Health, 2 free events, ISCD, Bedtime & Music 26th August 2017 Dear All That’s five items in the title! (we couldn’t find a way to make the title shorter). And we hope the newsletter is succinct and as useful as ever…
Health Special - What else did we find out? We’ve had really good feedback about last week’s Health Special. (thank you!) Here is the link to our past newsletters: www.sendfamilyvoices.org/news Here’s what else we (Caroline) found out… • From April 2016, it has been a contractual requirement for all English GP practices to form a Patient Participation Group (PPG) and to make reasonable efforts for this to be representative of the practice population • I’ve called a few GP practices and been told they are generally made up of a group of volunteer patients, the practice manager and one or more of the GPs from the practice, some meet on a regular basis to discuss the services on offer, and how improvements can be made for the benefit of patients and the practice. Some surgeries don’t meet and prefer to communicate via email. • Anyone can request to join their own GP's (PPG) within the surgery they are registered at. • Some GP practices advertise this group on their website, if not the practice manager can provide details. I’ve (Caroline) contacted my own practice manager to request to join my practice. I was surprised to learn it has been in existence for a few years but there was no SEN/disability voice! Are you aware of your own GP’s PPG? If not – please ask – and then join it. Let’s get the voices of our families represented and heard! NHS England rely on theses group to obtain feedback on issues and increasing patient choices for referrals etc. This matters. Hopefully, more news from hospitals next time.
CCG Involve (more on Health) CCG = Clinical Commissioning Groups “The CCG commissions some services from GP practices which are over and above the services set out in the standard GP contract. These are often known as locally commissioned services (LCSs). GP practices can choose whether, or not, to deliver these services. Before we agree the LCSs for 2018/19 we want to make sure that the services are the right services to meet the changing needs of our local population, deliver the best health outcomes for patients and provide value for money. To help us to do this we are setting up a steering group to undertake the review of LCSs and make recommendations. The group will
be made up of patients and carers, CCG commissioning staff, GPs as clinical commissioners and practice staff. The information attached sets out in more detailed how people can get involved in these reviews. We are keen to have a patient/carer perspective in this work and hope you will be able to share this information within your networks and encourage people to attend. It is anticipated that the first meeting will be after 19 September. Once dates, times and locations of meetings become available we will share this with you. We are seeking initial expressions of interest by Friday 8 September 2017 to ccginvolve@richmond.gov.uk or (we assume) ccginvolve@kingston.gov.uk Kingston & Richmond Clinical Commissioning Groups (CCG)”
You are not alone The Richmond National Autistic Society (that’s Alison with other parents) have written a very gentle booklet about when to worry, or not, about your child. The booklet offers immediate practical steps parents can try to support their child; and then what to expect, IF they decide to pursue a diagnosis of some kind. We’re delighted to say that this book – written entirely by parents of children with autism (at all points on the spectrum) - is flying out of the door. Please contact Alison on richmond@nas.org.uk for copies. You can read a copy of the booklet here (scroll down a bit): http://www.richmondnas.org/our-branch-news.html
Family Information Service Lat week, some of you may have received an e-mail from SENDIASS stating that the Family Information Service from SENDIASS has come to an end… Please note that the SENDIASS Family Information Service is not to be confused with the Family Information Service (FIS) run by Achieving for Children under the Early Years’ Service.
This service still exists. You can find out more about the role of FIS on the AfC info website here: https://www.afcinfo.org.uk/pages/community-information/information-and-advice/aboutthe-fis
End of Summer… things to do… & they’re Free! Note: please don’t just turn up. Make sure you visit the links at the end of each event’s details. 1. Redlees Park Family Fun Day, Isleworth – from MeToo&Co Bank holiday Monday, 28th August, from 12 noon to 5pm.
Me too & Co, a local charity for children with additional needs which welcomes families from Richmond, Kingston, Hounslow and beyond, is holding a Family Fun Day. There will be lots of exciting fun activities for the whole family including a quiet zone. For more information, please visit the Facebook page below – and note that some activities need to be booked in advance. https://www.facebook.com/Redleesfunday/
2. Moor Lane Family Fun Day - from Achieving for Children Sunday, 3rd September, 1pm to 4pm An event for children and young people with disabilities and their families. Come and join us for a fun filled afternoon with indoor and outdoor activities, including, climbing wall, pony rides, animals, face or hand painting, bouncy castle, biscuit decorating and lots more... For further information, please contact David Arrow on 020 8547 6564. Or visit the Local Offer – and note that you need to print out a copy of the invitation to attend. https://www.afcinfo.org.uk/local_offer/events/24652-family-fun-day-2017?date=2017-09-03
The Integrated Services for Children with Disabilities (ISCD) First off, three points: 1. In our last news, we reported that Dr Joan Myers OBE had started in the post of Associate Director, Integrated Services for Children with Disabilities (ISCD) for Achieving for Children (AfC). • ISCD covers the disabled children’s register, Therapies, short breaks and (now) the Emotional Health Service. • Plus, (as we understand it) there is now a dotted line to the specialist social workers and family support workers (direct management is via the Director for Children’s Social Care) • Integrated Services of this kind are not tried and tested nationally – it’s an ideal model of service delivery and a difficult one to achieve. • Joan has a big job! 2. Some of you may remember that we (SEND Family Voices) provided a report to Achieving for Children on the ISCD last May (2016), at AfC’s request. • This report contained and examined feedback to SEND Family Voices and was treated as a Level 2 complaint (that’s quite serious and needed a full investigation). • The complaint was upheld. • The result was a full management review of the ISCD (conducted by AfC’s Ian Dodds) – which made 26 recommendations for improvement. 3. Recently, the Care Quality Commission (CQC) carried out an inspection on the ISCD in Kingston and local schools. • The report isn’t great – but does show that AfC were already aware of the challenges with this service (not least, due to SEND Family Voices’ report). • Fundamentally, the front- line staff are good people, but the infrastructure (record keeping and processes) are poor. • Short Breaks commissioning and the eligibility criteria need improvement. • Regular readers will know that SEND Family Voices have championed this for some time and have conducted extensive research work to demonstrate family’s needs. You can read the full report by following this news item on the Local Offer: https://www.afcinfo.org.uk/local_offer/blog_articles/1519-cqc-inspection-of-communityhealth-services-at-moor-lane-dysart-school-and-bedelsford-school
Throughout this we have been working with Robert Henderson, AfC’s Deputy CEO and Director for Children’s Services; and are confident of his intentions to deliver excellent ISCD and SEN Services. Robert is fully aware there is some distance to travel – and is committed to working with families. You can view Achieving for Children’s Senior Leadership team here: https://www.achievingforchildren.org.uk/about-us/senior-leadership-team/
The right to an ordinary life From Special Needs Jungle, an article on short breaks and why they need to be in Section F of an Education, Health & Care Plan (EHC Plan) The law around short breaks is clear that local authorities have a duty to give disabled children the opportunity to lead lives that are as ‘normal’ as possible… https://www.specialneedsjungle.com/fighting-for-my-disabled-childs-right-to-summer-fun/
Look to the New Local Offer “The new look Local Offer has been live over summer and we have continued working to add content, especially in the "What's On " calendar. Now when you use the Local Offer Directory to search for Leisure and Social Activities you will find providers who may offer activities and the details of what they offer attached as separate events to the bottom of their information. Or you can search for different types of activities directly in the What's On calendar. Although it may not seem so at times, there is a lot going on in the community. To make the Local Offer a hub of information as envisaged in the SEND Reforms and to keep it up to date is a constant and huge task. We have contacted providers directly to encourage them to register on the site to add and be in control of their own information. Providers will have the benefit of reaching a wider group of children, young people and families allowing more people to enjoy all the various opportunities out there. At the same time, we are adding information to the other calendars and directories on the site so all young people and families can switch from one to the other in a more seamless way.
Feedback on the Local Offer As always, we invite your feedback. There are different ways to do this. You can email or phone Karen Lowry via the Contact Us form or feedback about individual pages via the "rate this page" faces that appear top right of the screen. We are finding this very helpful in terms of specific feedback and letting us know if a link is broken etc. Feeding back this way is anonymous. We have had some confusing feedback about the Local Offer though: Q: “This is like a draft website. Where is the comprehensive site I'm used to? What on earth has happened to the usual website! I can't find the Golden Binder anywhere!” A: This is confusing because essentially the Local Offer content hasn't changed and the Golden Binder is in the same place! In fact, the Golden Binder should be easier to find now as we have added direct links back to it from every advice page! if you are confused about any aspect of the website do pick up the phone and let us know, so we can work together to make things clearer.
Last but not least I am happy to report that I have some assistance with my work on a temporary basis: https://www.afcinfo.org.uk/local_offer/blog_articles/1533-introducing-joe-fautley Joe is powering through an enormous amount of tasks. One of the things he will be doing is planning and consulting on an Autism specific section on the Local Offer (more in the next newsletter).” Karen Lowry, Local Offer Content Manager sendlocaloffer@achievingforchildren.org.uk
New items on the Local Offer Challenging decisions List of all the current options for challenging EHC Plans and (Richmond) Health decisions. If you need more advice, contact the Local Offer on their Contact Us pages. https://www.afcinfo.org.uk/pages/local-offer/information-and-advice/assessment-andeducation-health-and-care-planning/challenging-our-decision
STEM 2e “Imperial College London is pleased to offer our first STEM workshop for 2e (twice exceptional). 2e is twice exceptional or gifted with a learning difference (e.g. Dyslexia, dyspraxia- Aspergers).” https://www.afcinfo.org.uk/local_offer/events/25386-imperial-college-opportunity-for-giftedstudents-with-learning-difficulties?date=2017-09-21
Open consultation - Draft transport accessibility action plan The Department for Transport is seeking feedback on a draft accessibility action plan which sets out their proposals to improve the travel experience for people with disabilities. https://www.afcinfo.org.uk/local_offer/blog_articles/1540-open-consultation-draft-transportaccessibility-action-plan
Kingston Council consults on playground improvements “The £2 million project will see new play equipment, bins, benches and tree planting in fourteen parks across the borough.” Respond by 30 September. https://www.afcinfo.org.uk/local_offer/blog_articles/1541-kingston-council-consults-onplayground-improvements
Relaxing Tales for Children “This book offers a revolutionary way to tell bedtime stories helping to make bedtime a time of peace, calm and sleep for your child. Based on psychological principles and techniques, these stories will help to guide your child comfortably asleep.” …and thank you to local parent, Jo, for sending this review: “It's excellent. The prequel is Sleepytime Tales for Children. Both books are guided meditations for children as stories. There are tips for the adult on how to read them and an introduction, explaining how the children learn to relax through meditation. His emphasis is enabling children to relax making them more receptive to learning. Also suitable for poor sleepers and those with behavioural problems. Lovely.” https://www.amazon.co.uk/Sleepy-Bedtime-Tales-RevolutionaryChild/dp/1326917048/ref=pd_sim_14_1?_encoding=UTF8&psc=1&refRID=4Q5WV7N3G99T3VN G8V9S
Music
Many of you may remember our Free Music & Magic event in February* (funded by NHS England via the local Healthwatch). It was a hugely popular afternoon, with over 200 people attending. Not least because of the Magic Circle magician, the facilitated Lego play, arts & crafts, goody bags and the informal music workshops. We found our music therapists, to run the workshops, via the Richmond Music Trust: http://www.richmondmusictrust.org.uk/
Bandit “Last week, my son (Romany’s) attended a Bandit event run by Richmond Music Trust; this is a week of playing, composing and performing. He had the time of his life!
Why is this significant? Because, my son has barely left the house in over 2 years – his anxiety became too much. About six months ago, he re-found his love of music – thanks to a very empathetic singing teacher we found through the Richmond Music Trust - and asked to attend Bandit. That’s 5 days, 10am to 4pm, with nearly 60 other young people he has never met before! He did it! Can’t say he was always on time, but he went every day and led a band as lead vocals in the final performances on Friday afternoon. (I would have settled for him just turning up on the first day‌) The tutors and staff at Richmond Music Trust did their absolute best – and worked with me – to ensure he and all the other participants got the best from the week. Not everyone is into music – but if you can find something that works for your child or young person, coupled with a truly inclusive and thoughtful provider – it seems the impossible can become real.â€? *We will be running a similar Music & Magic event next year đ&#x;˜Š If you have an example of something that, perhaps unexpectedly, worked wonders for your child or young person, please do let us know. We’re very happy to publish your stories. As ever, if you have any queries at all, please ask and we'll always do our best to find an answer. With best wishes, Caroline North (for Kingston) and Romany (for Richmond) Phone: 07469 746 145 www.sendfamilyvoices.org