Parent Carer Peer Support

Parent carer peer support (PCPS) happens when one parent or carer connects with another who is going through something similar.

“It feels like at last somebody who totally understands what we are going through…It was like a feeling of relief after I spoke to another parent for the first time, just to know somebody else understands. We can talk to friends and family but it's not the same because they haven't been in similar situations so can't relate”

It might happen accidentally at the supermarket, school gates, in a park, on social media or in the waiting room of an appointment; or it may happen intentionally at a parent carer support group. What we know for sure is that parent carer peer support is what many parents and carers are seeking.

“It just - it just means so much to know that there’s other people there that are in your situation and you’re not alone. And that if you need someone you can reach out and they will be there for you, and you don’t have to go through things alone and there is light at the end of the tunnel.”

There is often an inner human need when you are going through a difficult time with your child to connect with others who might be experiencing something similar.

Reaching out is not easy - the stigma and judgement still associated with parenting a child with mental health difficulties is real. It can be a barrier to people accessing help. Parent carer peer support can provide a safe, non-judgemental space for people to access the support they need in a way that matters to them.

“To be able to offload your worries to others that understand is such a relief, with no judgement, it’s wonderful.”

Parents and carers from around the UK are setting up parent carer support groups and projects. From the seeds of these support groups a new parent carer peer support (PCPS) workforce is naturally emerging

The Charlie Waller Trust is committed to helping this area of work to grow.

Our PCPS programme is led by parents and carers with lived experience of supporting children and young people with mental health problems; it is professionally supported by professionals in children and young people’s mental health, and by a project team

We aim to respond to the needs of children, young people, families and communities by developing every aspect of this work in cooperation with them. We are committed to sharing and developing evidence-based practice

These are the core elements of our parent carer peer support work:

• We host the PLACE National Network which aims to develop, promote, and sustain parent carer support and involvement in children and young people’s emotional and mental health. 
• We have delivered the first national training course for PCPS workers in partnership with The Charlie Waller Institute and Cellar Trust. The course was developed from the voice of parents and carers and evaluated by Centre for Mental Health. It was funded by donors and Health Education England

We are delighted to announce that two more courses will be delivered, starting in January 2023. Please email the PLACE@charliewaller.org to let us know if you are interested in attending one of these and we will contact you with further information

• We provide consultancy support and monthly drop-in sessions to help people set up new PCPS projects across the UK
• We work in partnership with many organisations to help ensure parents’ and carers’ voices are heard and included in future work programmes. These include the Children and Young People’s Mental Health Coalition – of which our CEO, Clare Stafford, is Vice-Chair – NHS England, the Department for Health and Social Care, and the Department of Education.
• We supported the evaluation of Rollercoaster Family Support in the North East, helping to build the evidence base for PCPS.
• We are working in partnership with other services to employ three PCPS workers over three years.

Parents and carers who have made the journey to find support and services for their own children are now providing support to other families. Some have set up independent organisations; others are volunteering or are employed by local mental health trusts, charities or and community organisations.

Parent carer peer support (PCPS) workers use their lived experience to provide hope and encouragement to other families, to help them identify their own strengths, needs and goals. They may work alongside professionals who provide mental health advice and ensure that the help offered is safe and based on the best evidence available. The Trust supports a model of working that is led by parents and carers, and supported by professionals

Parent carer peer support workers might:

• Offer one-to-one practical advice and support to give parents and carers confidence in their ability to help their child and in the mental health service their child receives.
• Develop or enhance existing support, for example face-to-face and digital support groups; one-to-one support; support via social media platforms, email, and text-based systems.
• Provide targeted support to different communities, for example dads and male carers, adoptive families, and parents and carers from black and ethnic minority groups. The PCPS workforce can do this in a way that is inclusive and led by people’s needs. This is because they have similar experiences and come from the same communities, so they are culturally aware of the needs of the family members they support.
• Support parents and carers to navigate the children and young people’s mental health system to ensure they can access the most appropriate support for their needs
• Support and extend the work of clinical teams. They can do this by ensuring that clinicians explain treatments and interventions clearly and non-judgmentally and in a way that involves families. This helps families adopt and use the strategies clinicians offer.
• Work in partnership with mental health services at all stages of the treatment pathway. This might include co-delivering training in schools and other educational settings on the early signs of mental health problems; supporting people who are waiting for assessments or treatment; and supporting families in crisis.
• Aim to get better results for children and young adults by empowering parents and carers to engage and build trust with services. This may include supporting them to develop care plans in cooperation with mental health services.
• Help families to have their voices heard. This could include helping them to feed their views into the development of mental health services for children and young people. This can give them the potential to influence policy and to help build the evidence base for family-led interventions.

It’s early days for the parent carer peer support workforce, but we are already starting to see the impact of these roles. A recent evaluation of one of the Parent Carer Peer Support Services - Rollercoaster Family Support - found over 90% of those who responded would recommend a parent carer peer support service if a friend needed similar help. Over 80% agreed that a parent carer peer support service knew how to help with their problems or was working with them to help with their problems.

Parent carer peer support: what do people say about it?

The Parent: 

“You don’t know the system or who to turn to. You speak to professionals and you don’t understand their language. The professionals know the academic side but they don't feel the total exhaustion and emotion looking after your amazing children."

“Finding a parent peer support group is worth its weight in gold. They understand your emotions and how to navigate your way through the system, who you need to speak to and what to ask for. They also give you that bit of hope that things can get better, when you are at rock bottom. Life savers - no more words to describe the value of parent peer support.”

The parent peer supporter:

“Several years ago, my daughter was struggling with her mental health. The impact on our family was huge. I felt lost, alone and totally out of my depth. I had to give up work as she was unable to access school. I lost me. I joined a support group and started volunteering to help - it was a lifeline."

“Fast forward to now: my daughter is in a much better place; family life is back again. I work as a parent peer supporter, and I cannot begin to describe how proud I am to be helping and supporting families who are struggling just like I had. I’ve come full circle from needing support to supporting others and along the way I found me again.”

The mental health professional

“The parent carer peer supporters (PCPS) engage parents in a way statutory services cannot. Parents trust their shared experiences. The PCPS often discover issues with parents that they are unlikely to disclose to services but really block their engagement, eg literacy problems, previous negative experiences, lack of confidence in working with professionals, feeling unable to speak up and advocate for themselves and their children.

“Parent peer supporters often work with complex families as they are the place families go to when they are at their most desperate. Parent peer supporters are very often highly skilled people with a wealth of knowledge about services across the area and how parents can access the help they need.” - Community Modern Matron, Children & Young People’s Services

It can be life changing when you are supporting a child with mental health difficulties, in negative and positive ways. Everyone’s journey is different, but many are left with scars and trauma if things have been particularly difficult.

It has an impact on your whole life. This can sometimes mean the breakdown of friendships and family relationships, struggles with your own mental health, financial difficulties or leaving employment due to caring responsibilities. Some people are living with every parent and carer’s worst fear because their child devastatingly died by suicide, yet many still want to give back to help others through difficulties similar to those they experienced.

To turn your heartache and difficult life experiences into hope for others is healing and this is at the heart of parent carer peer support. It is an opportunity to learn new skills, to contribute to the children and young people’s mental health workforce and make a difference to the lives of children, young people and families

One parent peer supporter said:

“It is an absolute honour to be able to provide support to another parent or carer. To help them find hope on the dark days, to help them find little ways to keep going, to work on ideas and solutions together, to find moments to smile and share experiences together makes the road less lonely.”

Although it can be challenging, there is support for those who take on the role, as the same peer supporter explained:

“It is not always easy; at times it has triggered memories from my own experience, but with the support offered through my supervision and connections to our local mental health services we have worked through it together. I’m building a career in this field and I never would have imagined that in the days of supporting my daughter through her tough times.”

A young person whose mum now works as a parent carer support worker said:

“I think the work my mum does is great. At the end of that phone, or computer screen, or in the support groups, parents and carers are now not alone, they are part of a strong group of parents and carers who want to support their children and young people. I am so proud that one of the worst times of our lives has become such a positive thing which is now helping so many other people.”

If this sounds like something you would like to do, here’s how to get started...

• Join the PLACE Network to connect with other parents, carers and professionals who are facilitating parent carer support groups or working as a PCPS.
• Ask about volunteering at your local PCPS group if you have one (the interactive map on the Charlie Waller website can help you find out).
• Get in touch with your local children and young people’s mental health (CYPMH). service, show them this information and ask if they can support you in any way to get started.
• Join one of our monthly drop-ins to chat through ideas. We can help connect you with your local services if needed
• Take a look at the PCPS training offer if you think you would like to train as a parent carer peer supporter.

Parent carer peer support (PCPS) workers with lived experience of supporting a child or young person with a mental health problem have a lot to offer. In particular, they can offer a safe, non-judgmental space for other parents and carers to learn from each other.

They can rapidly help boost capacity in the system, building on partnership work with voluntary sector organisations and encouraging mutual aid. These interventions have been widely welcomed: a recent evaluation using standardised and validated measures as well as qualitative interviews concluded that over 90% of those who responded would recommend a parent carer peer support service if a friend needed similar help. More than 80% agreed that a parent carer peer support service knew how to help with their problems or was working with them to help with their problems.

This new emerging workforce needs encouragement, support and understanding. Professional CYPMH services can work in partnership with parents and carers to help provide safe, effective service where PCPS are offered supervision and clinical advice to support their work. Parents and carers are assets to your work and one of the most underused resources in CYPMH.

The drop-in sessions are facilitated by an experienced parent carer peer supporter and a children and young people’s mental health professional. They provide a space for you to ask questions and talk through thoughts, challenges and ideas. The sessions could be useful for anyone who:

• Is looking to set up parent carer peer support or is already in the early stages of doing so.
• Is interested in or has questions about the parent carer peer support training offer from Charlie Waller.
• Is already delivering support and would like to talk through any issues or ideas.
• Wants to find out about the Charlie Waller Trust offer of support and PLACE Parent Carer Network

Dates

Our next drop-in session is on 1st February, 10am-12midday.

If you would like to book to attend, please email place@charliewaller.org. Please include names and roles of those who wish to attend, as well as a brief overview of the kind of support and information you are looking for. Parents, carers and professionals are welcome to attend.