Thursday 22nd November 2007 - The Derbyshire Branch of AFT



Day Workshop: 17 November 2011

Systemic and Intergenerational Approaches and Practice Relating to the Autistic Spectrum (ASD) and Attention Deficit Hyperactivity Disorder (ADHD)

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Participant Pack Information

Online – great!

Wish I’d had it beforehand.

Lesley Novelle and Gary Robinson – Welcome and Setting the Context

Great introduction of the systemic network in Derbyshire.

Laura Hatton – Effects of Autism on the Whole Family

Absolutely outstanding.

Loved listening to Laura – looking forward to reading her publications.

Really powerful and insightful.

Very relevant to my personal situation. Thank you, very much appreciated Laura.

Brilliant – I shall signpost my daughter to read your work, I’m hopeful she will find it helpful.

Utmost respect for this young woman. Laura has come a long way.

Fantastic, brave, thought inspiring.

Laura’s generosity in sharing her story was amazing and that she could was a tribute to her family.

Fantastic, wonderful insight. Heart warming account which would be beneficial for all to hear!

Fabulous presentation from an inspiring young lady.

Forgot to thank sister.

We should have thanked her sister. I did privately – she was in the room and was spoken about.

Fantastic presentation – lots of trust in all family members to share this information to a large group.

I wonder if she felt pressure to get an agent! Fantastic opportunity to witness the human home experience of living with a sister with autism.

Absolutely brilliant. Very brave and honest.

Absolutely brilliant! Moving. 1st hand experience. Good champion for raising awareness.

Extremely insightful, excellent presentation.

Absolutely fantastic young adult…….. Very thought provoking in terms of professional practice and how we view the relatives when dealing with ADHD and ASD.

Very moving and comprehensive.

What a fabulous presentation. Everyone working in this area should hear this.

Thank you for sharing your thoughts and about your family. The account has really made me re-think my practice and the importance of ensuring all family members are considered and supported and not forgotten.

Very interesting – eye opening to actually hear from a sibling.

An amazing young woman. I would like to advocate for her cause with other families I work with who deny the effect on siblings. On a personal note, I am going to attune a bit more to my daughter whose sister has a diagnosis of Reflex Anoxic Seizures. I will check if she means OK.

What an inspiration! How ever hard I try to show my understanding when working with siblings of y/p with ASD, I feel what Laura brought was true understanding and something; I will never be able to bring. I certainly need a Laura in my work.

Amazing speaker – finally the opportunity to hear the sibling/young carer voice. Many thanks. Please try to get her to publish her work.

Lucia Whitney – Reflections on Research and Practice ASD

More than I needed on diagnosis and treatment, less than I wanted on systemic and intergenerational patterns and family therapy specifically.

Very relevant and helpful.

Contained useful facts I will be bringing up at future discussions in assessment of my son

Helpful connections to Laura’s presentation – thanks Lucia.

Reference on slides would have been helpful. Answered difficult questions well.

It was really refreshing to see a consultant psychiatrist so open and in tune with her clients. I would love to work as part of her team.

Liked her style and the way she conveys her knowledge.

I would like to hear more detail about systemic therapy with families who have members with ASD. I appreciated learning directly from the parents via video.

Enjoyed her presentation and humour.

I am more informed.

Please do not read direct from slide, we could do that – please just enhance

Lucia should perhaps (I say tentatively) use a script.

How insightful and valued – refreshingly – her humility. We use relaxation and mindfulness NLP approach with ASD young people and it is really effective to reduce arousal states.

Left feeling despondent about state of the NHS, Government etc. and way Trust just responds to crises.

Very engaging presentation.

Relevant information but too much information on PowerPoint slides to process. The video (of the parents) was poorly edited and introduced giving little background as to the situation. Although not wishing to devalue the parents experience, there were at least four inpatient units mentioned also little sensitive given to staff who have worked in these units (which I did at that time).

Anne Hughes and Dave Hughes - Butterflies

Obviously nerve wrecking for presenters but they were excellent – thank you!

Very engaging and approachable.

Fantastic resource.

Excellent – parent powers.

Inspirational!

Useful resource/information for many professionals.

Raised my awareness about their website.

Wonderful to see an idea come to fruition and all the hard work.

Great information about great network. Open, free. I wonder if we (professionals) could circulate leaflets in services in our localities to spread the word of this great resource.

Excellent presentation but less information re work with families.

Very impressive what they have achieved.

More relevant to people living and working in the Derby area but will be visiting their website.

I think their initiative is something to envy.

Great strength as a couple.

I admire how this couple have identified a need and risen to the challenge and now providing a much needed resource benefiting so many families.

Fantastic growth of an organisation over the last three years.

Doing a great job.

Well done – love the stand and t-shirts.

Will look at website.

Clearly a brilliant resource.

Leigh Morton and Tracey Goodrum – Frantic Families

Fantastic parents support.

Inspirational!

Strength of the small group and common difficulties.

Hope to visit them; they have a lot to offer.

Would like to hear their top tips – they must have loads!

Inspirational!

Bit more information would have been good (especially on poster) – what time you meet, if there’s a website, how big the group is, whether formal diagnosis is necessary etc.

Excellent – parent powers.

Inspirational people with so much determination.

The why was answered but the what and where was missing.

Just needed a little more info – but great – thank you!

Lisa Brown – My Life with ADHD

Presented by Gary and very interesting.

Thought provoking. I would have enjoyed hearing it from Lisa, although Gary brought you back into the room. I really appreciate hearing such valuable expertise from experience.

Just a shame you weren’t here to deliver it in person. Thank you for being so giving of yours and Nathan’s story. Nathan – get your poetry published – IT’S FANTASTIC!!!

Lovely … but missed Lisa.

Wish she’d been there. What a talented child and a wonderful mother.

Would like to know more about what/how she feels filial therapy has helped. I facilitate filial therapy in CAMHS and parents don’t engage because their children have ADHD and it won’t work. I invite them to give it a go – any advice? Because I believe in this intervention.

Resilient lady. Underlines importance of relationship in everyday life.

Disappointing that Lisa could not share her story herself.

How sad that she was not able to present this herself.

Inspiring.

Thoughtful life stories.

Shame Lisa couldn’t present her own story. Brilliant and very insightful. Touching.

Inspirational to any parent with a child with or without a diagnosis.

I was disappointed not to hear this speaker. I was not aware the timing had been changed and began to feel concerned the programme had run over before coffee.

It would have been better if Lisa had done her own presentation. I was really sad to hear that her slot had been moved back and that she had had to go.

I really appreciated her insight of personal experience and the wish to share tips to help others.

Sorry we didn’t meet you. Loved your son’s poems.

Very good definitely going to the next DAFT meeting in February.

Has great courage and determination. Demonstrates the great connection between Lisa and son Nathan. I love his poems.

Great presentation – the meaning was apparent even through Gary’s reading.

Be great to hear Lisa present in February.

Shame how timings worked out – looking forward to meeting Lisa again at DAFT. Fab poems Nathan.

Good presentation – sorry not to meet Lisa. Such strength and resilience you have. Nathan’s poems were brilliant especially the one about the river to the sea.

So sorry Lisa could not stay to do this herself.

Would have liked to have heard from you – poetry fabulous.

Moved by musical connections and your life script! Positive outlook

Be nice to see her (great inspiration). Thank Lisa for sharing her story.

Gary Robinson – Top Ten Tips Relating to ADHD

Great advice.

Useful.

Very useful tips, love Tish’s quotes. Terrible choice of music!!!

Ta! Brilliant!

We will get the students to link this to theory at a later date.

Applicable tips – thank you! I’ll take them back and ask my families for their views.

Enjoyed the mindful quotes.

Good ideas – get Tish published.

I enjoyed the interaction with the group.

Good tips, useful.

Good workable tips.

Useful checklist.

Great tips. Powerful, thought provoking messages/quotes.

Useful ideas for practice.

Useful to share with parents and to remember this as a parent myself.

Gary’s or Tish’s. Shame about the music.

Tish needs to publish her work – please.

Good tips! Good fun!

Good useful words.

Quick philosophical (which I like) How does this translate to doing i.e. clinical examples?

All brilliant tips (and quotes from Tish) just really badly delivered – stop messing with the tech (embed the song tracks in the PowerPoint slides) will make it more slick!

Steve Edgeley and Gary Robinson – Neurodevelopmental Service Developments

Fighting talk!

Steve is a natural!

Fantastic news.

Very informative.

Hope to us all that somebody is listening!

Promises come easily from management. Actions speak louder than words. QED.

Steve hard to follow. Again, a script might (I say tentatively) have enabled him to be clearer.

Has given hope.

Appreciated his overview. It’s why I am doing what I am doing re the course.

Very interesting to hear from the Trust.

Hopes!!

Good Family Therapy has a future in Derbyshire.

Not relevant to myself but I hope what was talked about does happen.

All the equality just left the room.

It was interesting to learn about the senior management perspective and heartening to hear of the recognition and forthcoming developments re family therapy.

Come back to Leicester Steve.

Would it be a good idea to employ experienced practitioners into post similar to the way IAPT have done?

Charismatic speaker! Hope for the future (

More detail about how this might be funded and enacted would have helped.

Heartening to hear a senior manager on the same side and taking a preventative approach, not the usual reactionary approach.

Very interesting re larger system perspective and how it is influenced.

Unfortunately this is hard to understand in the context of cuts and complete devaluation of other types of therapy within the Trust. There is a mismatch between what is being said today by Steve and what is actually happening. Nevertheless good to know his heart is in it.

Didn’t completely understand how NHS Trust funds were sanctioned/justified. Aimed more at future practitioners.

Overall enjoyment of the day?

Very informative as a parent and gave options for additional support groups. Thanks.

Got a lot from the day. Experts were invaluable in their input into this. Thank you.

Variety of the day – good.

Much of it very enjoyable. Some was not what I expected from the title of the day. Might have liked more about specific family therapy approaches, methods and techniques related to ASD and ADHD.

As good as all events, the standard remains high!

Always room for improvement! (smile).

A valuable and insightful day – thank you.

Venue and Facilities

Good venue but long queues for toilets, drinks and food.

In need of light, but inevitable in lecture theatre.

Good as ever.

Car parking signs not clear.

Not friendliest lecture theatre.

Hard chairs.

Uncomfortable for a whole day.

Any Further Comments

Got a lot from the day. Experts were invaluable in their input into this. Thank you.

Variety of the day – good.

I would have been happy with less in the way of breaks especially the afternoon tea break – could have finished earlier.

Today was inspiring in terms of helping me think about the work I do and the impact of this not just on clients but also on their family members.

From a parent’s point of view there was some jargon used but not explained.

Publicise RAPID training and make it affordable to all. Speed up assessments for ASD and ADHD. Informative, interesting and friendly.

Very, very informative from all different areas i.e. professionals, siblings and families. Gary needs IT support. Tish’s quotes are very good.

A good balance of the voice of experts by experience and professionals.

Time keeping! It’s a shame the day ran over. Although it was in interesting discussion it’s not fair to keep us hanging!

Got a lot from the session. Gave us a broader understanding of the complexities of this type of condition. Made me realise and think about the amount of individuals that are in the mental health system who have these kind of difficulties.

Very interesting formal/informal setting.

A bit of space for participants to discuss what’s happening in their service re ASD and ADHD.

Thanks for organising this and for it being affordable.

Really liked the variation in presentations. Experts by experience, peer support and professionals.

Fantastic value for money.

Good organisation by Sue.

Have people (especially the support groups) heard of “The Nurtured Heart Approach” Howard Glosser – which focuses on success and an individual’s greatness. We run parent/carer workshops for the difficult child (including ADHD).

Thank you for an excellent day. I found it a really helpful balance of ideas around practice, information and inspiration. More systemic theory might be nice too.

Good as ever.

Learnt a lot.

Good balance of representatives. ‘Experts with experience! Love the description. Practical tips.

Very powerful and impacting to have ‘experts with experience’ involved. A good day for network sharing information and experiences.

Would have been good to have more background information on ASD and ADHD.

I think it was really sad that we lost out on Lisa presenting her own material especially as emphasis was given to parental presentations to the group. Timings are really important.

Timings need to allow/ensure that parents who offer to share their stories don’t get missed out – they are the experts.

Good idea to make conferences cheap rather than pay for drinks etc. –makes them more accessible. Very good atmosphere, felt it was good at providing information. Was punctual all day but then additional reflective themes seemed to contribute to it running over, as well as additional verbal reflections and feedbacks.

Susan – excellent in pre-course materials and organisation/liaison.

It was disappointing that the timing was changed so Lisa could not do her presentation – I was looking forward to hearing her.

Excellent mix of professionals and experts through experience!

Well presented, very interesting and thought provoking.

Extremely enjoyable and informative, it would be good it we had the support of management re importance of support and service for the family.

I am greatly impressed by the huge achievements of DAFT over the past few years/partnership working with families and their very prominent involvement in such events. I am concerned about future access to CAMHS, preventative working, working to avoid diagnosis where in many cases there has been significant early trauma, developmental trauma and other complex issues which require long term treatment and are not “diagnosable”. Risks of over-diagnosing? And won’t meet CAMHS criteria.

Excellent information and honesty from ‘experts through experience’.

Thank you for co-ordinating the day and for putting it all together!

Suggestions for future events?

The education sector need to hear these accounts and presentations.

Themes on attachment. Ethical considerations.

More time on parents experiences. Inviting people from education and social services.

More from individuals with personal experience of the conditions.

Supporting children’s emotional health that have ASD/ADHD.

Putting things into practice.

More sharing of practices and resources and what has worked well in practice.

Keep going.

Feedback from clinicians and their thoughts in dealing with ADHD and ASD. Feedback from SENCOs and Head teachers.

Narrative work.

Representations from NICE guidelines to hear parents of children with neuro disorders talk about usefulness for family therapy in their struggle/journey.

It would be good to have people’s affiliations and email addresses on the attendance list.

What did you enjoy most today?

The stories of real lives and real practice.

Laura’s story.

Hearing from parents and some opportunity for discussion.

Experts by experience presentations. Gary’s Top Ten Tips were brill.

Laura’s presentation, Lisa’s presentation – both gave hope and inspiration.

Great balance between professionals and experts through experience.

Laura’s presentation.

Great buzz, great to see level of respect in room.

Laura’s presentation was very powerful. Hope the professionals who spoke use it and her.

The whole experience.

Hearing different experiences.

Laura, Lisa and Gary.

E by E contribution – a phase I still have to learn.

Everything.

The personalised aspects of learning about families experiences. Very evocative.

I enjoyed listening to Laura and thought that she was very honest and brave. Her family were also brave and it was good to see their connection and support for each other.

Laura.

Hearing personal experiences, hearing about wider families experiences, hearing about support groups. Awareness.

Have enjoyed the day particularly effects of autism on the family. Laura.

Hearing Laura’s tory and reading Lisa’s story.

Chance to see familiar faces.

Laura’s presentation.

Laura’s presentation and Gary’s Top Ten Tips.

Laura was outstanding. She has a wealth of courage and confidence. I hope she goes on to do more telling others of her experiences. Well done Laura.

Laura’s presentation.

Laura.

Laura’s story.

Gary and Lucia’s bits.

Laura’s story was sad but also inspiring and to remind us all not to forget other children within the family. Laura’s narrative would help so many people and she should explore having it published.

Gary and Lucia. Laura.

Everything.

Variety of professional and personal reflections. Giving a voice to the very people who matter but are often lost in the systems

Listening to and about experts by experience!

Input from experts by experience.

Top Ten Tips.

People who experience ASD/ADHD (families) particularly Laura first thing this morning. What an opening to a great day! Many thanks to all.

Hearing young people having a voice.

Hearing about peoples experiences – really brought issues to life.

Friendliness and camaraderie and inclusiveness of the event.

Relevance and good advice for a parent and not too ‘techy’ – thanks.

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