You said, we're listening .......

You said... it’s scary when you hear your child will be put onto the Dynamic Support Register (DSR) or Database (DSD) because you think your child might te taken from you.

We're listening... firstly, we can confirm that this is not the purpose of the DSR or DSD.  We are working with both north and south Cumbria to gather information that can be shared about the DSR and DSD so that it is clear what it is, why a child or young person might be added onto it.  We expect to launch a new page on the Local Offer by 31 October 2023.

You said... families would benefit from one place to go for all the information they need on Autism and not have to search lots of different websites.

We're listening... we are developing an Autism Hub on the Local Offer website which will include all of the information families will need to know from the start of the autism pathway right through to post assessment support.  The Autism Hub is being developed in co-production with parent carers and young people with Autism.  We expect the Autism Hub to launch by 31 December 2023.

You said... we would send autism
pathway information to families at the
start of the process so we can see what      
should happen when and understand
timescales.

We're listening... we have mapped
the process and will be developing
digital leaflets that will be available on
the Local Offer website that can be
printed and sent to families if required.
We expect to have the digital leaflets
launched by 31 December 2022.

You said... the letter received after 
an assessment for autism is not a
good letter.

We're listening... providers are
reviewing their letters, and Cumbria,
Northumberland, Tyne and Wear
NHS Foundation has a carer
working with them to review all
letters that currently get sent out.
The intention is that all letters will
be reviewed and where 
appropriate to do so, will be 
amended with any new amended
letters in place by 31 March 2023,
if not sooner.

You said... some paediatricians will not
accept assessments from other services
if they are not recent.

We're listening... a facilitated event
is due to take place with
paediatricians to better understand
the systems they currently have in
place, the reasons for those systems,
and what can be altered to improve
service delivery.  It is expected that
this event will highlight changes that
need to be designed and embedded
into services.  A target completion
date for this work is 31 March 2023.

You said... we tell you what doesn't
work, but never hear anything more.            
        

We're listening... we're implementing
a 'you said, we're listening, we've done'
approach to keep families updated on
progress with improvements, along with
targeted completion dates to help manage
expectations of the time some changes
take to implement and embed as
business as usual.  We expect to have
the approach complete by 31 December
2022.

You said... there is often a delay in
between being told your child has
a diagnosis of Autism and the report
being received.  This is really
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 one-
page statement of diagnosis has
been put into place which will go
out to parents via email or letter as
soon as the diagnosis is made.            

You said... we don't like our children
being described as having a disorder 
or condition ie Autism Spectrum
Condition.

We're listening... there is lots of research
which suggests what the preferred
terminology is, however, we want to 
ensure the terminology that Cumbria
SEND Partnership uses is right for the
autistic adults, young people and 
children in our county.  A consultation
on Autism terminology will launch in
September 2022.  We expect to share
the results from this consultation in
November 2022.

You said... finding information on
behaviour that challenges and access to
support when children and young people
are in crisis was difficult.   

We're listening... we worked with young
people, their parents and carers, and
mental health practitioners to develop a
Crisis section on the SEND Local Offer.
The Crisis page brings together 
information, advice and support in a
graduated way, from 'I need help but not
immediately', to 'I need help right now'. 
We also included a list of 
Top Resources recommended by
families and practitioners.                          

You said... it would be helpful to have
information about Autism in one place,
'rather than relying on families to trawl   
the internet to find it'.

We're listening... as part of the
Autism graduated pathway work, an
Autism Resource Hub is being 
developed with families and 
practitioners in Cumbria.  The web page,
which will sit on the SEND Local Offer
site, is currently in development and
will include information and advice
about Autism, including the diagnostic
processes in Cumbria, as well as 
support once the assessment is
concluded, whether your child receives
a diagnosis or not.

You said... there was no support or
diagnostic route for children and young
people with sensory processing issues in
Cumbria.

We're listening... co-produced a
sensory processing education session avail-
able to view on the SEND Local Offer, and 
work is currently underway to evaluate
support available in Cumbria, which will
culminate in a report with recommendations to
fill gaps and ensure our children and young
people with sensory processing needs are
supported appropriately.

You said... upload a short paragraph
explaining what Cumbria SEND Local
Offer is.                        

We're listening... this paragraph now
sits on the Home Page on the Local
Offer.

You said... information and instructions
about the new SEND Citizen Portal

We're listening... the new SEND
Portal is a secure online resource
allowing parents, carers and young
people to provide input into EHCPs.
This information and how to register
can be found at: SEND Citizen Portal.       

You said... create a dedicated SEND
Local Offer Facebook page.

We're listening... Cumbria SEND Local
Offer Facebook page can be found at:
Cumbria SEND Partnership | Facebook   

You said... we would like events to
attend around the County to discuss
more about what happens when your
child leaves school.

We're listening... these events
currently take place at least once per
year. Follow our Facebook page to keep
up to date when these will take place.

.

You said... more information on Short
Breaks and how to apply.

We're listening... new web pages can be
found on the Local Offer at Short Break Activities
and Overnight Breaks.

You said... we would like a dedicated
SEND Newsletter for parents.

We're listening... these are published
approximately every 6 weeks.  You can
sign up or download the newsletters
at: SEND Newsletters.