February 13, 2017

Today, a report of the experiences of 38 parents was sent to Hertfordshire's 'All Age Autism Partnership Board' with a call for action.

The majority of parents had very poor experiences of local services and of the diagnostic process. One mother wrote:

"I first became aw...

February 13, 2017

The process of diagnosing Autism has changed in recent years, following the direction of the American diagnostic manual (DSM-5) which did away with the distinction of 'Asperger's syndrome', 'Autism' and 'others' and provided us with the formal diagnosis of ASD, with pr...

November 1, 2016

A proposed amendment to the Children and Social Work bill would require assessment of children entering care to check for neurodisabilities (such as ADHD or ASD) and sufficient training of those supporting them.    It has received widespread support from charities and...

August 17, 2016

Pathological Demand Avoidance was described as a condition relatively recently, and while schools and parents are recognising children with the distinct set of characteristics, clinicians have correctly been awaiting more detailed research evidence. Separating out indi...

August 1, 2016

This report describes the experiences of Isaac and our family while accessing services from CAMHS (Child and Adolescent Mental Health Service) and Social Care in Hertfordshire over the past 6 years.

It describes what was done well and what could have been improved...

August 1, 2016

In 2008 the health visiting service was in decline and the effects on families were captured in this report of a survey of 6,000 mums. 'Left fending for Ourselves' was the Netmums' response to seeing families with very young children struggling with concerns about thei...

July 28, 2016

When health problems are discussed, very often it is professionals getting together to try to work out what will work best. It is not often that we get insights into the experiences of those who are suffering with illness.

This report was a helpful reminder of the diffi...

July 27, 2016

This personal profile is a resource intended to help identify individual PDA traits, and what actions can help. It could be adapted for use by others with Autism Spectrum Conditions, or other disorders. As a family, we used this completed example.


July 27, 2016

The Demand-Anxiety cycle helps families explore what it means to have Pathological Demand Avoidance (PDA) and to explain the key aspects of the condition to others.

It illustrates the way in which the anxiety created by the need to avoid demands can become a contin...

July 27, 2016

The Pregnancy and Post-Birth Wellbeing Plan 

This plan is used by women with support from their midwife or health visitor at around the time they are also thinking about a Birth Plan.

By considering the possibility that they may need support, and by talking to their par...

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August 17, 2016

July 27, 2016

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I was co-founder of Netmums and a Director for 14 years. During that time we found new ways to support parents and ensure their voices were heard by Government.


As the Founding Chair of the Institute of Health Visiting I have seen the importance of positive, professional leadership in an essential profession.

Based on personal experiences, I have an interest in developing insights and finding new ways to support people.


I hope that some elements make a contribution to helping  professionals work more effectively, through use of both local and digital communities.

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These are the surveys, reports and tools that I have been involved in creating over recent years.


I hope that some of them may be of use to others, so please browse and borrow from my online library. 


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© 2019  Sally Russell

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