Young Digital Advocate
~ Our Nominee is a Winner!
Background about our Nominated Winner
Poppy is a young lady in her twenties who has struggled all her life with ADHD and many other associated and neurological problems. With a very supportive family and an early diagnosis and treatment she managed to get to Cambridge University. It was a huge struggle for her but while at university she became acutely aware of the lack of information and support for people with ADHD.
She became a welfare rights officer at university and was instrumental in developing instant messaging software for students with mental health problems to access high quality support. Whilst working as single point of Entry Officer at MIND in Hackney, she undertook a research project about the needs of Hackney residents with adult ADHD and how well they are being met. In light of the findings she produced an investment case for addressing these needs, which she presented to the organisation. This led to her co- designing a new service in collaboration with the CEO, and to write a funding bid with the Business Team that will be presented to local commissioners when a suitable tender becomes available.
She Developed a cloud-based signposting resource system and trained her colleagues in how to use and contribute to this, in order to increase team productivity and improve the quality of the information they were giving to clients. This innovation was adopted company wide, based on the time it immediately saved for her team who had previously lost a lot of time duplicating work that others had already done. This resource is now also used and contributed to by the Hackney IAPT (NHS) service.(Instant Access to Psychological Therapy).
She created an electronic form-filling system for clients to use, which significantly reduced the burden of paperwork on the team. Developing a broad range of IT skills along the way Poppy was determined to make a difference and campaign for better services for people with ADHD.
She is passionate about giving people a voice. The opportunity for people to have a platform, and for their needs to be represented and valued, is of huge importance to her. Her undergraduate thesis, on the experiences of students with ADHD, found that their experiences were regularly dismissed as ‘one-off’, or belittled. She believes in advocating for, and working with people with ADHD, to navigate and change bureaucratic and inaccessible systems on their behalves and ensure their inclusion.
With this in mind Poppy went on to develop a campaign called Attention UK. She created a website to highlight the problems facing adults with ADHD. This website together with her use of twitter has been a huge boost to the overall campaign of raising awareness in the area of ADHD. Poppy has worked closely with the UK charity ADDISS and has also participated in ADHD Europe events bringing her expertise to a wider platform. Her website is used by journalists, researchers and students as a reliable source of information. It is quoted in many documents. Through her work Poppy has become a huge voice for many more campaigns and investigations.
She was a co author of the document Born to be ADHD: A Lifetime Lost or a Lifetime Saved https://attentionuk.files.wordpress.com/2017/11/018-adhd-report-version-18-no- watermark1.pdf. Poppy continues to volunteer her services to both ADDISS and ADHD Europe. With regards to all our digital campaigning and web construction and population. Poppy’s enthusiasm and skills have been highly recognized and she is now a valued member of the Adult ADHD service in Barnet, London where she works as a graduate mental health worker supporting adults with neurodeveloomental disorders.
EFNA Neurology Advocacy Awards 2018 – Celebratory Dinner
Marko Ferek (Vice-President ADHD-Europe), and Chantel Fouche (Treasurer ADHD-Europe) were invited to the Celebratory dinner held on 20 November 2018 in Brussels, Belgium for the EFNA Neurology Advocacy Awards 2018. The awards recognizes the contribution to the development & promotion of advocacy for people with neurological disorders. Chantel said a few words about why ADHD Europe nominated Poppy Ellis Logan.
Poppy then stood up from the dinner table and also said a few words before receiving her well deserved award. Support and follow Poppy on Twitter @ADHDcampaign or visit her website www.attentionuk.org
Read more about EFNA Neurology Advocacy Awards 2018. Read more about the Report: ‘Patient Advocacy in the Digital World’ – EFNA’s Young People’s Workshop
MEDIA GUIDELINES - ABOUT ADULT ADHD
~ By Poppy Ellis Logan
We would like to highlight the fantastic work done by Poppy on our website as
Media reporting has a huge influence on public attitudes towards mental health, and particularly towards ADHD
When dealing with a topic already entrenched with stigma and misunderstanding, fair and accurate journalism is essential.
Poppy shares on her website extremely useful media guidelines as Stigma is a huge part of having ADHD:
– Reporting on ADHD in the news
– Including ADHD as part of your storyline in soaps and dramas
– How to report on medication
– How to report on prevalence and diagnostic statistics
– Images in the media
Your can read more about the media guidelines here.
Do you want to understand more about ADHD Stigma? Here is the link.
Published 20 November 2018
Updated European Consensus Statement on
diagnosis and treatment of adult ADHD
This Consensus on adult ADHD in Europe is meant to support all patients and professionals‘ said by our Professional Advisory Board Member J.J. Sandra Kooij, MD, PhD. Please see the Summary of key points (referred in the Updated European Consensus Statement on diagnosis and treatment of adult ADHD as Table 3) – With permission of J.J. Sandra Kooij, MD, PhD to publish Table 3 on our website. Read the full ‘Updated European Consensus Statement on diagnosis and treatment of adult ADHD here.
Summary of Key Points (Table 3)
Neurobiological and environmental background: High heritability (60-80%), environmental risk factors and their interaction, are involved in the majority of ADHD cases. Abnormalities in grey matter, cortical thickness and white matter microstructure have been shown in ADHD compared to controls, indicating that structural deficits in ADHD involve interconnections among large scale brain networks. Functional neuroimaging shows dysfunctions in several domain-specific fronto-striatal and fronto-cerebellar neural networks, as well as an enhanced activation of default mode regions. These findings, as well as the effectiveness of pharmacological treatments with dopamine agonists, support the neurobiological underpinnings of ADHD.
Diagnosis: The clinical diagnosis of ADHD depends on self-report during a structured diagnostic interview, whenever possible with collateral information about lifetime symptoms and impairment. It cannot be established using solely neuropsychological tests. Recent research shows that besides inattention, hyperactivity and impulsivity, emotional dysregulation and excessive mind wandering are common symptoms associated with ADHD in adults. The underdiagnosis of girls and women with ADHD may be due to a different expression of symptoms and comorbidities, to referral bias, and to interaction of hormones with the dopaminergic system. Further research is needed. The concept of late-onset ADHD refers to an age of onset after 12 years, and needs further study concerning the overlap and differences with childhood onset ADHD. High rates of psychiatric comorbidity, physical multi-morbidity, increased mortality and suicide rates, and criminality may ‘mask’ the underlying ADHD condition. Stigma leads to misconceptions about ADHD and underdiagnosis.
DSM-5 criteria: Main changes in the DSM-5 criteria for ADHD are:
– ADHD is placed in the chapter of Neurodevelopmental Disorders
– The age of onset of symptoms is before age 12, instead of age 7
– The cut off for current symptoms in adults is 5/9 instead of 6/9
– A diagnosis of ADHD can now be combined with Autism Spectrum Disorder (ASD)
Prevalence: The mean prevalence of ADHD in adults across 20 countries is estimated at 2.8%. In people above age 60, a similar prevalence rate has been found. The prevalence of ADHD in prisons is 25%, a 10-fold increase compared to the general population.
Transition Two-thirds of children with ADHD continue to have ADHD symptoms associated with impairments in adulthood, therefore adjustments in the health care system to support the transition from child to adult services are needed. Licensing of stimulants for adult ADHD is urgently needed in European countries and beyond. The non-stimulant atomoxetine is recommended as a second line treatment. There is limited evidence in adults for guanfacine, bupropion, tricyclic antidepressants and reboxetine in controlled studies. Cognitive Behavior Therapy reduces ADHD-core symptoms, associated symptoms such as emotion dysregulation, anxiety and depression, and functional impairments across different areas of daily living in adults. CBT is best used within a multi-modal treatment approach and as an adjunct to medication, as research does not fully support the efficacy of CBT as a sole treatment for adult ADHD.
Pharmacological treatment of special groups: In patients with ADHD and substance use disorder, to be effective, treatment with stimulants may use higher dosages than normal. In patients with ADHD and bipolar disorder, the combined approach of a mood stabilizer with a stimulant has been shown to treat both disorders effectively without inducing (hypo)manic states. During pregnancy stimulants are not advised, though large cohort data showed no increased risk for congenital malformations using stimulants during the first trimester. The risk for cardiac malformations using MPH however was slightly increased, while this was not the case for amphetamines. Research on the wishes of older people with ADHD regarding treatment, and trials on the safety and efficacy of medicines are needed. Based on data from large cohort studies, following treatment, the negative outcomes associated with ADHD significantly diminish, i.e. traffic accidents, mortality, criminality, depression and suicide, and substance abuse.
Costs: The economic burden of ADHD is considerable and falls both on the individual and the state. Pharmacotherapy in children is cost effective compared to no treatment and behavioral therapy, but data in adults are still lacking.
|#AdultADHD #Diagnosis #Treatment #EPA|
|#UpdatedEuropeanConsensusStatement #European Network Adult ADHD|
ADVOCACY: bridge between evidence and policy making
Lisbon, Portugal (17-18 April 2018) Value: Patient Preferences and Perspectives Training Initiatives for Neurology Advocates
We attended a workshop exploring the value from the patient perspective on Health Technology Assessment (HTA) whereby European Union steps up its efforts to encourage further EU Cooperation in HTA. The main purpose of HTA is to inform technology-related policymaking in healthcare, and it is sometimes called ‘the bridge between evidence and policy making’. As HTA bodies and processes vary from country to country (and sometimes region to region) there is no common (harmonized) approach to HTA. However, in recent years the fundamentals of good HTA processes have become more standardized.
our advocacy work at european parliament
ADHD Europe represented by Andrea Bilbow and Joanne Norris who participated in various meetings highlighting gaps in care for Europeans at European Parliament: transitioning from child to adult mental health care services, and calls on policymakers to support improvements to healthcare systems. Published 21/11/2017
Expert Policy Paper:
FROM CHILD TO ADULT MENTAL HEALTHCARE
Highlighting gaps in care for Europeans at European Parliament: transitioning from child to adult mental health care services, and calls on policymakers to support improvements to healthcare systems.
Leading mental health specialists launch an Expert Policy Paper to address major challenges around transition from child to adult mental health services across Europe.
Expert Policy Paper highlights gaps in care for Europeans transitioning from child to adult mental health care services, and calls on policymakers to support improvements to healthcare systems.
Press Release 21 November 2017 and featured in the The Parliament Magazine Issue 468, 22 January 2018 Article Extract from Parliament Magazine: ‘Bridging the Gap_ Optimising transition from child to adult mental healthcare’
The Parliament Magazine Issue 468, 22 January 2018 Full magazine here
‘BRIDGING THE GAP: OPTIMISING TRANSITION
FROM CHILD TO ADULT MENTAL HEALTHCARE’
21 November 2017, Brussels, Belgium: Today, GAMIAN-Europe and the European Brain Council launched an Expert Policy Paper entitled ‘Bridging the Gap: Optimising transition from child to adult mental healthcare’ at a meeting in the European Parliament.The Expert Policy Paper suggests simple measures that aim to ensure young adults, who may require continued care, receive the support they need. Such measures include: ensuring awareness amongst healthcare professionals, improving education of healthcare professionals, improving the management and planning of the transition process, and promoting long-term continuity of care after the transition has been made to adult services.1
Transition of care, which is the process of planning, preparing and moving a patient with a mental health condition from child to adult mental healthcare services, is vitally important in determining patient outcomes.2,3
“Transitioning to adult services can feel overwhelming to young people living with a mental health condition, especially as the timing often coincides with shifts in personal circumstances,” commented Dolores Gauci from GAMIAN-Europe. “In Europe, transition of care in mental health services is deeply inadequate, and vulnerable young adults often fall through the care gap.”
When setting out key recommendations for improving transition to adult mental healthcare services the Expert Policy Paper takes attention-deficit hyperactivity disorder (ADHD) as a working example, illustrating what needs to be done. Research has shown that poor transition of care for people with ADHD can result in disengagement from services and discontinuation of treatment.4-6 Often, young people and adults with ADHD can find it difficult to progress in education and employment.
“By establishing a cohesive infrastructure to support transition for people living with mental health conditions, we can effect real, measurable change for future generations, for example, by enabling people to more effectively engage in long-term employment, and by reducing overall long-term healthcare costs,” said EBC President David Nutt. “We call on stakeholders across Europe to support and implement the recommendations set out in this paper and to help establish a best practice transition pathway across all European member states.”
For further information on the issue of transition from child to adult mental health services, and to access the paper, please click here.
About ‘Bridging the Gap: Optimising transition from child to adult mental healthcare’
This Expert Policy Paper aims to inform European and national level stakeholders and policymakers on the importance and need for effective transition of care. Using ADHD as a case study, the Expert Policy Paper identifies barriers to successful transition and offers practical policy recommendations to support improvements in care during this crucial time period. Recommendations put forward in the Expert Policy Paper have been agreed upon by a group of key experts with an interest in improving mental health outcomes for patients across Europe. The Expert Policy Paper has been authored by (in alphabetical order):
Philip Asherson (King’s College London, UK); Andrea Bilbow (ADHD Europe); Kate Carr-Fanning (ADHD Europe); Frédéric Destrebecq (European Brain Council); Geert Dom (European Psychiatric Association); Silvana Galderisi (European Psychiatric Association); Dolores Gauci (GAMIAN-Europe); Marc Hermans (UEMS Section of Psychiatry); Tony Lloyd (ADHD Foundation, Liverpool, UK); Ann Little (European Federation of Neurological Associations); Fulgencio Madrid (University of Murcia, Spain); Kuben Naidoo (Mersey Care NHS Trust, Liverpool, UK); J. Antoni Ramos-Quiroga (Universitat Autónoma de Barcelona, Hospital Universitari Vall d’Hebron, Spain); Swaran Singh (University of Warwick, UK); Donna Walsh (European Federation of Neurological Associations); Spyros Zorbas (European Federation of Associations of Families of People with Mental Illness).
The Expert Policy Paper was authored by an independent group of experts, led by the European Brain Council and GAMIAN-Europe, and developed with support from Shire, who commissioned medical writing support from APCO Worldwide and Complete Medical Communications.
ADHD is a complex neurobiological disorder that can profoundly affect people throughout their lives. It is often under-recognised and misunderstood, especially among adults, on whom it can have a wide-ranging impact.7 Often, those who have been diagnosed as children or adolescents continue to be affected later in life, and it has been reported that ADHD persists from childhood into adulthood in approximately 50-66% of individuals.8,9 The estimated prevalence of ADHD among adults is approximately 3.4%.10
GAMIAN-Europe was established in 1998 as a representative coalition of patient organisations. Putting the patient at the centre of all issues of the EU healthcare debate, the organisation aims to bring together and support the development and policy influencing capacity of local, regional and national organisations active in the field of mental health.
Patients can and should play an effective and complementary role in developing positive and proactive policies and other initiatives with an impact on mental health issues. GAMIAN-Europe, as an informed and effective advocate, is seeking to become a powerful and trusted point of reference for the main EU institutions and other organisations and stakeholders seeking the views of patients.
About the European Brain Council
The European Brain Council (EBC) is a non-profit organisation gathering patient associations, major brain-related societies as well as industries. Established in March 2002, its mission is to promote brain research in order to improve the quality of life of those living with brain disorders in Europe. EBC’s main action areas are:
Fostering cooperation with its members organisations
Promoting dialogue between scientists, industry and society
Interacting with the European Commission, the European Parliament and other relevant international institutions
Raising awareness and promoting education on the brain
Disseminating information about brain research and brain diseases in Europe.
For further information, please contact ADHD Europe who are members of Gamain & EBC.
- Department of Health. Transition: Getting it right for young people. Available at: http://webarchive.nationalarchives.gov.uk/20130123205838/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4132145. Last updated 2006.
- Paul M, Ford T, Kramer T, Islam Z, Harley K, Singh SP. Transfers and transitions between child and adult mental health services. Br J Psychiatry Suppl 2013; 54: s36-s40.
- Buitelaar JK. Optimising treatment strategies for ADHD in adolescence to minimise ‘lost in transition’ to adulthood. Epidemiol Psychiatr Sci 2017; 1-5.
- Singh SP. Transition of care from child to adult mental health services: the great divide. Curr Opin Psychiatry 2009; 22: 386-390.
- Singh SP, Paul M, Ford T, Kramer T, Weaver T, McLaren S, Hovish K, Islam Z, Belling R, White S. Process, outcome and experience of transition from child to adult mental healthcare: multiperspective study. Br J Psychiatry 2010; 197: 305-312.
- Asherson P, Clinical Assessment and Treatment of Attention Deficit Hyperactivity in Adults, Expert Review Neurotherapeutics 2005, 5(4): 525-539
- Faraone SV, Biederman J, Mick E. The age-dependent decline of attention deficit hyperactivity disorder: a meta-analysis of follow-up studies. Psychol Med 2006; 36: 159-165.
- Barkley RA, Fischer M, Smallish L, Fletcher K. The persistence of attention-deficit/hyperactivity disorder into young adulthood as a function of reporting source and definition of disorder. J Abnorm Psychol 2002; 111: 279-289.
- Lara C, Fayyad J, De Graaf R, Kessler RC, Aguilar-Gaxiola S, Angermeyer M, Demytteneare K, De Girolamo G, Haro JM, Jin R, Karam EG, Lépine JP, Mora ME, Ormel J, Posada-Villa J, Sampson N. Childhood predictors of adult attention-deficit/hyperactivity disorder: results from the World Health Organization World Mental Health Survey Initiative. Biol Psychiatry 2009; 65: 46-54.
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