To discover some of the benefits of our parent participation programme, please read through a selection of our recent and ongoing projects:
PCAN is represented on the Disabled Children’s Strategy Group for Kirklees – a senior decision making group so we can ensure that parents’ views are represented at a high level.
From September 1st 2014, all Local Authorities had to publish a “Local Offer” – an online resource which includes information for families of children with additional needs, and which must be designed following consultation with parents. Kirklees officers have involved PCAN members fully from the start of the process, enabling parents to influence the type of content made available on the website, how it should look, how it can be searched and so on. To date, PCAN has collated the views of parents and attended regular meetings; a process which has been crucial in designing and thinking about the content and purpose of the Kirklees Local Offer. Our work is ongoing and more workshops will be held in 2015 to gather further views and feedback. Here is some feedback from Matthew Holland, Head of Children’s Trust Management and Development for Kirklees, about PCAN’s involvement:
“It has been really good to work with PCAN parents as part of the working group and their contributions are informed, thoughtful and help keep the focus on the experience of families. The Government expects a partnership approach, the term used is co-production, and that is to be welcomed. Kirklees Council is committed to making a difference and the joint working on this and the other groups with PCAN has been a positive and effective way of working in partnership. It has been an opportunity to share the challenges, work out what the legislation means and develop ways forward together.”
PCAN parents have been involved in participation workshops to share their views about the new EHC plans and content, plus the proposed 20 week assessment period. Parents’ opinions were taken on board as the documents and processes were finalised, and feedback from the Education Team has shown how valuable they found this input. Parents have also had the opportunity to give feedback about current experiences of mainstream education with additional support (School Action/School Action plus). This work is ongoing – dates for new participation events will follow.
14-25 Task and Finish Group
The new Children and Families Act requires health, education and social care partners to work closely with children, young people and their parents when developing educational support and future opportunities. PCAN representatives have been part of this group since March 2014 to ensure that parents’ views are heard. During 2015 we will be creating a ‘Parents’ Guide to Preparing for Adulthood’ as a result of this involvement. PCAN is currently looking for parents to be involved in this process.
Autism Pathway for young people
One of PCAN’s members raised an issue about the lack of a specific autism strategy in Kirklees for children and young people under 18. PCAN has a number of members whose children have autistic spectrum conditions and who encounter lots of barriers and obstacles which prevent them from receiving appropriate support. PCAN Trustees therefore visited the Joint Commissioning Manager for Kirklees and Health to raise this issue and suggest that parents be involved in the creation of this strategy. As a result, Kirklees’ Clinical Commissioning Group (CCG) has ordered a review of the autism pathway and has invited all relevant services, as well as PCAN representatives, to look at what is currently on offer. This process will identify what is currently in place, how well it works (or not), and any gaps in the provision of support/service. Parents have been invited to events to share their ideas on what good services should look like for children and young people with autistic spectrum conditions. Other people involved in providing support for children and young people with Autism Spectrum Conditions were also consulted resulting in a report which can be seen here. Work is going on within the Clinical Commissioning Group regarding the findings of this report and the best way forward and PCAN parents will be involved in the creation of the resulting Kirklees Autism Strategy.
Longley and Lydgate Schools Consultation
PCAN approached Kirklees about this consultation and requested that a draft of the consultation document be sent to us prior to publication. The aim was to ensure that parents would find the wording clear and easy to understand. Our members did suggest amendments, most of which were accepted. Whilst the document was not perfect, it was clearer than the original. PCAN representatives also attended the consultation events at the schools, to support parents when asking questions and completing the consultations. We have received a letter of thanks from the Deputy Assistant Director – Learning and Skills: Vulnerable Children and Groups, which can be seen here.
As an extension of our 2013 campaign (see below), PCAN continues to work with the South West Yorkshire Health Foundation Trust (SWYFT) which manages the tier 3 Child and Adolescent Mental Health Service (CAMHS) in Kirklees. Changes have taken place as a result of parents’ and young peoples’ feedback and PCAN is currently waiting for an update from SWYFT.
PCAN organised workshops that enabled parents to give feedback to the South West Yorkshire Foundation Health Trust (SWYFT) about their experiences of the local tier 3 Child and Adolescent Mental Health Service (CAMHS). PCAN sent a report containing parents’ views and constructive suggestions for improvement and we are currently awaiting the outcomes of this report. The management team at SWYFT valued parents’ feedback and have offered their sincere thanks for people giving up their time.
Kirklees Disabled Children’s Service approached PCAN to find out what parents think about activities offered during school holidays and to hear their views on what else could be provided. Two events were held, offering parents the chance to provide their feedback and suggest new ideas or improvements. Changes have been made following this consultation, for example more “sensory” activities have been introduced, as well as activities for children with complex needs who are unable to access sport projects.
Paediatric Integrated Community Equipment Service (ICES)
Before writing a new tender, the manager of Paediatric ICES contacted PCAN to discover parents’ views about the current service and how it might be improved. PCAN visited parents at the Ellerslie Centre and helped them to fill in a survey, before liaising with Kirklees schools to provide wider survey access to the parents of children with equipment needs. This approach ensured a number of parents had their voices heard.
Tier 3 Child and Adolescent Mental Health Service
Kirklees local authority worked with PCAN parents to help plan a new service for children and young people who have moderate to severe learning disabilities and mental health difficulties or challenging behaviours. Parents’ views have had a major impact on how the Commissioning Manager now views this service and ideas from the consultation were included in the tender document. It was also stipulated that whoever won the tender must continue to work with PCAN parents to continuously review and evaluate the service, ensuring ongoing improvements.