HPCI Member update 24 November 2023

This week’s update covers the following topics:

  • Feedback on the Ofsted / CQC report and next steps
  • Neurodiversity Support Hub
  • Children and Young People’s Mental Health Directory
  • Contact’s parent carer strategy survey
  • Invitation to join Cambridge Children’s Hospital Parent Carer Voice Group (open to all in the East of England)
  • Concerns about latest draft guidance from NICE on Cystic Fibrosis (consultation closes today)


Feedback on the Ofsted / CQC report and next steps

Following our last update on the publication of the Area SEND Inspection for Hertfordshire, I wanted to say thank you to all those who have given their feedback on the report’s contents.  We have shared family feedback with the local area partnership (HCC and Health) and we also hosted this week a meeting of our Involvement Partners, so officers could hear directly from those working in the voluntary sector and campaign groups.  HPCI reps also attended this week’s council meeting of the Education, Libraries and Lifelong Learning Cabinet.

Overall, many families reflected on a sense of upset and sadness.  People commented that the findings were not a shock, but that it was difficult to see their experiences reflected in black and white.  There were some areas in the report which didn’t seem to chime with many families’ experiences.  This was raised with us particularly in relation to Preparing for Adulthood and post-16, support from social care, mental health waiting times, and also inconsistent levels of SEN support in some schools.

Some parents and carers felt angry about the apology given to families.  We have said to the local partnership that there is a long way to go before relationships can be rebuilt.  Many families said that they hoped this report would mark a turning point – the focus now must be on the delivery of change and a clear improvement in the support our children receive.

Moving forward, HPCI is now feeding views into the development of the revised improvement plan that must be submitted to Ofsted / CQC in December. We are also sharing your concerns that the focus on these new plans must not take away from other areas of service delivery.


Neurodiversity Support Hub

Many families will be interested to know about the Neurodiversity Support Hub, which is now available for all families to access (your child or young person doesn’t need to have a diagnosis).  This Hub has been in a pilot phase for some time but is now fully staffed and we hope will prove a valuable resource to families in Hertfordshire. Further details are available here.


Children and Young People’s Mental Health Directory

Another valuable resource which is now available is this directory which sets out the range of mental health services available in Hertfordshire for children and young people. While it is aimed at professionals, it may be of help to those families who are looking to understand what support might be available and how to access this.


Contact’s Parent carer strategy survey

Contact (the national charity for families with disabled children) has asked us to share this survey as they develop their new strategy for 2024 and beyond. They are keen to hear from as many parent carers as possible about the support you need from Contact. To help, please fill in this short 5-minute survey.


Invitation to join Cambridge Children’s Hospital Parent Carer Voice Group (open to all in the East of England)

The Cambridge Children’s Hospital would like to invite parents and carers from across the region, with experience of caring for a child in hospital and/or mental health services, to join their Parent Carer Network. Further details are available here.


Concerns about latest draft guidance from NICE on Cystic Fibrosis

Contact have shared concerns that latest draft guidance from the National Institute for Health and Care Excellence (NICE) may shorten the lives of children with cystic fibrosis (CF).

NICE, which evaluates treatments, has concluded that some effective therapies currently available on the NHS should no longer be prescribed to new patients on cost grounds.

People have until 24 November to respond to the consultation. You can read the draft guidance and submit a response on the NICE website.

You will need to create a free account with NICE to submit a response and you can read more from Contact here.


Many apologies for the late notice on this last item.  If you would like more regular updates from us, please do follow our Facebook page, where you can also message us with any queries or feedback.