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Shine a light – understanding ADHD

“I feel like a universe, stuffed within a shoebox” – this is how Bryn Travers describes what it’s like to have Attention Deficit / Hyperactivity Disorder (ADHD). On 31st October 2018 the video ‘Shine a light – understanding ADHD’ was released: it’s a short documentary about what ADHD is, both from a personal and from a clinical perspective.

The release of this video co-occurred with the last day of the international ADHD awareness month (October). This initiative of the international ADHD patient organisations aims to raise awareness about ADHD, as well as funding for more research to better understand ADHD. Many events were organised worldwide during October to inform people about ADHD. Knowing more about ADHD and spreading awareness will help people to better understand (people with) ADHD. This will reduce stigma and (self)blame.

The video is in English, with subtitles in English, German, Dutch, Italian, Spanish, Hungarian and Swedish.

What is this video about?

Many children, adolescents and adults suffer from ADHD. ADHD is a complex disorder that affects people differently. Generally people experience problems in daily life, especially with respect to controlling attention, impulses and emotions. At the same time, people with ADHD enjoy their creativity and positive energy. Medication is effective for many people with ADHD, but not for all. A downside of the medication is that it needs to be taken every day, and it does not cure someone from the disorder. Other types of treatment should therefore also be offered and investigated.  Knowing more about ADHD and spreading awareness will help people to understand what causes their behaviour. This will reduce stigma and (self)blame.

The makers of this mini-documentary have asked people with ADHD and their relatives what is like to have ADHD, what are the challenges and what are the things they like about ADHD. They have also asked clinicians and researchers working with ADHD to explain more about the origins of the disorder, what they have learnt from their experience working with patients, but also what are the main questions that research is trying to answer about ADHD.

Who is in the video?
The video features four of the most well-known researchers in the field of ADHD:
Dr. Eric Taylor is Emeritus Professor of Child and Adolescent Psychiatry at King’s College London,
Dr. Philip Asherson is professor of Molecular Psychiatry at King’s College London,
Dr. Barbara Franke is professor of Molecular Psychiatry at Radboud University Medical Center Nijmegen, in The Netherlands, and
Dr. Corina Greven is psychologist and behavioural geneticist at Radboud University Medical Center Nijmegen.

Next to these scientists and psychiatrists, we see three people with ADHD:
Bryn Travers, Evie Travers, and Aziz.

And we also see:
Andrea Bilbow, President of ‘ADHD Europe’ and mother of two children with ADHD,
Dr. Kai Syng Tan, researcher and artist at King’s College London, who also has an ADHD diagnosis.

In the video they talk about what ADHD is and what it is like to have ADHD, about the pro’s and con’s of ADHD medication and why other types of treatment should also be developed, about stigma and misconceptions and why education is so important, and about the positive aspects of ADHD.

About the collaborators of this video

This video was a created through collaboration between four EU-funded, international consortia of researchers that investigate ADHD and its origins. The idea came from two junior scientists, Laura Ghirardi and Dr. Nicoletta Adamo. They were supported in creating the video through the MiND Training program and by the other junior scientists from MiND.

More information about the researchers and consortia:

MiND (ADHD and ASD research):

Aggressotype (origins of aggression in psychiatric disorders, such as ADHD):

CoCA (origins of comorbid disorders with ADHD in adolescents and adults):

Eat2BeNICE (how nutrition and lifestyle influence mental health in psychiatric disorders)

The video was recorded by 4QUARTER FILMS

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Map of Adult ADHD Services

The Children and Adolescents with ADHD in Transition between Children’s Services and adult Services (CATCh-uS) project team at the University of Exeter ran a survey in 2016 with the aim of creating a map of existing NHS adult ADHD services in the UK, and then they ran another survey at the beginning of this year.

Responses to the 2016 survey have been used to create a preliminary map of existing NHS, voluntary and private services for adults with ADHD whilst the findings from the 2018 survey will be available later this year.

 

This map not only helps inform and improve services for young people transitioning from child and adolescent mental health services to adult mental health services, it also helps adults who need to access ADHD services. Importantly, the map also highlights areas in the UK where there are gaps in service provision.

Background 

CATCh-uS is a very important research study of young people with ADHD in transition from children’s services to adult services. It aims to establish how many young people with ADHD are in need of services for ADHD as adults, and investigate young peoples, parents and practitioners views about the transition process. It is also mapping currently available adult ADHD services around the country. It is funded by the National Institute of Health Research and has been approved by NRES South Yorkshire Ethics Committee – Yorkshire & The Humber (REC Reference: 15/YH/0426) and the University of Exeter Medical School Ethics Committee (REC Application Number: 15/07/070). This study has been adopted by the new HRA on 15th June 2016 (“HRA Approval for a study with an existing UK study wide review”). More details are available on the CATCh-uS website.

PROUD: Pilot study on prevention of low mood & weight problems in young adults with ADHD

Researchers for the study of Comorbid Conditions in ADHD (CoCA) at King’s College London are looking for adolescents and young adults aged between 14 to 30 years, who have a current diagnosis of ADHD and are on stable treatment for ADHD (i.e. medical or non-medical, or no active treatment at all), to take part in a new research study investigating the use of exercise and bright light therapy to improve low mood, weight problems and general health. Participation involves one of the following 10-week interventions as well as five visits to their research centre in south London for a number of physical and mental health assessments.

(1) Exercise programme – to evaluate the effects of exercise
(2) Bright light therapy – to evaluate the effects of bright light
(3) Treatment as usual – to provide a control group with no additional interventions.

Participant requirements:
1. Diagnosis of ADHD
2. Stable treatment as usual
3.Age 14-30 years old
4. No diagnosis of autism spectrum disorder, bipolar disorder, or any other severe psychiatric disorder requiring inpatient treatment
5. No severe medical or neurological condition not allowing bright light therapy or physical exercise
6. No history of epilepsy

Travel arrangements:
They will help make the travel arrangements as convenient as possible and will reimburse all of your travel expenses. They will also provide a reimbursement of £200 for your time and effort, which will be paid in instalments for each of the five appointments attended.

Background Information:

This particular project is one part of a large international & collaborative ADHD research project (launched in April 2016) called “Comorbid Conditions of Attention deficit/hyperactivity disorder (CoCA)”. The aim of CoCA is to understand how and why ADHD often occurs alongside other physical and mental health problems, including anxiety, depression, substance use disorders and obesity. King’s College London’s Institute of Psychiatry, Psychology & Neuroscience (IoPPN) is one of 17 institutions across nine countries to receive funding for this project.

Through CoCA, the researchers hope to raise awareness of ADHD, reduce the stigma associated with ADHD, and empower prevention and therapy approaches as well as providing new tools to prevent ADHD from escalating into additional disorders.

How to get involved:

For further information as well as contact details please click on the following links:

1. PROUD information & consent form

2. PROUD recruitment

3. PROUD Letters of invitation – adults version

4. PROUD recruitment poster

5. News release (12/04/2016): Researchers launch international ADHD project

ADHD & Mind Wandering Research

UK Adult ADHD Network (UKAAN) is currently investigating the role of excessive/uncontrolled mind wandering in ADHD. As part of this research they are conducting a survey on mind wandering, ADHD and the links to educational and occupational outcomes, including both potential impairments and benefits (such as creativity) that might be linked to mind wandering in ADHD.

They have already collected a large sample of around 1,000 non-ADHD controls. Now they wish to compare this to findings from patients who have been diagnosed with ADHD. They are therefore looking for clinicians working in adult ADHD clinics to help them by handing out information sheets to patients with ADHD which invites them to take part in this research by completing the online survey.

If you are willing to assist in this research please contact Professor Philip Asherson by email (philip.asherson@kcl.ac.uk). They would like your name, work address and name of your NHS Trust, or if in a private clinics, just the address of the clinic, to add your site to the current ethics for this work.

If you wish for further information please contact Professor Philip Asherson. He can then send you a copy of their recent publication on this topic, and a rating scale that can be used to measured excessive mind wandering in adults with ADHD.

Research Project at the Institute of Psychiatry, Kings College London

The Departments of Child Psychiatry and Forensic and Neurodevelopmental Science at the Institute of Psychiatry, Psychology and Neuroscience (IoPPN), King’s College London, are looking for right-handed male volunteers with ADHD between 18-35 years of age to participate in a research project.

The project is studying areas that may cause difficulties for some people with ADHD, such as attention, timing and decision-making. This is not a treatment trial and participation in this project won’t help you directly. However, they hope that this project will help them better understand these difficulties and develop ways of helping people with ADHD who may have problems in some of these areas. For further details please UKAAN here: https://www.ukaan.org/research-by-ukaan-members.htm

If you have any questions, please contact Dr Clodagh Murphy at the IoPPN: clodagh.m.murphy@kcl.ac.uk,

or call 0207 848 0984.

UKAAN Conference: ADHD in the Mainstream

The UK Adult ADHD Network (UKAAN) will host its 6th Congress from Wed 20th to Fri 22nd September 2017. This 3 day conference will take place at the Mermaid Conference and Events Centre, which will accommodate up to 600 delegates in a Theatre. The venue is situated between the City and the West End, on the North Bank of the Thames, and enjoys spectacular views towards the Tate Modern, Globe Theatre and the Millennium Bridge.

The conference is titled ‘ADHD in the mainstream’ to reflect the rapid increase in recognition and treatment of ADHD by adult mental health services. ADHD is a common disorder effecting around 5% of children and 3% of adults, with symptoms and impairments that overlap with other common mental health disorders. The role that ADHD plays in the health of many adults presenting with mental health problems is now much more widely recognised, yet recent evidence suggests that in many cases the disorder still goes unrecognised or treated. Our vision is to bring ADHD into the mainstream, so that all mental health professionals have the knowledge and understanding to diagnose and treat ADHD, in the same way as other common mental health disorders.

This meeting aims to raise the level of awareness, knowledge and expertise among health care professionals about people with ADHD and provide a better understanding of the persistence of the disorder, the development of comorbid mental health problems and the delivery of effective treatments.

The program will be delivered by prominent opinion leaders, clinical experts and internationally recognised investigators and is designed to cover key topics relevant to the diagnosis and treatment of ADHD from adolescence to early and late adulthood. The selection of speakers is particularly important so that the audience can hear directly from the most experienced professionals working in this rapidly developing area of clinical psychiatry.

Registration is now open on the UKAAN Website http://www.ukaan.org/adhd-in-the-mainstream/

 

Online Survey on Mind Wandering

This is an online survey investigating if mind wandering can lead to differences in our education, occupation, and creativity. Everyone’s mind wanders, but we all do it to a different degree, so what is its impact? For some it may be useful and lead to creativity or working in a certain profession. For others it may have a negative effect, perhaps by making it difficult to learn at school. Severe mind wandering that just won’t seem to stop could also be associated with attention-deficit/hyperactivity disorder (ADHD). By exploring the relationship between these things researchers can better understand the impact of mind wandering and the extent to which it affects peoples’ lives.

This project is being organised by researchers at the MRC Social, Genetic and Developmental Psychiatry Centre at King’s College London.

Before you decide if you would like to take part, it is important that you understand why the researchers are conducting this research and what your participation will involve. Please read this information sheet carefully and discuss it with others if you wish. Also, please ask the researchers if anything is unclear or you would like further information. Contact details can be found on the Information Sheet here https://drive.google.com/file/d/0B0s7RDt2l670bVBfNFEzSVRqbGc/view

What participating involves
You must be aged 16 or over to participate. You will be asked to complete the online survey, which takes around 10 – 15 minutes. You do not have to complete it in one session; you can save your responses and return to it at a later time (but it must be within 1 week of starting the survey). You will be asked questions about your education, occupation, health, behaviour, and personality. By participating you can contribute to research that can further our understanding of the implications of mind wandering.

Participation is entirely voluntary. You should only participate if you want to; choosing not to will not disadvantage you in any way. If you decide to take part you can still withdraw from the study at any point without giving a reason, up until the point of data analyses. Selecting the relevant boxes in the electronic consent form indicates your consent to participate in this research, and for all submitted data to be used. This includes submission of partially completed surveys, whereby pressing the ‘next’ or ‘continue’ button indicates your consent for data entered up to that point to be included in the study.

There will also be a chance to be entered into a prize draw to win one of five £50 Amazon vouchers when you complete the survey.

Confidentiality
The Survey is hosted by Qualtrics (www.qualtrics.com), a survey platform that treats all data as highly confidential. The data does not belong to them and they do not know what data is being collected. They use best industry practices to keep data safe and their servers are protected by high-end firewall systems. Any information you provide in this study will be kept strictly confidential, and any personal details you provide will be kept separate from your survey responses ensuring anonymity. You will be provided with a unique identification number which will be used for all your data stored on our database. Information will be handled in accordance with the UK Data Protection Act 1998. During analyses individual data will not be identifiable.

Study findings
Results arising from this study will be included in a PhD thesis and presented at international academic conferences and published in academic journals. The researchers may also disseminate research findings through media outlets, including social media sites (e.g. Facebook, Twitter).

Questions and queries
If you have any questions or require more information about this study, please contact the researcher. Contact details are on the information sheet.

To complete the survey, please use the following link:

https://kcliop.eu.qualtrics.com/jfe/form/SV_bl4sG8MsbQQt7Mh

 

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