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When parents/carers of young people with SEND unite, messages become louder and those in influential positions begin to listen. But what’s the journey to reach that point? MFON speaks to Kirsty Green, Director of Special Needs Action Panel Parent Carer Forum (SNAP PCF), a pro-active group of parent carers in Central Bedfordshire, to find out more about the group’s success story. 

SNAP’s story so far 

‘When we work together as equal partners – great things can happen to improve services.’ We like this quote from SNAP’s 2020 survey, and it certainly resonates with SNAP’s commitment to drive forward change and act as a strategic voice for parents within Central Bedfordshire.  

SNAP got together as a group of parent carers to work with other individuals and organisations to help influence and improve the local services that are provided for children and young people within Central Bedfordshire. SNAP focuses on helping to raise the standard of social care, education and health services within the county, to ensure that these services are provided in a way that meets the needs of children and young people and their families.  

What makes the group’s approach so successful is that real-life perspective is at the heart of the group’s ethos – Kirsty’s enthusiasm and passion speak volumes for the importance of such a community group. ‘We bring a real-life perspective and experience to the planning and development of the services that our families use,’ begins Kirsty. ‘We constructively challenge decisions that are taken by the local authority and health authority about the future planning of services. We ensure parent participation and co-production is at the heart of everything we do.’ 

There’s warmth, empathy and positivity in the group’s identity, too. Kirsty says of the impact, ‘We also understand the joys and richness that raising a child with additional needs can bring; we learn a lot about ourselves, our resilience and how supportive other parents and local charities can be in giving support and guidance. This is why we give up our time to run a very successful Parent Carer Forum.’ 

SNAP has now been recognised for its achievements in the National Diversity Awards 2021 and is nominated for the Community Engagement award. Kirsty, for her work with SNAP, also won the Championing SEND category in our very own 2021 BAPS Awards.

Project insights  

The group has made impressive progress since inception and seeks to answer key gaps in support for the SEND community. Areas include successfully working with the local authority to produce a Pathological Demand Avoidance Position Statement, which has been acknowledged by the PDA Society. SNAP now wants to do something similar to promote identifying needs and support with both dyslexia and sensory processing disorder.  

Other key areas include challenging the organisation of funding arrangements for disabled children who attended out-of-county residential settings and an element of the group’s projects concentrated on combatting loneliness. ‘It can be a lonely time when parents are receiving a diagnosis for their child,’ explains Kirsty. ‘We approached our LA (Local Authority) and worked with them on developing a Parent Mentoring Pilot that Central Bedfordshire Home Start is running. This has made such a positive impact on our parents’ skills in being able to navigate local services to provide the right support for their disabled children.’ 

The good work doesn’t end there. SNAP runs parent training and conferences to enable parents to better understand their own children and how to navigate the SEND system. The group has recently held a six-week ADHD Wise Foundation course for parents to attend, and has had IPSEA run a course for parents, as well as getting a local provider to hold dance and theatre activities for disabled children. 

With regards to parent panels, Kirsty explains the process by saying, ‘We did this to review barriers to parents accessing an EHCNA (Education, Health and Care Needs Assessment) and SALT (Speech and Language Therapy) provision not being put within Section F of an EHCP. The two new heads of service who attended the parent panel were then able to understand parents’ frustrations; they were able to remove these barriers. This has meant more EHCNA and, therefore, more children getting their needs met. Our local area does have a Written Statement of Action; we use parent panels to discuss issues that are important to our members, and this ensures a broader focus on SEND and not just on the WSOA (Written Statement of Action). We also invite senior managers to attend our coffee mornings to give updates and to listen to parents’ concerns. This can be a very effective way for the LA to hear from parents.’  

Setting up your own group  

For parents/carers looking to set up their own group, what key attributes are needed? Kirsty tells us about just how important strong relationships are to success. ‘To build trusted relationships, it is important that people have trust and confidence in what you have to say. This is a support and challenge role and, therefore, you need to be true to your values and keep your parents at the centre of what you do. We are fortunate in Central Bedfordshire because we are really valued by the SEND community. You also need to be super determined and, at the same time, have lots of patience when trying to effect a change in a service area.’ 

Contact has lots of information about setting up PCFs and it is commissioned by the DfE to ensure each LA area has a PCF. So, what are some of the considerations? Kirsty tells MFON readers, ‘There is lots to consider, such as having a strong management board, grant monitoring, governance arrangements, advertising and building relationships, as well as understanding the needs of your local community.’ 

When it comes to getting the word out and raising awareness of the group, Kirsty says that without a strong membership it is ‘too easy for LAs and CCGs (Clinical Commissioning Group) to dismiss the issues that are raised as only affecting a few parents.’ The ‘stronger together’ mantra rings true here. ‘We do recognise we are not the voice for all parents, but we are one of the voices that should be listened to within the local SEND community,’ explains Kirsty. ‘Our PCF offers free Max Cards; we hold parent panels to review pieces of work and give a gift voucher to our members as a thank you for attending; we put on training for parents and recently worked with our local health partners to co-produce a week of workshops and information sessions – this was for professionals and parents to attend.’ 

Prior to COVID, SNAP would attend other local charity events, as well as school coffee mornings, to ensure it was reaching the maximum number of parents. The group also attended information meetings for SENCOs and social workers to inform them about the group’s work and encourage them to share the group’s information with their parents. 

Next steps for SNAP 

Since 2014, SNAP PCF has consistently raised concerns that the Local Offer is not fit for purpose and welcomes the commitment from Central Bedfordshire Council to invest in a new Local Offer website, which is desperately needed to ensure that parents have easy access to the information, support and guidance that they need, when they need it.  

There will be a big emphasis on changing cultures, too. ‘We need to continue to increase our membership and ensure we are listening to our members,’ explains Kirsty. ‘We want to continue working alongside our LA and CCG on the WSOA but also, looking at the wider issues, parents need better support, especially due to the waiting times to access some services. Culture change is a big area for us – we need co-production to be at the heart of decision making. We have co-produced a co-production charter and an e-learning package – we now need to work with our LA to ensure this becomes embedded in their practice across education, health and social care.’ 

What remains clear and at the centre of SNAP’s work is the young people it supports and why everyone in the community should join forces to enhance services for young people with SEND – and not turn their backs. As Kirsty puts it, ‘We need a local area that values people, that is child centred and where everyone understands their roles and responsibilities with SEND and that SEND is everyone’s business.’  

Further resources