What parent carers told us this September...

Throughout September, Lancashire Parent Carer Forum listened to families at our Family Hub drop-ins across Lancashire and at the Burnley Roadshow.

Conversations covered education, health, social care, transport and the challenges of finding the right support. Families came with questions, concerns and experiences they wanted services to understand.

This round-up brings together the main themes. It reflects what parent carers shared with us, rather than a comprehensive picture of every family’s experience or a statement of service policy. We have combined and anonymised the feedback to protect families’ privacy.

School support that reflects children’s needs

Parent carers described difficulties getting their children’s needs recognised and supported at school.

One concern was the difference between how a child appears in the classroom and how they cope at home. Families wanted their observations to be taken seriously, including when distress or difficulties were less visible to school staff.

Other conversations highlighted reduced access to education, worries about exclusion, and uncertainty about what to do when support was not being provided.

Transitions between schools were another concern. Families described the need for earlier planning, clearer communication and support that continues when a child moves to a new setting.

Finding information and navigating the system

Many questions centred on understanding what support exists and how to access it.

Families asked about assessment pathways, waiting lists, contacting community paediatricians, parent programmes and services such as Neu Way. There were also questions about the difference between learning difficulties and a learning disability.

Some parent carers described additional barriers when English was not their first language.

The message was clear: families need accessible information, a clear point of contact and practical explanations of what happens next.

Communication, delays and being heard

Parent carers raised concerns about delays in assessment pathways and uncertainty about progress.

Families also reported not being informed when their EHCP caseworker changed or left.

Questions about EHCP reviews, school placement consultations and lengthy tribunal processes added to the uncertainty.

Some families told us they had not yet felt the benefit of improvements to EHCP processes.

Across these conversations, parent carers wanted timely updates, clearer expectations and confidence that their knowledge of their child would be listened to.

Respite and support for the whole family

Access to suitable social care support and short breaks remained a concern.

Families described difficulty finding provision that could meet their child’s needs, particularly in East Lancashire. Travelling further afield could reduce the practical benefit of a short break, especially when parents needed to remain nearby.

Some reported being told their child was too young for particular support, while others were unsure where to turn when available activities could not accommodate their needs.

Conversations also highlighted the importance of support when a parent carer becomes unwell or family circumstances change.

Access to health and specialist support

Families raised difficulties accessing speech and language therapy and support for eating difficulties, including ARFID.

Some described concerns that their child’s communication or other needs were being attributed to an existing diagnosis, rather than considered individually. Parent carers wanted reassurance that additional needs would be recognised and explored.

Sleep support was another issue. Families asked what happens next when assessments and suggested strategies have not resolved the difficulties.

At the roadshow, some attendees also wanted access to speech and language professionals to discuss their questions directly.

Reliable school transport

Parent carers described transport arrangements that were not confirmed in good time, last-minute cancellations and concerns about lengthy journeys.

These difficulties added to the pressures of the new school year. Families wanted transport planning to happen earlier, with clear communication and arrangements suited to their child’s needs.

The value of face-to-face conversations

Alongside the concerns, there was positive feedback about opportunities to speak directly with professionals.

The involvement of learning disability nurses at a West Lancashire drop-in was particularly welcomed. The Burnley Roadshow also provided opportunities for conversations between families, the Forum and professionals, including people new to SEND roles.

These connections can help families ask questions and help professionals better understand their experiences.

How this feedback informs our work

Bringing these experiences together helps us identify recurring concerns, shape our engagement work and inform the collective parent carer voice we bring to discussions with Lancashire County Council, the NHS and other partners.

Where appropriate, families were signposted or referred to SENDIAS for further information and support.

Collecting feedback does not mean every issue has been resolved. It helps us understand where families are experiencing difficulties and what they want services to address.

Thank you to everyone who spoke with us this September. We know how precious your time is, and your contribution matters.

Does this reflect your experience?

You can share your views with the Forum or join one of our friendly, informal drop-ins. You do not need a diagnosis, and you can share as much or as little as you feel comfortable with.

Find a drop-in or contact us directly to share your views