Can we have your attention, please? National Conference: Adults with AD(H)D

Transcription

1 Can we have your attention, please? National Conference: Adults with AD(H)D 11 February 2015 Rachel King Project Manager Adults with AD(H)D 1 Resource Team NHS Lothian

2 A Sense of Belonging National Conference: Adults with Attention Deficit (Hyperactivity) Disorder (AD(H)D) Contents page Overview 3 Presentations 3 Morning Chairperson s Welcome Alison Meiklejohn 3 Scottish Government Mental Health Strategy - Dr John Mitchell 4 Learning from Lived Experience - Pru Jones, Addressing the Balance Kate McLaughlin, Service User Neurodevelopmental Perspective - Helen Minnis 5 Lothian Model - Dr Fiona Watson, Julie McGuire 6 Glasgow and Fife Models - Dr Ishbel McIver, Dr Marie Boilson 6 Reflections on the morning - Rachel King 6 Workshops 7 Discussion with Speakers and Facilitators 8 Reflections and Recommendations 9 Appendix 1: Programme for the Day 15 Appendix 2: Evaluation form

3 1. Overview 1.1 A first national conference focused on the experiences and needs of adults with Attention Deficit (Hyperactivity) Disorder (known throughout this report as AD(H)D) was organised by the NHS Lothian Adults with AD(H)D Resource Team, to run on 11 February The purpose of the event was to acknowledge the national and local focus and commitments on AD(H)D, to have an opportunity for people to discuss ways forward to further develop work and to share good practice that is taking place across Lothian and in other areas. 1.2 The event was attended by ninety-eight people and was a day long stakeholder conference. It was held in the Norton Park Conference Centre. The conference was funded by NHS Lothian Mental Health and Wellbeing Programme and the Scottish Government Mental Health Directorate. 1.3 Participants came from a variety of organisations, sectors and professional groups including NHS Boards, local authorities, the voluntary sector, universities and colleges across Scotland. There was very good input and representation from service user led groups, carers and people with lived experience. This extensive representation enabled a broad focus around the topic of adults with AD(H)D. 1.4 The day included presentations and workshops to update attendees on key developments and highlight recent work taking place across Scotland. The workshops were also an opportunity for attendees to focus in detail on specific topics, and to think through their own next steps and actions. There was also time towards the end of the conference for a fuller discussion about some of the issues and thoughts from participants, which will inform how this work goes forward, both locally in Lothian and nationally. 1.5 The feedback from the event will be used to inform both local and national developments. 2. Presentations 2.1 Alison Meiklejohn, Chairperson s Welcome The conference was chaired by Alison Meiklejohn, Head of Occupational Therapy, NHS Lothian, who welcomed all attendees. She gave a warm introduction to the event, outlining the purpose of the day and of the conference s focus. She explained her own involvement in the development of the work around adults with AD(H)D in Lothian, and her enthusiasm for the area, especially having Occupational Therapy involvement. Alison introduced each speaker and facilitated questions and discussion throughout the event. 3

4 2.2 Dr John Mitchell, Chief Medical Officer, Mental Health Directorate, Scottish Government. John gave an overview of the national work focused on AD(H)D and also Autism within the current National Mental Health Strategy. This is defined in Commitment 33 of the Strategy. We will undertake work to develop appropriate specialist capability in respect of developmental disorders as well as improving awareness in general settings. As part of this work we will review the need for specialist inpatient services within Scotland. He discussed the different approaches and inputs from a national level, and described how there is currently an era of learning about these two neurodevelopmental disorders. He drew together the strands of work around ASD as well as AD(H)D and posed questions around learning from the Autism work and movement. 2.3 Pru Jones, Carer and member of Addressing the Balance Pru gave a very informative and reflective presentation on her learning and experience of being a carer for people with AD(H)D over the past three decades. She described the role and way that she has found to support the members of her family, and the journey they have been on together. Pru described both the symptoms of AD(H)D and what this looks like in her experience, as well as concisely giving examples of the results of leaving AD(H)D untreated, and the impact this has on both individuals and their families. She also talked through the relationship between AD(H)D and the use of alcohol and drugs and again the impact this can have on people s lives and on those around them. Pru gave an overview of some of the methods and helpful solutions she and her family has found. These included coaching for individuals with AD(H)D, neurofeedback, reflective learning, and acknowledging the positives of being someone with AD(H)D. Pru ended by describing the positives of living with people with AD(H)D. She deliberately looked at the positives of being someone with AD(H)D, living and loving someone with AD(H)D, and at the help her family had received over the years, from both NHS and other services as well as from developing a national support group - Addressing the Balance - and finding solutions that work for each individual. 2.4 Kate McLaughlin, Individual with lived experience and member of Addressing the Balance Kate gave an interesting and informative presentation focused on her experience of being someone with AD(H)D, and the impact this can have on working life, selfesteem and other aspects of living. She discussed the contradiction of being 4

5 successful in your chosen career and having a lack of core skills for example organisational skills, and the negative impact this can have on a sense of achievement and performance. She also gave a critique in thinking through what good and poor practice in relation to supporting someone with AD(H)D might look like. She posed some questions around looking at the costs to the NHS of untreated AD(H)D in adults, plus looking at the needs of the workforce in being skilled up in understanding the condition. Kate discussed her own reflections on having a diagnosis and the ways in which learning skills has supported her through her journey. 2.5 Responses There was a lot of positive feedback within the conference at this point for Pru and Kate s presentations. The presentations that followed also referred back to some of the issues and points made by both Pru and Kate. Kate and Pru made reference to good practice in Lothian and named some of the clinicians who had helped them and their families over the course of their journeys. 2.6 Dr Helen Minnis, Professor of Child and Adolescent Psychiatry, NHS Greater Glasgow and Clyde Helen gave a useful and interesting overview of the work around neurodevelopmental disorders in children over the last thirty years. She gave some detail about the difficulties in managing within the standard medical model the comorbid presentation of AD(H)D and other neurodevelopmental disorders. This relates to studies on children using Speech and Language Services at age two and a half, as well as presenting early in life with several indicators of different disorders. Parents often pick up on problems but it can take a long time before a diagnosis is made, and even longer before a full understanding of multiple or comorbid issues are worked with. Helen described how we understand that AD(H)D is known to be highly inherited. It can also have some environmental causes or be more prevalent within certain environmental conditions such as institutional care with a low stimulant environment. When children are very young, abuse and neglect as well as stress and deprivation will compound difficulties with neurodevelopmental disorders. Helen concluded with some recommendations for looking at the care of children with neurodevelopmental disorders. These were: To move away from single diagnosis specific services, so that children can be treated as they present To keep looking at children who raise concerns - what may not be clear at age four, may well be much clearer by age seven To understand that children with ASD are likely to have other morbidities. 5

6 2.7 Dr Fiona Watson and Julie McGuire, members of the NHS Lothian Adults with AD(H)D Resource Team Fiona and Julie presented on the aims, structures and work to date of the Lothian Adults with AD(H)D Resource Team. The multi-professional team provides direct clinical input to people and aims to build capacity with other teams and services, and is multidisciplinary in make up. Fiona and Julie explained that they have as a team trained over 130 staff, from a range of teams in Lothian. They have also had over 50 referrals in the last year, and have worked jointly with other clinical staff across the localities to support work with adults with AD(H)D and with developing clinical confidence in managing cases. The team has focused on both primary and secondary care, as well as working with third sector, and university and college staff. The team has been running since 2011, and the focus over that time has been in relation to the different key population groups and geographic areas of Lothian. There were several questions from the other attendees following this presentation, and lots of discussion about how to encourage input and work from different disciplines within mental health. 2.8 Dr Ishbel McIver, NHS Greater Glasgow and Dr Marie Boilson, NHS Fife respectively Ishbel and then Marie gave an overview of the work they have been involved in developing locally around AD(H)D in adults. Ishbel focused on the work that has followed the AD(H)D SOS report which came out in 2011 and looked at what different Board areas were delivering in terms of AD(H)D services. There has been training and awareness raising particularly with psychiatrists within Greater Glasgow Health Board area. This has grown organically over the last three years, and has been helped by three local champions of which Ishbel is one. However Ishbel also discussed some of the challenges of not yet having a formal approach locally, or of having a national steer. This also left it challenging to get non medical staff involved in the care and support of people with AD(H)D. Ishbel concluded by stating that both locally and also nationally there needed to be a coordinated approach and a response from the NHS in terms of the needs of people with AD(H)D. Marie presented on the work she has been involved in within Fife. She stated that much of what she wished to discuss was very similar to the experience of Glasgow, and that the needs they had identified are similar. Much of the work developed in Fife has been around education and training, with lots of this being for medical staff especially psychiatrists. She is interested in the use of a nurse specialist who could span several tiers in working with people with a 6

7 diagnosis, and be a bridge between a multi-disciplinary team and the GP. At tier one and two the nurse could deliver psychoeducational programmes, and could also support young people in transition, as well as support titration for medications. Marie concluded by stating that both money and investment were needed now in order to move the work to the next level of development. There were several questions from the other attendees following this presentation, and lots of discussion about how to encourage input and work from different disciplines within mental health. 2.9 Rachel King, Project Manager, Adults with AD(H)D Resource Team, NHS Lothian Rachel spoke after lunch and gave some reflections on the morning s presentations and discussions. The main points from the reflections were: There was clear enthusiasm for the first steps that had culminated in a national conference That presentations and discussions had focused on a joined up approach, both in terms of service development and in listening and learning from the experience of people with symptoms and experience of AD(H)D. Rachel encouraged attendees to think through the potential next steps both locally and nationally. 3. Workshops 3.1 Participants were invited to select two workshops to attend from a choice of four. The topics of which had been chosen to represent some of the key issues that the Adults with AD(H)D Resource team were approached about regularly. The workshops ran following lunch break and were 45 minutes in length. 3.2 The workshops proved to be both informative and participative. There was very good feedback from attendees about the workshops, 3.3 Being an adult with AD(H)D- Experience and Helpful Learning Facilitated by: Addressing the Balance Support Group This workshop aimed to raise awareness of the positives, issues and challenges of living with AD(H)D as an adult. And to share some of the helpful learning about managing key areas and daily tasks. Addressing the Balance are a national support group for men and women with AD(H)D. Members of AtB spoke and led a workshop around both some of the positives and life enhancing aspects to AD(H)D as well as managing with some of the challenges to daily living. 7

8 3.4 AD(H)D and Substance Misuse- Patterns and Uses Facilitated by: Dr Fiona Watson, Consultant Psychiatrist, Substance Misuse Directorate and Katy Sinclair, Recovery Development Worker at Forth Valley Addictions Support and Counselling This workshop provided information and promoted discussion about the uses and relationships within the use of substances and adults with AD(H)D. It also gave participants an opportunity to reflect on their awareness and practice in this area. This workshop was facilitated by a member of the Lothian AD(H)D Resource Team, who has a depth of knowledge and experience in Substance Misuse and Mental Health, as well as a recovery development worker, with relevant lived experience. 3.5 Criminal Justice and AD(H)D- An area to investigate? Facilitated by: Dr Alex Quinn, Consultant Psychiatrist, Forensic Services, Lothian and Kat Paterson, Senior Charge Nurse, HMP Edinburgh This workshop aimed to explore with participants the relationship and patterns of AD(H)D within the criminal justice system. It was facilitated by members of the prison mental health team. It gave an overview to this area and the challenges of working with AD(H)D in this context. The discussion provided an opportunity to consider good practice in this context and helpful tips for people working within similar contexts. 3.6 AD(H)D and the student population Facilitated by: Jacquie Nicholson, Mental Health Advisor, University of Edinburgh and Dr Lorna Donnelly, Consultant Psychiatrist, Edinburgh This workshop aimed to explore the experience of supporting students with AD(H)D. It provided time to explore this area of work, and to consider how best to support staff and students within this context. The workshop was facilitated by two facilitators who support students in their journey through university, from within and outwith the university context. The workshop gave participants an awareness of the work, and provided an opportunity for participants to reflect on the issues they face supporting students. It also provided a chance to hear about good practice and learning from across the different settings. 4.0 Discussion with Speakers and Facilitators 4.1 After the workshops there was a session in which all participants were given the opportunity to share their thoughts and feedback on the topics discussed, as well as ask further questions to the speakers and workshop facilitators. 4.2 There was interesting and fruitful discussion at this session. This involved comments and discussion about the role of the NHS and other agencies around supporting people with AD(H)D. There was also further discussion about engaging all disciplines, and how to take this agenda forward within NHS Boards. 8

9 4.3 There was a lot of interest in the room around substance misuse and AD(H)D. The clinicians from both mental health and substance misuse services gave informative and useful responses and raised important questions about how to work better together. 4.4 The Chairperson gave input and feedback about the day and the next steps to be taken both locally and nationally. There was a lot of positive feeling from the event, and people were pleased that a national event focused on adults with AD(H)D had been delivered. 4.5 There was also concern about how to implement and use what is known to be helpful to support people, and how to ensure parity across different areas of Scotland. 5. Reflections and Recommendations 5.1 There was good representation from both service users and carers as well as those involved in supporting adults with AD(H)D at the conference. This led to a good understanding about attendees priorities and action that was needed following the conference. 5.2 There were a number of very clear themes and interests about taking this work forward both locally and nationally. These are set out below with responses and proposed first steps. Theme Acknowledgement of how far the landscape has shifted in the last ten years Lack of equality and parity of service provision across Scotland s health boards Need for a system responsepolicy and action, local and national Action There have been many changes in our understanding of neurodevelopmental disorders especially in adults over this time. In Lothian we have reflected this in the new service model. We are now at a point of looking at joining with the wider work developing around neurodevelopmental disorders. Following the conference, the Lothian AD(H)D team will be meeting with members of the Scottish Government Mental Health (SGMH) Directorate. This was raised both at the conference by service users and professionals as well as outwith the conference over the preceding months. It is not something the Lothian team can address themselves. Following the conference, the Lothian AD(H)D team will be meeting with members of the SG MH Directorate and this will form part of the discussions. The Lothian Matched Care Model can be shared with colleagues across Scotland as this is the way that this has happened at a 9

10 Money and investment necessary for change at both a local and national level- lessons from the ASD work Importance of bringing services together Impact of comorbidities on treatment choices Importance of non-medical interventions OT Psychology Nursing and other healthcare professions in supporting someone with AD(H)D Attitudinal change and focus on gatekeepers Psychosocial education, mentoring, coaching and peer local level. Following the conference, the Lothian AD(H)D team will be meeting with members of the SG MH Directorate and this will form part of the discussions. This was raised both at the conference and outwith it. Following the conference, the Lothian AD(H)D team will be meeting with members of the SG MH Directorate and this will form part of the discussions This is the model that Lothian seeks to promote. The use of other services has been paramount to the success of the AD(H)D team s work Ensure dissemination of this conference report to as wide a group of people as possible, both those who attended and those who it would be relevant to. There is growing awareness of the way that neurodevelopmental disorders often present with other morbidities. The evidence around treatment of AD(H)D in adults is also growing and changing. The Lothian team will share their work on self-help and on resources that people can find useful which are not pharmacological. The Matched Care Model developed in Lothian has these elements as part of the foundations of the model. There is a growing evidence base around the use of these disciplines in developing this work. The Matched Care Model will be made available to all attendees of the conference and will be brought to the attention of the Scottish Government Mental Health Directorate. Within the educational aspect of the work of the team, emphasis on attitudes and values is highlighted. The Lothian team is looking at its training programme and priorities for the coming year following the conference. The team will be taking the comments on board about key groups to target. The evidence base is growing about what people find helpful for themselves or their 10

11 support all useful to individuals and families affected by AD(H)D That AD(H)D traits can be productive, useful and positiveincluding this in our models of understanding of support families in regard to managing AD(H)D and creating positive opportunities for themselves. The Lothian team are making available their work on self-help and support for individuals and their families. The team met several times with groups and individuals with lived experience in order to include a wide range of examples of helpful supports. This will be available on the NHS Lothian website A Sense of Belonging page. This understanding of AD(H)D forms part of the messages within the training developed by the Lothian team. It is also part of the self-help resources. Significance of transition times NHS Lothian has a Best Practice Protocol for moving from child to adult services. Although this is not the only transition time, it is a key one. Make the Best Practice Transition Protocol available through NHS Lothian website A Sense of Belonging page. 6. Words to end the day 6.1 Alison gave a final summing up and thanked all participants, speakers and facilitators. 11

12 7. Evaluation 7.1 Of the 92 people who attended the event, 46 completed an evaluation form The form is included in Appendix 2. The responses are detailed below. 7.2 The overall evaluation of the day was very positive. There were positive comments about the individual workshops, as well as the supportive nature of the event, and the topic being one that has not been covered previously. 7.3 There were concerns raised about what the next steps might be, how these could be delivered when there has not been money to support this work so far, and also who would be involved in this. 7.4 The individual comments are listed within the table below. Question/ Response How relevant did you find today s speakers How helpful were the workshops How suitable was the venue How positive was the experience today 0-2 (not good at all) 3-4 (not very good) 5,6 (average to good) 7-8 (very good) 9-10 (excellent) Totals * *1 person did not complete this question 7.5 Table of comments from each question within the evaluation. How relevant did you find today s speakers? Nice mix of perspectives, knowledge and experience (x2) Great Very informative, particularly hearing personal accounts (x2) Speakers really knew what they were talking about Very enthusiastic Good variety Some impressive presentations Welcome hearing from someone who could describe the skills that would be helpful for someone with AD(H)D (in the context of pills and skills) How helpful were the workshops? Substance Misuse: very informative and helpful x4 Criminal Justice workshop very insightful helpful and valuable, fascinating (x4) Addressing the Balance: good, though could have benefitted from being more interactive More interaction please 12

13 One very practical, one less so Very helpful/learned lots (x3) More on lived experience in the AD(H)D lived experience workshop (x2) Really informative debates/informative sessions Very interesting for my line of work Would have liked to attend more than two More time - for questions and discussion in workshops (x2) TV screens too small - difficult to read How suitable was the venue? Easy to find and travel to Really liked it Great (x2) Easy to park Very good Great food Arrangement of tables meant it was tricky to move around/exit How positive was the experience today? At times felt criticized for the failings of wider services. Some services trying to address concerns and challenges experienced by some people and this needs to be recognized. It was encouraging to be among others who feel this is such an important area/ issue Mixed- great motivation to improve services but disappointed at the barriers and lack of money to take things forward. Got a lot of information, which was very good Scope for AD(H)D form of clinical network? Needs to be more focus on what needs to happen Any further comments More on comorbidities and how AD(H)D can affect recovery in other areas for those with multiple conditions Where do things go from here? Not clear what next steps might be Will any of the suggestions for changing current practice be taken forward? How can we feed in local experience/ problems to strategic service planning etc? Slightly more convinced of the existence of AD(H)D Comorbidity is clearly an issue Best conference I have been to for ages, thank you More exploration of skills, deficits and difficulties Would like to attend future events Resources to be made available to all participants Microphones difficult to work for speakers (x4) Service user involvement was very interesting Interesting to hear similar issues and frustrations from across services Hope that today is a sign of things to come in the treatment of AD(H)D Enjoyed it, thank you 13

14 Excellent presentations, speakers and enjoyed the discussions Excellent day, thank you Very helpful day overall Well organised, thank you Writing paper would have been useful A balance of healthy snacks and biscuits would have been good. Sometimes at conferences one needs a sugar boost to help concentration 14

15 Appendix 1 Programme for the day AD(H)D can we have your attention please? National Conference Adults with AD(H)D 11 February 2015 Norton Park Conference Centre Edinburgh PROGRAMME Welcome and Introductions Alison Meiklejohn, Head Occupational Therapist, NHS Lothian Scottish Government MH Strategy Dr John Mitchell, Principal Medical Officer, Scottish Government Learning from Lived Experience Pru Jones, Addressing the Balance Kate McLaughlin, Independent Service User Neurodevelopmental Perspective Helen Minnis, Professor of Child and Adolescent Psychiatry, NHS Greater Glasgow & Clyde Break and refreshments Lothian Model Fiona Watson, Consultant Psychiatrist, Addictions, NHS Lothian Julie McGuire, Lead Occupational Therapist, West Lothian Children s Service, NHS Lothian Glasgow Model Ishbel McIver, Consultant Psychiatrist, General Adult, NHS Greater Glasgow & Clyde Lunch Reflections on the morning Rachel King, Project Manager, AD(H)D Resource Team, NHS Lothian To workshops Workshops Break and refreshments Workshops Back from workshops Q&A Discussion Closing remarks Alison Meiklejohn 15

16 Appendix 2- Evaluation form for the event A sense of belonging A joint strategy for improving the mental health and wellbeing of Lothian s population Can we have your attention, please? National Conference: Adults with Attention Deficit (Hyperactivity) Disorder (AD(H)D) Evaluation Form In order to help us plan future events, please rate the following: How relevant did you find today s speakers? Not very relevant Neutral Very relevant Any comments: How helpful were the workshops? Not very helpful Neutral Very helpful Any comments: How suitable was the venue? Not very suitable Neutral Very suitable Any comments: How positive was today s conference experience? Not at all Neutral Yes, very positive Any comments: 16