with Sabiha Aziz
The 2014 SEND reforms placed Parent Carer Forums (PCFs) at the heart of local decision-making, with the aim of ensuring families had a genuine voice in shaping services. But have they lived up to that promise?
Most of us at SNJ are current or former PCF chairs/directors who worked on the 2014 reforms. We work every day with current members, and we know from experience how much of their limited time and energy they devote to helping other families. It is no easy task, especially when involved in a cycle of reform.
We know that many PCF members are asking questions about the current model. In this guest post, former Birmingham Parent Carer Forum Chair, Sabiha Aziz, reflects on five years at the strategic table and asks whether the current model has become constrained by the very systems it was designed to influence. Drawing on her own experience, she argues that meaningful participation requires more than simply giving parents a seat at the table.
Navigating the Constraints: Why the Current PCF Model is Missing the Mark for Families by Sabiha Aziz
The promise of the 2014 SEND reforms was beautiful in its simplicity: “nothing about us, without us.” Parent Carer Forums (PCFs) were designed to be the vital bridge between grassroots families and the state, moving us away from conflict and toward genuine “co-production” (I have come to LOATHE that word)!
However, after five years sitting at the head of that strategic table as the Chair of the Birmingham Parent Carer Forum, I came to a painful realisation. The structural architecture and constraints currently placed on this model have inadvertently turned it into a blockade rather than a bridge. The current framework frequently consumes parent input rather than collaborating with it, creating a system of compliance that ultimately does not serve the best interests of the forums, the local authorities, or the families.
What Genuine Co-production Looks Like
To understand why the PCF model frequently struggles under its current constraints, it is helpful to look at where service user participation actually succeeds. Among my many voluntary roles, I sit on the Patient Participation Group (PPG) for my local GP surgery, which serves 32,000 patients. It is a volunteer role where community insight is genuinely integrated into delivery.
When I suggested moving our coffee mornings to the weekend so working patients could attend, the surgery listened, recognised the logic, and actioned the change within two weeks. There was a direct, visible link between patient input and community output.
Let’s contrast this with the high-level strategic SEND improvement board here in Birmingham where parent contributions were frequently met with endless platitudes. As Chair, I was routinely thanked for “bringing the realism to the table,” but that realism rarely translated into policy.
I frequently presented rich, empirical data gathered directly from families at the coalface. It was often set aside. Months later, the local authority would commission external consultants and expensive law firms to conduct the exact same research. When those highly paid agencies returned with identical recommendations the PCF had provided for free, the board acted as if they’d found something new. The system, by its very nature, struggles to value expertise unless it comes with a corporate price tag.
The Structural Imbalance of Power
This is not necessarily a failure of individual intent; it is a failure of structural power relations. Strategic boards are inherently unequal environments. On one side of the table sit professionals on secure, often six-figure salaries; on the other sit exhausted parent volunteers who are navigating the system for their own children.
When deeply challenging, lived experiences were shared in these meetings, a bureaucratic coldness often settled over the room. When I voiced this observation, I was reminded that officials “have a job to do” and must remain objective. But SEND is inherently human; when emotional reality is entirely decoupled from strategic decision-making, a dangerous chasm opens between the boardroom and the reality of families on the ground.
This structural disconnect is mirrored in the planning cycle. In my experience, PCFs are rarely involved in the co-design (another buzzword) of strategy from day one. Instead, we were routinely brought in at Stage four or five of a business plan, after the scoping, budgeting, and core decisions had already been finalised (sound familiar?). The forum’s role was reduced to ticking the “parent consultation” box. Because I am a high-profile advocate, my presence was inadvertently used to signal to the wider community that parents were “on board,” justified by the mandatory signing of the board’s Terms of Reference. This created huge levels of cognitive dissonance.
The Culture of the “Sacred Board”
Furthermore, the internal culture and confidentiality constraints of these strategic boards often stifle the very accountability they are meant to foster. When the SEND commissioner chaired his first board here in Birmingham, he opened by telling members how “lucky” they are to have this coveted seat at the table. This immediately established a hierarchy whereby members (except me, who chose to walk away from this ‘privileged’ post), become protective of their positions rather than challenging the status quo.
When boards are bound by strict confidentiality and a mandate not to criticise partner agencies, they risk becoming institutional echo chambers. I requested that redacted minutes be shared publicly to remove the cloak-and-dagger feel for grassroots parents, but this never fully transpired.
When the community sees no visible impact, parent leaders are told that “changes take time to filter down.” Yet, over my five-year tenure, I watched successive generations of SEND children be failed by the system, because the institutional response was to continually hit the reset button (who can forget the council reset logo that adorned the entire city?) with new, compliant strategies rather than systemic reform.
The Exodus of Challenge and the Accountability Gap
The natural conclusion of this compliance-driven model is a quiet crisis of representation. When parent leaders realise that their presence is being used to legitimise decisions they cannot influence, they face an impossible choice between their voice at the table and their integrity.
My resignation in June 2023 was mirrored by a wider, national exodus of independent, challenging voices from the PCF space. When those who challenge are pushed out or choose to leave due to these constraints, the vacuum is filled by compliance.
Compounding this is a democratic deficit within the forum structures themselves. Many PCFs do not operate via transparent, democratic voting processes within their local SEND communities. When a forum operates as a Community Interest Company (CIC) without a clear electoral mandate from local parents, its legitimacy as a representative body is fundamentally compromised.
Reforming the framework for the future
Despite this evident representation gap, central government continues to discuss handing these compliant structures more power and funding. This is doubling down on a broken architecture.
Since moving outside the formal room, I have found that true accountability is achieved through direct advocacy – using Judicial Reviews, political surgeries, and public media pressure. The system is far more responsive to legal timelines and public scrutiny than it ever was to a parent presentation in a closed committee.
If PCFs are to survive and truly serve the families they represent, the model must be radically reformed to prioritise independence over compliance. We must stop asking parent leaders to act as PR shields for failing systems. Until these constraints are lifted and the “critical” is valued as much as the “friend,” the table remains a prop – and our children deserve far more than a performance.
About the author
Sabiha Aziz is a parent carer with over three decades of experience navigating the SEND and healthcare space in Birmingham.
She is a BBC “Make a Difference” Award winner, a frequent media commentator on SEND reform, the Founder and Chairperson of the SEND Parent Action Group (SENDPAG), and the former Chair of the Birmingham Parent Carer Forum.
As an academic collaborator with Professor Luke Clements, Sabiha works extensively to highlight systemic failures, dismantle institutional gatekeeping, and secure statutory rights for disabled individuals and their families.
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Also read:
- WEBINAR RECORDING! The implications for children’s legal rights to EHCPs and EOTAS of the Government’s SEND proposals
- When things go right: Shining a light on SEND Practitioners making a positive impact [Giveaway!]
- From suspicion to support: why the Government’s child protection reforms matter for disabled children
- Have your say on the future of transport for disabled children and young people
- Unison voices major concerns over SEND reform health plans for sick and disabled children out of school in the EOTAS consultation
- Top Tips for the EOTAS & EHCP consultation: Protect your child’s rights to statutory SEND support
- REGISTER NOW! WEBINAR on the Government’s plans to cut EHCP and EOTAS rights. With SNJ & SEND legal charity, SOS!SEN
- Navigating constraints: Why a former PCF chair thinks the current model is missing the mark for families
- Dear Secretary of State for Education, Lucy Powell: an Open Letter from Special Needs Jungle and SEND legal charity SOS!SEN
- Research: Disabled young people define inclusive education as “learning in the place that’s right for them”
- Why every child deserves Portage, wherever they’re born
- Mainstream SEND Funding: A simple explainer, another consultation, and why it really matters
- Navigating constraints: Why a former PCF chair thinks the current model is missing the mark for families
- What schools and practitioners are missing about Tamil and South Asian families trying to navigate the SEND system.
- Let’s write the true narrative of the SEND reform proposals: We want your unfiltered-by-AI views
- Should “highly valued” EHCP Independent Supporters return to help parents navigate the SEND jungle?
- Where will all the teaching assistants come from? The research exposing the reality gap in the government SEND plans
- Professor Brian Lamb OBE: Parent’s shouldn’t have to police the SEND system
- Fix SEND our way for 90% of SEND debt write off, Government tells councils, urging swift action on change. So much for co-production…
- SEND changes will be “co-created”. Which means what, exactly? asks the Education Select Committee
- Challenging SEND misinformation, one radio interview at a time
- Consultation with parents and carers: What can the Government learn from the SEND Review?
- The seven golden rules of co-production and guidance for researchers working with family carers
- How government-funded schools’ SEND training has young people’s experiences at its core.
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Previously Renata has been at the forefront of successfully changing government policy so interventions are needs-led and no longer diagnosis-led, and creating the world’s first specialist nurse for undiagnosed children at Great Ormond Street Hospital.
She also helped establish and grow the first online support community for families of undiagnosed children and spearheaded the very first undiagnosed children’s awareness day, including producing information videos that were shown in parliament.
She is a regular speaker on TV and at events, is an RSA Fellow and the mother of three children with disabilities, two of whom have complex needs and one of whom also has complex medical needs.
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