National Network of Parent Carer Forums

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Campaigning and Parent Carer Forums

February 22, 2019

In August of last year we released our coproduced guidance document called ‘Coproduction & Campaigning‘. Please read the news item to see the full details. Briefly, the document sought to clarify the position Parent Carer Forums find themselves in within satisfying their Participation Grant, administered by Contact on behalf of the Department for Education, and their role in challenging their Local Authority, Clinical Commissioning Group, Health Trust, and Central Government via the National Network. We hoped this document would help make it easier for the distinction between participation and campaigning to be made, whilst offering some examples of how forums can work with campaign groups to effect change locally.

Since we published this, the National Council for Voluntary Organisations (NCVO) has asked the same question of how a government funded group can effectively challenge and influence change in government policy if these misconceptions surrounding this issue are not addressed. In a letter to Prime Minister Theresa May, the Chief Executive of NCVO Stuart Etherington challenges the governments position on ‘Adverse Publicity’ clauses in government funded contracts. He seeks clarification on the issue as some media publications have been suggesting these clauses may inhibit charities and other providers from speaking out on behalf of their communities, service users etc. You can read more about NCVOs thoughts on this on their website.

This misconception has been seen often within the parent carer community, specifically on social media. Parent Carer Forums have seen an increase in challenge on their ability to truly represent communities when perceived restrictions are in place. We have talked about this issue before, and our Coproduction & Campaigning resource was written in response to these concerns.

The response letter from Prime Minister Theresa May makes it quite clear:

‘it is vital that the sectors independence and freedom of speech are protected to allow charities and social enterprises to continue providing a voice for everyday people.’

She goes on to explain how these should not be seen as ‘gagging clauses’ and should not stop fair criticism of government departments or government policy.


So what does this mean for parent carer forums?…

In reality each parent carer forum still has their Grant Conditions to meet, which are set by the Department for Education and administered by Contact for families with disabled children. This means there are still parameters within which a forum should be operating when applying their Participation Grant Funds to their activities. However, this letter makes it clear that there is an expectation for representative organisations to fairly challenge and provide constructive criticism when speaking on behalf of their communities. This means forums have the flexibility to develop strategies and policies within their organisations to allow them to do this meaningfully and effectively. As each forum differs in its structure and approach to meet the needs of their community, this may look different in every local area.

We have an expectation that all forums will have a dialogue with their local partners to inform what this looks like and they include their communities within this process in some way. This might result in a communications strategy/policy/plan, a Memorandum of Understanding, partnership agreement, or some other framework that all partners have ownership of and a responsibility to ensure its delivery to meet the needs of their local SEND community.

We continue to encourage parent carer forums to work with campaign groups where possible to understand the challenges they are championing change for and how the forum can thread this into their participation work. The key here is communication, transparency, and an open mind in working together. This may not be possible on every issue or with every group of campaigners for a variety of reasons. We should endeavour to explore opportunities to work collaboratively for the benefit of our wider community, however. The development of the framework adopted locally to ensure fair representation of community voice should include a range of partners to facilitate the participation of campaign groups within this process allowing them opportunity to influence how they can be engaged. This might not always be complimentary to a forums participation strategy.

The duty to engage all community representatives falls on the Local Area, it is not the responsibility of a parent carer forum to represent groups they are not engaged with, however Contact provide multiple support and resource offers to help forums build a wider membership that is more accurately representative of their community. Forums can access these on their website.


To find out more about how Parent Carer Forums operate, please see our About Us pages.