Where we have made your voices heard.

What we have been doing for you.  A round-up of some of the meetings we have been attending and boards we have been sitting on with you and your needs in mind.

0-25 SEND Partnership board

We have been continuing to take our place on the 0-25 Partnership board to be the critical friend to challenge on all aspects on SEND and helping set the direction for SEND within South Glos all the while making sure your voices are heard and we advocate with the best interests of you all at heart.

Linked to the Partnership Board will be a number of working groups.

SEND Strategy  

South Glos Parents and Carers have been pushing for a complete review SEND as a whole system within the area. SEND is not just the 0-25 team who can be thought of as a cog in the SEND machine.  It is what happens in the education setting under SEN Support , it is the information that is available to all families to help them feel more informed, it includes health.

We are working with the council and health partners to look at an Area wide SEND strategy. Currently the main priorities identified are: 

  1. Improving the identification, assessment and outcomes for children, young people and young adults with SEND
  2. Ensuring sufficient education places and access to support services including therapies for children, young people and young adults aged 0-25
  3. Adopting early intervention, person centered planning and multiagency pathways to achieve positive outcomes
  4. Ensuring successful transitions during Early Years and preparation for adulthood
  5. Ensuring that children, young people and young adults and their families have access to information, advice and guidance and their voice is heard
  6. Implementing joint commissioning arrangements, robust financial planning and quality assurance processes to deliver positive outcomes

This all looks really positive and we will be there throughout the review process and beyond to make sure you are heard.

Weekly SEND Pathway Meetings

Every Wednesday afternoon we have a Parent Rep who attends this working group who has looked at the SEND pathway to an EHC plan.  Timescales , Letters , guidance , quality of assessments and information plus a lot more. We will continue to volunteer our time in the summer holidays so that we do not miss out on key work. 


We have made it very clear that communication needs to be improved regarding everything to do with SEND. The LA are now developing a communication strategy with the view to improve communication for all . We are contributing to this as we know from our own experience and the experiences of th community as a whole, this is often of key importance and good communication will help to reduce the stress and anxiety we may be experiencing.  We are so pleased that it is starting to be given the attention it needs to improve and we will be there to ensure that this commitment and issue is not forgotten across all areas of service delivery.  

Post 16  

Our Post 16 Team have been working so hard attending various meetings to ensure our views are heard and our expertise is used with planning for services.  Two of our reps have been attending meetings regarding Employment and Project Search. Two more Reps have been helping regarding developing lots of different pathways, Housing, Independence , Employment and Health. We also receive updates regarding the new Transitions Team.  More details to follow on this.        

ASD Strategy Group

Two key areas to report back for this particular group:

  • PDA (Pervasive Demand Avoidance):  We have been contributing towards the communicating of the approach that health will take with regards to PDA.  As some of you may be aware it is not currently within the NICE guidelines or in the DSM-5 (diagnosis and statistical manual of mental disorders) so the experiences of parents with regards to diagnosis and support has been inconsistent.  The agreement of an approach will mean there will at least be a consistancy of experience.  Professionals across CCHP will not be using the label of PDA.  Our concerns are regarding how support and needs will be addressed in relation to highly avoidant behaviours exhibited by some of our young people on the autistic spectrum so we have been discussing this area specifically.  The label will not be used but the behaviours and traits will be acknowledged through strategies. In brief as a quote from the draft position statement: 
For parents who think their child may have PDA:
If you think that your child may have a PDA type profile then we would recommend that you go through the usual autism assessment pathway. We recommend that you discuss the concerns about your child’s demand avoidant behaviours with your assessment team so that it can be appropriately acknowledged. You can then access strategies for avoidance alongside the more generic autism strategies where this is appropriate for you and your child.
Many parents who have been through the assessment process are happy with this outcome. You should not need to pursue a separate specialist assessment for PDA to have your child’s avoidant/anxious profile acknowledged.

For behaviours to be acknoledged and support strategies offered is really important, so we will keep involved to make sure this is happening as planned and as always welcome your feedback and your experiences.

  • Data:  As a group we feel that the annual collating of data by school with regards to their pupils primary needs is in accurate and the recording of this information needs to be reviewed. For example, schools report a much lower number of students with autism than we know to be true.  This is quite an important key point as the data collated by school feeds into the Joint Strategic Needs Assessment.  The JSNA looks at the current and future health and care needs of local populations and informs and guide the planning and commissioning (buying) of health, well-being and social care services within a local authority area.

With how the data is used in mind, you can see why for all of us it is key to get it right so we will keep working on this as part of this group, the impact of this is beyond just the scope of the autistic community as we need accurate data for all our children and young people.

Mental Health - Children and Young People

A couple of exciting things coming out of our meetings at the moment: 

  • A Conference: We are working towards helping with a mental health conference that will be happening in February so watch this space for this event.
  • Website: A mental health website for children and young people is in development and a group is being formed to discuss the website content and design.  If you are interested in getting involved and being a rep for this in the future, get in touch

Peer Review ( Area Inspection of SEND)

South Gloucestershire Council requested a peer review ( mock inspection) of the SEND process. This covered how Special Education Needs services were carried out across Education, health and Social Care and looked at what was is working well as well as the things that need to be improved. A number of parents met with the Peer review inspectors and gave their views along with SGPC who represented the collective voice as well and all was fed into the final findings that were presented to us at a recent meeting.  We felt is was an accurate reflection of the areas needing improvement and links in to all the priorities listed in the SEND strategy feedback above.

We felt that we have been heard and that everyone is definitely moving in the right direction.   We will be critical friend throughout this process and beyond to make sure that the priorities and commitment to communication is upheld and to make sure there is true parent carer particpation.  

Here is a summary of presentation that some of us attended.  Unfortunately, it doesn't contain much on peer review feedback and we are told this is because the full report is not yet finalised but when it is we will make sure you have it.  Click here for the presentation summary.