The Challenging Behaviour Foundation

19/06/2026

For many families, pica can be frightening and exhausting, and it can be hard to explain to other people what is happening day to day.

We’re currently recording three new episodes of our Challenge Accepted podcast about pica – when someone persistently eats, or tries to eat, non-food items.

A panel of experts will be answering key questions including:
-what pica means, how to say it, and why it can be helpful to name what’s going on;
-what happens when someone swallows something that could be harmful and they need urgent medical help and;
-more questions from the CBF’s Family Carer Email Network.

If pica is part of your family’s life, we hope these episodes help you feel a bit more informed and a bit less alone. You might also want to share an episode with relatives, school staff or support workers. Sometimes listening together can make it easier to have a calm, practical conversation about risk and support.

If you ‘subscribe’ or add Challenge Accepted to your library, you’ll get notified when the pica episodes go live.
https://shows.acast.com/challenge-accepted

If you need information, signposting or emotional support, our Family Support Service is here for you. Email us at [email protected] or call 0300 666 0126 (Open: Mon -Thurs: 9am – 5pm | Friday: 9am – 3pm)

19/06/2026

Josh Babarinde OBE raised the case of his constituent Lewis and his family in Parliament, powerfully exposing a serious gap in protection for children and young people travelling on home-to-school transport. He said urgent action is needed: national training standards must be introduced, and there must be a legal duty to record and report every use of restraint on home-to-school transport.

Asking why this was not addressed in the SEND reforms, and why this gap in regulation remains, Josh highlighted the Challenging Behaviour Foundation’s ongoing work to secure change and challenged the Minister to act. Children with a severe learning disability and their families deserve to be safe and have confidence in the system.

Listen to the full speech here 👇
https://parliamentlive.tv/event/index/edebb942-6669-4878-9c34-e400a50db40e?in=14:09:22

18/06/2026

Pica behaviour is high risk, and too often, it isn’t taken seriously .

For families, supporting someone who engages in pica means balancing constant vigilance with helping their relative live a full and meaningful life. It can be frightening, isolating, and at times overwhelming.

That’s why we’ve worked with colleagues in Northern Ireland to co-produce a pica pathway: a clear route for individuals and families to receive the information and support they need about pica.

The pathway helps all professionals involved to understand their role, to recognise what they should be doing, and to provide families with the support that they need, both to prevent harm, but also if an emergency arises. Families are experts in their relatives’ behaviour. They shouldn’t have to coordinate systems or fight to be heard when support is needed.

As the pica pathway is rolled out, it should lead to better outcomes and quality of life for individuals and their families – and it is something we encourage others to co-produce.

You can read the full article on the Pica Pathway, written by the CBF’s founder Viv Cooper, in the upcoming summer edition of our newsletter, Challenge.

Sign up here to have the newsletter drop directly in to your inbox!
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Sign up to receive an electronic version of our Challenge Newsletter, sent out three times a year.

18/06/2026

Learning Disability England published an open letter this week asking for a new national programme to address the health inequalities experienced by people with learning disabilities. You can sign the letter here: https://www.learningdisabilityengland.org.uk/welcome/policy-and-taking-action/campaigning/health-inequalities-open-letter/

Professionals who make up the learning disability professional senate have published a paper with series of recommendations to tackle health implementation failure and led a symposium focused on this issue at the The Royal College of Psychiatrists international conference yesterday.

Maxine Jones, Family Carer, speaking at the symposium, said:

“My brother suffered for a huge amount of time because it was assumed his hearing loss was “just part of his Down syndrome” and he is non-verbal so was unable to tell anyone how much pain he was in. We were persistent as a family and requested examination under anaesthetic.

Eventually, when investigations final took place it was discovered in theatre that his left side mastoid bone had been eaten away and there was also damage to the ear drum, due to long term infections. My brother can no longer hear in the left side. There was also some right side damage to the mastoid bone and ear drum and so he also has limited hearing in this ear. The guilt we felt as a family, that he had to suffer all this, was unexplainable.

Professionals should be curious about the health of my brother and other people with learning disabilities. It is not ok to leave people to endure pain and suffering.”

Maxine Jones, Family Carer and CBF Forward Together Co-ordinator for Manchester and Salford

17/06/2026

Family carers are integral to the work of the Challenging Behaviour – National Strategy Group (CB-NSG). Leanne, Maxine and Polly, family carer project workers for Forward Together, will be sharing their lived experiences as family carers at our next CB-NSG meeting.

They bring lived experience of navigating the complex care systems and local knowledge of the areas we are working in. The CB-NSG is a platform to share their lived experience as family carers, and drive change forward to make a real difference to the lives of individuals with learning disabilities whose behaviour challenges.

Find out more about the CB-NSG here:

The CBF formed the National Strategy Group to break down the barriers to enable children and adults to get the right support to have a good life.

17/06/2026

Let’s talk about pica: new resource

We’re Proud to share our new resource, Pica: supporting someone with severe learning disabilities who ingests non-food substances. Not the catchiest of titles, we know, but not everyone even knows what pica is!

Families have told us that when your loved one engages in pica behaviour, it can feel frightening and confusing. This guide has been developed to bring together clear information, real-life learning from our Family Support Team’s casework, and practical tools to help you feel more confident and supported.

Inside the resource, you’ll find:
-The UK’s most comprehensive information resource focusing on pica and written for families of people with severe learning disabilities
-A template letter to use to explain pica to professionals and ask for the right level of support, because not all schools and care providers know about the risks
-A guide to writing a Pica Support Plan to share what you know about your relative – and a template to get you started.

Like many of the CBF’s resources, it is designed to not only provide information but also help you to take action.

You can download the full resourcehttps://www.challengingbehaviour.org.uk/wp-content/uploads/2026/06/Pica-Resource.pdf

If you need information, signposting or emotional support, our Family Support Service is here for you. Email us at [email protected] or call 0300 666 0126 (Open: Mon -Thurs: 9am – 5pm | Friday: 9am – 3pm)

16/06/2026

For many families pica not temporary, it is a persistent worry that requires constant supervision.

Louise, a family carer, shares her lived experience as a mother and sister to relatives who display pica behaviour (ingesting inedible objects) and the struggles she has faced in being taken seriously by health care professionals.

“What families like mine need isn’t sympathy. We need understanding, we need professionals who listen, we need a clear medical pathway and we need practical support, not just information. Because pica is not rare to the families living with it; it is our everyday life”

She also provides a list of actions that can be taken to prevent further harm, including recognising the physical and psychological toll on families from the cumulative trauma of constant risk and the exhaustion of long-term vigilance.

We share a condensed version of Louise’s story in our upcoming summer newsletter, which you can sign up to here: https://www.challengingbehaviour.org.uk/newsletter-sign-up/

Or you can read the full version on our website: https://www.challengingbehaviour.org.uk/news/lived-experience-of-pica-a-parent-and-sisters-perspective/

If you need information, signposting or emotional support, our Family Support Service is here for you. Email us at [email protected] or call 0300 666 0126 (Open: Mon -Thurs: 9am – 5pm | Friday: 9am – 3pm)

Sign up to receive an electronic version of our Challenge Newsletter, sent out three times a year.

15/06/2026

Do you see me?

The theme of Learning disability week 2026 is ‘Do you see me?’

Being seen means being heard, having choices, and being supported to live life on your own terms.

What Matters to Me, was an innovative three-year project which built on previous work by the CBF around improving the way we involve and take account of the views, preferences and experiences of people with severe or profound and multiple learning disabilities.

Like all of us, people with severe or profound and multiple learning disabilities have the right to influence what happens in their lives, to be recognised, to be respected, and to have a say. And they deserve the tools and support to make that happen. It is possible to find out what matters to people with severe or profound and multiple learning disabilities! It is possible to use what matters to make a difference!

The What Matters to Me Toolkit, which is full of practical materials from consultation templates to family carer resources, it designed to support meaningful engagement with people with severe or profound and multiple learning disabilities.

Explore the toolkit here:

Making a difference to the lives of people with severe learning disabilities

15/06/2026

Pica spotlight!

Pica is when someone eats or drinks items or substances that aren’t food and don’t have any nutritional value. All pica behaviour is high risk and can have serious implications.

This week we are highlighting a range of CBF materials that we have developed, and co-produced with family carers, to aid families with relatives who experience pica behaviour. Follow along each day to find out about our tools to support pica behaviour, including a new information resource and pica plan template, upcoming podcast episodes and more.

“My son, will eat stones and pen tops, Play-Doh, polystyrene, plastic, surgical gloves. He's eaten batteries, a mobile phone battery, safety pins, paper clips. He will eat hair, threads, material. He will rip things up to eat them. He eats stuffing from soft toys and cushions and pillows and duvets and mattresses. So there's really nothing that he wouldn't consider swallowing and ingesting. And that can be life-threatening for him." - Family Carer talking on Challenge Accepted

By raising awareness of pica behaviour, and sharing our pica resources, we hope to help you feel more confident in advocating for your loved one and ensuring the right support is in place.

12/06/2026

The Challenging Behaviour – National Strategy Group (CB-NSG) is an action-focused group that works together, led by lived experience, to break down the barriers to enable children and adults to get the right support to have a good life. It meets twice a year, bringing together family carers and professionals to share insights and best practice.

Our next meeting will focus on:
👉 Supporting good transitions through life

It is important to have joined-up and person-centred support, particularly during times of change like becoming an adult or moving out of hospital. Yet families have told us time and time again that they are left unsupported and having to navigate these life transitions alone.

This, combined with delayed planning, poor communication with people with learning disabilities and their families, and a lack of suitable community provision, means that transitions are often rushed, poorly coordinated, and don’t meaningfully include the individual or their family.

The CB-NSG is an action focused group that works in partnership to highlight lived experience and develop strategies to improve support for people with learning disabilities whose behaviour challenges and their families.

Curious about what goes on during CB-NSG meetings?
You can read our previous meeting summaries here:

Outputs from meetings held by the Challenging Behaviour - National Strategy Group.