SEND Newsletter – January


Explore the latest news and find out how to have your say on Surrey’s special educational needs and disability services (SEND).

SEND Newsletter – January

SEND news masthead

January 2018

Take our short ‘survey’ and you could win a gift voucher

We need you to tell us how we can improve ‘SEND NEWS.’

Please complete our short survey asking for your views on our SEND newsletter, and you will be automatically entered into our prize draw with the chance to win one of three £50 gift vouchers on offer.*

*Please note: Surrey County Councillors and employees of Surrey County Council and their families are not eligible for the prize draw, although everyone is welcome to complete the survey to give their views. The closing date for this survey is Saturday 31 March.

Join the SYAS webinar on Tuesday 13 February

SYAS (SEND Youth Advisors Surrey) are pleased to be hosting their first ever young person led webinar on Tuesday 13 February 2018, from 2pm to 3pm. There will be four or five young people on the webinar panel, ready to answer any questions or queries about their experiences of services and explain about some of the projects that they have been involved in.

SYAS are currently running a creative art competition and the winner of the competition will be announced during the webinar.

The team are keen for as many people as possible (young and old) to join the webinar. To sign up, please email;

An example of successful transition to mainstream education

Jan Downs, Head of Centre at de Stafford School, explains how former West Hill students have thrived in their new environment in a mainstream school. Inclusion and Special Educational Needs and Disability (SEND) at de Stafford School aims to identify and overcome potential barriers to learning and to meet the needs of all SEND students within the school setting.

“Just four months into my new role, with only five students in our Communication and Interaction Centre, our school was approached by the local authority to consider taking additional students into Year 10, with the potential to sit their GCSEs at the end of Year 11. These students had diagnoses of Autism Spectrum Disorder with associated communication needs and were being educated in special provision for students with Learning and Additional Needs. As a school deeply committed to inclusive education we could not refuse and so an innovative and exciting partnership began to take shape.”

Jan Downs continues, “As well as adapting to a mainstream education the four boys were in a social minefield. But, ‘out of adversity comes opportunity’ (Benjamin Franklin), and these young men took the opportunity to embrace the challenges head on.”

Ultimately, Jan is pleased that this was an extremely positive experience for all of the students involved. “Two of the students achieved 6 GCSEs at the equivalent of A*-C including English and Maths – they were in the top 20% of the year group for value-added progress in terms of their KS2 starting points. Another achieved 6 A*-D (grade 4 in Maths) and also completed the Duke of Edinburgh Bronze Award with us. The fourth student struggled with the exams, but he did secure a college placement. He also made huge progress with his social interactions and self-confidence.”

Jan concludes, “de Stafford School are extremely proud of the way in which the four boys integrated and developed within our setting and they all deserve great credit for adapting so well. The achievement of these young men was down to their determination to succeed in mainstream and the dedication and care of the staff that taught them. A fitting and uplifting validation of the initiative resulted in one of the boys receiving a special recognition award for his attitude and progress in GCSE English at our Year 11 Celebration Evening in November.”

Apply for the Disability Access Fund now

The Disability Access Fund (DAF) is easy to apply for and childcare providers will receive £615 for each eligible three and four year olds in receipt of Disability Living Allowance. The fund is available each financial year for eligible children, so make sure it is used.

Who can apply?

All childcare providers registered to deliver Early Years Free Entitlement can access Disability Access Funding for eligible children.
Children do not have to take up the full 570 hours of early education in order to receive the Disability Access Fund.

How can it be used?

It is up to the childcare provider to decide how they spend the Disability Access Fund, however, it must be used to make reasonable adjustments to support individual children and promote inclusion.
Any equipment or resources purchased from the DAF will remain the property of the childcare provider.

So apply now

It’s quick and easy. For further information and to apply, visit the Disability Access Fund page on the Surrey County Council website.

Please note: Practitioners and professionals should contact their relevant area SEND Team, (please contact if you are unaware of your area’s email address).

SYAS creative art competition; your chance to win £50 in vouchers

SYAS (SEND Youth Advisors Surrey) are running a creative art competition. Anyone can enter, all you need to do is produce a ‘SEND themed’ creative art piece. All entrants will be in with a chance of winning £50 worth of vouchers.

The types of creative art you may choose to enter could include:

  • a piece of artwork
  • a poem
  • a piece of creative writing
  • a video
  • a creative piece of audio.

If you, or someone you know, would like to enter, you can either email the Rights and Participation team; or send your entry to:

SYAS creative art competition,
The Rights and Participation team,
Quadrant Court,
35, Guildford Road,
GU22 7QQ.

All entries must be received by Wednesday 31 January.

The winner of this competition will be announced during the first ever SYAS webinar, to be held on Tuesday 13 February. You must sign up for the webinar to find out if you have won.

New policy on ‘Touch and the use of restrictive physical interventions’

Surrey County Council has launched the new policy on ‘Touch and the use of Restrictive Physical Interventions (RPI)’.

Extensive support from across the system has helped to create this new policy. Support came from the MAPA (Management of Actual or Potential Aggression) training team, Phase Council heads, Health and Safety teams, the Education Safeguarding team, Unions and Children’s Services. This new policy replaces the 2010 policy previously in circulation.

Visit the Surrey Local Offer to view the new ‘Touch and the use of Restrictive Physical Interventions’ policy.

If you have any questions about RPI please contact Jacqui Reeves in the MAPA training team; or for any comments on the content of the policy, please contact Kathrine Everett;

For more information, read the Department of Health/Department for Education draft guidance and consultation (Nov 2017).

Highlighting Family Voice Surrey’s CAMHS research

A Family Voice Surrey report highlights the struggle many Surrey families experience when trying to get treatment for their children’s mental health conditions by CAMHS (Child and Adolescent Mental Health Service).
The research, carried out between June and October 2017, included 96 responses to a detailed survey and in-depth interviews with parent carers. Recommendations have been accepted by Surrey County Council’s Children & Health Select Committee and raised with Surrey’s Cabinet.

Visit the Family Voice Surrey website, to view a summary of the findings or download a full copy of the report.

Surrey County Council and the Surrey and Borders Partnership have recently offered a response to the findings of this research.

Surrey County Council and local clinical commissioning groups (CCGs) have a clear commitment to and are taking action to improve CAMHS services in Surrey, both from Surrey and Borders Partnership (SABP) and other partners delivering this key service. A Performance Improvement Notice has been in place to increase momentum on progress and impact. Specific action in relation to patient experience includes on-going involvement of CAMHS Youth Advisors (CYA) and Family Voice Surrey in contract management. A needs assessment of emotional well-being and mental health needs has also been completed with input from a range of service users and key stakeholders – this will inform future commissioning.

SABP have developed their own wide ranging action plan to drive improvement and reduce waiting times. This includes training to be undertaken of what makes a good assessment appointment, including how families are communicated to throughout the session and then after the assessment, working the Mindsight Surrey CAMHS partners to help cater for the increased demand, a detailed Patient Experience Survey led by ‘Healthwatch Surrey‘ and working closely in association with CAMHS Youth Advisors (CYA).

Tracking Surrey’s progress on the number of EHCPs completed on time – a review of 2017

Surrey County Council states, “We monitor the proportion of EHCPs completed within 20 weeks over a rolling 12 month period, to see whether improvements are being made over time. Over the last year, timeliness has more than doubled and we have exceeded our target for December by 3 percentage points. This target was agreed as part of our Written Statement of Action.”

In a letter to the Interim Director of Children’s Services, with regards to delivery of the Written Statement of Action, the Minister for Children and Families reflected that “I am pleased to see evidence of substantial progress with your Written Statement of Action over the last 12 months…….. However, it is clearly important to build on a positive 12 months and continue apace to bring about the long-term sustainable improvement that is required.”

In conclusion, Surrey County Council states “We will continue to prioritise the commitments as laid out in the Written Statement of Action whilst pursuing our ongoing improvement activity with families, young people and partners across the SEND system. For more information, please visit the Surrey Local Offer website.”

*Please view the graph below.

*The graph shows the percentage of Education, Health and Care Plans (EHCPs) completed within the 20 week statutory timeframe, over a 12 month period, by month. Each bar shown represents 12 months’ worth of data (e.g. the ‘December’ figure is for the 12 months to the end of December 2017). This is shown against the council’s targets, as agreed in the Written Statement of Action (WSA). The graph reveals a steady improvement in the percentage rates (for virtually every month of the 13 months covered), from 27% in December 2016 to 58% in December 2017.
The figures on the graph indicate: December 16: 27%, January 17: 28%, February: 30%, March: 33%, April: 37%, May: 41%, June: 44%, July: 49%, August: 51%, September: 55%, October: 58%, November: 58%, December: 58%.

Free courses for parents and carers of children with autism

The National Autistic Society (NAS) Surrey Branch will be hosting two-day ‘Cygnet’ courses for parents of children with autism (aged from five to 18 years old). The course will help participants to gain a better understanding of autistic spectrum conditions. They will also learn about practical strategies to use with children and find out about some of the relevant resources available.

The two-day ‘Cygnet’ programmes will be held on the dates below.

  • Dorking on Wednesday 7 and Thursday 8 March.
  • Guildford on Tuesday 8 and Wednesday 9 May.

The two-day programmes are designed to

  • Increase the participant’s understanding of autistic spectrum conditions.
  • Help parents / carers develop their knowledge of how a child on the autistic spectrum experiences the world and what drives their behaviour.
  • Learn about practical strategies to use with children.
  • Find out about relevant Autism Spectrum Disorder (ASD) resources.
  • Help parents / carers meet with others to gain support and learn from each other.

This two-day course is FREE for families in Surrey to attend, although BOOKING IS ESSENTIAL. Please note, to reserve your place a £10 deposit per person is required, (this deposit will be returned on completion of both days of the course).
To book your place, please email Sarah Mead at with ‘Cygnet’ and your preferred location in the subject line.

For details of other news and events, visit the website of the NAS Surrey branch.

Two new CYP Havens opening soon

A CYP Haven is a safe space where young people can talk about their worries and mental health in a confidential, friendly and supportive environment. In addition to the existing Guildford CYP Haven, two new havens will open over the next two months.

Who can visit a CYP Haven?

Any young person can use the service, as long as they are aged between 10 and 18 years of age and in need of emotional support because they are concerned about how they are feeling. Young people don’t have to call or book an appointment; they can simply turn up during opening times.

What happens there?

Anyone visiting a CYP Haven will be welcomed and made to feel comfortable. The staff will listen and take time to understand what the issue/s may be. If appropriate, they will try to help the young person access a particular service that may be able to help their situation.

The locations of the three safe havens are

  • *Epsom – The Focus Youth Centre, 9, Depot Road, Epsom, KT14 4RJ
  • Guildford – The Discovery Centre, 7, Ward Street, GU1 4LH
  • *Staines – Leacroft Youth Centre, Raleigh Crescent, Staines, TW18 4PB

*The CYP Haven in Staines is due to open on Tuesday 6 February and the CYP Haven in Epsom is planned to open early in March. Both of the havens are scheduled to have a formal opening later in the Spring.

For opening times and full details of the Guildford CYP Haven, visit the CYP Haven website.

Blue Badge eligibility consultation; Have your say

The government is proposing changing the eligibility criteria for the Blue Badge (disabled parking) scheme to include people with non-physical conditions and a new consultation on eligibility has begun. People with hidden disabilities may currently be finding it difficult to access badges, even though their condition causes them very significant difficulties when undertaking a journey. These proposals may make it easier for people with conditions such as dementia and autism.

Sarah Lambert, Head of Policy at the National Autistic Society, welcomed the proposal and said amending parking permit access could be “a lifeline” for many autistic people, who often do not qualify under current regulations.

Autistic people can suffer anxiety from not being able to park in a predictable place close to their destination, and some can “experience too much information” from the environment around them on public transport.

“We hope the Government will make this important change and we look forward to working with them to make sure that autistic people and their families benefit.” Ms. Lambert said.

You can find information on current eligibility criteria for a Blue Badge on the Surrey County Council website.

Take part in the consultation on the Blue Badge parking scheme eligibility review to let them know why it’s important to you.
You can contribute, as an individual, as a representative of a disabled person or representing a disability group. This eight-week consultation is open until Sunday 18 March 2018.

Find out about SEND commissioning

The council and its partners buy a wide range of different types of services to support children and young people with SEND. There are often dozens of different providers to choose from, including charities, community groups, private firms and specialist providers. SEND commissioning is the term used to describe the process of identifying what needs there are and what is available in the marketplace, and then assessing who should be awarded contracts to provide the different services.

A specialist SEND Commissioning team within the council works with other colleagues in the council and the health sector, as well as SEND families, to determine which providers can deliver the right mix of services in different locations in the county at the right time and at the right price. They also draw up strategies to deal with gaps in provision, for example in speech and language therapy or short-breaks offering learning and social interaction opportunities.

The SEND Commissioning team’s key priorities for 2017-20 include

  • Reviewing social, emotional and mental health (SEMH) support in Surrey schools.
  • SEND provision for young people aged 19 to 25.
  • Early Years SEND.
  • Development of employment focused pathways for post-16 pupils.
  • Hospital school provision.

Since it was set up in 2017, the team has launched a new school-aged Speech and Language Service, established a pilot for five-day college provision, and increased the number of supported internships in the workplace. It has also completed the initial research for the 19-25 review, the Early Years review, and the SEMH review.

Much of this work will continue in 2018 as Surrey looks to improve outcomes for children with SEND.

For further information about the work of the SEND Commissioning team, email:


👉 What to reply when told PDA (Pathological Demand Avoidance) does not exist/is not recognised in your area 👈 By Planet Autism


Planet AutismLiked

👉 What to reply when told PDA (pathological demand avoidance) does not exist/is not recognised in your area 👈

A clinician can diagnose a condition which is evident before them, it does not need to be in diagnostic manuals to do so, the manuals are about allocating diagnostic codes to descriptions of conditions. Having said that, PDA as an ASD, is present in diagnostic manuals as an ASD diagnostic code. For the DSM-V it would be diagnosed as ASD as they diagnose all ASDs under one umbrella now, DSM-V code 299.0 (autism spectrum disorder). For the ICD it would be either (ICD10 F84.0 (autistic disorder), F84.8 (Other pervasive developmental disorders) or F84.9 (Pervasive developmental disorder, unspecified), but noted on diagnostic reports as ASD-PDA subtype, ASD-PDA profile, ASD with demand avoidance profile etc.).

PDA is a specific profile of behaviours and is an ASD. You cannot deny a profile of behaviours exist! It does constitute an ASD subtype which isn’t individually mentioned in the diagnostic manuals – yet. But it’s looking likely that the ICD11 will follow with the DSM-V diagnosing all ASDs under one umbrella, so from that perspective it’s irrelevant. However, PDA does need different strategies and support.

This is why there is a DfE endorsed educational guidance document:

“The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice”…/5.2-strategies-for-teac…

Read this excellent article by Dr Judy Eaton (consultant clinical psychologist with years of experience in NHS and private sector, expert in ASD as well as PDA):…/back-to-school-for… she explains very well how families suffer when LAs and NHS take this attitude of PDA not existing and clearly states that PDA does exist.

“Informs local authorities and schools about the importance of providing support and using appropriate PDA strategies and interventions.”

There is a growing body of research about PDA:

“Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO)”

Point out that if the Department for Education recognises it, that’s central government and that should be enough. The NAS recognises it and they are the UKs major autism charity which is government funded.

Look on the NHS England website for your area’s Sustainability and Transformation Plan (STP) and see if your local plan says anything about making care uniform across the region, losing the postcode lottery, improving varied care etc. because there may be a town in your area which recognises PDA and another that doesn’t. You can use this information as the STP covers everything, including mental health issues.

Have answers for every denial they offer. Don’t passively accept what they say, a lot of it is based in ignorance.

Known NHS areas that have diagnosed PDA (there will be others):

Kilmarnock, Ayreshire and Arran, Scotland
Stratford-upon-Avon, Warwickshire
Stroud, Gloucester, Gloucestershire
Bradley, Stoke, Staffordshire
Liverpool, Merseyside
Todmorden, Lancashire
Sheffield, Yorkshire
Stourport-on-Severn, Worcestershire
Hawley, North Hykeham, Lincolnshire
Wolverhampton, Midlands
Nottingham, Midlands
Northampton, Midlands
Lincoln, Midlands
Birmingham, Midlands
Bristol, Avon
Slough, Berkshire
Reading, Berkshire
East Sussex
Andover, Hampshire
GOSH (NHS) London
Guildford, Surrey



Phil Christie introduces pathological demand avoidance (PDA), describes its symptoms in children and young people, and explains how therapists – and, through them, teachers and parents – can understand and work with it…,d.d24

PDA Society booklet launch


Good morning.
Please find below a link to the PDA Society website where you can download a newly launched booklet relating to PDA. Whilst primarily aimed at clinicians it is useful to read if you work in any field supporting children,or are indeed a parent as it help you in understanding the importance of recognising, diagnosing (or at least acknowledging in some way the unique presentation within a diagnostic report and support plan) and recommending a suitable approach to support the child at home and in other environments such as school.

Please feel free to share widely.
The PDA Society are sending hard copies to CAMHS, CDC’s and educational psychologists across England initially, to fulfil the terms of our grant. Other professionals may request a copy but it may be a while (if at all) before the PDA Society are in a position to distribute more widely. Of course anyone is free to print their own copy if they so wish.

Kind Regards
Debra West

The PDA Society are ready to support you through


All the PDA info and support in one location


Who we are
The PDA Society’s management committee is made up of a group of volunteers, all parents of a child with PDA.Margo Duncan

National Co-ordinator, support, writing articles, conferences.
Hi I am Margo, mum to a child with PDA and a younger neurotypical child. I live in Sheffield and am a GP. I myself joined this group as a desperate parent in 2007 seeking information on how to parent my apparently unique and not-so-typically developing child. I gained so much support from the people on here after years of struggling that I wanted to give something back.

I took over the role of National Coordinator in 2008. This has consisted of speaking to many parents on the phone and dealing with lots of email enquiries via the website/forum and writing and distributing leaflets on PDA. I have collaborated with Phil Christie, Ruth Fidler and another parent Zara Healey to write the book “Understanding Pathological Demand Avoidance in Children” on JKPublishing. I also co-wrote the ‘What is PDA?’ on the NAS website with Phil after speaking to Lorna Wing on the telephone asking the NAS to put something more substantial on their site about PDA. I have spoken as a parent at the National Autistic Conferences on PDA from the parent perspective and I have written several articles for the NAS and SEN magazines on PDA.

I was pleased we received Big Lottery funding to develop the website as I feel things have come a long way despite there just being a handful of parents with jobs and children filling their (not so) spare time running the group. I am proud of what the group has achieved so far but I am conscious that more needs to be done in spreading awareness and giving out information on PDA. Because PDA is not yet in the diagnostic manuals we have a situation where some people in one area may be getting a diagnosis and some in another area may not. This has to change as these are desperate children with desperate parents and I know from experience just how much the diagnosis helped our family. Without it we would not have been able to use the strategies which helped, schools would have had nothing to work on and I cannot imagine what kind of a situation we would be in now without it. I want to change that for as many families as possible in the future.

Debra West
Social media relations, conferences.
I am married with two children. My eldest son has a diagnosis of PDA, and the youngest is diagnosed with Autism Spectrum Disorder. I am an active volunteer with my local National Autistic Society Branch; who also offer support to local families living with PDA and other autism spectrum conditions. I am currently completing my final year of a dual award degree in Learning Disability Nursing and (generic) Social Work at Sheffield Hallam University. I have previously worked in research and development roles within the steel industry, but became interested in a career involving supporting families because of my own experiences with my children. I have worked in a number of voluntary roles other than my role within my NAS branch; for example as a Home Start volunteer, helping in my children’s school, and also working with the Family Support team at a local Children’s Centre. I have completed courses in counselling, working with parents, preparing to teach in the lifelong learning sector, helping in schools and helping children with special educational needs in schools.

I have presented at two NORSACA conferences relating to PDA, to give an insight into being a parent of a child with PDA. I have also attended a number of conferences and workshops relating to PDA, autism, behaviour support and mental health. I have a dream to work in an autism team who offer support to children, young people and their families from the start of the diagnostic process to adulthood; to give people with autism spectrum conditions (including PDA) the greatest chance to achieve their full potential; and to give families the support they need to remain as a strong and united unit.

Paula Webb
Support, education advice, training.
Hello, I am married to Chris, an Accountant, and we have three children. Our daughter is the oldest, she has now left home and is a Primary School Teacher. Our two sons are on the Autistic Spectrum. Our eldest son is 23, has Asperger’s Syndrome, and lives and works at home. Our youngest son is 19 and has PDA and Autism. He was in mainstream school until 8 years old, tried a couple of Special Schools in Nottingham and is now in a Residential College in South Yorkshire.

I have always done voluntary work but also had a few part-time jobs over the last twenty years whilst raising our three children. I have worked for The National Autistic Society, Notts County Council Home Care Team, Rushcliffe Parents Autism Support Group and latterly for a Charity called The Maze, which supports parents to achieve good outcomes for their Disabled and Special Needs Children.

I have been on many courses including Special Educational Needs and the Law, Social Care and the Law, Supporting Learners with ASD, Positive Handling, Challenging Behaviour etc. I have been to 5 PDA Conferences, I have been a member of The PDA Contact Group for ten years and I am a member of The PDA Society Committee.

I am very passionate about helping parents to care for their children, so that they can achieve their true potential.

Neville Starnes
Support, YouTube videos, newsletters.
I am married to Chrissie and between us we have two sons. Our youngest was diagnosed with atypical autism and PDA in 2009, aged 10. I am a science graduate and have spent most of my life working for companies allied to the construction industry. For a number of years I ran my own successful business, but this became unsustainable as our son’s needs increased dramatically and he experienced a number of placement failures. To preserve my own health and better support our son, I became a full-time carer. In this role I have been a home educator and spent many months providing full time support for my son in his current special school.

I am one of the newer recruits to the committee and consider myself a ‘jack of all trades’ and have an interest in all areas of our work . Outside of my committee role, I provide support to parents and some background information to professionals. I have also produced a number of PDA related videos on YouTube.

Rebecca Thorpe
Member administration, web site maintenance.
I am mum to two children, a girl and a boy. Our daughter received a diagnosis of PDA just after her fourth birthday in 2010. I feel that having her diagnosis before starting school has been of great benefit to her and us as a family, and appreciate that we were very fortunate to be in that position. It saddens me to hear so many stories of failed school placements, accusations of poor parenting and the struggle many families face to get a diagnosis of PDA for their children.

I met Margo at a Sheffield support group meeting, and was keen to get involved to help families looking to find out more about PDA. My background is in marketing and communications, and I was very excited to co-ordinate the production of this web site. I hope families and professionals alike find our web site a useful source of information about PDA, and look forward to helping raise awareness of PDA in the years to come.

The PDA Resource Page


The PDA Resource Page

Wonderful PDA informative site, with links, stories, helpful contacts and support.

x Remember you are not alone x

The NAS has launched a petition calling on the Government to amend the Children and Families Bill to create a single point of appeal for challenging provision in Education, Health and Care Plans.


Take action today by signing their petition