Thank you to everyone that took time to complete the surveys we've been running for the past few months. We've now had feedback from almost 1500 people.
- 538 responses from parents/carers of children/young people with an EHCP (see the respondent profile below for a sense of who completed the survey).
- 367 responses from children/young people with an EHCP.
- 408 responses from parents/carers of children/young people receiving SEN Support.
- 27 responses from children/young people receiving SEN Support.
- 159 responses from SEND professionals.
We're still working through all the feedback and will be publishing a Special Edition eBulletin with all the results soon.
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We now have a range of different pieces of work starting to take shape aimed at improving the experience for parents/carers and children/young people. And we really need the involvement of parents/carers and children/young people.
Exactly how that works will need to be discussed with those who want to be involved. It could involve attending events, but we're also looking to do more online to make it easier for people.
If you'd like to get involved in any of the following work areas please complete our short form and we'll be in touch.
- Re-commissioning of Short Breaks
- Speech and Language Therapy
- Occupational Therapy
- Autistic Spectrum Disorder
- Post 16 college model
- Transition roadmap
- Local Offer website
- Short breaks
- Emotional Health and Wellbeing
+ EXPRESSION OF INTEREST FORM
One of the things the surveys have told us is that parents/carers do not feel well enough informed. We are thinking about how to improve that.
One idea is to create an online discussion forum for parents/carers in Cumbria where they could share experiences and ask questions of other parents and professionals.
Many parents/carers are members of Facebook groups which can provide a similar function. But they are not always easy to follow conversations, find relevant information or search past posts. A discussion forum could develop into a valuable information resource if it was well used.
Complete the super-short two question survey to let us know whether this is an idea we should develop further.
+ COMPLETE MINI SURVEY
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The SEND Improvement Programme is working to carry out all the actions in the Written Statement of Action. The work is being led by six Working Groups, all of which involve parents/carers. Below is a brief summary of their work so far.
Working Group 1 - Understanding of Need
The group has published a Joint Strategic Needs Analysis (JSNA) which pulls together all the information we have about SEND into one place. It's an important step in ensuring there's a shared understanding across the county.
A draft Performance Management and Quality Assurance Framework (PMQAF) has been developed and is being finalised. This will mean there is a shared understanding of "what good looks like" and a shared way of monitoring performance key measures.
Working Group 2 - Commissioning
The group has developed materials to improve the knowledge of Integrated Care Communities (ICCs) and Primary Care Networks (PCNs) of the needs of children and young adults with SEND and their families.
They have worked to enhance existing arrangements for psychological support for children and young people receiving palliative care by rewriting guidance on how to access this. They are bidding for funds to make this provision less ad hoc and more routine.
They have started a process to improve the range of options available for Short Breaks which will be co-produced with parents/carers and children/young people (see above).
Working Group 3 - Engagement and Co-production
A parent/carer Reference Group has been created to act as a sounding-board for the Improvement Programme and parent/carer representatives are attending all Working Groups.
+ Would you like to join the Reference Group?
A range of different surveys have been conducted to help us find out more about people's experiences (see above). Nearly 1500 people have responded.
Four SEND Conference have happened with nearly 200 parents/carers attending to discuss what needs to happen next.
They are continuing to develop the All of Us forums to hear from children and young people themselves. Working to further improve how children and young people can engage in the programme.
Working Group 4 - Preparation for Adulthood
A draft Preparation for Adulthood 'roadmap' is being prepared for discussion with the parent/carer Reference Group in February ahead of roll out and wider training in the Spring.
A new Preparation of Adulthood tool has been developed for professionals a should now be being used in all Education, Health and Care Plan reviews.
A date has been set for the first of two Transition Fairs aimed at young people and their families (more below).
Working Group 5 - Emotional Health and Wellbeing
Targeted and specialist mental health services for children and young people are continuing to prioritise a reduction in waiting times for treatment, and while there is much more to achieve significant progress has been made, in spite of a continued increase in requests for support from these services.
An analysis of caseloads of one of the CAMHS teams has identified that a significant proportion of the children receiving treatment have Autistic Spectrum Disorder, and about half the children receiving more intensive treatment have this condition. This tells us that not only do we need to ensure that specialist practitioners need to have a good understanding of the condition and how best to treat mental health conditions alongside it, but also that there needs to be a systematic approach to preventing the onset of mental health needs in this group of children, and intervening early when they do emerge.
One approach the group heard about was described by a parent who has participated in a pilot project exploring ways of working differently with families to be able to reduce challenging behaviour.
They report that the quality of information available is improving and this will enable us to monitor outcomes more effectively.
Working Group 6 - SEN Support
A new system is being implemented to record and monitor pupils who are on a part-time timetable or without a school placement. This is work in progress.
A new SENCO network has been established to help share information and best practice with schools. Meetings have happened and were well received.
A pilot project has been started testing the NISAI home learning online platform as an approach for supporting children/young people not attending school.
Hearing your stories
One of things we have been doing is inviting parents and carers to share their stories on video. It's a powerful way of making the challenges people face clear and immediate to professionals. Click on the image to watch Beth explain her experience of accessing services for her daughter, Esme. Their story was shown at the recent conferences.
 We're inviting more parents and carers to share their stories. If you are interested please get in touch and we can talk to you about what's involved. We'd also love to hear from children and young people who like to share their stories in this way.
+ EMAIL adam.hughes@wearepeoplefirst.co.uk
Positive feedback on EHCP review workshop
At the end of January around 40 parents, carers, professionals attended a workshop run by the National Development Team for Inclusion which was the first stage in developing system-wide training around ensuring consistently high quality Education, Health and Care Plans (EHCPs).
Parents/carers and professionals worked together to review 80 anonymised EHCPs to identify priorities for improvement, with a particular emphasis on Preparation for Adulthood. Further sessions are being planned for March and the intention is to develop this into a training package that can be delivered across the whole system.
Charlotte Wight, parent/carer representative on Working Group 3, attended the session, she said:
"This event was very useful because we were working productively together to understand that preparation for adulthood should begin from the early years. Barry was excellent as an ‘independent lead’ and facilitated engagement with parents and professionals to work together to identify best practice. The best part for me - as a parent - was that I started to see that everyone is beginning to listen to each other. I feel positive that as this work continues it will have a positive impact for much needed change. I loved the quote that Barry gave to help everyone move forward which was to ‘facilitate with kindness’."
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Health & Wellbeing Event for families of children & young people with a Learning Disability and Autism
Wednesday 25 March, Carlisle Youth Zone, 9.30 - 3.00 pm.
Crèche Available for 0-5 year children (need to book places).
Lots of information that may help you to support your child/young person with additional needs. There will be the opportunity to speak to professionals, 3rd sector/voluntary organisations and to try out some self help tools. Come long for the day or half a day—sessions repeated in afternoon. Lunch is provided
+ MORE INFORMATION
+ BOOK YOUR PLACE
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Productive discussion with SHOUT parent support group
In January David Blacklock, Chair of Working Group 3, responded to an invite from SHOUT Parent Support Group in Maryport. We asked Joanne Hill from the group to explain what's happened.
Shout Parent Support Group are based in Maryport. We have been supporting families for almost 7 years. During this time we have hosted many different professionals to speak to families & deliver workshops .
Families approach us for advice and support. We signpost to a variety appropriate services. Families have identified ongoing issues regarding CAMHS. Families feel they had exhausted all options available.
We invited David Blacklock to our January meeting which was very productive.
We approached Ewanrigg Local Trust. They have the ‘We Will' Youth Mental Health Group to raise our concerns. This group has achieved admirable work highlighting and publicising the need for youth mental health training.
David Blacklock raised our concerns at a recent conference. We are delighted to have received an email from Fiona Dixon (CAMHS). We were asked to highlight the specific issues that families were facing.
Shout & Owl Blue charity collated the evidence with the permission of our members, and arranged a meeting with Fiona Dixon and her colleagues. We feel this is necessary to give confidence to our families that their concerns are being taken seriously. This meeting is a huge step forward as it will enable parents and professionals to work together by removing barriers.
Shout Parent Support Group & Owl Blue Charity Maryport support this initiative as we engage with families who are seemingly stuck in a system that isn’t working.
CAMHS should support SEND families in a proactive and productive way with early intervention, playing a key role. SHOUT Meeting will take place on 19th February 2020 at the Ewanrigg Community Centre, Maryport.
+ FIND SHOUT ON FACEBOOK
Don't forget the SEND Local Offer
The SEND Local Offer is an online information source for all things SEND in Cumbria.
+ Visit the SEND Local Offer
What do you want to read more about?
This eBulletin is one of the ways we are trying to keep people better informed. Please tell us if there are topics you would like to hear more about or information that you think we should be sharing.
+ EMAIL kieran.barr@cumbria.gov.uk
The Cumbria SEND Improvement Programme has been created by Cumbria County Council, NHS North Cumbria Clinical Commissioning Group and NHS Morecambe Bay Clinical Commissioning Group, working with Cumbria Parent Carer Forum, to respond to recommendations from Ofsted/Care Quality Commission following their 2019 inspection of SEND services in Cumbria.
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