You said, we're listening

Thank you to everyone who has taken the time to share their views with us recently. We have received feedback from our:

The findings can be found on this page and in the following documents:

We would love more families to get involved in shaping and informing our services. You can do this by contacting:

We are continuing to action your feedback and will update this page regularly - updates will also be shared with families through our SEND and Alternative Provision Partnership newsletter and Facebook page. 

2024/2025

You said - Staff at the local authority sometimes lack compassion and empathy. Everything feels like a fight.

We're listening - Colleagues at the council took part in an ‘effective communications and challenging conversations’ session with Collis Mediation. This included:

  • EHCP coordinators
  • The virtual school's team

The session ran for a full day and was delivered by Dominic Collis and Nicola Cleaver, with Nicola being a SEND parent herself. 

From the learning we will be embedding an effective and compassionate communications policy, to ensure all parents and carers are met with compassion, empathy and respect. The policy will clearly set out how we will communicate with parents/carers.

The first priority in our Cumberland Local Area SEND and Alternative Provision Strategy is ‘working together and building trust’. We are committed to ensuring children, young people and their families in Cumberland feel listened to and respected by all professionals.   

You said - Communication from the local authority is poor. I was not informed that a member of staff from the council had left. 

We're listening - Going forward, when new education, health and care plans (EHCPs) are issued, we will ask parents/carers to please subscribe to our SEND and Alternative Provision Partnership newsletter. This will inform parent/carers if colleagues from the council are leaving.

If the member of staff is an EHCP co-ordinator, we will include details on when and how parents/carers will be contacted to inform them of who their new Coordinator is, and how they can get in touch. 

You said - My child’s EHCP took too long, and I had no clarification on when I would hear from the local authority.  

We're listening - We are currently producing an EHCP timeline, which will allow parents/carers to track their child/young person’s EHCP application process.

Parents/carers will be able to:

  • have a better understanding of when they can expect to hear from the local authority
  • know how to get in touch
  • know what the next steps will be 

New agency EHCP co-ordinators have been hired to address the backlog of EHCP applications and annual reviews. The co-ordinators will be working to ensure we keep to EHCP timescales. 

You said – Children’s Adolescent Mental Health Service (CAMHS) is difficult to access, with long waiting lists and barriers to access support.

We're listening - The Partnership are arranging conversations with CAMHS to:

  • understand the issues the service is currently facing
  • how we can best support the service.

The North East and North Cumbria Integrated Care Board (ICB) have recently appointed a new Designated Clinical Officer (DCO), Diane Watson. Diane will support commissioned health services in Cumberland for children/young people with SEND. The Partnership will be working closely with Diane. 

More information on local and national mental health services can be found in the crisis support section on our SEND Local Offer.

A reminder to always call 999 if someone is in immediate or life-threatening danger.  

You said - Professionals in education and the local authority are sometimes not as knowledgeable on SEND as they should be. As parents/carers, we feel the responsibility is on us to research our own rights. We sometimes question ourselves when we are told the wrong information.  

We're listening - We are currently writing a SEND professionals survey to be completed by our colleagues. This survey is being designed to help us spot the gaps in knowledge and understanding, so we can offer support and training to staff.

We have also recently hired a SEND Strategic Lead. Interviews took place in late April, and the person appointed has a wealth of experience, knowledge, and best practice. We look forward to introducing them to you once they are in post. We will keep you informed of their workstreams. 

You said - My child’s mainstream school are not always supportive and lack understanding.   

We're listening - We are continuing work to promote our ordinarily available guidance for schools and education. The guidance lays out what should be ‘ordinarily available’ for school aged children. 

The guidance outlines support that schools and education settings should offer to children who have identified with having special educational needs (SEN) or may have SEN. This includes guidance on:

  • reasonable adjustments
  • tools and suggestions for how teachers and education professionals can support children with different needs

The guidance outlines the responsibilities of schools and education settings to publish their SEN policy and the support they offer. 

We will be continuing work to embed our guidance with schools. This will ensure:

  • understanding of statutory duties
  • raising awareness with parents/carers to ensure mutual understanding of the duties of education settings

The SEND Strategic Lead will lead on some of this work. We will continue to ask for parent/carer feedback to ensure improvements are being made.    

You said - We are unaware of the social care offer, and it is confusing to know what services are available for my child. 

We're listening - We have appointed a new interim Designated Social Care Officer (DSCO, sometimes referred to as a ‘Disco’), Alison Mills-Clarke. Alison has practiced social care for over 24 years and brings a wealth of experience working with children and their families. 

Part of Alison’s role will include overseeing a review of our short breaks offer. Short breaks includes social care provision such as:

  • universal short breaks
  • targeted short breaks
  • specialist short breaks and direct payments

We will be consulting with children/young people and their families to find out more about:

  • how our services should support them
  • how we can make this offer more accessible
  • how we can ensure families can be made aware of the support available to them
  • how they can access this  

You said - The targeted short breaks service is not inclusive and does not cater to children with higher or more complex needs. Many providers do not offer personal care. We also want activities that are specifically for teenagers/young people, so that they have the option to attend activities with peers of their age.  

We're listening - We have commissioned new targeted short breaks providers and in the process of commissioning more. As part of this, we have commissioned Carlisle Mencap and West House, both of whom are able to offer personal care to children who attend their sessions.  

West House are also offering some activities on a 1 to 1 basis, so children with more complex needs can attend these sessions.  

We have commissioned People First, who are offering activities for young people aged 14 to 18 years. These activities are available in:

  • Carlisle
  • Maryport
  • Whitehaven
  • Workington

Some sessions will focus on independence and offer young people the opportunity to explore their local community in small groups (maximum 6 per session, 1 staff member to every 2 child/young person).  

Learn more about targeted short breaks  

You said - Transitioning to adulthood is a confusing time. There is lack of information and support.  

We're listening – Cumberland Council have recently produced a Moving on – transition guide. The guide was co-produced with children/young people with SEND in Cumberland. 

This document outlines:

  • what transitioning to adulthood is
  • guidance on mental capacity
  • what a transition worker is and what they do
  • what should take place and when

We are continuing to promote this guide with children/young people and their parent/carers

We are reviewing the information related to transitioning to adulthood available alongside our adult social care and housing team.  

 

2023/2024

You said – Providing feedback on SEND services is difficult and time consuming. Families have told us they would be more likely to provide feedback if our surveys were in a simple format. 

We’re listening - We have co-produced with SENDAC, an annual survey with less than 20 questions. It uses easy to understand language, without jargon. 

You said - Families would benefit from 1 place to go for information on autism and not have to search lots of websites. 

We’re listening - We launched the autism information and support hub on the SEND Local Offer. 

The Hub includes:

  • information about the diagnostic pathway
  • the graduated approach to autism
  • how to get support

The autism information and support hub has been developed in co-production with parent carers and young people with autism.   If there is anything you think could be improved, please complete our survey.   

You said – We want clear accessible information on health services for children. 

We’re listening – Specialist health services information have been developed. There are details of:

  • what each specialist health team do
  • information sheets and videos
  • details on how to make referrals to the service

You said – The SEND transport system is not fit for purpose. 

We’re listening – We carried out a public consultation on proposed changes to the home to school transport policy. We worked with SENDAC prior to the consultation. SENDAC provided information to parents and carers and co-ordinated a series of information and consultation meetings. The consultation concluded in December 2024. The feedback received will be used to improve the transport policy. 

You said - We don't like our children being described as having a disorder or condition.  For example: Autism Spectrum Condition. 

We’re listening - A consultation was launched in 2023 asking residents of Cumbria what language they would prefer when it came to autism. 

The consultation results stated that most autistic individuals and families preferred identity first language, that is:

  • an autistic person
  • I am autistic

This was instead of other terms used such as:

  • the person has autism
  • the person has Autistic Spectrum Disorder

We are now working on rolling out this terminology across multiple organisations in the county.  This will ensure families are met with more consistency when speaking about autism. We appreciate parent and carer’s patience while this work is taking place.  

You said - The transition to adulthood process can often be confusing and distressing for families. There is not a lot of support for children and young people suffering with mental health issues.  There is lack of clarity surrounding options for education and employment. 

We’re listening - We completed an experiences and outcomes survey on transition to adulthood in the Summer of 2023.  From this survey it was clear many families felt the process was confusing and distressing.  This was especially for those who did not have an education, health and care Plan (EHCP).  There was lack of support overall.  Specific feedback was also provided, including a lack of information surrounding care act assessments. 

Following the responses, a report was presented at the SEND Partnership Board. In this report, the SEND Partnership outlined plans to action key outcomes:

  • work in partnership with the commissioned career support service, Inspira, to ensure maximum outreach
  • raise awareness and how to request a care act assessment.
  • we hope to complete a session with the SEND Information, Advice and Support Service (SENDIASS) surrounding care act assessments in early 2024
  • we have recently produced a comprehensive guide to transitions for young people with SEND 

 You said - The SEND Local Offer is difficult to navigate and clunky.  

We're listening - We are currently working with the council, NHS colleagues and SENDAC  to make improvements. SENDAC have recently completed their annual survey, which contains questions about the SEND Local Offer.  We may ask for further feedback and ideas in the future.   

Current improvements have included adding a professional’s hub so professionals can be:

  • reminded of deadlines
  • find useful resources in 1 place
  • share relevant information with families

We have also added a getting involved section, which features information on:

  • how to provide feedback
  • share your ideas for improvements
  • get involved with wider community events

We will keep parents and carers up to date on developments via our Facebook and SEND Alternative Provision Partnership newsletter.

You said - There is often a delay between being told your child has a diagnosis of autism and the report being received. This is frustrating. 

We're listening - We are working to address the time it takes to get reports produced and sent out to families. In the meantime, a 1-page statement of diagnosis has been put in place which will go out to parents via email or letter as soon as the diagnosis is made.