Category: Parent carer participation

Last week, around 200 members of parent carer forums across England gathered together for the joint Contact and National Network of Parent Carer Forums (NNPCF) conference.

As well as listening to a key-note speech from Children, Families and Wellbeing minister, David Johnston MP, parent carers attending the conference heard examples of the amazing and diverse things parent carer forums have been doing, working with their local communities, councils and health partners.

During February – or Parent Participation Matters month as we have renamed it – we have shared over 25 wonderful examples of the work parent carer forums (PCFs) across England are doing to deliver improved outcomes for children and young people with Special Educational Needs and Disabilities (SEND).   

This includes parent carers in Peterborough who reached out to different communities to create a strong representative parent carer forum and parent carers in Harrow who produced a SEND jargon buster. Or Swindon PCF, who worked with local charities and parent support groups to create a film to help parent carers have better conversations with practitioners and Shropshire parent carers who worked with partners to ensure families had the information and support they needed when young people prepare for adulthood.

All the success stories we shared with you throughout February are a testament to the hard work of carer forums and their membership of just under 128,000, who increasingly operate in a very challenging climate.

Want to find out more about Parent Carer Forums in England?

Watch parent carer Paul from SENDS 4 Dad talk to Nausheen and Jacqui from Swindon SEND Families Voice about the role of a parent carer forum and why they got involved.

Find out how to join your local parent carer forum

Read more parent carer forum successes.

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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.

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.

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.

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.

Carol Foyle, Director and Parent Participation worker at Greenwich’s parent carer forum

Greenwich parent carer 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.

Find out more about parent carer forums in England

Learn more about forums by watching our video ‘What is a parent carer forum and what they do?

Find a parent carer forum in your area.

                                                               

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 Gloucestershire Parent Carer Forum (SGPC) were hearing more about EBSA – also known as EBSNA (Emotionally based School Non Attendance) – and its impact from parent carers in the area and fed this back to their local council.

As a result, the forum were 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.

The result?

A game-changing EBSA Toolkit co-produced by educational psychologists and fine-tuned by parent carers and the forum alongside EBSA training for schools in the area and an overall deeper understanding of EBSA and effective interventions and strategies 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, emphasised the pivotal role of parent carers: “Parents are the experts, and their contributions have directly shaped the toolkit. Every moment in school is crucial, and South Gloucestershire is now primed to offer the best support early on.”

Find out more about parent carer forums

Watch parent carer Paul from SENDS 4 Dad talk to Nausheen and Jacqui from Swindon SEND Families Voice about the role of a parent carer forum and why they got involved.

Learn more about forums by watching our video ‘What is a parent carer forum and what they do?

Find a parent carer forum in your area.

The work parent carer forums are doing across England varies enormously. That’s why this February we’re sharing some of their stories with you and have designated this February, Parent Participation Matters month.

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

Essex Family Forum introduced introduced a ‘Graffiti Wall’ and encouraged parents to pin their concerns to it when they took the wall to parent 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.

Find out more about what parent carer forums like Essex Family Forum have done and their impact.

Unlocking a path to understanding and recognition

SNAP PCF, the parent carer forum in Central Bedfordshire, were concerned about the increasing number of parents telling them they were struggling to get recognition and support for their children who have Pathological Demand Avoidance (PDA).

PDA is a condition, most often experienced by autistic people, where children go to extremes to ignore or avoid anything they perceive as a demand. Unfortunately, many aspects of PDA, including its clinical definition and how it is identified and managed, are currently contested by health care professionals.  As a result, parents faced an uphill battle with their local authority and services to acknowledge a diagnosis of PDA and getting it included into their children’s Education, Health and Care (EHC) plans.

The forum approached the PDA society and the local authority to see what could be done and worked with professionals across the health and education sector to coproduce a position statement to provide reassurance to families and recognise the need for extra support to children and families affected by PDA. 

The position statement is now available for all families and professionals to look at on the local authorities local offer webpage. As a result, clinicians within CAMHS are able to work with parents, carers and other professionals to try and understand the individual child’s needs and tailor a package of care and personalised support.  PDA training is now mandatory for any professional working for the local authority in a SEND role – and SNAP PCF are championing the training to schools and health services.

Read more stories about how Parent Carer Forums across England have made an impact.

Find out more about parent carer forums

Find your local parent carer forum.

As part of our Parent Participation Matters month this February we’re sharing some of the work parent carer forums do across England and the difference they’re making.

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.”

What difference has this made to local families?

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.

Find out more about parent carer forums

Find your local parent carer forum.

Read more about what parent carer forums in England do and their impact.

Did you know that a staggering 128,000 parent carers across England are currently members of their local parent carer forum (PCF)?

PCFs make sure that the voices and experiences of children and young people with SEND and their families are heard and listened to when services are being planned and delivered.

Celebrating the dynamic force of parent participation

Throughout February we’re shining a spotlight on the incredible work PCF members are doing across England – sometimes in the face of enormous challenges, diving into real life examples of the positive impact forums are having and the genuine difference they are making to children and young people with SEND and their families.

“…I never really knew what it was to be part of a PCF, presuming like most, that it was just another support group. I couldn’t have been more wrong…support is hard to find, but I have certainly found it in this group. So if you don’t go to your local PCF coffee mornings GO, if you get asked to join in GO, if you see their events then GO. If you wanna support fixing a broken system then show up, not for us, but for your family. Let your voice be heard…”

Tracey Huggins, parent carer and member of her local parent carer forum in Sunderland

Interested in finding out more?

You can find out more about parent carer forums please visit our parent participation webpage.

Find your local parent carer forum.

Every PCF is unique and work in very different ways with some relying solely on Department for Education (DfE) funding, while others raise additional funding to support their work. Contact is the DfE’s delivery partner leading on the strategic participation of parent carers, working alongside the National Network of Parent Carer Forums, supporting the development of PCFs and administering their annual DfE parent carer participation grant.

Read more about what parent carer forums in England do and their impact.

Almost 300 parent carers came together this month for the virtual joint annual Contact and National Network of Parent Carer Forums (NNPCF) conference.

The theme of the conference was “working together”. Throughout the conference week, parent carer forums attended virtual sessions on topics that came out as priorities in an NNPCF survey earlier this year.

Many of the sessions are available for you to watch on our dedicated conference page, and the highlights include:

We want to say thank you to the attendees who joined us live. We received some great feedback from forums:

“The mix of law/regulations, real life experiences and resources/information was really great. Thank you!!”

“This conference as a whole has been so informative – thank you.”

Get involved with your local parent carer forum

If you’re not already, have you thought about getting involved with your local parent carer forum?

Forums work with local authorities to make sure that local, regional, and national services best meet the needs of families of children and young people with SEND.

They represent the voice and experiences of those receiving services. And they make sure that service providers take account of them when planning, designing, implementing, and reviewing services. 

For14 years, Contact has worked with the Department for Education (DfE) to support the 152 forums in England.

We do this in a number of ways. We provide training and resources to forums, and we help them manage the DfE grants they are awarded to do the work they do.

Find out more about how Contact supports parent carer forums.

Contact, working in partnership with Alder Hey Children’s Trust, Edge Hill University and the North West National Network of Parent Carer forums ( NW NNPCF), have successfully secured a grant from the National Institute for Health and Care Research (NIHR) for a pioneering project which started this June. The project will be carried out over the next year and is focused on communities in the North West.

The research aims

Some disabled and neurodiverse children and young people from under-represented communities experience barriers accessing health care. Our research aims to investigate and co-produce solutions to reduce these barriers.

What difference could this research project make?

Helping under-represented communities

We know that many disabled and neurodivergent children and young people from under-served communities have less access to healthcare and have poorer health outcomes.

Children, young people and families from communities such as Black, Asian and minority ethnic groups and Traveller communities can face discrimination, disadvantage and exclusion and have less choice and control about their health care.

Improving access to health care

So far, research in this area has been limited. The project offers a unique and prestigious opportunity for Contact to work in partnership with community members to investigate what gets in the way of, and what could improve, access to health care for disabled and neurodivergent children, young people and their parent/carers.

The work we do thanks to this funding will help researchers, charities and services work out ways to work with under-served and under-represented communities and find out the most important areas to look at and solutions to test as part of a future grant. 

What will the project involve?

There are four distinct phases to this project:

 

Building relationships, reaching out to underrepresented communities and inclusivity training for SENCOs.

As the Department for Education’s delivery partner supporting strategic parent carer participation in England, we like to shout about the amazing work parent carer forums do every day across the country.

Firstly, congratulations to Blackburn with Darwen Parents in Partnership for their great work on their area’s Disability Information Day. This event brought together children and adults with local providers, such as the NHS and other voluntary services. The event helped the forum meet parent carers, increase their membership, promote their role, and build relationships with local partners. 

A big thank you to Westminster Parents Participation Group, Brighton Parent Carers’ Council, and Swindon SEND Families Voice. They came together to share some of the ways they have reached out to their underrepresented communities.  We recorded the session, which you can now watch it on our Youtube channel.

SEND Alliance Cumbria created some great videos to help with their recruitment and welcoming and supporting their volunteers as part of their induction.

And finally, congratulations to the forum in Liverpool Parents and Carers (LivPac). They have been nominated for a ‘National Diversity Award’ in the ‘community organisations for disability’ section. Find out more about these awards, nominate an organisation or cast a vote. If any other forums have also been nominated, please let us and other forums know.

For the first time ever, membership of parent carer forums across England has grown to over 110,000.

That’s over 110,000 parent carers working in co-production with strategic partners in education, health, social care and other organisations in 152 local authority areas.

What do parent carer forums do?

Forums make sure that local, regional, and national services best meet the needs of families of children and young people with special educational needs and disabilities (SEND). 

They represent the voice and experiences of those receiving services. And they make sure that service providers take account of them when planning, designing, implementing, and reviewing services. 

How does Contact support parent carer forums?

For14 years, Contact has worked with the Department for Education (DfE) to support the 152 forums in England.

We do this in a number of ways. We provide training and resources to forums, and we help them manage the DfE grants they are awarded to do the work they do.

Find out more about how Contact supports parent carer forums.

Useful resources from this year’s conference

Contact also supports the work of the National Network of Parent Carer Forums (NNPCF) – the national umbrella organisation for PCFs.

This includes organising an annual national conference with the NNPCF, which this year was attended by over 285 forum members.

At the conference, forum members took part in a number of sessions on topics, like SEND law and planning the recovery in children’s community services.

Visit our participation YouTube channel to view some of the sessions that took place at this year’s conference. Some of the videos will be useful even if you’re not in a forum.

Read the latest parent participation annual report.

More about parent carer forums

Find your local parent carer forum on our website.

If you’re interested in joining – or just finding out how your local forum is working for you – get in touch!

The National Parent Carer Participation conference organised by Contact and the National Network for Parent Carer Forums (NNPCF) kicks off today, Tuesday, 31 January.

The theme of the #LetsParticipate23 conference is Reconnection, Resilience & Renewal. It includes three virtual conference days followed by a face-to-face meet-up in Bristol at the end of February.

It’s an opportunity for parent carers from up to 152 parent carer forums across England to attend presentations and workshops. And it’s a chance to share challenges, ideas, and co-production opportunities.

The action-packed conference includes sessions led by NHS England to talk about the challenges families face accessing community-based services, like ADHD and paediatric services, in the wake of the Covid 19 pandemic. There will be an address from Claire Coutinho, Parliamentary Under Secretary of State (Minister for Children, Families and Wellbeing).

Forums have risen to the challenge of the last few years

“This year’s conference is a true celebration of how forums continue to come together through the incredibly tough times we’ve seen recently. The impact of the pandemic is still felt by many families caring for a child with special educational needs and disabilities (SEND). At the same time, the cost of living crisis has created even more stresses for families already struggling to get by.

“There’s no doubt that the last few years have tested the resilience of parent carer forums, their leaders and members alike. But forums have risen to the challenge, and despite everything there are now officially over 110,000 members involved in PCFs across England. As well as the opportunity to gain more knowledge and ideas and to share their experiences, the conference is a chance to celebrate everyone involved in parent carer forums. We’re really looking forward to reconnecting at what promises to be an engaging and informative few days.”

Carolyn Deveney, Head of Parent Carer Participation at Contact

Parent carer forums work locally with strategic partners colleagues in education, health, social care, and other local organisations. They work to ensure that services best meet the needs of families of children and young people with SEND.  They represent the voice and experiences of those receiving services. And they make sure that service providers take account of them when planning, designing, implementing, and reviewing services. 

The NNPCF is the national umbrella organisation of which all local forums are members. It represents the combined voice of local forums and regional forum networks. That’s over 110,000 parent carers involved in forums feeding in at Government level.

Tina Emery, co-chair of the NNPCF, said: “This is the 14th year that the NNPCF and Contact have worked together and with parent carer forums across England to amplify the experiences of those caring for a disabled child.  It feels right that the theme for this year’s conference is Reconnection, Resilience & Renewal.

“The last few years have been so difficult. The effects of the pandemic are still being felt by families who care for a child with SEND.  This makes the role of parent carer forums more important than ever.”

Contact’s support for Forums

Find out more about how Contact supports parent carer forums.

Find a parent carer forum near you.

Watch our videos about parent carer forums

Our video, ‘What is a parent carer forum and what do they do?’, explains more about parent carer forums, parent participation. It explains how parents across England are helping improve local and national services for children with SEND.

In the film ‘Making a difference: Why should I join my local parent carer forum?’, you’ll hear from parent carer forum members talking about why they got involved and the difference they make to children with SEND and their families.

It’s National Volunteers’ Week (1-7 June) and we just wanted to say a massive THANK YOU to the thousands of parents who volunteer as part of their local parent carer forum.

Parent carer forums work in partnership with local authorities, education settings, health providers and others to make sure services in their area meet the needs of children and young people with special educational needs and disabilities (SEND) and their families. 

The volunteers that run forums carry out a wide range of activities. Whether it’s representing parent experiences at local authority or health provider meetings, running events or offering a warm welcome to new members, the unpaid work they do is core to helping forums reach out to their communities and reduce isolation while pushing for service improvements for families of children and young people with SEND.

We asked parent carers what they like best about volunteering for their local parent carer forum and here’s what they said:

“I feel like putting my energy into changing things for the future helped me deal with the present. I learnt so many strategies that helped at the time, and still do.”

“What I like most about volunteering is meeting other parents/carers and feeling like I’ve made their day just that bit easier by listening to them and letting them know they aren’t alone and pointing them in the right direction to find the support they need.”

“I chose to become a committee member, first and foremost I think it’s important that all SEND parents and carers are informed of all the help and support that is available to them. I also believe that as a collective voice we have a much greater chance of making real changes to improve ours and future children’s lives for the better.”

“I became a member as I want to make a difference in my area and how SEND is done in my area to the best of my knowledge, and get what’s right for parents and young people.”

Inspired to find out more about forums?

Watch our videos What is a Parent Carer and What do they do?, to find out more about them and how parents across England are helping improve local and national services for children with SEND and Making a Difference, Why Should I Join My Local Parent Carer Forum? to hear parent carer forum members talking about why they got involved with their local parent carer forum.

Find your local parent carer forum.

Read more about parent carer forums, how Contact supports them, and the difference they make.  

We are delighted to let you know that the Department for Education (DfE) has awarded Contact and partners National Network of Parent Carer Forums (NNPCF), Council for Disabled Children and KIDS, a new contract to make sure parent carers, children and young people are involved in the delivery of SEND services and provision in England and have access to information advice and support.

The DfE funding means that over the next three years Contact will continue to work with 152 parent carer forums in England to make sure their voices are heard at a local, regional and national level. The new contract which starts this month, also enables us to continue our support offer to families with disabled children through our online information and national helpline.

The Council for Disabled Children will continue to support the Information, Advice and Support Network and will, alongside KIDS be supporting children and young people’s participation in local, regional and national policy and practice.

Gail Walshe, Contact’s director of participation says: “It’s great that The DfE continues to recognise the importance of having parent carers, children and young people at the heart of shaping disabled children’s services, the invaluable support of our online and helpline advice service and local SEND Information, Advice and Support Services (SENDIASS).  

“Contact has acted as the delivery partner to the DfE to support parent carer forums since 2008. Our new contract enables us to build on this and to also reach even more parent carers with our high-quality impartial information and advice. We look forward to working jointly with our consortium partners to improve the links between parent carer and children and young people’s forums so that more children and young people have an active voice in decision-making in their local areas.”

Contact will lead the work carried out by the consortium in this new contract which aims to:

Children and Families Minister Will Quince said:“Contact and their partners do fantastic work to make sure parent carers and young people are directly involved in how local SEND services work for them.

“This new government contract and grant funding, of over £17 million for three years, will support Contact’s work and make sure parents and young people’s voices continue to be heard at a local, regional and national level.

“Together we can make sure that all parents and carers, regardless of their child’s needs, have access to the advice and support they need to better succeed in life.”

How Contact supports parent carer forums

Contact helps to empower 152 parent carer forums and their membership of over 97,000 parent carers across England, to influence local, regional and national services and legislation. Find out more about our parent participation work and parent carer forums.

About our information and advice service

Our national information and advice service includes our website, social media channels, telephone helpline and live chat. Last year our helpline-online advice provided advice to 10,644 families, with invaluable information on a range of issues including financial support and getting help for a child in school. Find out more about our helpline and online advice service.

Today sees the start of the National Parent Carer Participation conference organised by Contact and the National Network for Parent Carer Forums (NNPCF).

Parent carers from 152 parent carer forums across England will meet at the three-day virtual conference starting today to look back at an extraordinary year and share their challenges and ideas through interactive information sessions, workshops and networking.

The action-packed conference also includes keynote speeches from ministers the Rt Hon Nadhim Zahawi MP, Secretary of State for Education and Minister for Children and Families, Will Quince MP. In addition to this, conference attendees will have the opportunity to put their questions to Suzy Powell, deputy director of SEND policy and strategy at the Department for Education.

Gail Walshe, Director of Parent Carer Participation at Contact, says: “The passion and persistence of parent carer forums in the face of the barriers they face never ceases to amaze. 2020-21 threw up challenges that no one could have imagined as parents running forums juggled schooling, caring, self isolation and lockdowns. Despite this, forums across the country continued to champion the needs of families with disabled children by keeping their voices on the government’s radar by feeding back how the pandemic and government and local decisions affected families. At the same time forums found new ways of working in order to reach new parent carers, reduce isolation and strengthen the voice of families in their communities. We are delighted to host the 2021 Annual National Conference of Parent Carer Forums with the NNPCF and over the next three days hope to celebrate all the parent carers whose opinions and views have helped to make improvements to services across local areas in England. Contact is proud to support Parent Carer Forums and the National Network of Parent Carer Forums and we are committed to listening to what they need to make them strong and sustainable for whatever the future brings.”

Tina Emery, Co-chair of the National Network of Parent Carer Forums says: “It’s great to be co-hosting our conference with Contact again this year.It is a fantastic opportunity for parent carer forum members across England to come together, albeit virtually, to gain more knowledge, to support one another, share their ideas and their experiences, but it’s also a chance to celebrate everyone’s achievements through what has been another year with COVID at the forefront.

Your contributions have made a massive difference to the feedback we give at a National level,  which is integral to NNPCF’s success. We’re really looking forward to bringing parent carers together for what promises to be an engaging and informative three days.”

Contact’s support for Forums

Find out more about how Contact supports Parent Carer Forums.

Parent carer participation annual review 2020-21

Our Parent carer participation annual review for 2020-21 is now published! Read more about how we support parent carer forums and the impact that parent carer forums had on the Covid response and locally.

Watch our videos

What is a parent carer forum and what do they do?, explains more about parent carer forums, parent participation and how parents across England are helping improve local and national services for children with SEND.

Making a difference, why should I join my local parent carer forum? In this video you’ll hear from parent carer forum members talking about why they got involved and the difference they make to children with SEND and their families.

The pandemic has been an extremely challenging time for many parent carer forums (PCFs)  – not least because they are run by parent carers who have been disproportionately affected by Covid-19 in a number of  ways.

Despite the challenges, PCFs have found new ways of working in order to reach new parent carers, reduce isolation and strengthen the voice of families with disabled children in their communities at such a critical time. Some examples include:

Find out more about parent carer forums in England

Read more parent carer forum success stories, or get involved today by finding your local parent carer forum.

Watch our video What is a Parent Carer and What do they do? to find out more about Parent Carer Forums, parent carer participation, and how parents across England are helping to improve local and national services for children and young people with SEND.

Watch Making a difference, why Should I join my local Parent Carer Forum? to hear Parent Carer Forum members talking about why they got involved, and the difference they make to children and young people with SEND and their families.

Contact is the delivery partner of the Department for Education supporting the development of parent carer participation in England.

Co-production happens when families work with their local authorities, education settings and health providers to make sure services designed and delivered for their children and young people with special educational needs and disabilities (SEND) are what families want and need.

Although the word ‘co-production’ might be an unfamiliar term, it’s what 151 parent carer forums (PCFs) across England do daily to improve services and ensure better outcomes for families in their area.

To celebrate National Co-production Week, we’re shining a spotlight on parent carer forums and their successes co-producing services for families in this in this way. Forums like Parent Carers Cornwall, who set out to reduce the confusion and anxiety experienced by families when their child approached 16 and began the move from child to adult support services.

Parents in the area told the PCF they were often left in the dark about what happens to services for their child as they reach this significant milestone. Practitioners also reported that they were sometimes unclear about which service providers were responsible at each stage when a young person with SEND in their area turned 16.

To change this, Parent Carers Cornwall worked with families, young people with SEND and education, health, and social care practitioners. Together they co-produced clear, easy to understand guidance for families about what should happen and when, and developed defined protocols and procedures for practitioners to follow, setting out exactly who was responsible for which services.

As a result, families and practitioners in Cornwall now know what support their family should be offered, who should be providing it, and when they should expect to be able to access it for their young person with SEND when they move from child to adult services. And because similar confusion was experienced by families at other key stages of transition for their child, for example between nursery and primary school and from primary to secondary school, the forum continued this work to develop clear-cut guidance and protocols setting out what families should expect to happen at these stages too.

Take a look at some more examples of parent carer forums’ co-production successes here.

Want to find our more about parent carer forums and what they do?

Find your local parent carer forum.

Watch our video What is a Parent Carer and What do they do? to find out more about Parent Carer Forums, parent carer participation and how parents across England are helping to improve local and national services for children and young people with SEND.

Watch Making a difference, why Should I join my local Parent Carer Forum? to hear Parent Carer Forum members talking about why they got involved, and the difference they make to children and young people with SEND and their families.

Find out more about parent carer participation and Parent Carer Forums.

Contact is the delivery partner of the Department for Education supporting the development of parent carer participation in England.

This Volunteers’ Week, we want to say a massive thank you to the incredible 96,969 of you who are members of 151 parent carer forums (PCFs) across England.

Volunteers’ Week, which starts today, is the perfect time to show our appreciation for the thousands of parent carers who volunteer their time and do an incredible amount of unpaid work as part of their local PCF to help improve services for children and young people with special educational needs and disabilities (SEND).

The range of work they do is vast and includes sharing their views and experiences, representing parents at local authority and health provider meetings, running events and collecting evidence to help  improve both local and national services.

We’d like to say a particularly HUGE ‘thank you’ to all the parent carers who help to run PCFs in England and for all the time you dedicate and the difference you make to families of children and young people with SEND – especially during such a challenging year.

Want to find out more about parent carer forums and how to get involved?

Watch our video What is a Parent Carer and What do they do?, to find out more about them and how parents across England are helping improve local and national services for children with SEND.

Watch Making a Difference, Why Should I Join My Local Parent Carer Forum? to hear parent carer forum members talking about why they got involved with their local PCF and find out how to get in touch with your local parent carer forum.

Contact supports and champions parent carer participation and parent carer forums across England through our contract with the Department for Education. We lead the strategic participation consortium for parent carers and children and young people alongside the Council for Disabled Children, KIDS and the National Network of Parent Carer Forums (NNPCF). Find out more about how Contact supports PCFs.

Local parent carer forums and the National Network of Parent Carer Forums (NNPCF) – the independent national voice of parent carer forums – have done some incredible work during the pandemic to represent the experiences of families. This has included:

·         Challenging several policies like the use of clinical frailty scales and ‘do not resuscitate’ notices

·         Ensuring government lockdown guidance was amended to accommodate the needs of those with special educational needs or disabilities (SEND) who needed to go out more frequently

·         Influencing guidance for schools to emphasise the need to co-produce with families

·         Making sure that some of the £1.7bn of schools catch-up funding is spent on SEND services (such as speech and language therapies) and that the government’s return to school guidance emphasised a holistic approach rather than just focusing on attendance and behaviour.

Carolyn Deveney, Head of Parent Carer Participation at Contact said: “Parent carer forums have really risen to the many challenges they have faced this year. Not only have they helped reduce isolation amongst families of children with SEND, they’ve also successfully represented their views and experiences during incredibly difficult times to demonstrate the impact of the pandemic on families in their area. They’ve held virtual coffee mornings, offered peer support, signposted to services and conducted surveys to highlight the issues  families are facing. They have also raised issues to the NNPCF and helped them influence policy and practice at a national level.”

Over 1,400 parent carers attended our first ever virtual national parent carer forums conference with the National Network of Parent Carer Forums. Part one of the conference in December included a range of workshops covering issues such as SEND Law, children and young people’s participation and SEND inspections.  And there were keynote speeches from Professor Russell Viner from the Royal College of Paediatrics and Child Health and Vicky Ford MP, Parliamentary Under-Secretary of State for Children and Families. Part two of the conference in March provided forums with an opportunity to hear from the SEND Review team and the NNPCF’s recommendations for the review.  The conference also reflected on what has been an incredibly difficult year for children and young people with SEND and their families, as many critical services such as schools, community health and social care services have been drastically reduced or closed during the pandemic.

What is a parent carer forum?

A parent carer forum is an organised group of parents and carers of disabled children from a local area. Their aim is to make sure that services in their area meet the needs of disabled children and their families. They do this by gathering the views of local families and by working in partnership with local authorities, education settings, health providers and other providers to highlight where local services, processes and commissioners are working well, or challenge when changes or improvements need to be made. Contact is the delivery partner of the Department for Education in supporting parent carer forums in England.

Want to find out more about parent carer forums?

Watch our video What is a Parent Carer and What do they do?, to find out more about Parent Carer Forums, parent carer participation and how parents across England are helping improve local and national services for children with SEND.

Watch Making a difference, why Should I join my local Parent Carer Forum? to hear parent carer forum members talking about why they got involved and the difference they make to children with SEND and their families.

Find out more about parent carer participation and Parent Carer Forums.