Key Themes Identified by the Kingston SEND Futures Focus Groups

Introduction by Beverley Pass, Chair of the Kingston Parent Carer Forum (KPCF):

The SEND futures plan is an important document that guides all partner organisations on the  development of SEND services and direction of effort for a given period. As it is up for renewal for a further 3 years in 2023, KPCF were determined to work closely with Achieving for Children(AFC) to ensure parent carer views and their children’s needs were at the heart of it. AFC were very open to this and so we co-hosted a series of in person focus groups for parents and carers in May and June 2023. The results of what we heard from you are detailed below. 

This information together with the results of a short survey we ran over the summer will inform what we, the KPCF, work to ensure is a key focus for all agencies over the coming months. We also plan to give feedback directly to key decision-makers, MP Sarah Olney, Councillor Archer and RBK CEO Sarah Ireland later in September 2023. 

Please look out for more results of your feedback and the new SEND Futures plan in the coming weeks. Also, please do contact us with more insights or if you want to get more involved on help@kingstonpcf.co.uk , follow us on Facebook or sign up to our regular newsletter via our website on www.kingstonpcf.co.uk 

Thank you to everyone that has contributed so far, your experiences and ideas have been invaluable. 

Q – How can we make sure that your children and young people’s needs are identified and understood as early as possible?

Examples of good practice:

• Reports of schools early identification of needs, GPs acting on parents concerns and health visitors actively listening to any changes in a child’s behaviour.
• Parents spoke positively about their children’s access to physiotherapy, with one parent noting that they were referred quickly, and that support was given to children with a range of needs. 

Areas of concern:

• Improvement needed in staff training across all services (including schools and health settings) especially for children with autism and complex medical needs.  Staff turnover is a concern as it causes lack of continuity and secondary schools were highlighted as a worry.
• Improved sharing and tracking of information for each child in order to reach their potential e.g. parents and carers submitting basic information multiple times.
• Lawful sharing of information to aid understanding of a child’s need so they do not get forgotten or lost in the system.
• Huge frustration around waiting times – Gt Ormond St have an online system for families to track waiting times which reassures families.
• Variability is a recurring theme along with the language used by professionals from all sectors
• Mental health support including school avoidance and support outside of schools hours – huge concern for families with a SEND child
• Tier 2 CAMHS in Kingston around 75% are SEN support
• The variability of the provision provided by SENCOs in schools
• SENCOs in school need a robust system of support and accountability. Parents felt SENCOs often had too many responsibilities in school already

Q – How can we make sure your child and your family get the help they need when they need it?

Examples of good practice:

• Lots of reports of professionals across all sectors working with families to achieve best outcomes for the child
• One parent spoke about an experience of best practice, which related to her child who was on the SEN register being given private rooms at school where they could have quiet time if their classroom got overwhelming. 

Areas of concern:

• Early intervention is key
• Rise in the need for support of ARFID and other eating disorders despite a lot of these services being cut
• Post diagnosis support needs improving
• Tap into parents who have been through the system and encourage them to share their journey with PCF
• Professionals need to listen to parents. SEND parents are the experts in their own child. There needs to be an understanding that this is an equal partnership of knowledge.
• Provision and support is inconsistent. Professionals and families often don’t know what help is available. A possible solution would be to create a visual mapping of services and support and the journey of SEND children through the system. A flexible document could be created with input from parents and a visual representation could be present on the SENDIASS website as well as the KPCF website.

Q – How can we make sure that you are involved in decision making about plans and support that involve your children?

Example of best practice:

• Parents found that the school kept in regular communication with them, and valued the opportunity to meet once a term with staff to discuss their child’s EHCP. 

Area of concern:

• Practicalities of SEN support in schools and clarifying what parents and carers are entitled to.
• Parents reported instances of individual education plans not being put in place in schools and parents with children on SEN support are being let down. 
• Reasonable adjustments are not often  being discussed with some parents. There is lack of visibility of these issues in school and therefore a possible lack of support for SEND parents having these issues.
• Inconsistent provision in schools for SEND Support. Needs to be more of a robust framework in place to guide schools to give appropriate support.

Q – How can we make sure that you and your children are ready for their next stage in life? E.g. Moving from primary to secondary school and beyond

Examples of best practice:

• One example of best practice included a secondary school holding a tea party for all SEND children transitioning from primary school to secondary during the summer holidays before term started. 
• One parent noted that her son had had a brilliant transition from nursery to primary school, which was due to a SENCO who communicated effectively with the parent and gave a list of her son’s needs to the teachers who would be involved in his care, alongside ordering specialist equipment for her son and and assistant who started immediately with him, before his EHCP had come through. 

Areas of concern:

• Better sharing of information between settings e.g. primary to secondary 
• Preparing for adulthood – what support is out there for individuals who have SEND but no EHCP – what are their prospects? Is independent living an option? When an individual reaches 18 it goes beyond education so who is supporting them?
• Parents often feel on their own after post-16, especially if there is a transition to adult health and care services.
• There isn’t a structure for children on the SEND register and they may be missed from opportunities post-16.
• Transitional meetings aren’t robust enough and best practice isn’t adhered to in all settings.
• Best practice should be shared across different schools, so these things can be put in place for all children.
• SEND children may be managing at primary and then struggle at secondary. How can we prevent this happening rather than treating this as inevitable. Do we wait for them to fail before helping? Being proactive rather than reactive.

Q – What can we do to help you and your family be seen, included and valued in Kingston?

Examples of best practice:

• A number of parents praised TAG youth club, noting that they had put on a lot more family events, and that the activities they arranged were very accessible.
• Parents felt that ADHD Embrace was a brilliant resource for children with SEND.
• Two parents praised Kingston Carers Network and Young Carers Network as brilliant resources for SEND parents. 

Areas of concern:

• More opportunities for older children to access activities unaccompanied by parents or carers to nurture independence and allow adults to meet up separately to encourage peer support.
• Wider scope of peer support groups – PB to explore in the online session how to attract and include more parents and carers.  Possibly via childrens activities with an opportunity for adults to meet alongside it?
• Discuss the ideas of community spaces and SEND access to mainstream activities.
• Barriers to accessing services are significant and parents are frustrated that suitable services and activities are often not easily available to SEND families. Children with SEND and their parents should be included in mainstream activities. 
• Acceptance and awareness of SEND is important. All children should be taught to play together.

This document was produced in coproduction with the SEND Futures Team at Achieving for Children and is also published on the Local Offer here