Telford and Shropshire Autism spectrum Disorder. Draft Parent and Carer Information Pack SURVEY REPORT JUNE 2013

Transcription

1 Telford and Shropshire Autism spectrum Disorder Draft Parent and Carer Information Pack SURVEY REPORT JUNE 2013 Page 1 of 13

2 Index Page 1. Background 3 2. Audit project group 3 3. Aim 4 4. Objectives 4 5. Standards 4 6. Sample and methodology 5 7. Results 5 8. Conclusions Recommendations and Action Plan Report Circulation List 11 Appendix 1: Survey questionnaire 12 Page 2 of 13

3 1. BACKGROUND In April 2011 Rachael Jeavons, Michelle Troth, Hilary McGlynn and Alex Hiam (who has now left Parent Partnership) met to review both the Telford and Shropshire autism pack and put together an information booklet for Shropshire and Telford (two separate booklets). Since then there have been many changes in services so Michelle and Rachael came together to review the pack which includes general information on autism and information from Shropshire and Telford Services. Michelle Troth and Rachael Jeavons initially made contact with another ASD Co-ordinator in East Sussex whose role appears to be slightly different (E Sussex is a pathway finder authority for the SEND green paper) but she still works in the ASD field and has put together an ASD Information Pack. Rather than re-inventing the wheel, Telford & Shropshire Co-ordinators initially made links with the Sussex Co-ordinator (who was happy for the co-ordinator s to refer to the Sussex pack and acknowledge the source) and also worked with a range of professionals including occupational therapists, psychologists as well as local services including Parent Partnership and Autism West Midlands. The co-ordinators have now collected all of this information and the autism pack is now in its first draft. Local parent support groups, Shropshire Parent Carer s Council (PACC), Spectrum and Telford Parent s Opening Doors (PODS) have been involved with the pack update and have agreed to provide feedback once the pack is in draft format. Michelle and Rachael met PACC to discuss the pack, it was suggested the most efficient way of collecting feedback would be to send an electronic survey. The survey was sent to PACC, Spectrum, PODS, Shropshire and Telford Steering Groups, as well as all professionals who have contributed to the pack. The results of that survey are described in this report. 2. AUDIT PROJECT GROUP Name Job Title Role R Jeavons Shropshire Autism Audit Lead Coordinator M Troth Telford and Wrekin Audit Lead Autism Coordinator T Whisker CAMHS Manager Audit Supervisor M Bramble Clinical Audit Coordinator Audit Support Table 1: Audit project group Page 3 of 13

4 3. AIM To ascertain that the Parent and Carer Information Pack meets the needs of the intended purpose and that all involved agree that it provides accurate information in a user friendly format. The pack will be a web hosted pack that is downloadable/ printable in topic sections. There has been input from professionals in developing the pack and we aim to ensure that the information in the pack gives clear and useful information and advice in a format that parents going through the diagnosis process. 4. OBJECTIVES Provide the opportunity for both parents and professionals to feedback their thoughts and comments on the first draft and how useful the pack will be. Ensure the pack is as useful and user friendly as possible. By sending the survey out, this will give both parents and professionals working with families the opportunity to feedback their thoughts/ comments/ recommendations before the pack is launched. 5. STANDARDS Standard 1.9 Information and support for families and carers Provide individual information on support available locally for parents, carers, children and young people with autism, according to the family's needs. This may include contact details for local and national support organisations (who may provide, for example, an opportunity to meet other families with experience of autism, or information about specific courses for parents and carers and/or young people) organisations that can provide advice on welfare benefits organisations that can provide information on Source CG128 Autism in children and young people: NICE guideline Guidance Any Exceptions Page 4 of 13

5 educational support and social care information to help prepare for the future, for example transition to adult services. Findings: Following responses around improving information around post diagnostic support and resources, to review the current ASD pack. Survey of post-diagnostic experience of Children and Young People with Autistic Spectrum Disorder and their families in Shropshire SAMPLE AND METHODOLOGY PACC, PODS and Spectrum members were sent an electronic survey to complete. Colleagues involved with the pack and others who have shown an interest were also invited to complete the survey. Both Shropshire and Telford steering group members were asked to participate. A two week window was given for completion of the survey. 7. RESULTS 24 Participants took part in the survey. 7.1 Overall, I found the Information Pack to be useful (N=24) Strongly Comments: Disagree Neither nor agree Agree Strongly agree % 87.5% Reads really well and very informative There are some useful contact details for helpful agencies such as PACC, and Shropshire Council benefit advice Great that you can download separate sections to meet needs of family. Very informative!! There is not enough information for parents so this is great! I found the layout easier to read and to lock in on areas, the best is the list of books and contacts Covers most of the main areas required I liked the clear message that everyone is different, but that there are some similarities within ASD presentations Page 5 of 13

6 Good range of information and quite a lot of detail with lots of links to other sources of support. Explains in great detail and also understandable to read. Great to read something that resonates very informative/supportive. I thought it was a good informative pack. I feel it could do with a bit more colour and pictures. Front cover could represent pictures from different age groups 7.2 For a family receiving a recent diagnosis, the right amount of information was provided in the pack (N=24) Strongly Comments: Disagree Neither nor agree Agree Strongly agree % 83.3% A good balance between helping to understand the condition and suggesting everyday practical help. It's a really useful starting point, as well as signposting more information. I thought so - liked the idea of the different resources that they could look at though very difficult to generalise this information - may be too much for some and not enough for others. The amount of information could be overwhelming to read for a family new to autism. Devastating is the wrong word to use, autism is not life limiting! Hard to come to terms with /understand might be better. Great information, maybe a bit too overwhelming at first - maybe a single sheet with a few helpful pointers and contacts on? Maybe CAMHS could give a printed copy with a diagnosis as not everyone has internet access to be able to download and print. Would like some parent stories there too - thought that maybe there would be some case studies in parent support section. 7.3 The information is written in a way I could understand (N=24) This question was not answered in 2 cases (8.3%). Strongly Disagree Neither nor agree Agree Strongly agree % 87.5% Page 6 of 13

7 Comments: Some families will struggle to understand but that could be said of any publication written in a jargon free format without the use of anachronisms that are so hard to remember The contacts are clear and very useful. Be easier in bullet point form. Parents have got a lot to take in and process. Less wordy please. Generally yes but more of the parent's voice perhaps with some case studies. I am already familiar with the information so hard to judge how universally understandable it is 7.4 The inclusion of a section to allow parents to make their own notes would be useful (N=24) Strongly Comments: Disagree Neither nor agree Agree Strongly agree % 79.2% Good idea It gives them the opportunity to make notes on professionals they may contact etc. This would be very helpful. I currently make notes in another book and sticky notes. Very useful 7.5 At present, the term Autistic Spectrum Disorder (ASD) is commonly in use including by NICE although condition rather than disorder is being used increasingly. Please indicate which of the two terms you feel is most appropriate and indicate the reason for your response (N=24) Autism Spectrum Autism Spectrum Don t know/not sure Disorder Condition % 16.7% 25.0% The reasons for the responses given are provided below. 13 participants gave a response. Autism Spectrum Disorder Because that is the recognised term, and another change complicates matters needlessly. Condition automatically makes me think of skin condition, heart condition, etc. Condition, makes it sound as if it is something that can get better or be cured. I think condition just doesn't sound right and disorder explains it more. Page 7 of 13

8 It does not change how the person is and if everyone knows it as ASD then why change it! It implies that a person with ASD thinks and behaves because of the way their brain is wired in a different way to N.T.Ps. Most people with ASD find the world around them a disorder. Seems ironically appropriate. People understand the term ASD. People will be easily confused if its changed as you can t change all pre-printed books! The description in the DSM-5 just published. Autism Spectrum Condition Not heard the 'condition' option before, but I prefer it - it implies difference rather than disorder/disability. More positive. Not strong feelings either way though People with Autism prefer condition as they do not consider themselves 'disordered'. Don t know/not sure Both mean the same thing to me. 7.6 Comments or further suggestions Think it reads very well and crams in a lot of useful information. I have spoken to many parents and children over the years yet I still learned something new by reading it. A really good concise guide that will help a lot of people. A really easy pack to read and understand. I cannot think of anything that has been left out. I wish I had read this years ago. A more family friendly approach may be useful at diagnosis, such as a worker from Autism West Midlands or PACC available to answer parents questions. I feel it could do with a bit more colour and pictures. Front cover could possibly represent pictures from different age groups i.e. young children up to young adults... The section "What is an Autism Spectrum Disorder?" page 3:- should include "may avoid eye contact" in the bullet points. I think it would also be beneficial to give an example of "it's raining cats and dogs" where you have said they take things literally. Page 4:- could you give examples of famous artists / musicians / writers? Having a name might help parents realise what can be accomplished. The desire for sameness and routine: I feel this might be easier to read if in bullet point form. Parents have got a lot to take in and process and if it is in bullet point it is easier to scan and remember. Needs to be less wordy. Page 6 - I strongly believe this should be added to the bullet points on "Is there a cause". There is no link to having the MMR injection causing autism. Where can I get more information? It would help a lot if there were suggestions on sibling/parent/ carer/ family/ friends help...where they can go for support e.g. someone to talk to. "Talking to your child about their autism spectrum condition" Could I have more information on the "I am Special" workbook and are these used in schools? Is the pack aimed at a certain age group as the activities are not age appropriate for some children whom I know have been diagnosed in their teens.. "Understanding and dealing with difficult behaviours" As a Parent of a child with autism I feel "incomprehensible" should be changed to confusing. You need to think about the Page 8 of 13

9 parents who will be reading it and explaining it to family members. The simpler it is the better. Keeping stress to a minimum the parent or carer may not realise encouraging the child to make eye contact can result in behaviours (it depends on the child) give positive feedback and praise, use distraction when you are heading towards conflict...these should be nearer the top of the list. Page 7 "Don't swear at Mummy" it depends on the age of the child and if they are in meltdown. You could be telling a child this who may also have Tourette's???? You need to offer rewards that are achievable but also give the child a challenge. i.e. see if you can get your school uniform ready the night before. (sounds something small but if they get anxious about school it can take time to build up to it). Anger & aggression meltdown plan - it s great telling parents / carers about it but who will support them to come up with a plan. Emotional Tool box its great telling parents / carers about it but who will support them to come up with a plan. Parents have enough to deal with coming to terms with the fact their child has autism and they may have known for some time but had not had the diagnosis. Support for Parents (and Carers) I strongly feel "devastating" is the wrong word to use as autism is not a life limiting illness! hard to come to terms with or hard to understand might be a better phrase. The second paragraph describes support for the child but rarely give the same time to their own needs...what is available???? The Face2Face is currently in Shropshire but where would you currently go for Telford and Wrekin. Page 2 lists help available but there is no mention of direct payments, Stepping stones, disability children's team. Page 3 mentions "Spectrum" how can parents attend with their children that late at night. Education Lots of helpful information but who will support the young person from secondary school to Further Education. Financial Support Merlin's Magic wand This might benefit families as it s "family" day trips and not just for the child with autism. My general feeling is there is a lot more support in the pack for families in Shropshire than in Telford, how can Telford improve the services for the children with autism? Parents are unlikely to print all of the information off although all of it is important. Will copies be available in libraries for residents to read? More colour, pictures, direct parent quotes, examples of real life stories. A siblings section. Advice for brothers and sisters? A mention of comorbid conditions associated with Autism such as dyspraxia, ADHD, epilepsy etc. I know the information is aimed at autism diagnosis but a lot of children are diagnosed with more than one condition. There are some FAB diagrams on the internet showing in picture form (people relate better to pics) showing the main characteristics of conditions such as sensory processing, dyspraxia, autism etc. Maybe enclose a couple so that people can give them out to other family members as a quick guide to their children s condition. FAB idea though, well done :) I think the new layout is very useful and very clear and you can hone in on areas that are of more interest. The list of books for all is a wonderful idea, I am currently reading a book called "A called like Henry" and I find these books very helpful as it relates to daily life and gives you ideas for the daily routines and also makes you feel like you re not on your own. That s the biggest thing for me is sometimes you do feel on your own. There should be something about support/advice on the internet - part of support for parent section perhaps(?) this was the section where I thought there were some things lacking. Internet can be a great source of help, message boards, forums, organisations using Facebook etc but also need some caution about other sites. Contact a Family have a good leaflet which could be linked to. Parents section also does not list all the support groups in the county. Page 9 of 13

10 Overall, I really liked the use of sections within the format of the information given. I think a Question and Answer Section at the end might be helpful in addressing the issues within everyday situations. I did not see any reference to the Learning and Behaviour Team other than the Early Bird information. The L&B team have 2 senior advisory teachers for ASD available to offer valuable information, advice and strategies to schools, children and their families. This is a service which many of the Telford schools and SCC schools already use and it would be an enormous missed opportunity to not raise the awareness and availability of this quality service at the information pack stage. I would be happy to contribute further if this is possible. Belinda Sherlock belinda.sherlock@telford.gov.uk. Great pack, very informative and supportive. I wish I had this available when my son was diagnosed. Well done to all who have produced the pack :-) As someone early in the process of getting to grips with things, I devoured the pack! I'm having to reply in a hurry and read it in a hurry too. I think the idea of being able to easily update sections is great. Maybe people could continue to provide feedback as they use the pack and information over time? I understand that the DSMV use the terminology disorder. Barnardos have completed a study and actually asked the people who count. The people with autism. They and their families prefer ASC. Barnardos and the AET use ASC. NAS when I asked said they would not change as all their literature was ASD. 8. Conclusions Respondents were generally positive about the information pack with the majority responding positively to questions about the usefulness, quantity and understandability of its contents. Just over half of respondents (58%) preferred use of the term Autism Spectrum Disorder, with a quarter stating that they did not know or were not sure. 9. Recommendations and Action Plan Key finding Recommendation Actions required to implement recommendation Person( s) responsi ble Timeframe 7.5 Question re. ASD terminology 58.3% of the responses agreed autism spectrum disorder is most appropriate To use autism spectrum disorder throughout the information pack Rachael Jeavons Michelle Troth August Question re. usefulness of a notes section 79.2% agreed/ strongly agreed that that it would be useful to add a section for parents to make their own notes To insert a notes section at the end of each chapter Rachael Jeavons Michelle Troth August 2013 Page 10 of 13

11 7.6 In the comments section of the questionnaire, suggestions were to add more colours and pictures and more parents views To include more colours, pictures and views for parents when possible. 1. Colour tab to indicate each section at the top of every page 2. More visual images added throughout the pack 3. To include the parents comments/ real life stories we have collected from PACC/ PODS/ other sources Rachael Jeavons Michelle Troth August Report Circulation List Shropshire CAMHS Telford CAMHS Shropshire and Telford Community Paediatrics National Autistic Society PODS PACC Spectrum Shropshire Steering Group Helen Swindlehurst Laura Johnston Clive Jones Karen Perry Autism West Midlands East Sussex Autism Co-ordinator (Heather Sharp) Parent Partnership Chris Westwood (Financial Support Team). Page 11 of 13

12 Appendix 1 Autism Spectrum Disorder Draft Parent and Carer Information Pack Feedback Questionnaire We would be grateful for your feedback on the draft Parent and Carer Information Pack. We need to ensure that the Pack meets the needs of its intended users and provides accurate information in a user- friendly format; the information you provide will help us to do that. Please answer the questions below by telling us the extent to which you agree or with the statements made, then press the 'Submit' button once the questionnaire is complete. Thank you. 1. Overall, I found the Information Pack to be useful Strongly Disagree Neither agree Agree Strongly agree nor Comments: 2. For a family receiving a recent diagnosis, the right amount of information was provided in the pack Strongly Disagree Neither agree Agree Strongly agree nor Comments 3. The information is written in a way I found easy to understand Strongly Disagree Neither agree Agree Strongly agree nor Comments 4. The inclusion of a section to allow parents to make their own notes would be useful Strongly Disagree Neither agree Agree Strongly agree nor Page 12 of 13

13 Comments 5. At present, the term Autism Spectrum Disorder (ASD) is commonly in use including by NICE although Condition' rather than 'Disorder' is being used increasingly. Please indicate which of the two terms you feel is most appropriate and indicate the reason for your response Autism Spectrum Disorder Autism Spectrum Condition Don't know/not sure 6. Please state the reason for your response 7. Finally, please use the space provided below for any further information, comments or suggestions you may have. Please press Submit once completed Page 13 of 13