Success stories: parent carers making a difference

Our examples of success stories provide more detail about how parent carer forums have worked to improve local services. 

Success stories

Stockton on Tees – Successful Recruitment of 12 parent carer representatives Over the last 18 months Stockton on Tees Parent Carer Forum (PCF) has grown, we are seeing an average intake of 25 new members each month alongside our increased capacity of working with services and enhancing our offer. To be able to deliver we needed the right people to support that. As a team of 4 volunteers on the steering group, in 2021 we appointed a further 8 parent reps to support our work and are about to induct a further 4 for additional workstreams this year.  Read more about this sucess story.

Bedford Borough Parent Carer Forum, the former forum in Luton, and the central Bedfordshire parent carer forum worked together with a number of partners such as children and young people, children’s services and community services NHS Trusts to develop a diagnosis support pack for children, young people and their families running up to or following a diagnosis of a neurodiversity such as Autism or Attention Deficit Hyperactivity Disorder (ADHD).  The diagnosis support pack is a one-stop shop of information including things like, sleep, medication, mental health, preparing for appointments, sensory processing needs, supporting social communication and much more.  Lots of steps have been taken to make it as accessible as possible so it’s broken into topics so people can dip in and out as they need to, or as they feel ready to.  It includes videos, interviews and animations, but also it is downloadable and printable to be provided to people who might not have internet access or appropriate technology at home.  The webpage has the facility to be translated into different languages or be read out loud.

Working in co-production has really enhanced this project. It meant that parent carers and young people worked together as part of the team every step of the way in creating this pack: they planned it, reviewed it, and took equal, shared responsibility in making sure it was fit for purpose and suited to the needs of the people using it.  

One of many things acknowledged in the process of working together was that parent carers and children and young people’s experiences of the language describing neurodiversity can focus on the challenges, and it was agreed to include more positive aspects about neurodiversity in the pack with some uplifting, empowering, and positive messaging.

Watch a video explaining the co-production journey of the Diagnosis Support Pack, including what the pack is, and brilliant commentary from some parents and a clinician involved, on their experience of co-production. View the Diagnosis Support Pack.

Watch this fantastic film about the positives of neurodiversity with some of the families and young people involved.

Parent Carers Cornwall worked in partnership on the NHS England keyworker programme which is about supporting children and young people with learning disability, autism, or both, who are inpatients or at risk of being admitted to hospital. The aim of the project is that children and young people with a learning disability, autism, or both with the most complex needs will have a designated keyworker to help them navigate services and get what they need to feel safe, happy, and listened to, along with improving families’ and parent carers’ experiences so they feel less stressed.  

Parent Carers Cornwall has been involved with this programme from day one, including supporting Cornwall to produce the bid for this pilot, designing leaflets, and chairing and attending meetings to help develop the programme to make it as helpful as possible for families. 

Kay Henry, the forum’s strategic lead, said: “The impact of having keyworkers involved with families who have children/young people at admission avoidance to hospital is invaluable. Families are stating the kind of support the keyworkers provide has been required for a long time.” 

A parent carer from Cornwall whose child/young person accessed the keyworker programme said: “Having a keyworker has given me the confidence to speak up where I felt I could not in the past. Just having someone there to listen has made such a difference.”

Wigan Parent Carer Forum created videos during the pandemic to engage and motivate forum members. As children returned to school there was a lot of anxiety but also a display of amazing resilience from children and young people which the forum celebrated this in a video. They produced another video during Autism Awareness Week to celebrate the strengths of their members’ children.

Plymouth Parent Carer Voice responded to the pandemic by changing its planned SEND conference to a week of online activities. High-profile speakers like parent carer Cary Grant and Luke Jackson helped them reach 400 new families and recruit new parent carer reps.

They also organised a panel with councillors, MPs and professionals and parents which resulted in five new working groups being formed to address different issues parents had highlighted. This included projects working with Plymouth University to carry out audits of local parks and disability play equipment and shopping areas and the additional services that are available for families of disabled children.

They also improved support for young people preparing for adulthood and looking for employment opportunities by working with local firms to develop training and employment pathways for young people with SEND, and a pilot with teacher training colleges about developing inclusive education.

Hartlepool PCF ran a campaign called ‘Spread a Little Sunshine’ at the beginning of lockdown to help local families struggling during the pandemic. The forum secured funding to provide family care packages that included sensory resources and family games. And as Covid-19 restrictions began to lift, the forum started to bring families together for support by holding face to face outdoor activities at the beach or in the park. This gave parents the chance to talk with each other and share experiences while their children had fun, and the forum found out more from parents about their concerns and issues.

Wiltshire PCF held regular virtual coffee mornings. The forum collated the tips and suggestions that parents carers shared at these meetings to produce a virtual Summer Tips and Trips leaflet for families of disabled children.  The forum also worked with a local independent organisation to develop  accessible summer activities for local children and young people with SEND and their families.  And earlier in the pandemic, they conducted a survey to ask parents how they felt about the return to school. The results were shared and informed the local authority’s COVID-19 returning to school advice for parents.

Cornwall PCF heard from families of young people who were fearful of vaccinations or didn’t have the mental capacity to understand them. The  forum worked with the local NHS Foundation Trust and Local Authority  to create guidance for families concerned about the COVID Vaccine for those with a learning disability together with a ‘Reasonable Adjustments’ checklist . They also worked with the local direct payments team for the area to allow additional flexibility in how young people’s payments could be used creative ways to meet their child’s needs during the lockdown.

Shropshire PCF raised concerns with their Clinical Commissioning Group and Local Authority who had made a local decision to extend the eligibility for Covid vaccination to all those with a learning disability.  The forum worked with GP’s to ensure they accepted young people for vaccination that otherwise would have been missed from the programme and letters  were sent to all local young people with a Learning Disability informing them of their eligibility for the vaccine, information about annual health checks and GPs Learning disability registers

Family Voice Peterborough found that parent carers in their area were consistently reporting that information and communication about special educational needs and disability (SEND) services was not clear.  Parent carers weren’t always seeing changes as a result of their feedback.  Family Voice Peterborough worked with the Local Authority (LA) and Health to develop ways of working that improved this.  They identified ‘topics of importance’ based on what families felt were a priority.  The forum worked on range of topics with its partners such as new pages for the local offer and letters to parents with children with Education Health and Care Plans (EHCP) letting them know about changes from the LA. 

“I am very glad I was signposted to the local offer through Family Voice as there have been so many more improvements made since the last time I used this and now I can navigate what is available in terms of support and services out there in my local area and now don’t feel so isolated alone and feel more supported through friends I have met along the way at these groups”  Parent Carer, Peterborough.

“The EHCP process has made me feel much more involved now as it is person centred and looks at the outcomes the child young person wants, not just from a professional perspective, which I feel is very important in determining positive outcomes for the child or young person’s present, and most importantly, future.”  Parent Carer, Peterborough.

Find out more how the forum worked with partners on topics of importance for parent carers.

Parent Carers Cornwall worked with parents, young people with special educational needs and disabilities (SEND) and practitioners to improve support for children and young people when they are facing life changes or ‘transitions’ such as moving from early years to primary school or from secondary school to work, college or university.  The forum worked with families and services to make sure information about support around transitions in Cornwall is clear and helpful.

A parent with a 17 year old with SEND moving into adult services said, ” I felt lost going into Transition (preparing for adulthood) with my daughter. The Transition Protocol was informative and gave me the knowledge and advice I required.  I was not aware of it and thank you to our parent forum for highlighting it.”

Find out more about how Parent Carers Cornwall worked with their partners, and for further links to what they produced.

Sheffield Parent Carer Forum has developed an autism myth buster with Sheffield Clinical Commissioning Group, Sheffield City Council and Sheffield Children’s Hospital.  Check out the Sheffield childrens NHS website page to find out more.

Wigan Parent Carer Forum work together with their local authority to produce a newsletter for families with children and young people with SEND, ‘Wigan SEND News.’  Parents often tell the forum that the newsletter is a really important source of information for them, and schools say it’s a great resource to share with their families. 

Families in Partnership (FIP) Our Coproduction Journey in Worcestershire. 
As part of Coproduction Week 2020, we hear from Sally Keane, Chair of Families in Partnership about how the parent carer forum has developed since they were set up in 2017. We hear how working together with partners they have developed a coproduction culture in Worcestershire and the difference this has made to families of disabled children. Download the associated presentation. 

Every two years Lincolnshire PCF undertake a detailed survey of parent carers and SENCos. 
The findings help them evaluate SEND services and plan their work. The forum have also run information events on-line where those running services can hear directly from parent carers about their experiences 

Wiltshire Parent Carer Council (WPCC) working with strategic partners to improve services, information and support for families with disabled children during the Covid19 pandemic. 

How Cornwall Parent Carer Council reversed changes to the Transport Policy 

Gloucestershire Parent Carer Forum’s regular family bulletins 

Swindon SEND Family Voice – a parent carer forum based on positivity (… and good PR!) 
It’s important that forums listen to the views of all local parents so that they know what’s important to them. In this blog, Chair of parent carer forum Swindon SEND Family Voice, Jacqui Watt, talks about their efforts to reach out to local families. See also  Swindon SEND Families Voice -Sunflower Lanyards [PDF]. 

Parent carer forums team up to improve health services 
Forums often work with health providers in the area, and this story from Family Voice Peterborough and Pinpoint Cambridgeshire is an example of this working well. This blog was written by Louise from Family Voice Peterborough. 

How we got the best short breaks deal for local families 
Parent carer forums do really important work and can be instrumental in making sure families are at the heart of decision making. Often their achievements go unnoticed, so we invited Karen Russell, chair of Bedford Borough Parent Carer Forum, to blog about how her parent carer forum worked with the local authority to reverse a decision that would leave local families in a crisis situation.

Find out how Leeds worked in co-production [PDF] involving people at different levels when implementing the SEND reforms.

We need your sucess stories!

If you have a resource or good practice example which would be of interest to others please contact your regional adviser via the how we support forums page or email parent.participation@contact.org.uk 

The Contact and NNPCF parent carer participation newsletter (England) 

Contact and the National Network of Parent Carer Forums (NNPCF) produce a joint parent carer participation newsletter:

This newsletter contains key information about the development of parent carer participation, information about important changes across health services, special education and social care in England, news for local forums, the latest news from the NNPCF and opportunities for forums to participate. Sign up for the parent carer participation joint newsletter.