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.
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!
"T-This is what I sound like when I speak for myself. This is what I sound like". I recoil from the sheer vocal power after listening to Erin Schick's performance poem on stuttering. It's brave, open, honest, and most importantly proudly stammered.
Her poem, to me, encapsulates the growing movement of dysfluency pride. A term I first heard at a workshop at the Glasgow BSA conference run by Sam Simpson and Katy Bailey (see also this video of Sam, Katy and St John at the Oxford Dysfluency Conference talking on this subject). It was news to me: stammer’s taking pride in their speech impediment? Have they lost the plot?
However, having read into it a bit more, I have tempered that view. Dysfluency pride/stammering activism is a movement taking strength from the disability rights movement and the social model of disability, that sadly seems to have passed stammering by in the most part. The disability rights movement led us away from seeing a disability as an individual defect but rather a form of social discrimination against certain types of human variation. For example, under the ideas of the movement, a person who needs to use a wheelchair is only disabled when society assumes the ability to walk and therefore disabled access is not provided. People who use wheelchairs have demanded society remove this assumption with a consequent increase in buildings accessible to all.
Taking this premise, stammering is only a problem because our culture values, and potentially sometimes demands, fluent speech. What right does society have to expect fluent speech from us when we are not able? What happens if we start to reject this value and demand on fluent speech?
What if, rather than hiding our stammer to appease society’s demands we fight for our right to stammer? This is the thought behind dysfluency pride.
The strongest voices of this approach are to be found in the United States, with the provocative blog Did I Stutter and the podcast StutterTalk. These both recently combined for two powerful but controversial podcast episodes, fascinating listening if you are interested in the topic. To take this view of pride in our stammers into our lives may a be a significant mental challenge after years of fluency chasing. Well, it is in my case anyway. If you look to the media, nearly all stories about stammering contain that word overcome. A pervasive view of stammering in society is as a defect that is there to be defeated; we can so easily internalise this view.
Dysfluency pride is looking for individuals to question this opinion of society and take a much more empowering view of their speech. Already many forms of therapy aim for clients to accept stammering but dysfluency pride wants us to flourish with it. It wants us to stand up and question the current fluent values of society, to stammer loudly and proudly, to show society what we sound like.
Great meeting of the South Wales Stammering Network in Cardiff last night! There were 11 of us there – the biggest number we have had for a long time. Some old friends turned up again, and it was wonderful to see the progress they had been making in their lives over the past couple of years. The Group was not the cause of that – the achievement was theirs – but we know that we made a difference.
Someone told us how he had gained fluency – enough to make him a sought-after committee chairman – through deciding not to worry about stammering. When the worry became less, so did the stammer. He was wise enough to tell us that he knew his way would not work for everyone, but I know that many of us took away something useful for our own lives. I certainly did.
Then there was that extraordinary moment, which still tends to make me break up – when someone has the courage to come along to a group like this and, for the first time in his or her adult life, opens up about stammering with other people who stammer. As usual, their reaction was partly one of disbelief: “You stammer, like I do, and you are nice people who have found a way to live your lives that gives you a sense of purpose and pride??? Maybe I can do the same ….”
We are so, so, so much bigger than our stammering – it is just a tiny facet of who we are (even if we sometimes feel it colours everything). It’s just that we need other people to tell us so. And that’s why I am so pleased to be part of a stammering support group.
Just a footnote – now that Arwel Richards has started another support group in South Wales, we might have to change our name. We will have to put an “East” in there somewhere!
Link: South Wales Stammering Network page on this website.
The recent departure of BSA’s fundraiser got me thinking about fundraising. I have heard it said that charity fundraising, in our current economic climate, is like running up a steep hill with a sack of coal on your shoulders.
However, raising money for stammering adds an extra sack. Why is this I wonder?
Awareness and understanding of stammering are improving but are still at a relatively low level. The myths about stammering seem to be deep rooted and widespread. This being the case it is not surprising that empathy for stammerers may be lacking and donations hard to generate. BSA works tirelessly to improve awareness and understanding of stammering and dispel the myths but it can only do so much with its limited resources.
My New Year’s wish is for BSA and the stammering community to work together to educate people about stammering and help remove the extra sack of coal from the shoulders of BSA’s new fundraiser. Together we can move mountains.