Success stories: parent carers making a difference

Here are some examples Parent Carer Forums (PCFs) have shared with us highlighting some of their achievements and impact. 

Every PCF is unique with some only receiving Department for Education grant funding and others receiving additional funding or grants to support them to carry out other work or projects.  Success stories from each PCF will differ depending on the priorities of the local parent carer community, the forum’s capacity, and their funding.

Success stories

Cheshire West & Chester Parent Carer Forum – Using survey data to influence change.

Lucy and Julie from Cheshire West & Chester Parent Carer Forum (CW&C PCF) talk to Contact Associate Laura Burling about their bi-annual parent carer survey and how it has had a direct impact on the area becoming a SEND inclusive borough. In the recording Lucy and Julie talk about how they want to ‘inspire others and give forums hope that we can all achieve great things’. They offer some great tips on where to start with a survey and some insight into how the survey data has strengthened relationships and influenced change. View the recording here.

You can find a copy of the CW&C PCF survey here https://www.pcfcheshirewest.org/survey24 and links to blogs and stories about their role in becoming a SEND inclusive borough here https://www.pcfcheshirewest.org/pfc-stories 

Devon’s Ambassador Volunteer Programme, a partnership between Parent Carer Forum Devon (PCFD) and Devon Information Advice and Support (DIAS)

Empowering Parent Carers and Strengthening Voices

Connecting with and hearing from families across a large county like Devon can be tricky, which is why the parent carer forum in Devon, in partnership with their information, advice and support service have had to think differently about how they reach parent carers. The programme is an initiative that connects families with children and young people who have special educational deeds and disabilities (SEND) as close to their local community as possible, reducing the need for costly travel across Devon. Ambassador volunteers are based in communities across the county, some are parent carers of children with SEND, and some are professionals and support staff who work with them. What they all have in common is a desire to help families and an understanding of what life is like with a child with special educational needs. You can read more about the programme, how it’s helping families and informing the work of the parent carer forum here!    

Working through a process of change – ‘Listen 4 Change’ St Helens Parent Carer Forum

“Keep moving forward – Don’t stay where it’s familiar and comfortable if it’s not working for you as a forum”.

Listen 4 Change is the Department for Education (DfE) funded parent carer forum in St Helens and currently receives the £17500 from the DfE to carry out the strategic parent carer participation work in the area. There are 11 parent carers involved in the Listen 4 Change Steering Group, you can see who they are and what brings them to the parent carer forum here – Meet The Team – Listen4Change

The forum has been through several changes in the last 12 months and have re-established as an independent group. We know there are lots of forums out there that have been through or are going through similar changes, so we thought we’d take this opportunity to ask Listen 4 Change a few questions. In this story they give us some of their top tips for working through a process of change, share a few of the key challenges and tell us how they reduced that all-consuming feeling of overwhelm! Have a read of their story here.

Game-changing resource for parents caring for a neurodiverse child produced by Essex Families Forum with other local charities

Left to Right: Essex Family Forum Family Champions. Sam Read (MyOTAS), Paula Farrow (MyOTAS), Katrina Farrall, (Vice Chair Essex Family Forum) and Maggie Cleary (SEND the Right Message)

Families in Essex told Essex Families Forum (their local parent carer forum) that they were desperate for guidance and support for their neurodiverse children but did not know where to turn or how to access support. The forum created a pack Supporting your Neurodiverse Child together with health partners and charities ‘Send the Right Message’ and Myotas (‘My Own Time and Space’). The pack has been a huge success with 98% of families saying they feel more equipped to support their child after using it.

The Neurodiversity Packs were funded by the Essex Joint Commissioning Group – funding coming from the 3 Essex ICBS (Mid South Essex, Herts & West Essex, Suffolk & North East Essex) and Essex County Council.

You can read more about this great resource for parents here

Wigan Carer Forum – Autism in Schools Project

Luisa and Leanne from the Wigan Parent Carer Forum talk to Lisa from Contact about their involvement in the (NHS England funded) Autism in Schools Project, the benefits to schools and families and what they would like to see in the future. You can watch the video here.

Voice4Parents Wolverhampton – The Power Of Words Project

The parent carer forum in Wolverhampton Voice4Parents worked on a project that aims to inspire the use of positive words and attitudes in conversations between professionals and families of children with SEND. The project was co-produced by Voice4Parents and the Outreach Service and is funded via the DFE’s core parent participation grant.  Sarah from the forum said, “Our aim is to help improve the experiences of families when they go to appointments, engage with professionals etc. to help strengthen relationships and ensure that a good experience is had by families which will help improve outcomes for families, and families feel listened to and heard”.

Sarah said, “We ran workshops at Wolverhampton Inclusion conference which sparked a lot of interest and really made professionals think about the conversations they have with families and the language they use.  We have already had feedback from the Designated Medical Officer (DMO) for Wolverhampton that they will not be using the word “suffers” in clinic letters etc. We also presented to the SEND & Inclusion Partnership board and Health Steering group.”

There is a brochure and a website and the forum say they have had a really positive response from professionals who are really keen to sign up to do the training.  The next stage is to offer full training for whole teams or individuals. Find out more and watch the video. 

Bath & North East Somerset PCF – Improving practice and awareness about Emotionally Based School Avoidance

You can listen to listen to Charlotte and Victoria from the B&NES forum talk to Kate from Contact about Emotional Based Schools Avoidance and the work they are doing to help raise awareness of families experiences and improve practice in the local area. This work is currently funded via the forum’s DFE grant and money raised charging for the professionals version (of this training) helps fund free training for parent carers.

*EBSA is also known as Emotionally Based School Non Attendance

Lewisham Parent & Carer’s Forum’s Autism in Girls Group – Hearing the experiences of families and giving girls with autism a place they can call their own.

Lewisham Parent & Carer’s Forum set up an autism girl’s group after receiving lots of feedback and calls from parents/carers about the anxiety and mental health issues their girls were experiencing.  This included isolation, school avoidance, girls attempting to take their own life, eating disorders, and extreme anxiety and were more apparent in those going into puberty who were no longer being able to cope with masking. 

Parents told the forum that there were no support services for them and nowhere for their girls to go where they can fit in and socialise with others with similar issues. The forum set up an Autism in Girls group which has given the girls something to call their own , a place be themselves, and make friends. 

Sue Stocks, the Parent Participation Officer at the forum said; “The forum was given a free room at a community hall and parents donate in cash on the day, or make a donation to Just Giving.  The group is run by volunteers. Some parents  bring in refreshments an activity to work on with the girls. We received £300 from Health as part of the All Age Autism Strategy, and we have a small pot of funding from the Leathersellers Foundation which helps towards running the group.”

The group has been a huge success. Parents tell the forum about their families’ experiences and get feedback about services, especially about CAMHS (Child and Adolescent Mental Health Services) and the lack of understanding in schools of the needs of girls with autism. This is fed into the All-Age Autism Strategy for Lewisham to make a case for change. Read more here.

Family Voice Peterborough (FVP) – listening to and reaching out to different communities to create a strong representative forum.

Peterborough is a diverse, multicultural area and the parent carer forum, Family Voice Peterborough (FVP), has worked hard to make sure they represent and listen to the different communities they serve. They run coffee mornings, a community café and arrange to have guest speakers on topics of interest such as finance, NHS vaccines and well-being.  They visit schools and other local groups in their community.  The forum’s Development Worker is from the Gambian community and networks with other community leaders, disseminates information to community spaces (like community centres, food banks, places of worship, libraries), doctor’s surgeries and libraries.  This work has increased the diversity of the forum’s membership, with 30% now identifying as ‘non-white British’. Underrepresented community members now participate in events they might previously have overlooked and FVP has successfully established a space where individuals from all backgrounds feel included and embraced.  Read more about FVP’s work.  Listen to a podcast with Ramou from FVP and Contact Associate Laura talking about how the forum reaches different communities.  You also watch this conversation with Ramou and with Development Worker Ousman our YouTube channel. The forum’s Development Worker post is funded via a National Lottery grant and the work Ramou does is  funded via the DfE and ICB  grant to facilitate parent participation

Ramou Ndow (Left hand picture) and Ousman Gaye Community Development Worker (on right) Out and About (right hand picture)

Northumberland Parent Carer Forum Special Educational Needs (SEN) friendly summer holiday activity brochure.

Last summer Northumberland launched a SEN summer holiday activity brochure before the school holiday, this gave information and links to specific activities for children and young people with special educational needs and disability and their families in Northumberland and surrounding area’s. Families said they appreciated being able to just find all the information in one place and felt less isolated during the holidays. This project was funded through the forum’s DFE parent participation grant.

Northumberland Parent Carer Forum: Co-producing the sensory processing service website

Northumberland Parent Carer Forum worked with the lead Occupational Therapist for Northumbria Healthcare Trust to co-produce the new sensory processing service and website for children and young people (and their families) in Northumberland. The work was funded by the ICB (Integrated Commissioning Board).

They attended various meetings with her OT team and discussed what the service might look like, referrals and ongoing support and talked to parents about how they would like to access the information and what printable resources were needed. They organised feedback and testing sessions with some of their wonderful parents. In October, the highly anticipated service and its website were launched, a service which has been greatly received by many. 

Find out more about the Northumbria Children’s Occupational Therapy Sensory Processing Service in Northumberland. 

Northumberland PCF steering group and parent rep

Harrow Parent Carer Forum jargon buster.

Families with children with special educational needs and disabilities (SEND) often face so many acronyms, new terms and abbreviations relating to services, conditions and support etc.  The Harrow Parent Carer Forum heard from parents of children with SEND that most of the professionals were speaking in jargon, and assuming they’d know what all these different acronyms and terms meant.  The forum worked with education, health and social care leads along with commissioners to develop a SEND glossary and jargon buster.  This work was funded via the forum’s DFE parent participation grant.

The Chair of the forum said, “Parent carers tell us it has made a huge difference as they now feel that they can understand conversations.” 

See the SEND Glossary and Jargon Buster and read more about the Harrow PCFs work.

Swindon SEND Families Voice.  Reshaping conversations.

Over 200 parents and carers told Swindon SEND Families Voice that they have felt the impact of words said to them by professionals that they believe to be unhelpful. The forum felt empowered to do something about this.​ Reshaping Conversations is a project led by Swindon SEND Families Voice (SSFV). It was funded via the DFE’s Parent Participation Priority grant and was collaboratively produced with local parent support groups, Mums on a Mission, Swindon Down’s Syndrome Group, SCWAD and Swindon Autism/ADHD Facebook group.​ SSFV took the idea to Swindon Borough Council and BSW Clinical Commissioning Group, who have supported them with the project.​ The project has resulted in a booklet, video, website, 7 minute briefing, lunch and learn session and this mandatory training module being created. You can Watch the Reshaping Conversations video or listen to Jacqui and Nausheen from Swindon SEND Families Voice talk to Sue from Contact about the Reshaping Conversations project on our YouTube channel

Greenwich parent carer forum focuses on solutions to develop vital support for local families.

Towards the end of the pandemic, a new forum was set up in Greenwich. Recognising the importance of reflecting the wide diversity and cultural needs of families in Greenwich, the forum quickly established a special educational needs and disability (SEND) Parent Champions scheme funded via a Champions Grant Public health  and LA funding and some of the forum’s DFE parent participation grant .  

The scheme aims to eventually have trained parent carers or champions in every Greenwich school to help local families navigate SEND services and to tell them more about their local parent carer forum. There are already 30 parent champions in place who will also act as links for parents at both mainstream and special schools. As part of this the forum produced a helpful video to inform other parent carers in the area more about the forum and what they do.This was funded via the forum’s DFE Parent Participation grant.

Supporting families in Greenwich waiting for an autism diagnosis for their child

Greenwich parent carer forum worked with the local authority and health services to find a solution to support families in the borough experiencing long waits for an autism diagnosis for their child. The result was a series of informative and helpful videos funded via a grant from the Local Authority                                                                  

Carol Foyle, Director and Parent Participation worker at the forum says: “We are lucky in Greenwich to have committed and knowledgeable team of professionals working across the local authority and health who listen to us and equally wanted to improve parental lived experiences.”

“We met together to think of ways to support parents while they are waiting.  If your child or young person is thought to be autistic, their needs don’t stay on hold until a diagnosis is given. We looked at the issues and questions parents were raising with us and together we produced a short video which we hope provides support and information while they wait for a diagnosis.”

The forum has already seen the benefits of working in a more solution-focused way with health services and the local authority. They are currently gathering feedback from parents of children with SEND in order to refresh Greenwich’s Local Offer.

GPCF Parent Champions

Parent Carer’s Council (PACC) the parent carer forum in Brighton and Hove links with their Traveller community. 

PACC worked with Friends, Families and Travellers (FFT), a local organisation supporting traveller families, who told them that high numbers of families with children and young people with SEND were struggling to find out what support was available to them. 

Through their work with FFT, PaCC was made aware that adult literacy was an issue, so, in conjunction with Traveller families, PaCC and the disability charity Amaze they designed and produced an easy read version of their forum flyer with pictures and key information, and numbers that families could call for support. In collaboration with FFT, PaCC organised an informal information session at the local permanent Travellers’ site where they told Traveller families about the forum and left some flyers.

Parent carers from the Traveller community told the forum that the best way to keep Travellers informed is through face-to-face contact, and while talking to people in a group is good for information, a more confidential setting needs to be offered to some families.

One parent carer suggested ‘To have a person we can relate to, someone we can trust and understand us.’ Ongoing support from one trusted person, a referral point.’

Another parent carer said ‘for me it is very important to have one person as a referral point. We spend time and time again repeating what we need; our children/young people’s conditions and needs. Having not to repeat that all the time will save so much time and make ourselves more relaxed and less stressed. For someone to record the situation, write everything on a letter.”

In addition to making Travellers families aware of the forum, FFT became more aware of PaCC, so they could signpost families to support and to hear their views and experiences. 

This project was part of wider work funded by Brighton and Hove City Council Third Sector Investment Programme (TSIP). The project was delivered in partnership by PaCC, Amaze and Friend Families and Travellers (FFT).

Read more PaCC’s work with the Traveller families.

Our Voice Stronger Together Tower Hamlets – Coproducing Training and Guidance to Support Families of Children with special educational needs and disabilities (SEND) who are experiencing Mental Health Challenges.

Parents in Tower Hamlets told their independent parent carer forum, Our Voice Stronger Together, that they were struggling with the mental health of their children and young people with SEND. The forum listened to their needs and concerns and decided to create some training to support parent carers which would be run by parent carers themselves.

Six parents and a GP (a family doctor) worked together to produce a toolkit and workshop. They invited members of the forum to attend a workshop to trial it and to feedback and suggest changes. Parents also looked at these issues from a culture point of view. For this project all the researchers volunteered their time and the local authority printed resources, and the school gave the forum a delivery platform for free and provided light refreshments.

The training and input from parents enabled the forum to feed in families’ views and experiences into the work they do with partners and schools. The work on mental health and the parent champions in schools have resulted in increasing numbers of parents joining the forum as members. The forum ran these sessions in schools and community spaces and the feedback was overwhelmingly positive.

“My family don’t understand, they said it was my fault. (I was) too soft on my child but now I see the GP for help.”

“(It was) nice to see another Dad. I thought I was alone.”

Special Needs Action Panel (SNAP), the parent carer forum in Central Bedfordshire Helped to embed ‘therapeutic thinking’ in schools to support children experiencing emotionally based school avoidance or trauma attendance.

Parents raised concerns with SNAP PCF that their Autistic children were unsupported due to the lack of understanding, specialist provision, and the increase in school non-attendance. Many children and young people experienced emotionally based school avoidance and/or trauma from their attendance at mainstream schools unable to meet their needs.  63 children did not have a suitable placement.

SNAP PCF noted the significant gap in the specialist education provision available for children and young people with SEND within Central Bedfordshire. Families needed a specialist provision that supports Autistic children who are cognitively able with high anxiety or social, emotional or mental health needs (SEMH).  Using their core funding (from the forum’s DFE parent participation grant, ICB and LA) to do this work, SNAP PCF wrote a report for the local authority using data, position statements, and case studies from two families to evidence the impact and to ensure that parental concerns were heard.  

SNAP PCF became aware of a beneficial approach called Therapeutic Thinking (TT), which uses a trauma-informed approach to behaviour to encourage a safe school environment.  TT analyses children’s behaviour in order to be able to understand what they are attempting to communicate, resulting in the child feeling heard and empowered and allowing them to have tools to manage their own behaviour. Other nearby areas were using TT and there was evidence it reduced exclusions and increased attendance and attainment.  SNAP PCF championed TT and the LA took this onboard and introduced TT at a Head Teachers summit so that they could support the new approach once rolled out. The LA is now preparing to roll out TT into their schools, and social care and health are also included in the training and approach.  The training is free to schools through Delivering Better Values (DBV) funding.

SNAP PCF has attended information sessions alongside school senior leaders and are invited to take part in the 3-day training.  They will be championing Therapeutic Thinking to schools and everyone else to get them involved, and because of their hard work they have built relationships with senior leaders in the local authority and are driving change for children with disabilities living in Central Bedfordshire.

Therapeutic Thinking understands the trauma behind children’s behaviour and uses a therapeutic approach where exclusions, part-time timetable, detentions and team TEACHH are all reduced.

This video was played to Head Teachers at a recent Inclusion Sumit and at engagement events and describes what the approach is trying to achieve. It is called Why I am Rude. For more information on the approach go to https://therapeuticthinking.co.uk/

Shropshire Parent and Carer Council Preparing for Adulthood Navigators Project. 

Preparing for adult life can be more challenging for young people with special educational needs and disabilities (SEND) and their families.  Shropshire Parent and Carer Council listened to families experiences, worked with partners, and gained some additional funding to ensure families had the information and support they needed as they prepared and developed into adulthood.  They applied for funding from the ICS (Integrated Care System) through the NHS’s Learning Disability and/or Autism Programme and developed the PACC Preparation for Adulthood Navigators Project which helps families with young people with SEND understand what support and provision they can access, such as post 16 education options (including supported internships), managing finances and benefits, employment and volunteering opportunities, mental capacity and parent carers’ role in decision making, friendships, annual health checks and more.  The forum is hearing really positive feedback from families about the project, particularly around social opportunities for young people and information on education provision and education health and care plans.  You can read more about Shropshire PACC’s Preparing for Adulthood Navigators Project. Or listen to Sarah, Abi and Denise from PACC talking to Contact Associate Laura on our YouTube channel. Read more about this project. Find out more about Shropshire PACC Preparing for Adulthood Navigators Project.

Buddies Bowling

A training session hosted by the PFA navigators project

Lewisham Parent & Carer’s Forum.  Reaching out to ensure all families’ voices are heard. 

The Lewisham Parent & Carer’s Forum works hard to reach out to as many different families and communities as possible to ensure their experiences are at the heart of service development.  The forum is a charity and has run a range of activities such as a pamper day, ‘warm hubs’ (where families can come along with their children and get a free warm meal), and arts and crafts.  All these activities help to connect with their communities and help the forum learn, in an informal way, about the experiences of a range of families with children and young people with special educational needs and disabilities.  The video was provided free of charge by Media Trust and with funding from City Bridge Trust (CBT) who have provided four years of funding for two workers supporting families with transitions and benefits. Awards for All provided the funding for 6 months of winter warm hubs and the forum’s pamper days funding are provided by the DfE’s participation grant to promote engagement and participation. Find out more about how Lewisham Parent & Carer’s Forum reach out to their communities and watch their video.

Southampton Parent Carer Forum re-launches and engages families to influence positive change

Southampton Parent Carer Forum relaunched last year and has been reaching out to make sure they hear the views of as many families as possible. They have held sessions in swimming pools, at a soft play centre and in a café with board games to make sure they hear about experiences of services. As a result of the feedback, the forum has already been able to make some changes. They have improved information about the support families can receive on the Local Offer, have run training for school transport staff, and conducted mystery shopper exercises to encourage museums and swimming pools to be more disability friendly. Their suggestions for improvements to the local Holiday and Activities Food programme resulted in more positive feedback from families this year.

Amy Kendall, the Chair of the parent carer forum, said “As a forum representing parents and working to improve services we know there is still lots to do, but it feels like a great start.”

Southampton PCF funded this engagement work via their DFE parent participation grant and LA and health (ICB) core funding.

Read more about how the Southampton Parent Carer Forum has engaged with families and influenced for positive change.

Parents Opening Doors, the Parent Carer Forum in Telford and Wrekin; Supporting families with children awaiting assessment/diagnosis of autism.  The ‘Waiting Well’ project.

PODS learned that a number of families, particularly those with children in mainstream schools who have a child on assessment pathway or undergoing diagnosis of autism, needed better support around challenges outside school, and at home.  They took families’ experiences to the SEND board which included the Principal Educational Psychologist.  Working together, and with additional funding from the NHS Learning Disability and Autism funding stream, they developed support sessions that take a strength-based approach to work with families to find solutions and gain mutual support in a safe and supportive place.  The sessions have received really positive feedback from families.  Families now don’t have to wait for a diagnosis of autism to get support.  Talking about the sessions one parent carer said, “Just good to be able to speak to others in similar situations. An opportunity to download stresses. Good to be able to share strategies for dealing with specific issues,” another said “It empowered me greatly and I left feeling so thankful and supported with the confidence to parent my child.”  Read more about PODs Waiting Well project.

Some of the PODs  Steering Group members with local Councillor Shirley Reynolds (2023)

Bringing the words ‘You said, we did!’ to life in Essex.

Essex Family Forum introduced a ‘Graffiti Wall’ and encouraged parents to pin their concerns to it when they took the wall to events. This turned into a virtual Graffiti Wall during lockdown, enabling families to continue to share their experiences and concerns online.

The graffiti wall was such a success it became a regular fixture when the pandemic ended. Now parents post comments on the virtual graffiti wall regularly and the forum then convey this feedback in-person to the local authority. A group of senior leaders from Essex County Council meet regularly to review the feedback and ensure that questions and concerns are addressed in a timely manner.   

The forum has seen a big increase in parental engagement as a result of this initiative because families now feel heard, echoing the Essex Family Forum’s  ‘You said, We did’ ethos and commitment.

The Family Champion model and Graffiti Wall is funded by the forum’s DfE Parent Participation Grant (with all staff costs funded by Essex County Council). Family Champions are volunteers and the forum have a funded Lead in each of the four quadrants in the county.  This is all part of their core participation grant.

Read more from the Essex Family Forum about how they gather parent carer views.    

Parent Carers Cornwall –  Improving support for those with neuro-developmental needs. 

Parent Carers Cornwall * worked collaboratively with partners in particular their Designated Clinical Officer (DCO) to develop support for families with children and young people who are showing signs of neuro-developmental needs. 

Together with parent carers, young people, partners in health services, the local authority and other organisations, Parent Carers Cornwall and with funding from the ICB (Integrated Commissioning Board) they developed the Cornwall Neurodiversity Hub. The Hub provides support to families, young people and professionals via a range of resources and tools, up to date information and interactive features.

Parent Carers Cornwall worked tirelessly to make sure the hub responds to the real needs and challenges families were facing.  Families fed back that the hub is “Extremely informative and helpful. You can tell it has had parental input”. Another said: “The hub is easy to navigate and has lots of information in one place”.

*Parent Carers Cornwall is the former parent carer forum in Cornwall. It is now a Community Interest Company providing advice and support to parent carers of children and young people with SEND.

Three forums in the south west have created a helpful  resource for parent carers of children that have sensory difficulties.

Parent Carer Forums in North Somerset, South Gloucestershire and Bristol worked with health provider Sirona Care to develop a really helpful resource for parent carers of children that have sensory difficulties. Debbie Meintjes, a Children’s Occupational Therapist, provides practical support and ideas for parents and professionals supporting children with different specific sensory needs such as Tactile, Visual and Auditory needs.  The resource was funded by NHS England and NHS Improvement South West.  Watch the video about sensory processing difficulties.  

Families and Carers Together (FACT) Buckinghamshire working with SENDIAS to improve support for families of children with SEND

Families and Carers Together (FACT) Buckinghamshire fed in the views and experiences of parent carers to help transform the local Special Educational Needs and Disability Information Advice and Support service (SENDIASs) and the support families receive.  As a result waiting times for families seeking support have halved, the number of families getting help has doubled and families can easily access quality information and great online resources.  Their work has ensured the service is year-round (rather than term time only) and has increased staff time to support more vulnerable families. 

The training and webinars were funded via a Council grant and were one of the forum’s assigned outputs The dialogue work was funded via the forum’s DFE parent participation grant.

 Read more about how FACT Buckinghamshire helped to improve their local SENDIASs, and/or SENDIASs account of how working with their PCF has impacted the reach and capacity of their service. 

Bedford Borough Parent Carer Forum (BBPCF) tackled a community challenge head-on: the lack of accessible playparks for local families.

Families told the forum that they were forced to venture out of the county to find inclusive and safe play-areas for their children.

“We need more awareness in all our communal areas (parks, shops). People look at us like we don’t belong because my child screams and looks different to their own child. Education and awareness are needed everywhere.”

BBPCF seized an opportunity when Bedford Borough Council’s Mayor’s Fund offered grants and successfully secured £100,000 to refurbish a playpark, turning it into a welcoming and inclusive space for children with special educational needs and disabilities of all ages. BBPCF collaborated with the local authority to co-produce the transformation over the course of a year starting with signage to raise awareness of SEND and then installing a wheelchair accessible roundabout, trampoline and a sensory garden.

“Genuinely so excited about this.  I have 2 wheelchair users.  The idea they can go to a playpark and play together is amazing – something I never imagined they would do.  Thank you.”

The finished playground, which celebrated its first year last September, not only caters for diverse needs it has also become a symbol of community inclusion. Families who previously felt they had no choice to look outside the county for a place where their child could play, now feel included and there is better understanding amongst the community of SEND families lived experience. Co-production has resulted in a wider understanding of SEND families lived experience and provided an opportunity for them to feel listened to and included in their community.  The health and wellbeing of the parents has improved as they no longer feel vulnerable but instead feel safe and secure in a play park built for them.

The local authority uses the playpark as a model for inclusion and accessibility to any future planning and redevelopment, which promotes inclusion for all SEND families across Bedford.

Time to play – New inclusive park opens in Bedford | MFON (myfamilyourneeds.co.uk)

Warwickshire Parent Carer Voice helping parent carers understand the legal processes behind school exclusions

The parent carer forum in Warwickshire, Warwickshire Parent Carer Voice, worked with their Council and University of Warwick Law students to co-produce a video helping parent carers to understand the legal processes behind school exclusions.  The parent carer participation was funded by the DfE grant but the costs associated with producing the film were funded by the University Law in the Community (LinC) group (with pro bono legal support as credited in the film). Watch School Exclusions: A helpful guide for Parents, Guardians and Carers.

South Gloucestershire Parent carer forum help develop toolkit to support young people struggling to attend school.

The knock-on effects of the pandemic for children and young people with SEND can still be seen in the growing number of pupils who experience Emotionally Based School avoidance (EBSA) and missing school because of their mental health and anxiety.  South Glos Parent Carers were hearing more about EBSA and its impact from parent carers in the area and fed this back to their local council. The forum was invited to work with health, education and social care professionals in the area to find a way to empower schools to confidently support affected children.

They worked with partners to develop a game-changing EBSA Toolkit, made possible by their ongoing support and funding from various sources such as the council, health services, grants, and the DfE grant. They chose to contribute to this work because they hear a lot about this issue from their families.

The EBSA Toolkit was produced by educational psychologists, parent carers and the forum, alongside EBSA training for schools in the area has resulted in a deeper understanding of EBSA and effective interventions and strategies being put in place. Crucially, parents in South Gloucestershire feel heard, understood, and less blamed—a testament to SGPC’s hard work.

Project lead and educational psychologist, Dr Helen Cox told SGPC “The parent carer contributions have directly shaped the toolkit and we are grateful for the feedback of their experiences. Parents are the experts when it comes to their children, so we have very much taken a child-led approach. We want parent carers to know their voices are being heard and hopefully, with the EBSA Toolkit in place, we can provide some reassurance that there’s a plan in place for children in schools.”

Read more in SGPC’s report Your voices heard: The EBSA toolkit 

* EBSA – Also known as EBSNA ( Emotionally based School Non Attendance)

Special Needs Action Panel (SNAP) improving support for children and young people with PDA

Special Needs Action Panel (SNAP) the Parent Carer Forum in Central Bedfordshire worked with families and partners to make sure there was a common understanding of Pathological Demand Avoidance (PDA).  The forum used their core funding (from the forum’s DFE parent participation grant, ICB and LA) to carry out this work.   This helped get the condition recognised and included in Education Health and Care plans, and get the right support in place for local children and young people. The position statement they co-produced is now available for all families and professionals to look at on the local authority’s local offer webpage.  Read more about how SNAP have improved understanding and support for children and young people with PDA.

North Somerset Parent Carers Working Together made sure parents felt better equipped to deal with the challenges they face.

North Somerset Parent Carers Working Together, revealed that 70% of parent carers in the area felt moderate to extreme anxiety most days with some parents reporting that they often felt like they were barely surviving let alone thriving.  In response, the forum looked for and secured extra funding from the Quartet Foundation to help them support local parents feeling this way.    

They used the funding to run a host of wellbeing days and pamper evenings and arranged counselling sessions where parent carers were able to talk through the challenges they faced with a professional accredited counsellor. They then secured corporate sponsorship from Irwin Mitchel so that over 200 parents also benefited from wellbeing ‘goody boxes’ sent to them by the forum and containing a selection of items like pamper kits, motivational quote cards, information leaflets, relaxation sprays, eye masks and lip balms to so parent carers could treat themselves. The boxes were sent during holidays when parents reported they felt most isolated.

“Getting the wellbeing box makes me feel part of a community of people, grateful that someone cares and understands how tough the summer hols can be.”

The forums innovative idea was a great success. Following their activity 97% of participants said they experienced improved anxiety and there was an 38% average reduction in anxiety levels amongst all parents who took part.

“I absolutely enjoyed and needed this. Life at home revolves around my son and I never get a break, nor can I afford one so I’m more than grateful for this – thank you.”

The forum also provide training and peer support opportunities for parent carers which is funded via the Integrated Commissioning Board (ICB) . You can find out more about their Positive Support Offer here.

Bedford Borough Parent Carer Forum, the former forum in Luton, and SNAP PCF develop an online Diagnosis Support Pack.

‘Bedford Borough Parent Carer Forum, the former forum in Luton, and SNAP PCF 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.

We need your success 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 [email protected] 

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.