43
issue Spring 2020
The voice of ADDISS - The National ADHD Information and Support Service
THIS ISSUE
Welcome to...
3
GOOD ADHD
TREATMENT
4-5
ADHD MYTHS and FACTS� Know the Difference
6-7 ADHD COACHING is like learning to
RIDE A BICYCLE!
ADDiSS
is the National Attention Deficit Disorder Information & Support Service.
condition, with tools and strategies that help to support a calmer environment at home. Listening to the testimonies of parents who have accessed our service has left me with a ‘warm feeling inside’ and reminds me of the reason that I have worked in community services for the past 24 years.
We provide people-friendly information and resources about Attention Deficit Hyperactivity Disorder (ADHD) to anyone who needs assistance - parents, sufferers, teachers or health professionals. All our activities are supported by our Professional Board of expert advisers.
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CHIEF EXECUTIVE OFFICER Andrea Bilbow OBE
TRUSTEES
Jessica Hyams (chair) Danny Eastman Sharon O’Dell
Jenny Missen Bernadette Ashton Dr Rashmin Tamhne
EDITORIAL BOARD
Prof. Eric Taylor Dr Leon Rozewicz Prof. Peter Hill Therese Glynn Dr Nikos Myttas Dr R Tamhne Prof. Chris Hollis
PROFESSIONAL BOARD
Prof. Eric Taylor Prof. Peter Hill Prof. Ian Wong Dr Daphne Keen Prof. Jeremy Turk Dr David Coghill Paul Cooper PhD Dr Val Harpin Dr Nikos Myttas Prof. Amanda Kirby Dr Maite Ferrin Prof Chris Hollis Dr Ulrich Muller-Sedgwick Dr Paramala Santosh Jane Sedgwick-Muller
DESIGN & LAYOUT Rohan Nosworthy
AD D I S S
Hyde House The Hyde, Colindale, London NW9 6LH Phone: 020 8952 1515 web: www.addiss.co.uk email: info@addiss.co.uk Twitter: @UK_ADHD Facebook.com /addiss
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Meet the Team ADDISS PROJECT MANAGER MAULINE VERNON SHARES HER INITIAL PERCEPTION OF ADDISS VERSUS THE REALITY OF WORKING WITH US FOR THE PAST YEAR. hen I arrived at ADDISS for my interview I was not sure if I wanted to accept the job. My perception of the Charity was that Andrea Bilbow (CEO) was doing some fantastic work in the community but I was coming from a background of working with several large Local Authorities and the idea of working for ADDISS just felt a bit like I would be regressing in my career.
We have delivered ADHD training to teachers in Barnet schools and have successfully developed good relationships with them referring to us for specialist ADHD advice. Children are enjoying school more and are better able to manage anxiety provoking incidents at school.
Following my interview, Andrea called me and we had a long conversation. She was warm and welcoming, and she convinced me to ‘come on board’. I told my family that I was going to give this charity a try for couple of months to see how I felt, “I need growth and development” I told my sister. “Yes, I am motivated by making a difference in the life of others, but I am also motivated by my own growth and development and ADDISS is such a small charity that I am just not sure it is possible there” Oh, how wrong was I? As soon as I arrived, we hit the floor running. Working as Project Manager for ADDISS has been amazing! Much better than I could have imagined. The Barnet Project has reached over 250 families which is in excess of the target which was set at 120 families for the year. Families express that they are feeling ‘heard for the first time’. They feel valued and have a much greater understanding of their children’s ADHD
The ADHD Barnet Project has been a huge success and I am measuring success not just by the ‘number of families through the door’ but by the impact that we are making directly with these families, measured by parent feedback. Parents tell us that they are feeling empowered and informed. They report being more in charge of their house because they have learnt specific parenting skills which have enabled them to better manage the effects of difficult behaviours at home. Parents are making better decisions and creating more loving family environments at home. We have heard comments such as “thank you for giving me my child back” and such comments make everything that we do here at ADDISS worth the time.
We are engaged in a number of European Research projects and we are instrumental in contributing to the direction of ADHD internationally. Attending for my interview just over a year ago I had no idea that I would be afforded the kind of opportunities which include travelling internationally to represent the voice of ADDISS across ADHD in Europe. Andrea Bilbow our CEO is the President of ADHD Europe and she also has an OBE. Both titles to be proud of. Andrea has earned these titles because of her commitment to supporting those with ADHD and offers her time and service to help wherever and whenever she can. I am very honoured to be a part of the growing team at ADDISS and look forward to the next part of the journey for our growth and development as a charity. A far cry from the small charity that I thought ADDISS was at my initial interview! We are a small charity with a big heart doing great things both locally, nationally and internationally.
Registered Charity no.1070827
- Spring 2020
MEDICINE The beauty of being in private service is that we can have control over how many clinics we run, and how often. And that helps us to meet the timings and demands of our patients. Whereas perhaps NHS colleagues cannot. Actually, I don’t genuinely believe this. What allows us to meet our patient demands is that empathy, the fact that we care, we aren’t badly managed to the point where we don’t want to come to work, and we actually enjoy making people well. The biggest drain on NHS resources is staff turnover, people are leaving in droves because they are unhappy at work.
What does Good Treatment for ADHD look like?
By Phil Anderton
I remember many years ago, Dr Tom Brown discussing treatment for ADHD at a conference in America, he was fascinating. He talked of orchestras being conducted by the ADHD brain, and of medicine helping people get satisfaction out of life. He made treating people with ADHD sound so easy. And of course, it isn’t, it genuinely isn’t, but there are, or rather there should be, some guiding principles that make sure treatment is effective and as ‘good as it can be’.
W
hen I am describing good treatment, I am always mindful that ‘good’ is a poor word, our language can do much better than merely use ‘good’. Brilliant, effective, life changing, excellent, are all genuine swaps for ‘good’ in this context. We must accept some principles ahead of looking at treatment and the possible use of medicine. These really should form the mantra of ‘brilliant’ clinical work for ADHD. I am still moved by how many people are in tears when they call me requesting treatment for themselves or their family. I recently took a call from a new patient who cried openly saying “oh my God, you understand, for the first time someone gets me. You’ve made me feel better about myself already!” And what a privilege this is. To have the opportunity to listen, understand and be able to show empathy is the first step on the patient’s own, unique, emotional journey to recovery. This is the core of patient care and we should never miss this stage of treatment out. NEVER! The effect of witnessing this is incredible.
So, what does brilliant, life changing treatment look like? 1. When a patient or their family reach out for assessment they’ve had enough already, they need help. So lets start helping them, right away. 2. When help is provided it should be compassionate, understanding and empathetic. 3. Assessment should be swift and safe, drawing out a process of assessment helps no one except the busy clinician’s diary, and that’s not fair. 4. Treatment should have goals. 5. Treatment with medicine should be assessed against those goals, we should know when ‘we have got there’ for the patient.
Patients need to be seen quickly once they have made the call for help. This is measured in weeks, not years. I was in an NHS organisation recently that had a waiting list of over �� years! I will make you read that again, �� years! There is no way on this planet this could be described as providing brilliant care. We talk a lot of hyperactivity, impulsivity and inattention. But really, what do they matter. How many kids with ADHD turn around and proudly say ‘my medicine allows me to be less impulsive’? Is it not better to identify what the issues are that need to be turned around, capture them as goals and work together to improve them? I am continually warmed when our patients call or text with their stories of success that are wrapped around their goals. Finishing the patio off that’s been half done for � years, colouring in a book for the first time ever, being picked for the team for the first time as I didn’t fight in the changing rooms, the list is endless. And incredibly rewarding for us as a clinical team. We should also always have evidence of improvement for the clinicians and our patients to see. We measure symptoms using common, internally accredited rating scales. They provide results in the form of a number, a value, a ‘score’ if you like. And let’s say on entry into treatment the patient scores �� from a possible ��, and then four weeks later they ‘score’ ��, we all then know we are on our way and doing well. The effect of these numbers when compared and shared with our patients is immeasurable. And there we have them, the core principles of treatment for ADHD. It is my belief that these are available to all clinicians as ‘standards’, anything less is unacceptable. At the end of the day, if we truly ‘care’ we should work and be allowed to work, in a way that shows it. And then our own rewards are greater at work, the patients see belief and passion, and everyone wins. So, if your clinical team don’t demonstrate the core principles of brilliant care, maybe just politely ask them why not?
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ADHD Myths & Facts Know the Difference. For ADHD Awareness Month, ADDISS and ADHD Europe were part of a global coalition to raise awareness about ADHD. The theme for 2019 was dispelling the myths around ADHD, with a focus on explaining the truth about the 10 most common myths. As well as organising conferences up and down the UK with stellar speakers at the top of their field, we worked with experts from around the world to combat these myths. Their articles reference scientific studies, show useful infographics, and are easily accessible online. Contributions came from: Prof. Eric Taylor Prof. Russell Barkley Stephen Faraone PhD Prof. Thomas Brown Michelle Frank PhD ADDA - the Attention Deficit Disorder Association (USA) • ADCO - ADHD Coaches Organisation
• • • • • •
We also launched a new website which provides a condensed version of the facts and links to the longer articles, available at [adhdisreal.org ]
For the full report on ADHD Myths & Facts: www.adhdisreal.org/adhd-myths
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Myth: ADHD only affects boys
Myth: People with ADHD can’t concentrate
Fact:
Fact: Individuals with ADHD can concentrate when they are interested in or intrigued by what they are doing.
Fact: Although boys are diagnosed two to three times more often than girls, about 4.2% of girls receive a diagnosis of ADHD at some point in their lives, and we are still learning whether these numbers actually reflect incidence or whether diagnosis of women and girls is under reported. This could mean that far more women and girls actually suffer from ADHD.
Myth: ADHD is caused by bad parenting Fact: The idea that parents cause ADHD comes from the fact that many children with the disorder misbehave, but this simply isn’t true. ADHD - the inattention, hyperactivity, and impulsivity - comes from the accumulation of many environmental and genetic risk factors.
Myth: ADHD is overdiagnosed
Fact: The rates of ADHD diagnosis vary due to the different diagnostic criteria and measurement in different regions, but research shows that more than half of children with ADHD in Europe have never been diagnosed.
- Spring 2020
Fact: often by a ph Whilst for is
Myth: ADHD doesn’t exist There are more than 100,000 articles in science journals on ADHD (and its precursor labels), with references to it in medical textbooks going back to 1775! Neuro-Imaging research evidence shows that ADHD is associated with impaired function of the prefrontal cortex of the brain.
Myth: ADHD is just an excuse for laziness
Fact: ADHD is really a problem with the chemical dynamics of the brain and it’s not under voluntary control. People with ADHD are able to hyper-focus on things that really interest them. Fact: While some people might not feel the symptoms of ADHD by age 21 or 27, significant symptoms and impairments persist in 50-86% of people with ADHD, and lots of adults suffer with the symptoms of ADHD. Many adults with ADHD go without a diagnosis, even if their children are diagnosed.
Myth: All children grow out of ADHD
Myth: Children with ADHD just need more discipline Fact: Discipline and relationship problems are the consequences of ADHD behavior problems in the children, not the cause. All children need discipline, but parents of children with ADHD may need different strategies to discipline their children - better discipline, but not harsher punishment. Fact: The therapeutic use of stimulant medications for ADHD actually prevents addiction, as shown in a widely accepted study from researchers of the University of California in San Diego, as well as two studies from Sweden based on tens of thousands of patients, and nearly 3 million health care claims.
Myth: ADHD medications are addictive
Myth: Everyone has a little ADHD ADHD is a lifelong, chronic condition caused ysical difference in the brain. everyone can be distracted or getful, for people with ADHD, this due to their condition and not just an irregular part of life.
ADDiSS visits Channel 4 One of the highlights of ADHD Awareness Month was when Channel 4 invited Andrea, Viljo, our good friend Kevin Roberts,
Prof. Eric Taylor, and Prof. Katia Rubia to record short clips dispelling the myths. These were broadcast at the end of October along with recordings from the team at Channel 4 and others
with ADHD, and we’re very grateful to Channel 4 for their help in promoting the facts about ADHD. If you’d like to watch these clips yourself, check out our blog post at: [bit.ly/mb-clips ]
PHOTOS FROM LEFT TO RIGHT: Andrea Bilbow OBE and Kevin Roberts at Channel 4 • Viljo Wilding and his guest badge at Channel 4 • Andrea and Kevin inside the recording booth at Channel 4
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COACH Listens to your dream to ride a bike. Asks you if you need instructions and if you know where to get them from. The coach will ask if you like the colour and model of the bike. They may even go with you to choose one and help you get on it. The coach runs alongside you as you are learning to ride and will ask if you are enjoying the experience. The coach will ask you what you need to do take care of yourself if you fall. The coach will ask you to reflect back on your experience and ask you if you have any future goals in the area of riding a bicycle. If you do have further plans, the coach will ask you what those plans would be and how you will reach those goals. If you don’t want to continue riding, the coach may ask you if you would like to sell the bike
By Faigy Liebermann
ADHD Coaching is like learning how to ride a bicycle! There are many tools which can assist one to overcome mental health problems. There is coaching, consulting, mentoring, parenting, and therapy. Faigy Liebermann explains some of the differences, and how each of the above types of “therapists” go about supporting the individual who is having a difficult time learning to ride a bicycle. THERAPIST Goes through the baggage that you may be carrying that may be holding you back form being able to ride successfully. The therapist goes through the root cause of your fears around riding, and falling off your bicycle. The therapist asks you questions like if your parents rode, and explains to you why that question is a valid question, and how that can influence your current challenge in learning to ride a bicycle. The therapist will explain the importance for your self-esteem and selfconfidence if you learn to ride.
PARENT Will buy the bike for you, may put on and take off the training wheels when they think you are ready. The parent runs next to you as you are learning to ride and cheers you on until you can ride independently. The parent may occasionally threaten to take away riding privileges if you don’t listen to ground rules.
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MENTOR Shares their personal experience of learning to ride a bicycle, and will give you tips and advice on the most effective way to ride a bicycle. The mentor may hold a position that they know better than you because of their past experience. They will advise you on the best bike to buy, and top tips like how to change a tyre. The mentor will warn you about potential dangers of traffic and how to deal with it effectively.
CONSULTANT Is the expert in understanding and teaching the mechanics of riding a bike. The consultant will teach you the laws of physics, what you need to do for optimum balance, and how the bicycle is propelled forward. The consultant will advise you where to sit and put your feet and when to pedal. The consultant may even suggest a training program to upgrade your riding skills or your bicycle. When you have learned to ride, the consultant leaves.
- Spring 2020
The coaching process is an equal partnership between the coach and client. They both work together to understand the client’s challenges, and create strategies to navigate the obstacles that prevent the client from achieving his goals. Coaching focuses almost entirely on the ‘here and now’, paying minimal heed to the client’s past, other than to provide the context necessary to relate to the client’s life in the present. A qualified ADHD coach understands that the individual does not purposely choose to sabotage his potential. The coach will guide the client to appreciate his unique talents and to see that they are just as capable and creative as anyone else. The client simply requires a different shaped key to unlock the vault of his potential.
ADHD COACHING For ADHD the treatment is “pills and skills.” A certified ADHD coach, who understands the challenges and the strengths of ADHD is crucial for giving over the “skills” that the person with ADHD needs to live their successful ADHD life. For those with ADHD a specialised coach who has undergone extensive training in ADHD, and who likely has personal experience with ADHD, in themselves or a family member, will provide you with insights into how your ADHD challenges may be holding you back from reaching your goals, and is equipped with specialist ADHD tools to help you manage your life.
It is critical that someone with ADHD consults an ADHD coach, as opposed to a regular life coach. Even a life coach who may have completed a module of their training on ADHD coaching is just not good enough. A certified ADHD coach has thorough knowledge and skills to explain how ADHD affects the development, structure and activity of the brain. They work daily with their ADHD clients, and they have a deep understanding of the needs of their ADHD clients. They help their clients to use this understanding to develop the most appropriate strategies for moving forward.
PROBLEMS UNIQUE TO ADHD To give just a few examples, only a certified ADHD coach understands: Why those with ADHD perform better when there are deadlines and how to use specific tools to create more deadlines. Why those with ADHD are not lazy, and how to understand the difference between laziness and lack of motivation, and how to find the key to the client’s inner selfmotivation. The benefit of an accountability partner, who will check in to ensure that the person with ADHD is on track with their goals. How to counteract the ADHD brain’s tendency towards impulsive behaviour by developing the ability to pause. Why fidget spinners are of little use to children with ADHD whereas other fidget toys could be invaluable. Why incentives are so much more effective as behaviour modification tools than punishments.
You need an ADHD life coach who hasn’t just done one module of training in ADHD. You owe it to yourself to get a coach who IS ADHD through and through; who sees the world through ADHD eyes; who breathes ADHD; who lives the ADHD success life despite their ADHD. The difference between ADHD coaching and therapy is:
I tell my clients that I hear far more about their ADHD that they are not telling me than what they are telling me. I see and sense below the surface, their ADHD problems and their ADHD strengths that they are not even aware of.
THERAPY
PRACTICAL EXAMPLES OF ADHD COACHING
The support and accountability that my clients receive is priceless. When my client has set a homework goal and she is not sure how on earth she will remember to carry it out, I ask her how can I support her with this, and she asks me to text her reminders. I gladly do this. We agree that I will text her � times this week. The condition is that she must text me back about progress on the same day. The commitment that I have to support my ADHD clients through until they reach their goals. My clients know they can email or text me and occasionally call me (within reason) between sessions when they need to. This is part of the coaching package that they have signed up for. When my client tells me “She feels so unfocused and doesn’t know if she is coming or going” I don’t dump her, like an EMDR therapist did to my client. The EMDR therapist said that if she was so unfocused, then she refused to work with her, she said it was a sign that the therapy wasn’t working... When she feels unfocused, I support her and give over tools to help her become more focused and grounded. When I ask my client a question I listen patiently when it takes her longer to formulate an answer, and her answer is more verbal, than someone who hasn’t got ADHD. I give her the space to formulate her thoughts without taking away from the session. And I know how to move the session onwards, and finish on time…
Faigy Liebermann
is a writer, speaker and ADHD coach. She is the founder of the Focus with Faigy ADHD Success Centre. Please visit her website: www.focuswithfaigy.com When I have a phone session with a client, and sense that she has lost focus, I am calm, and patient and I wait till her focus comes back to the session. I don’t lose patience with her and tell her off like a psychotherapist said to my client. She had attended sessions for �� months, and the psychotherapist never once realised that she may have ADHD. I picked it up after the first session. I never assume that my client will remember the homework goals. I always email or text, whatever they prefer, the homework goals after the session. I get to the root of my client’s dissatisfaction in her life on the first session. We find the reason why my ADHD client is unsuccessful in his business, and how to turn around his business, within the first session. My client who is suffering burnout and is totally fed up with living from hand to mouth. She doesn’t realise that she is sitting on a gold mine. I point that out to her. No need to reinvent the wheel or retrain for another career. She is already holding the key to her inner transformation and potential wealth. She just needs to adjust and adapt how she is going about it. She needs to own her strengths… The above are all real client scenarios that happened between myself and my clients within the last � months.
Many types of therapies have a place in managing ADHD. The therapy will only be successful if the practitioner has a thorough understanding, preferably personal understanding of ADHD
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This year we celebrate
25 Years of Advocacy for
people with ADHD in the UK.
We will be holding some big events and a gala dinner to recognise the work of every one who has contributed to raising awareness of ADHD over the years. We are pleased to be hosting a number of events around the UK so look out for notifications. If you want to receive notification of these events as soon as booking opens, please visit
www.adhdconference.uk SPECIAL GUESTS will include: Dr. Thomas Phelan author of 1 2 3 Magic, who will be joining us on June 11-13th. Also...
...on October 5-6th we are very excited to be hosting full day workshops with Prof. Russell Barkley.