Let’s talk about stammering – What I have to say is worth waiting for…
Charlotte Wilkinson – Highly Specialist Clinical Physiologist (Neurophysiology)
Evelina Children’s Hospital
“You don’t need permission to be who you are from anyone but you”
Julie Lythcott-Haims
Author activist
Saturday 22nd October was ‘International Stammering Awareness Day’ – a day very close to my heart. Every year, stammering communities come together to challenge negative attitudes and discrimination; and to debunk myths that people who stammer are nervous or less intelligent. I’d like to take this opportunity to raise awareness of stammering within the NHS and specifically within the field of Neurophysiology.
Stammering, also sometimes referred to as stuttering, is a relatively common speech problem in childhood, which can persist into adulthood. It’s estimated that stammering affects around 1 in 100 adults in the UK with men being around 3-4 times more likely to stammer than women. Only 1 in 5 adults who stammer are women. [1]
If we apply the above figures to the current NHS workforce statistics, the number of people who stammer within the NHS could potentially equate to around 13,500. Not an insignificant number!
In more than 90% of cases, stammering begins early in childhood with no apparent cause when children acquire speech and language skills, (developmental stammering); for others (and much more rarely) stammering is acquired later in life, such as following a brain injury.
STAMMERING FACTS – [2]
- About 8% of children will stammer at some point. For the majority of children, this will be temporary.
- Up to 2%* of people will stammer into adulthood.
- Stammering can run in families. Around 60% of people who stammer have a relative who stammers or used to stammer.
- More men than women stammer.
- People of all ethnicities can stammer.
- People do not stammer because they are less intelligent. It has nothing to do with personality types either.
- Like other neurological conditions, it covers a spectrum. Everyone stammers differently and to different degrees.
- Stammering is variable. People can stammer less on some days and more on others. They might also have periods in their life when they stammer less, and periods when they stammer more.
What is stammering? [3]
A person who stammers may:
- repeat whole words, e.g. “and-and-and then I left”
- repeat single sounds or syllables, e.g. “c-c-come h-h-here mu-mu-mummy”
- prolong or stretch sounds, e.g. “sssssssometimes I go out”
- block, where the mouth is in position, but no sound comes out
- look as though they are tensing up or pushing hard. Often this can be seen around the eyes, nose, lips or neck but it can be seen anywhere in the body
- try to physically push the word out by making other movements. e.g. stamping a foot, shifting body position, nodding their head or jerking their head to one side, screwing up their eyes, tapping with a finger against something, clenching a fist or making other gestures with their hands.
We don’t know exactly what causes stammering, but research is showing that it is neurological. This means that the way speech is produced in the brain is different for people who stammer. [2]
My journey – How I learned to embrace my imperfection
I developed a stammer at the age of 8. I moved school around this time, which may have been a contributing factor but there was no clearly defining moment. My early recollection was that I very slowly lost my voice. My stammer slowly crept in like an unwanted guest. I recall reading aloud with my teacher one day and I unexpectedly stumbled on a word. This took me by complete surprise. Over the course of a few months, I found that I was struggling to say more and more words and would have major, unrelenting ‘blocks’ on sounds. My throat would tighten, my face would contort, and I felt as if I was being suffocated by my own body. My palms would bear the marks of my fingernails digging into my skin and my face would go bright red as I frantically tried to release my voice. I also developed quite overt head movements as I tried to push out my words.
By the time I was 10, my stammer had tightly taken hold and I became engulfed with anxiety and shame. This was largely due to the negative experiences I encountered on a daily basis. During my teenage years I did everything in my path to hide my stammer and avoided any kind of speaking situation. I withdrew from social situations, refused to use the telephone, and would get friends or family members to order food in restaurants/cafes. Speaking for me was at times like running a marathon – it would often take me 5 minutes to eventually say just one word and the fear and anxiety I experienced would be off the scale. The act of speaking was a traumatic and emotional struggle and I resented how easy it came to everyone else! Unsurprisingly, I found it difficult making friends and my school years were largely entwined with loneliness and shame. Thankfully I had an amazingly supportive family and sought refuge in my dancing lessons. Dancing gave me the escape I needed to express myself and I was never happier than when I was performing on stage. I undertook years of speech therapy which would help with the mechanical aspects of my speech, but I never really felt that it dealt with the underlying fears and emotions which go hand in hand with stammering.
I spent years of my life believing that speaking fluently would lead to success. This belief was only further engrained in my emotional make up as I embarked upon the impossible task of choosing a career. At 16, my biology teacher thought it was…“best that I didn’t pursue my desire to work in healthcare” as…“how could I effectively communicate with a patient?” Determined to prove her wrong, I obtained the grades I needed to study Physiotherapy at University and left the comfort of my family home to step into the big bad world. My time at university however did not end how I had hoped and after gaining top grades in my first year, I failed to finish the course due to the overwhelming abundance of oral examinations, role play scenarios and clinical placements. My speech was tested to its utmost limits, and I feel that I did not receive the understanding or support from university tutors required to complete my assessments. Giving someone who stammers extra time to do a presentation or oral examination is simply not enough to enable them to demonstrate that they do indeed possess the necessary skills and knowledge.
I returned home after university feeling anxious about where my life was heading. I wondered whether I would ever actually succeed in fulfilling my dream of working in healthcare. Thankfully, after a life changing spot in the local newspaper, I applied for a position as trainee MTO in Neurophysiology. The interview was as expected… a bit of car crash but I am eternally grateful for the kindness and humility shown by the people on the interview panel who saw something worth investing in. I successfully got the job, and these people later became my colleagues and manager. My time as a trainee and junior physiologist was overall a very happy and exciting period in my career. I continued to have daily struggles with my speech but fortunately I had a wonderfully supportive team who gave me the confidence and resilience to carry on.
In 2008, my speech and subsequently my confidence and mental health took a dramatic decline. It reached a point where I would have regular anxiety attacks and felt unable to effectively interact with patients or colleagues. I would frequently shut myself away in the toilet, praying for the day to end. I seriously considered leaving the profession and began to make plans to take off somewhere… anywhere where I didn’t have to talk to people. Fate stepped in one day when I had my performance appraisal with my manager, and she noticed I wasn’t coping. To cut a long story short, she took the initiative to send me on an intensive speech therapy course, called The McGuire Programme. I went home, packed my bag, tearfully said goodbye to my parents and embarked on the intensive 5-day course. The rest is history… I met my husband, successfully obtained my dream job in London, and began to feel that things were looking up. I began to believe that speech impediments need not stand in the way of pursuing your career goals however hard they appear to achieve. The McGuire Programme helped me to tackle the underlying, negative emotions associated with my stammer and took me on a journey towards self-acceptance.
I’ve been desperate for ‘fluency’ so many times, and not being able to say what I’ve wanted to say has really affected my self-confidence and esteem through the years. Self-acceptance has been the overarching tool which has led me to a more fulfilled life both personally and professionally. I no longer try to hide my stammer and perceive it as a positive attribute to my personality. My stammer no longer defines me! I owe a great deal to past and current managers and colleagues who I have had the pleasure to work with. Without their support and encouragement, I wouldn’t be where I am today.
One key message to convey is that being open and honest about my stammer has been instrumental in relieving fear and anxiety when faced with challenging situations. Trying to hide the difficulty from the start only made things worse. Being open and honest with patients and colleagues has led to more meaningful interactions. It has also helped me educate those around me about stammering.
I am grateful that having a stammer has given me many positive attributes. I seem more attuned to patients and relatives with their own speech difficulties and can adapt more readily to different clinical situations. This is particular true in my specialist field of paediatrics. Children have this amazing ability to see you for who you are. They are non-judgemental and accepting of any little quirk or difference. They ask questions and are enlightened by the answers they receive. I have greater levels of empathy, patience and sensitivity and understand some of the struggles my patients with complex learning and communication difficulties may have.
I still have a way to go to achieve total self-acceptance and still experience ‘difficult speech days’. The difference now is that I put those days behind me and move on. I hope to serve as a role model to young patients, or those wanting to pursue a career in healthcare to show them that people with communication disorders can achieve great things.
So, how can you help?
Managers and colleagues play an important role in creating a supportive and inclusive workplace environment for people who stammer or have other communication differences. How people react when speaking with staff who stammer can either have a positive or negative impact on their colleague’s work, their self-confidence and self-esteem.
There is now a fantastic resource for employees and managers working within the NHS; https://nhsstammeringnetwork.uk
It is run by a small leadership team, all of whom have stammers. I have recently joined this network and hope to one day become a mentor for the programme. The network provides practical advice, support, and information on stammering, including easy access to useful resources. It offers recommendations on how to support patients and staff who stammer, in addition to workplace mentoring.
Below are some top tips for supporting staff or patients who stammer, [4]
- Natural eye contact
- Don’t jump in or interrupt – try not to finish their sentences
- Don’t offer advice
- Beware of your own reactions
- Group introductions may be challenging – people who stammer find saying their name particularly difficult
- Be mindful if your colleague is quiet
- Flexible approach to communication in the workplace – allowing the person who stammers to conduct telephone calls in private
- Ask your colleague in private
- Don’t make decisions on behalf of your colleague
- Offer special leave – i.e to attend speech therapy courses
Other sources of help within the NHS;
- Occupational health departments
- Employee assistance program (EAP)
- STAMMA – The British stammering association
In addition to the above there is a useful document produced by The Employee Stammering Network, (ESN), in collaboration with the Employers Network for Equality and Inclusion. This document provides practical guidelines on how to support staff who stammer and gives some helpful tips on how to conduct interviews. [5]
https://nhsstammeringnetwork.uk/wp-content/uploads/2021/03/Understanding-Stammering-Guide-For-Employers.pdf
Some key tips for providing more inclusive interviews for people who stammer may include.
- Having longer to speak, offering role play scenarios or considering written as well as spoken information.
- Avoiding telephone interviews where possible. The lack of visual communication cues can be very unnerving for people who stammer.
- Offering an informal individual chat as an opportunity to all candidates before the interview itself.
- Consider the use of language in your job advertisements – The term ‘excellent verbal communication skills’ may potentially prevent those people with speech and language difficulties from applying for the position as they may be concerned their communication skills are not good enough. Try to use the phrase ‘flexible/effective verbal and non-verbal communication skills’.
Stammering can now be classified as a disability under the Equality Act 2010. If you know a candidate has a stammer, or could be expected to know, you may be legally required to make reasonable adjustments in your recruitment process. It may be beneficial for you discuss these reasonable adjustments with the candidate prior to their interview. [2] You can access the following link for further information on stammering and UK discrimination law. http://stammeringlaw.org.uk/
Moving forwards – Small steps on the road to inclusivity. Ut
We all need to tackle unrealistic societal views on what it means to be an effective communicator. We should allow those who stammer to ‘be seen ‘and ‘be heard’ so that they are no longer ashamed to speak out. As healthcare professionals we need to challenge the stigma surrounding speech impediments and embrace the diverse ways people speak. By raising the awareness of stammering within the NHS we can ensure that our workforce is truly supported and improve the provision of healthcare for everyone involved. Net
There is progress to be made in the NHS to make the workplace a more inclusive environment for people who stammer. Marks and Spencer have recently introduced a stammer symbol to their employee badges to indicate that a person with a speech impediment my need time and patience. https://www.bbc.co.uk/news/uk-england-hampshire-62562601
Could the NHS adopt a similar approach?…
One of my favourite quotes comes from an inspirational woman and author, Katherine Preston who wrote ‘Out with it – How stuttering helped me find my voice’ 2013;
“After years of coming to grips with a different kind of voice, with a different kind of life, I have learnt that it is our imperfections that ultimately make us beautiful.”
May you all embrace your own imperfections…
Thanks go to all of the wonderful colleagues and managers who I have had the pleasure to work with over the last 22 years. I’d also like to say a special thank you to Tracey Barlow who has played such an instrumental role in my journey.
References and links for further information:
[1] https://www.nhs.uk/conditions/stammering
[3] https://michaelpalincentreforstammering.org/
[4] https://nhsstammeringnetwork.uk
[6] https://mcguireprogramme.com/
[7] https://www.starfishproject.co.uk/