Wednesday 18 July 2012

PoliticsUK interviews Leys Geddes, the Chairman of the British Stammering Association.


PoliticsUK interviews Leys Geddes, the Chairman of the British Stammering Association.


    • Politics UK
      PoliticsUK would like to welcome Leys Geddes, Chairman of the British Stammering Association.

      Good evening Mr Geddes, could you first tell us how you became involved in the British Stammering Association?



    • Leys Geddes
      I first became involved in 2002, when I was at a speech therapy session at the CityLit and Rachel Everard, and the then Chair of the BSA, told us about it. I decided to join because I had had some tough experiences with my speech, but a lot of experience in healthcare marketing, dealing with hard-to- discuss conditions.



    • Politics UK
      How many people in the UK are affected by stammering?


    • Leys Geddes
       Around 750,000 people stammer. Within that rather large number, it’s generally accepted that 5% of children under the age of 5 will go through a phase of stammering at some stage. Across the whole of Britain, that’s around 188,000 pre-school age children. Up to a quarter of them are at serious risk of developing chronic stammering, which may persist into adulthood without therapy during the pre-school years. Around 1.2% of all school-age children stammer. And 1% of the adult population stammers - that's around 459,000 adults in Britain. About 3.5 to 4 men stammer for every woman who stammers. Stammering does not appear to be increasing or decreasing. Research studies indicate that these figures are consistent worldwide and that stammering occurs across all cultures and in all social groups. But don’t forget that stammering doesn’t just affect those who stammer, but often has an effect on people they know. Parents of stammering children, for example, are often very surprised when an apparently perfect child suddenly starts to stammer – they need a lot of help to understand why and to know what to do about it. See http://www.stammering.org/expertparent/index.html

      www.stammering.org
      In this primary school resource, and the pre-school and secondary school resourc...See more


    • Politics UK
      Do you believe that the British public needs more education on the effect of stammering?


    • Leys Geddes
      Yes, for sure. In many ways to have a difficulty in talking is just as life changing as a difficulty in walking - and possibly even more so, because, in this hurry-hurry media dominated world we are increasingly defined by how we talk, and how we communicate. Yet very few people know that the root cause of stammering is a neurological condition and few know there is nothing on the immediate horizon that you might describe as a ‘cure’ but many (including some in the media) still think that it’s OK to laugh at us. Great steps have been taken to help those who, for example, have a mobility disability and use wheelchairs, or those who are affected by dementia – both of these conditions, incidentally, affect around the same number of people as stammering. I once attended a council planning meeting where everything had been done, rightly, to provide easy access for those in wheelchairs, but my request for a little extra speaking time was refused point blank. To educate the public, we need two main things: a lot of money and more high profile stammerers who are prepared to speak out and support our cause.



    • Politics UK
       My child has just been referred to a speech therapist. I have been told that the waiting list is two years. What can I do to help my young child (she is 5)?


    • Leys Geddes
      Yes. Refer your child to another speech therapist. You don’t need to be referred by a GP or the like any more. If you are still having trouble, contact the BSA at www.stammering.org The BSA is a great supporter of the need for the NHS to provide universal speech therapy, especially for young children, but it may be that it is necessary to consider going private.

      www.stammering.org
      Your first point of contact for impartial information and support on stammering, also known as stuttering.


    • Politics UK How important is early treatment of stammering?


    • Leys Geddes Vital. Speech and language therapy has proved to be most effective with children aged below 5 years old. We estimate that if the problem is caught early enough (before psychological issues of anxiety and self consciousness arise) then around nine out of ten young children will learn to speak fluently again with no evidence of recurrence. The longer a child goes on stammering, and the older it gets, the less likely it is to fully recover.



    • Politics UK
      Can you explain what SLT is?


    • Leys Geddes
      An SLT is a Speech & Language Therapist. These are highly trained healthcare professionals who work with a huge variety of conditions and people – from those who stammer to those who, for example, are recovering from stroke and other brain injuries. They aim to help not only by improving communication abilities but also by addressing swallowing, eating and drinking difficulties. Not every SLT specialises in stammering.



    • Politics UK
      What effective treatments are available for those who stammer?


    • Leys Geddes

      Speech therapy is the main treatment, and it generally consists of two things. Firstly, helping to come to terms with the stammer and ‘accept' it, as opposed to trying to hide it or feel ashamed about it. This helps the patient to relax and make him or her feel that they are not alone, unsupported or misunderstood. Secondly, teaching techniques which help deal with the symptoms of stammering, the blocks, where no voice comes out, and repetitions of sounds. In some cases, this might be described as almost learning new ways to speak. Most speech therapy is provided by the NHS, free of charge, but there are also private SLPs and private therapy organisations, such as Mc Guire and Starfish. Some people have found that devices have been helpful - such as those which give the effect of speaking in chorus, by playing back in your ears a slightly delayed recording of your voice.




    • Politics UK
      Do you believe that there is enough support available to assist those who stammer to get into employment?



    • Leys Geddes

      No. Too often teachers, employers, parents and stammerers themselves believe that, if you stammer, it will not be possible to get a ‘good’ job - generally thought to be one where a lot of speaking is necessary. This can be particularly distressing for those who are very well educated. So a lot of stammerers seem to go into jobs such as IT or accountancy. On the other hand, it has been estimated that about half of the prison population has a speech and communication disorder of some kind, with many more than the 1% norm stammering. In all these cases, it is important to understand that people who are not fluent speakers can be good communicators. With the growth in the numbers of Equality & Diversity people in larger companies’ HR departments, there is some hope that stammering will be better understood and better supported. The employers’ aim should be to create a culture in which everyone with communication difficulties can achieve their full potential. A lot has been done so far to overcome sexual and racial discrimination in the workplace and to help those with mobility, sight or hearing difficulties. But, as stammering is so often a ‘hidden disability’, we need to do a lot of work and to encourage a lot more stammerers to feel that they can ‘speak out’ without this affecting their career prospects. There are some inspiring stories about people who have ‘got on’ despite their stammering.




    • Politics UK
      Do you believe that the economic climate has affected the services that help people with speech impediments/stammers?



    • Leys Geddes

      Yes, undoubtedly. The Government asserts that the NHS budget is ring fenced and not being cut, but this actually means a minimal annual increase of less than 1%. This does not protect the NHS from general inflation, and even less from health cost inflation, which is higher than normal increases in the cost of living due to, amongst other things, more costly treatments and an aging population. In addition, the NHS in England is facing the so-called Nicholson Challenge which is obliges them to find £15bn - £20bn of ‘efficiency savings’ over the next few years. Meeting the Nicholson challenge in the face of an overall effective cut in the NHS budget would have been difficult enough. However, this comes at a time when the Government has also been announcing plans for a massive restructuring of the service. So the state of stammering services in many parts of the country is worse than at any time in BSA’s history. As a result, around a third of PCTs in England no longer offer an adult service.




    • Politics UK
      What is your view on the proposed NHS reforms and how would this affect the effectiveness of the treatment of people who stammer?



    • Leys Geddes

      In addition to the low level of interest in stammering and the effects of NHS budget ring-fencing, the BSA is very concerned about the plans for GP consortia to commission community health and other services for adults and children in their locality. GPs, as primary healthcare professionals, generally have very little training in childhood speech and language development. In her recent report, Jean Gross, the recent Communication Champion, highlighted the fact that, according a recent survey, out of all childhood SLT referrals in London, only 9% come from GPs. What’s more, GPs are unlikely to review their commissioning practice regularly in line with the needs of the local community and are much more likely to commission services on the basis of what they commissioned in previous years. BSA (and others) are deeply worried that GP commissioning may mean the end of most specialist stammering services in England. There is also the issue of democratic accountability. For example, a parent in Newham of a school-age child who stammers has no recourse when the commissioners decide to simply cease the service on which they and their child rely on. Neither do local councillors. Neither does the local MP. The Department of Health may have views on what services need to be delivered but in the end, when pressed, they will reply with the statement that ‘it’s down to the local providers to make the decision’ and they have no statutory power to ensure that certain services are being provided locally. There’s a big issue for Politics UK!




    • Politics UK
      Does the BSA agree with the outsourcing of services from the NHS?



    • Leys Geddes

      It depends on the quality and quantity of the services provided. If it makes the service for stammerers better, then that will clearly be A Good Thing. So it’s too soon to say. However, a number of community health services (the normal providers of NHS stammering therapy) have been put out to tender and are already run by private companies. It’s clear that local services run by social enterprises (basically cooperatives often set up by the medical and nursing staff) will only be an interim arrangements unless such a social enterprise can grow sufficiently to hold a number of tenders and that the future in community health is one where, in addition to the public interest (sticking to the budgets) and the patient’s interest (good outcomes for health), there’s now also the need to consider the interests of the shareholders who want to see a financial return. The impact these tendering arrangements have on speech and language therapy services, especially specialist stammering services, is as yet unclear. Also, with many areas of the country now not commissioning stammering therapy, universal provision of NHS speech therapy for stammering no longer exists. An integrated service (for example, stammering therapy through health and support through education for a school-age child who stammers) will, we fear, be more difficult to achieve under the new system.




    • Politics UK
      “The Giving Voice Campaign of the Royal College of Speech and Language Therapists has identified that speech and language therapy services all across the UK are facing cuts”.
      Do you agree with the “The Giving Voice Campaign” assessment and how hard with these cuts affect those who stammer?




    • Leys Geddes

      Yes, we are great supporters of the Royal College of Speech and Language Therapists’ Giving Voice Campaign. Its purpose is to allow RCSLT members and their service users to demonstrate ‘the unique, life-transforming and cost-saving work of the profession’. We agree when they say that it is ‘more important than ever that speech and language therapy is understood and valued by colleagues, service users and the public’. As I’ve said earlier, about a third of PCTs in England no longer offer a service for stammering adults. The NHS budget mat have been ring fenced but the need to make ‘efficiency savings, the restructuring of the NHS and the fact that some SLTs are losing their jobs in the NHS are not good signs.




    • Politics UK
      Is it true that there are regions/areas in England have ceased providing services for adult who stammer?



    • Leys Geddes

      Yes, it’s sometimes difficult to know exactly what is happening all over the country. The situation seems to change daily. But the BSA’s NHS Therapy Services database monitors the ongoing deterioration in services. The evidence on services for children who stammer – at any age – is that therapy is highly effective in terms of their social development, their confidence and their education. At the moment, there is one NHS Trust (Newham) that no longer commissions services for children who stammer over the age of six. Mid Essex Trust (Chelmsford) no longer commissions services for secondary school-age children over the age of 11. Services will simply cease once a child reaches that age. In cases of exceptional severity, a case can be made for referral to the Michael Palin Centre (MPC) in London – the paperwork for this is very time consuming. Equally, the London Borough of Wandsworth no longer treats children over the age of 11 who stammer, although there a referral to the MPC is a much simpler process. The situation for adult services is even worse. While there are still areas of the country where, overall, local provision for adults who stammer is quite good (South and West Yorkshire, Humberside, Liverpool, a few parts of London), many areas have ceased providing services altogether. We estimate that about 60% of London no longer has a service for adults. Three out of four speech therapy departments in Surrey no longer commission services for adults. Hampshire does not provide services for adults and neither does East Sussex. In recent months, both Lambeth and Tower Hamlets have stopped providing a service for adults who stammer. This means that in areas where adult stammering services are no longer commissioned, people who stammer will simply not get a service - unless they pay to go private.




    • Politics UK
      What is an AQP?



    • Leys Geddes

      An AQP is Any Qualified Provider. The Government is rolling out the AQP scheme, in which health services can be commissioned by providers from those who fulfil certain criteria in terms of qualifications and standards of delivery and outcome. The NHS will set a tariff for every procedure and anyone who feels they can deliver the set outcomes will be able to compete for this on the basis of the tariff. This is not a tender, because more than one provider can compete for clients/patients in any one area. But I’ve just heard from Norbert Lieckfeldt, the BSA CEO, that plans to introduce AQP for speech therapy have been abandoned. His guess is that it would have been too complex at the moment and too time-consuming for the Department of Health to set up quickly. Norbert goes on to say that the problem with commissioning is increasing granularity (not just for NHS trusts, but also for education departments and, increasingly, also academies or clusters of academies and individual schools). In future, this may also affect parents with personalised budgets - though probably not for children who stammer.




    • Politics UK
      Would you agree with the Government introducing AQP into speech and language therapy for children and young people?



    • Leys Geddes
      I think I answered this question above.



    • Politics UK
      Does the BSA receive government funding?



    • Leys Geddes

      No longer. We’ve had various grants from the Government over the years, the last of which was £95K, from the Department of Education, which ended in the financial year 2010/11. As you might imagine, that had a big impact on our finances. But, if you talk to GPs and practice nurses, as I do, and ask them if they get patients who stammer, all of them in my mini sample have said ‘No’ - and several have said ‘No, there’s probably a charity which looks after that...’. There are many misconceptions about stammering - mostly around the idea that we stammer because we are nervous, shy, weak, have psychological difficulties or suffer from some strange character flaw. We are not ideally equipped to stand up and change all this, but a great deal of educating needs to be done before people - and governments - give our condition the respect and understanding it deserves. So it will take us a long time, and a lot of hard and brave work, to change that situation, get more money and, very importantly, to encourage more stammerers, and particularly more high profile stammerers, to speak out and support our cause.




    • Politics UK
      What are the future plans of the British Stammering Association?



    • Leys Geddes

      Well, we have a massive job to do and very little money to help us do it. So our plans are governed by our financial situation and the number, and the visibility, of people who are prepared to stand up and help improve the understanding of stammering. We desperately need a louder voice in order to get more support from Government, the NHS and society in general. As I’ve said elsewhere, last year UK society gave around £20M to the Donkey Sanctuary and about £100K to the BSA. There is nothing wrong in people giving money to the Donkey Sanctuary, or any other animal charity, but it demonstrates how it is possible to show a picture of an animal, which has been harmed by our fellow human beings, and to engender a wave of emotional and financial support. It’s not yet possible to do that with stammering. One picture will not do it. It takes a good half an hour to explain stammering and start to overcome the misconceptions. So our plans are, firstly, to continue to provide information and support for those whose lives are affected by stammering and, secondly, to pursue our vision of a world which understands stammering. We have, as some of you will know, a Facebook page at http://www.facebook.com/stammeringbsa our main website at http://www.stammering.org/ our Expert Parent site at http://www.stammering.org/expertparent/index.html and our Stammering In Education site, which is mainly for school staff, at http://www.stammeringineducation.net/ And if you would like to contribute to our work, please go to http://www.stammering.org/donate.html where there is a full explanation of how your money will be used.



      The British Stammering Association (BSA) is the only charity in the UK offering ...See more
      Page: 2,930 like this.




    • Stephen H O'Hanlon My kid have a stammer. Its heartbreaking, she is just started school. She sees a speech therapist but with little success so far.

      What advice would you give me.




    • Jack Barker I know one of the few MPs who has a stammer is Ed Balls. I know you have met him. Has he spoken to you about his stammer? How has he managed to speak fluently throughout his speeches, such as in parliament?


    • Jack Barker
      How does the BSA plan to use social media to raise awareness about stammering?



    • Jack Barker
      What is your opinion on George Osborne apparantly mocking Ed Ball's stammer in Parliament last year? http://www.newstatesman.com/blogs/the-staggers/2011/02/balls-osborne-chancellor

      www.newstatesman.com
      Current affairs, world politics, the arts and more from Britain's award-winning magazine


    • Chloe De Vries
      Has Ed Ball got a stammer? Osbourne is a sick man for doing that.



    • Ray Worster
      When are politicians going to face up to the day to day discriminations of stammerers.
      While we can all laugh at Ronnie Barker in open all hours not a lot of stammerers can laugh at themselves.
      Also when are we going to stop bullying in schools should head teachers be taken to court for turning a blind eye to discrimination within schools.


    • Leys Geddes
      So sorry to hear that, Stephen. Keep at it, but if you are not happy, find another SLT.



    • Danielle Hoynes Smith
      This has been very interesting Leys, thank you. I work in Early Years and we have a number of children with speech difficulties in our setting. Do you think all parents should be offered training in speech and language development?



    • Alan J B Wyllie
       Leys has had slight browser problems. He will answer the questions in a sec or two.



    • Leys Geddes
      Ed Balls has been very open about his stammer since he came out at the BSA reception at No 10 in 2010. He says he can't read scripts and has to ad lib! John Bercow told me that sometimes, when he gets stuck in the House, other MPs have shouted 'Come on, man, spit it out!'.
      4 July at 20:59 · 

    • Jean Eveleigh
      my mother had a speech problem all my life she was often accused of being drunk is this normal for adults and are sociatle attitudes changing after the success of "The King's Speech"



    • Leys Geddes
      Social media is very good for stammerers, most of whom love the internet because it puts them on equal terms with fluent people. But, for it to work more effectively, we need to get more fluent people reading our posts!



    • Leys Geddes
      We will begin to stop all that, Ray, when we have a louder voice. I wish we had 100 like you, who know your stuff and are prepared to speak out. Actually, a 1000 would be better...



    • Alan J B Wyllie 
      "John Bercow told me that sometimes, when he gets stuck in the House, other MPs have shouted 'Come on, man, spit it out!'"

      Dear lord..and these people are allowed to govern this country.




    • Leys Geddes
       People do still mock stammering. It's about the the only disability people still mock. The last very public instance was Roy Hodgson's Rs (careful how you say that): http://www.youtube.com/watch?v=jNAxo_7mOFM


      Roy Hodgson, the England football manager, has a rhotacism - the inability to pr...See more



    • Jack Barker
      How important was the King's Speech in raising awareness of stammering?



    • Ray Worster
      Like many members of the speaking out team I do a lot of public speaking mostly about stammering awareness.
      After every talk I give I always get asked about children stammering and what treatments are available.
      I promote the Michael Palin programme but simply don’t have enough information on the NHS to suitably answer questions.
      I can still remember my time with the NHS wearing an Edinburgh masker, talking in time with a metronome and many other techniques, sadly I have not seen anything that shows the NHS has moved on.
      Who much money does the NHS get for stammering and where foes it goes is my question.




    • Leys Geddes

      The King’s Speech did great things for awareness of stammering, whist it was in the news, and will also have some lasting effects. For example, it gave stammerers, and other people, ‘permission’ to talk about stammering. We have heard of stammerers who have sat in offices with other people for years and never talked about stammering: but suddenly it was OK – everyone had ‘permission’ to talk about this embarrassing subject.

      But the fear is that the film did not do much to improve the understanding of stammering. Those people, probably a large majority, who think that stammering is caused by bad parenting or trauma, is largely a psychological weakness and that it can be cured quite easily, will not have had their minds changed. Many will have overlooked the fact that action took place largely in the 1930s. So it is history and we now know a lot more about stammering. Not unreasonably, many others will think that that now, 70 years later, everyone can surely be cured - after all, there’s a cure for most things these days and they hardly ever see or hear anyone stammering openly in public or in the media.




    • Ray Worster
      Should have said HOW much money



    • Leys Geddes
       See: http://www.youtube.com/watch?v=UwuJklTw-Yw


      The movie did great things for awareness of stammering and the stage play, on wh...See more



    • Jack Barker
      Thankyou Leys for a really interesting interview. As a person who stammers myself, I must say you are inspiration to me with what you have achieved & the fantastic work you do. I hope Politics UK users are now a lot more informed about stammering & the BSA, & I hope also that some BSA members have now joined Politics UK & ar eager to have their voice heard about what we have to do to raise more awareness about stammering.



    • Leys Geddes Danielle, yes, ideally that kind of training would help, but it would cost a bomb. In the UK, Health Visitors check young children to see if they can respond by seeing and hearing, but they do not come back to check speech.



    • Leys Geddes
      Yes, I'm afraid it is, Jean. But I don't think it is malicious, it's just ignorance.