Health news and updates

This page will be updated regularly with any health related information that may be useful to parent carer forums or their wider membership.

If you know of something that you think might also be useful to other parent carer forums, please contact

Information for forums

NHS Long Term Plan

The NHS Long Term Plan was published in January and outlines priorities and areas of work that the NHS as a whole will be working towards over the next 10 years. You can read the summary or the full document.

The NHS Long Term Plan follows on from the Five Year Forward View published in 2015 and outlines the priorities and areas of work that are aimed at redesigning patient care and 'future-proofing' the NHS.

Below are just a few highlights from the document, we will know more about how these may work in practice as the plan develops.

If you would like more information on what the NHS Long Term Plan might mean to you and your forum, email

  • Increased funding for children & young people's mental health services.
  • Sustainability & Transformation Partnerships (STP's) will become integrated care systems (ICS).
  • Improving NHS wide understanding of the needs of people with learning disability and autism.
  • Expanding primary care (GP's) and multi-agency 'neighbourhood teams'.

National Institute for Health & Care Excellence (NICE)

There are a number of NICE guidelines in development that relate to children & young people with SEND that forums may wish to follow the progress of. Many of these guidelines are at the begining of a process to develop the guidleines. If you are interesting in knowing more about how NICE develops its guidelines and quality standards see NICE - development

  • Shared decision making - draft scope of the guideline currently in consultation. Also recruiting committee members. For more information see NICE-shared decision making
  • Service model for people with learning disabilities and behaviour that challenges - consultation to run from February 18th - March 18th. For more information see NICE -service model

  • Infant, children and young people's experience of healthcare - draft scope consultation just finished. For more information see NICE - experience of healthcare
  • Children and young people with disabilities & severe complex needs: integrated health & social care support & service guidance. Draft scope consultation just about to finish. Also recruiting committee members. For more information see NICE - integrated care
  • Epilepsies in children, young people and adult. Draft scope consultation just about to finish. Also recruiting committee members. For more information see NICE - Epilepsy

Consultation on Learning Disability and Autism Training for Health and Care Staff

The second report of the Learning Disabilities Mortality Review Programme (LeDeR) was published in May 2018 and showed that people with a learning disability can experience discrimination and inequalities in health and care services, in part as a result of health and social care professionals not having sufficient knowledge and skills to understand and respond to their needs.

There is now a consultation on what the training should look like, including:

  • The planned content of the training.
  • How the training should be delivered.
  • How to involve people with a learning disability or autistic people in training.
  • How we can mandate, monitor and evaluate the impact of training.

See more details and consultation documents.

Find out how well your Clinical Commissioning Group is performing

My NHS allows you to look up your local CCG (and other healthcare providers) and see how well they are performing against the Improvement and Assessment Framework Guidance for CCGs.

One area that is particularly relevant is the Patient and Community Engagement Indicator. NHS England has recently released some guidance for CCG's on how well they are meeting the statutory guidance on patient and public participation in commissioning health and care.

You will find your CCG's performance for Patient and Community Engagement under the Leadership/Well Led section of the CCG data.

NHS England Quick Guides

NHS England has recently published two Quick Guides to aid health commissioners and providers with joint commissioning of services and provide guidance on developing processes to ensure that children and young people with SEND are fully supported. Forums could send onto your local health commissioners.

The guides are:

1) Guidance for health services for children and young people with Special Educational Needs and Disability (SEND).

2) Commissioning for transition to adult services for young people with Special Educational Needs and Disability (SEND).

You can find the guides on NHS England's SEND pages.

Information for forums to pass onto parent carer members (and ask to be put on your local offer?)

Tips for preparing for medical appointments

The Lightyear Foundation is a science-based charity that works with disabled children to engage them in science. Their Sensory Science is an immersive, creative sensory experience breaking down the barriers to science participation for disabled children. As part of this work they have developed some 'top tips' to help prepare children for medical appointments.

Resources and grants to engage blind and partially sighted children in music.

The Amber Trust aims to enable blind or partially sighted babies and young children to engage with music by providing families and professionals with resources and ideas for music-making. Their Little Amber (age 0-5) and Amber Plus (age 5-18) resources are free and include simple ways of promoting engagement with your child.