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Parent interviews

Published Tuesday 18 June 2019

We want to make things quicker and easier for people whose lives are already complex enough. So we started by speaking to 27 parents of children with SEND to gain a vital understanding of the challenges they face.

Actually, we didn't want to talk – we just wanted to listen.

With over 27 hours of transcribed recordings we took everything we had learnt and set about finding themes in the discussions. A few topics stood out clearly as issues which were affecting a majority of parents:

Feeling 'lost' in the system

Worries about the future

The stress of the EHCP process

Having to battle

Feeling 'lost' in the system

Something which came up in every interview was that, at some point, everyone had felt lost or left to fend for themselves.

As a result, most parents told us that their main support networks were other parents, rather than the SEND services provided.

We’re working on improving the Local Offer online, helping parents find the information they need faster and know where support could come from in times of stress.

 

"All I’ve done is get passed around.”

A number of people talked about the constant change of hands, and the frustration of having to tell their story over and over again.

“He’s in the grey area – he’s not normal normal and he’s not too disabled.”

Some parents expressed that services never quite fit the needs of their child, leaving them feeling displaced.

“I didn’t choose to home educate – I’m struggling to get help."

Not knowing the available options caused some parents to feel a lack of control, leading to decisions which weren't made out of choice.

Worries about the future

Everyone worries about the future and times of change, but for families of children with SEND there are very specific concerns to face.

We’re reviewing our services that help young people with SEND prepare for adulthood, and also how we deliver our services locally to you.

 


Changing schools

  • How will my child get on at secondary school?
  • Will they get bullied?
  • Will they have friends?

Gaining independence

  • What happens after secondary school?
  • What happens when EHCP stops and parents can't get childcare / funding they need?
  • How will they get a job?

What happens when we're gone?

  • Who will look after them?
  • Where will they live?
  • Will their siblings have to be their carers?

The stress of the EHCP process

For those who were going through the process of EHCP, in all different stages, they were united by the stress of it.

This kind of feedback applied to other form-filling tasks too, including things like Disability Living Allowance.

We'll be introducing a new system to manage EHCP’s and annual reviews online, helping to make the process clearer for parents. We'll also be looking at new ways we can record the progress children with EHCP’s are making, to better understand what works and what doesn't.

 

Application / assessment

The emotional pain of filling in an application.

The lack of communication about what was happening in the process.

Waiting times for everything.

The plan

EHCP should be “child centred, not institution centred”.

The complexity.


Annual reviews

“The meetings I find very useful. The paperwork I find a bit unwieldy… it should be a lighter touch”.



Having to battle

We heard a lot about the experience of having to fight for everything.

We’re looking at our information and advice services, to make them clearer and more accessible for you. We’re also exploring different ways to help you contact your key workers, so that we can support your family more effectively.

 

“I felt that I had been painted as someone who was going to cause trouble”.

Having to battle all the time made some people feel that conversations always started on a defensive foot.

 

“Nobody responds… shutters are down and they don’t get back to you”.

Some people told us that they couldn't get through to services. They either didn't get a response or it takes weeks at a time.

“People were telling me ‘there’s nothing wrong’ and I felt very differently”.

Some parents felt that they weren't being listened to and professionals weren't taking their concerns seriously.

 

Compliments

It's really useful to hear the challenges families face because that's where we can focus improvements.

However, some parents told us about some of the successes too. This is equally important because knowing what works for people means we can do more of it in the future.

 

Health and council provision

“When health professionals are working with us, they make such a positive difference to our lives”.

“We had one social worker... who was absolutely outstanding… she was a real advocate for the children”.

 

Charities and independent support

“The only reason I have a better relationship [with the school] now is because of SENDIASS”.

“I did a course with a local charity who were fantastic and I cannot rate them enough... no-one tells you that info”.

“It’s often the charities, the local support groups and things that parents and carers have set up that have been helpful”.

 

Schools and places of education

“They wrote a nice short report about what his needs were and what interventions school should be providing”.

“It’s a fantastic service [at school] and they just kind of think outside the box”.

“Pre-school were brilliant, can’t fault them… really supportive… they put me in touch with an early years playgroup which was really good”.

 

Using your experiences to help shape SEND services

Everything we've learnt we'll take forward to inform the wider transforming SEND project, alongside the improvements we'll make to the Local Offer online. We'll keep talking to parents, sharing our findings here on this blog and keeping our visitors updated every step of the way.

There's still time to submit your feedback and get involved- join our research group and help shape SEND improvements.

 

Related posts:

Turning research into improvements

Building a better website structure

< Back to blog home

Page was last updated on: 02/01/2024 14:27:28

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