Founded in 1995

2. Founded in 1995 to provide information, advice, and support for individuals and families affected by Attention Deficit Hyperactivity Disorder and associated conditions and to initiate support groups throughout the North West ---------- and to raise awareness, increase knowledge, and encourage improvement in the quality and availability of services

3. Early Stages • Helpline & Support Groups • Listening ear – a lifeline for many parents • “First person to understand.” • Information, advice, support, and strategies • Information leaflets • Development of support groups & committees • Local group held regular meetings for parents and social events for families • Sub-committee organised numerous fund-raising events

4. Early Stages • Increasing Knowledge • Attended several conferences and lectures • Three-day conference in Chicago in 1997 • Met amazing experts from various countries • Followed research studies • Involved in development of clinical pathways • Learned from other parents

5. Early Stages • Lectures, Conferences & Workshops • Hosted 7 Lectures by international experts between 1995-2007 • Held 3 Conferences with renowned speakers: • 1998 - S. Martin’s College Lancaster • 2001 - JJB Stadium Wigan • 2006 – University of Cumbria • Developed and delivered parent & professional workshops throughout the north west

6. Experiential Learning Outdoor adventure activity days and weekends for children with ADHD and siblings: Positive Experience Building Self-esteem Improving Wellbeing Vehicle for change? Sustainability?

7. Therapeutic Adventure Programme 2001 • Funded by Lancashire Children’s Fund • Partnership between outdoor activity centre, clinical psychology, and ADHD North West • Aim to study the usefuless of Cognitive Behavioural Therapy in an outdoor environment • Programme and Partnership issues • Psychologists used adult CBT methodology, found it unsuccessful, and abandoned the programme midway • ADHD North West left to provide support for the young people and their families BUT WE LEARNED A LOT!

8. Family Skills & Activities Programme • Funded by small grant from YMCA England • Project for 8 families excluded from TAP • Identification of problem areas with families • Weekend of Workshops and Activities • Developed strategies to address problems • 3 months outreach support to aid implementation • Closure Event (family activities & evaluation) • Participatory Action Learning process

9. Case Study – girl aged 10 • Parent • Bedtime issues • Felt resentment • Blamed child for her behaviour • Child naughty on purpose • Shouted, screamed and swore at her • Picked on her • Rejected her • Child • Getting to sleep • Aggression & Temper • No-one liked her • Felt rejected • No friends • Verbally abusive • Slammed doors • Smacked little sister • Kicked brother’s door

10. Case Study – girl aged 10 Strategies introduced 1:1 quality time with physical contact each day increasing over time Cost Response Bedtime Vouchers No food and drink to take to bed Mouth/Ear resources for taking turn Traffic Lights Card Active Ignoring for minor irritations STOP THINK DO What is the problem? How do I feel? What can I do? Who can help?

11. Case Study – girl aged 10 • Parent • More compassionate • More understanding • Less blame • More aware of ‘illness’ (ADHD) • Active Ignoring minor irritations • Less confrontations • Child • Goes out with family • Family love her now • More cautious • Less abusive • Reads in bedroom • Doesn’t slam doors • Leaves brother alone

12. Family Skills & Activities Programme • Positive Outcomes • Improved knowledge of ADHD • Increased confidence and control • Outreach support beneficial • Household much calmer • Knowledge & experience gained by ADHD NW provided guidance for further development • Emerging Issues • Short workshops totally inadequate • Reluctance to change ineffective practices • Education problems

13. Family Skills & Activities Programme I felt very privileged to be the evaluator to this programme. I think the work you have done could be of national benefit to those living and working with ADHD. This could be a valuable resource and it would be a shame if it is under-used or not disseminated widely. Independent Evaluator Ladey Adey, Family Matters Institute

14. Developing & Extending Programme • Bury Children’s Fund – 2003 - 2011 • Employ staff for first time • Parent Empowerment & Skills Training course • Young Person’s ‘Challenge to Change’ course • Family Outdoor Adventure Activity Weekend • Three months Outreach Support • Closure Event (family activities and evaluation) • PAL – Review and Recommendations • Delivered 3 programmes each year • Extended outreach support

15. ADHD: Parent Empowerment and Skills Training

16. Parent Empowerment & Skills Training • Development of PEST Course • Looked at generic Parenting Courses • Attended an ADHD-specific Parenting Course • Parenting Manuals & Books • Consulted with Parents • Drafted outline of sessions • Developed session content • Produced visuals, leaflets, & handouts

17. Parent Empowerment & Skills Training • Important Factors • Empathic, knowledgeable, and flexible staff • Non-clinical environment – easily accessible • Small groups of parents – always different • Accommodate learning styles & abilities • Method of mapping progress and difficulties • PAL process to enable review and refinement • Evaluation and Recommendations

18. Parent Empowerment & Skills Training • Course Essentials • Specifically tailored to ADHD • Step-by-Step approach to build confidence • Structure & Content to meet aims & objectives • Mix of Theory & Practical Exercises • Flexible and innovative methods of delivery • Participatory and Interactive • Leaflets and handouts inviting & colourful • Transferable skills to enable sustainability • Relaxed atmosphere and mutual support

19. Parent Empowerment & Skills Training • What’s different about our programme • No US and THEM (rapport and relationship) • Each parent receives individual support • Not just a course; a life-changing experience • Facilitate learning without being prescriptive • Enable and empower parent(s) to make choices • Range of media for stimulation and information • Humour, anecdotes, role-play, and discussion • Issues outside scope of programme supported

20. Family Skills & Activities Programme • Case Study: Parent Comments • Hated child – felt he’d ruined her life • Always shouting which made child ‘kick-off’ • Felt depressed and lethargic • Lacked confidence • Situation affecting siblings • Virtually no control over child’s behaviour • Social Services and Youth Offending involved • Had been in foster care for periods of time

21. Family Skills & Activities Programme • Case Study: Difficulties with Child • Constant badgering • Total disregard of rules and boundaries • Stealing and smoking • Extremely poor social skills • Low self-esteem • Very hyperactive • Education issues

22. Family Skills & Activities Programme • Parent Comments – post programme • Now he’s my son! • More understanding of what ADHD is • More empowered, in control, confident • House now calm • Strategies working • Opened up new door for us all • Bed-wetting much less • Siblings behaviour has improved • Respite – don’t need it now!

23. Family Skills & Activities Programme Comments from Parents “I was always a shouter – now I’m more calm.” “Fabulous project – miracle cure – done so much for me.” “We are able to have family outings now.” “Better understanding – praise more & immediately – standing ground and seeing things through.” “Before I was in a time warp – every day the same – now I know how and what to change.” “Your help in getting school support for him invaluable.”

24. Parent Empowerment & Skills Training Comments from Parents "I know what empathy means now and I use it." "Let issues go that I used to argue about." "I have more patience and take time to listen rather than shout." "I didn't think you could teach an old dog new tricks, but you have." "I make a conscious effort to praise him more; stop and think before speaking." "I'm more in control."

25. Family Skills & Activities Programme Extract from external evaluation report: “ADHD services were an acknowledged ‘gap’ in 2003. Since ADHD North West has provided the Family Skills and Activities Project, the scheme has supported around half of the children and families diagnosed and treated by the CAMHS in Bury. This project provides group work with families in a less ‘medicalised’ environment where parents can also learn from each other. According to CAMHS, ADHD NW are regarded as specialists working with ADHD children and families. They have been instrumental in preventing (long term) care episodes too, working within child protection tiers of services in addition to CAMHS. Without their input, the use of medication in many of CAMHS caseloads could be problematic, and they estimate the service to have near 100% successful outcome rate with families. ADHD is not cured, but the complexity of family life is better managed.” Independent Evaluator Cheryl Simmill-Binning, Lancaster University

26. Parent Empowerment & Skills Training • Positive Outcomes • Course evaluated as Excellent or Good • Gained knowledge and transferable skills • More confident and empowered • Mutual support and respect for each other • Stress levels reduced – household calmer • Feel less isolated and able to face the world • Improved hope and outlook for future

27. Parent Empowerment & Skills Training • Emergent Issues • Common Problems • Educational issues – attitudes, inflexibility, exclusions • Complexity of child’s difficulties - comorbidities • Family size, blended families, single parents • Lack of support and interference from relatives/friends • Readiness of parents – financial, housing, illness, ability • Referred by social services when their support failed • Courage and confidence to implement strategies • Difficulty completing worksheets/questionnaires • Missed sessions due to crises and illness • Restrictions caused by cultural differences

28. Parent Empowerment & Skills Training Thank you Note from Parent Barbara Thank you for all you’ve done for me and my family. You’ll never know the difference you’ve made. I’m a happier, stronger person for meeting you and don’t fear the future anymore. This angel is to say thank you and it’s how I think of you and Linda; you are angels for the things you do to help families like mine. I’ll never forget you and will maybe write or email now and then to let you know how we’re doing. Lynne

29. National Academy of Parenting Research • Consortium funded by DCSF (2008) comprising: • King’s College, Family & Parenting Institute, Parenting UK • Mission: • Improve training and quality of parenting practitioners • Identify effective evidence-based programmes • Establish good practice and dissemination • Submission of PEST for review • Complex application form with four main elements • Numerous meetings and discussions in London & Carlisle • Evidence scrutinised by three independent researchers • Reviewed in 2008 and 2011 • Qualifications required to deliver programme • Minimum Level 4 in recognised and appropriate subject • Certificate to Teach in Lifelong Learning Sector

30. National Institute of Care & Excellence • NICE Guidelines - updated March 2018 • Ensure people with ADHD have a comprehensive, holistic shared treatment plan that addresses psychological, behavioural and occupational or educational needs. • Offer an ADHD-focused group or 1:1 parent-training programme to parents or carers as first-line treatment. • Offer medication for children aged 6 years and over and if their ADHD symptoms are causing a persistent significant impairment in at least one domain after environmental modifications have been implemented. • Programmes should be delivered by trained and skilled facilitators able to engage in a therapeutic alliance with parents.

31. Clinical Commissioning Groups • 2008 to 2021 East Lancashire PCT/CCG • Commissioned to provide a range of services covering Burnley, Hyndburn, Pendle, Ribble Valley & Rossendale • 2016 to 2019 Blackburn with Darwen CCG • Commissioned to provide a similar range of services • Monitoring Requirements • Required to meet the standards of NHS England • Ever-increasing data and quality assurance requirements • Grants • Very supportive Children’s Commissioner • Never enough money or staff to meet demand

32. ADHD Clinical Assessment & Therapy • Children and young people • Clinics overwhelmed by referrals • Initial clinic waiting times around 8-12 months • May take several appointments before diagnosis made • Tending to refer to ADHD North West in interim • CAMHS often only accepting very complex cases • Many families frustrated • Adult Services • Transition of adolescents into adult services • Growing demand for adult assessment & treatment • Small team covers whole of Lancashire • Waiting time can be up to 18 months • Training of clinicians to extend adult ADHD services • NICE Guidelines not mandatory

33. ADHD North West Services • Services: • Fantastic team of dedicated practitioners • Helpline – continues to provide a listening ear • ADHD: Parent Programme & Workshops • 1:1 Outreach Support • Case Meetings and Advocacy • Family Activities & Residentials • Signposting to other Specialist Services • Professional Training Workshops • School Support • We do a LOT with a LITTLE

34. What Next? • Voluntary Sector Challenges • Funding: never-ending problem • Ad-hoc grants enable 1:1 support and ADHD programme in areas not commissioned by CCG’s • Training: Cost in time and money • Very high quality assurance requirements • Constantly changing legislation • Working with other CCG’s and Authorities to extend services to other areas • Death knell for volunteers?