As many of you know parents from Dudley Parent Carers forum – Working Together for Change expressed the desire to have stronger networks, better communication with professionals, and the ability to celebrate their child (ren’s) achievements and aspirations and not just focus on the things that were wrong or that they couldn’t do. The forum explored various tools to achieve this but it was felt that to achieve the best outcome in a cost effective way was to utilise local knowledge, skills and expertise. PSIAMS Systems put forward a desire to work with the forum and put forward a proposal. The Dudley Children and Young People’s Alliance Board agreed the proposal that was presented to them and The Emotional Health and Wellbeing Board agreed to partially fund the tool from the CAMHS Transformation fund.
One of the greatest successes to date is that PSIAMS were in a unique position to be able to offer the support of an officer who understands the technology behind the system but is also the parent carer of a child with severe and multiple disabilities. This parent has the technical understanding and the passion and personal perspective that has really driven forward this system and shaped the success to date.
Engagement and involvement
Parent carers and young people’s voices have been at the heart of everything we have achieved, they have influenced and co-created the design, the way the system looked and felt as a user, had an input in to the functionality, offered new ideas for additional tools that offered more flexibility and have been intrinsic to testing the system and piloting the tool.
We have had continued engagement with 6 Educational settings and offer huge thanks to
• Penns Meadow Special School
• The Brier School
• Old Park Special School
• Holly Hall Academy
• Bromley and Pensnett specialist nursey
• Dudley College
53 Parents of children with a variety of disabilities and additional needs of varying ages have been involved. 2 young people from secondary education and 2 young people from post 16 educational setting with disabilities or additional needs also shared their thoughts and opinions. 8 professionals within the above educational settings have also been involved and shared their views as well as sharing the progress and gathering feedback from professionals wider.
Learning to date
This is a dynamic system which is still evolving and adapting to respond to the user’s needs. What started as an idea that we believed would fill the needs of parents has grown and evolved radically in response to parent’s actual wants and needs, this in itself has taken time to achieve. Parent’s aspirations for this system were much wider than ours and have really pushed and challenged us and the developers to find creative digital solutions. This has been nothing short of a positive, exciting and learning experience that we believe has created something really incredible that parents are telling us will change the lives for them and their children by putting them more in control, helping with organising their day to day lives, strengthening their networks and improving communication.
We responded to parents ideas and have developed a website full of information and advice that they need, that sits alongside the care and share personal platform. We responded to parent’s feedback about how they wanted information but did not have the time or energy to shift through detailed legislation particularly around Education, Health and Care Plans. We developed a video that they can access through the website that tells them everything they need to know and understand in a quick and accessible way.
Working with parents, young people and professionals within the educational settings proved really valuable and it became apparent that Care and Share works best in Special School settings and doesn’t really meet the needs of those with mild disabilities or additional needs within mainstream secondary settings.
Some professionals seem ambivalent towards using Care and Share. They face challenges around technology and permissions, and they shared concerns around security and how the system would work within their own organisations IT systems. However through working with professionals from Penns Meadow Special School who want to embed the system throughout the whole school and are really forward thinking we believe we can demonstrate how Care and Share can be a really useful tool and resource in this setting. This work is currently underway.
This system and the build has been extraordinarily good value for money.
There continues to be dedicated officer support from PSIAMS which to date is estimated at around 416 hours which is equivalent to approximately £4,203.00. PSIAMS also enlisted a Website Designer from Citizen Click who has built the bespoke website and created the infomercial. Staffing costs for this work are estimated at approximately £6,000. There has also been additional officer support from Dudley CVS and all of the valuable time that parent carers, young people and professional have given.
The cost of the bespoke website is estimated at £ 3,000
The cost of the EHCP infomercial is estimated at £1,000
The cost of the licenses for Care and Share is estimated at £1,225
The development of a platform similar to Care and Share would typically cost approximately £35,000 – £50,000 to include for example the node, development, video hosting and server costs
• Embed Care and Share throughout Penns Meadow Special School and evaluate staff and parent carer usage. Share the learning to encourage other special schools within the borough to take a similar approach.
• Continue the stakeholder engagement increasing access to an officer who can answer any queries or problems
• Finish tweaking the system, formally launch Care and Share and promote the website
• Continue to develop the website
• Gather case studies that show the impact of Care and Share for families and that demonstrate how Care and Share is improving the lives of children with disabilities or additional needs and their families.
Prepared by Donna Roberts, Dudley CVS and Anthony Cokeley, PSIAMS Systems