This case study forms part of the What Good Looks Like report on people with a learning disability and autistic people. This co-produced report was commissioned from the Building the Right Support (BTRS) Advisory Group, as part of the wider action plan developed by the Building the Right Support Delivery Board. It has been supported by Partners in Care and Health.
Brighton & Hove Parent Carers Council (PaCC) was established in 2008, and Amaze, established in 1997. Amaze is the host organisation for PaCC and operates across East Sussex and Brighton and Hove. The two organisations work in close partnership with parents and carers of children and young people (0-25 years) with a disability/special educational need (it is not diagnosis dependent). Amaze and PaCC are pan-disability and many families seeking support have children with neurodevelopmental conditions, including autism and learning disabilities.
PaCC takes forward work to ensure that the parent carers voice is heard in policy making and service development. This includes identifying emerging trends from parent carers, collaborating with providers to highlight gaps and quality concerns, and co-ordinating input into service design conversations. Its steering group is made up of parents, and they bring a range of expertise that supports parents to ensure that clinical and education services are working appropriately with their child.
Amaze is also parent led, deeply practical and focused on ensuring each family is given the right support, at the right time. It recognized that advice and support to parents needs to be professional and accurate whilst responding to new trends/concerns emerging from parents' experiences where advice/guidance needs are evolving. Examples of the services provided by Amaze include a SEND advice service, disability benefits advice and support, a well-developed parent peer-to-peer support network, groups for young people aged 14-25 and a well-established dad’s group.
Funding for each organisation comes from a diverse range of funders including the local authority, integrated care system, the Department for Education/Contact, trusts, and other fundraised income.
There were several barriers that were overcome in developing the approach.
Local authorities have historically been nervous about an independent voice for parents, which had been a barrier – but in Brighton and Hove local authority, they are inviting parents onto interview panels and ensuring that the holders of strategic roles have been interviewed by PaCC. In addition, there are now regular catch-up meetings with the local authority.
There was also a cultural barrier, based on an earlier lack of appreciation of the expertise that parent carers bring to the system – both at individual level and as a shared experience of the system. Both Amaze and PaCC work proactively with NHS providers and local authority staff to shape positive relationships where they can raise quality concerns, establish new ways of working and support their engagement work.
Professional attitudes had become a barrier to providing support to families and carers. They can create a lack of trust, there was a perception that parents must change and are the cause of some of the problems. Some practitioners lacked the right knowledge and skills to help families and pushed the problem back to the parents/families, rather than working with parents and other agencies to create solutions. Amaze in its early days did lots of work to challenge these perceptions and PaCC has continue to focus on showing professionals that parent expertise is a useful resource.
PaCC and Amaze are led by people with lived experience, for people with lived experience. They focus on early prevention/support which helps with diverting hospital admissions.
The help offered is not dependent on a formal diagnosis. Both Amaze and PaCC work with families pre as well as post diagnosis. Amaze therefore, supports families to navigate complex diagnosis and assessment pathways at times that their child’s behaviours are ‘seen’ to be just a problem by schools. PaCC can work with services to create diagnostic pathways that are easy to navigate, based on feedback from parent carers.
Recently working with the mental health providers to reshape early support services and Single Point of Access – highlighting the needs/adaptions/ provision required from children and adolescent mental health services to better support neurodiverse young people.
Steering group expertise and focus on Pathological Demand Avoidance (PDA) because there is ongoing frustration that clinical routes do not take this seriously particularly as young people with PDA tend to defeat most strategies.
There is seamless working between PaCC and Amaze – this enables collective parental input into service shaping and helping with strategic planning, but alongside this Amaze can support families with individuals’ concerns
There is now a mature relationship with Brighton & Hove City Council with a robust ongoing dialogue which can include quality issues. Today the parent voice is not seen as a threat but as support.
How is the new approach being sustained?
PaCC is parent led – and this makes its communication with parents appropriate, accurate and accessible. It is also transparent about what it is involved in and the messages it is giving to commissioners and service providers, for example position statements are always shared with parents. Amaze establishes and maintains a relationship with parents and their children from before they start school through into early adulthood.
Looking ahead, our key challenges relate to the long-term sustainability of the organisations, because every year is a struggle to know what is going into the budget funding for next year and the implications for the services provided.