are many area in Yorkshire who would never need to refer clients because they themselves offer a great service – but they could still benefit from training or networking opportunities. There are areas without a specialist service which could benefit from a ‘roving therapist’ who attends a local clinic at certain times of the week. The Centre could also be a place to develop telehealth for more remote areas. These are services which, properly piloted, could attract funding from Clinical Commissioning Group
For that to work, we would need an independent review to look at what worked well, and to see what may need be done differently in future. Following on from that, we will need buy-in from NHS providers and commissioners as well as the support of Action for Stammering Children.
We at BSA are hopeful that with a strong sense of commitment and good will on all sides an even better Northern Centre can re-emerge, offering great services for people who stammer, of all ages, in the North of England.
There's been a lot of concern in SLT circles about the proposal by the Australian SLT's Association Speech Pathology Australia to their Treasury that their Healthcare system Medicare should fund interventions for dysfluency in young children - but only if the intervention is based on the Lidcombe approach. This was justified with the assertion that only Lidcombe has a sufficient evidence base in terms of recovering fluent speech.
For a long time, Lidcombe has had a virtual monopoly for the treatment of pre-schoolers in Australia who stammer. To be honest, I am not sure how many Australian SLTs would use anything else. Australian practitioners not wedded to Lidcombe seem to exist (I met one once, in Oxford) but are so rare that I am not certain how much practical difference this proposal, if accepted, would make. But of course it's making a statement.
BSA's view is that this kind of monopoly is neither desirable nor helpful unless you can demonstrate something works for all children, all of the time. There is a monopoly in the treatment of appendicitis, and for good reason. But we feel that monolithic approach doesn't really work for stammering.
BSA believes it is unlikely that all stammering in all young children can be addressed with a single approach. We do get regular calls from parents who've used Lidcombe therapy for six months, a year, and it hasn't helped, just as we get calls from parents using Parent/Child Interaction Therapy (PCI, developed at the Michael Palin Centre) where they have not seen any progress. It is useful then to be able to say "have you tried Lidcombe/PCI instead?". If nothing else but Lidcombe were used because nothing else had an evidence base, then there will never be an opportunity to develop an evidence base for any alternative.
Speaking up against a monopoly is a fairly simple choice to make for BSA. But, looking at the Australian scenario, what if the Department of Health were to say "We will centrally fund a system where every child is screened and every child who stammers is guaranteed to be assessed within a fortnight, and guaranteed to get therapy by a Lidcombe specialist starting a fortnight after that should they need it, because the evidence tells us it's effective". This would be a service far superior to that which many children who stammer receive today. Would BSA welcome that? And just like that, the choice becomes rather less clearcut. I think we can all rest assured that the chance of the DoH coming up with extra cash for speech therapy are such that we will never have to face that choice.
Why are chickens coming home to roost? For the longest time, Australians have invested heavily in research, especially in terms of effectiveness of therapy. Large-scale studies, lots of money involved. Nothing like this ever happened in the UK. Where the Australians (and North Americans) have many studies often with large numbers, we have few, mostly small-scale studies. This isn't a judgment on the quality of the researchers but largely a question of funding (and of the restrictions on therapists working in the NHS).
As I said in an earlier post, we need research to tell us
- is this approach more effective than just "wait and see", ie do children going through the treatment programme show a significantly higher rate of recovery than one would normally expect?
- does this approach work for most pre-school children, most of the time, with most SLTs, to recover fluent speech?
- if recovering fluent speech is not an option, is the approach demonstrably showing a reduction in stammered speech, and
- does this approach demonstrate that children can be prevented from developing the psychosocial maladaptations that stammering often brings with it?
In one of the responses to the Australian proposal I have read the view that evidence isn't just published, peer-reviewed research, it's also the feedback from the parents and the observed outcome for the child. Maybe. But the final two in my view are only evidence for clinical decision making. "The parents like it" is not necessarily evidence for allocating resources in a cash-poor healthcare system.
At the moment we will have to wait until September when the NIHR research assessment on effectiveness of stammering therapy is being published - it will tell us what the evidence base is. In a healthcare system like the UK, where Commissioners are asked to decide to spend £50,000 on speech therapy for children, we have a problem. Mainly because that decision in turn means the £50k is not spent on, for example, caring for the feet of people with diabetes where there's evidence this works and prevents severe (and costly) problems later on. I already know of NHS Trusts who have removed their school-age stammering service because 'there is no evidence it is effective'. We know it is effective. We know the positive impact therapy has on children who stammer. But without solid evidence demonstrating that, the chickens have started roosting a long time ago. They're hatching.
It’s just a week or so since I was at the Edinburgh Open Day organised by the Scottish Stammering Network – and what a good memory it is!
Open Days are when people who stammer can meet other people who stammer, sometimes for the first time. It is when we can share experiences about living with a stammer, about what works for us and what doesn’t work, what gives us strength, and renew our courage and our hope.
Everyone comes as they are: some looking for fluency and ways to deal with shame and fear, some believing that the ancient wisdom of the world will help them, some putting their faith in prayer and meditation, some wanting to try out the latest fluency apps on their smartphones.
Open Days are where people get the chance to pick up a microphone and tell their stories – it’s like hearing the climax of The King’s Speech over and over again. It’s where we hear genuine communication with falseness stripped away – including the falseness involved in searching for perfect fluency.
Speech therapists come as well, to share their expertise or just to have the chance to meet people who stammer outside the clinical environment. SLT students find themselves moved at the struggles and courage of those they are being trained to help – the students are always lovely people, full of kindness and hope.
A good Open Day leaves everyone feeling empowered, ready to go back into the world next day and take on the challenges of speaking out. It can also be the launch pad for a local self-help group.
This Edinburgh Open Day ticked all the boxes. It was a real credit to the organisers, and such a worthwhile thing to have done. You can see more about on the Facebook page of the Scottish Stammering Network. If you live in or near Scotland, try and make it to one of their other Open Days.
The UK as a whole needs more Open Days, and BSA is here to help that happen. If you think you might like to organise an Open Day, just contact the BSA Office. Norbert and the team will do the best they can to help you, including putting you in touch with people like myself who have organised Open Days in the past and have templates you can use. We should even have an “Open Day Organisers Guide” out soon!