Embracing Complexity Coalition

Posted on 28 May 2019

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Tourettes Action are proud to be partners with the Embracing Complexity Coalition

In May 2019 leading UK Neurodevelopmental and Mental Health Charities  launched the 'Embracing Complexity Coalition' which is formed of leading UK charities including: ADHD Foundation, Afasic, Brain & Spine Foundation, British Dyslexia Association, Cerebra, Down Syndrome Research Foundation UK, Epilepsy Action, Epilepsy Research UK, Fragile X Society, I CAN, Mencap, McPin Foundation, MQ, The Neurological Alliance and Tourettes Action - chaired by Autistica.

The Coalition is spearheading a movement to ‘work together’ to create a new approach for the future to better meet the complex needs of people with neurodevelopmental conditions (NDCs) and mental health conditions, who often have more than one condition.

The Coalition is further calling for action to be taken to better meet the needs of people with NDCs and mental health conditions and prevent the poor outcomes and preventable deaths of the 6.6 million people living with NDCs as identified in the NHS Long Term Plan, helping them to live longer, healthier, and happier lives.

A survey carried out by the coalition highlighted that: 

• The majority of people (58%) diagnosed said it was not easy to get a first diagnosis
• Difficulties Reported in Diagnosis (in both diagnosed and undiagnosed), included: long waiting times to see a specialist, being told children were too young to be considered, constant referrals to different healthcare or educational providers.
• Difficulties Reported in Diagnosis (in undiagnosed): 58% of people surveyed had tried to get a diagnosis but experienced many of the same issues as above, as well as experiencing dismissive attitudes, not knowing where to go for help, and feeling lost in the system. Nearly 8 out of 10 (77%) were not made aware of other possible diagnoses which might affect them, despite the evidence that shows strong associations between some NDCs.
• Nearly half (46%) of individuals were not offered information or support to help them understand how the condition could affect their life on diagnosis.
• 43% felt they could not access health services and 40% felt their additional support needs were not met to help them access health services.
• Nearly half (46%) of the 38% of survey participants that reported they were in contact with the social care system said their needs are generally not well supported by the social care system, with 58% feeling they were not well understood.
• Nearly half (46%) of the 25% of survey participants that reported they were in contact with the welfare system said their needs are generally not well supported by the welfare system, with 63% feeling they were not well understood.
• Almost a third (27%) of respondents in education said the education system is not supporting them well.

These key findings will sound very familiar to some of our TS community, and as an organisation we intend to make real differences to people's experience of diagnosis and support, and see that joining forces with other NDC and mental health charities is a powerful approach to affecting change at policy level.

For further information about the Embracing Complexity Coalition, and to download the full report please visit www.embracingcomplexity.org.uk 

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