We are Experts by Experience

Experts by Experience is our campaign for coproduction between parents/carers of SEND children and care professionals. sendPACT is currently working with Haringey Council towards a new way of working through coproduction, and as equal partners, with parents and carers within the borough.

One of the reasons that sendPACT came to be was to encourage a coproduction environment in Haringey with the Local Authority (LA) and other relevant public services. For this purpose, we have tried for many years to create awareness with the LA on how important this is, and has attempted several times to develop a coproduction working partnership with LA professionals. Unfortunately, this has been fruitless and has had some severe impacts on SEND children and families, e.g. new transport policy, therapies, etc.

sendPACT and other concerned parents decided this was enough. We wanted a culture of coproduction through real parent/carers engagement and participation. This is why sendPACT is currently working with Haringey Council towards a new way of working in their SEND department through coproduction, as equal partners, with parents and carers in the borough.

In April 2019, we’ve been having regular meetings with Haringey Council to see how this can be implemented. We also met with the Leader of the Council, Cllr Joseph Ejiofor, to ask him to support this campaign.

sendPACT takes coproduction very seriously. And our aim of this campaign is to ensure improvement of services by empowering parents/carers to be part of service planning and decision-making, and for professionals to respect and value them for it.

What is an Expert by Experience? When a parent is told their child is disabled or have special needs, the most usual reaction is to try to find out everything they can about thee diagnosis or needs by any means, .e.g books, Internet, and most of all by connecting with other families with the same experience and struggles. It is therefore natural that parents/carers learn and experience everything first-hand the difficulties their children experience and ways to overcome them.

Parents/carers have an in-depth understanding of the condition of their children and, additionally, they have an extensive experience on dealing with services for their children. As such, nationally and officially, parents/carers are recognised as “experts by experience”.

Experts by Experience are people who have personal experience of using or caring for someone who uses health, mental health and/or social care services that we regulate.

Care Quality Commission (CQC)

So, it comes as a surprise that so many issues that so many professionals still fail to understand our children’s needs.

Many times, it’s disheartening to see that you know more about your child’s condition than the experts or professionals. This is something that has been acknowledged by the government and big think-tank organisations, and this is why since the Equality Act 2014, they have started to support and encourage local authorities and other public organisations for coproduction with service users and their families.