Critical ‘Call to Action’ as new survey highlights seven out of ten people living with neurodevelopmental and mental health conditions have multiple conditions and a new ‘joined-up’ approach is needed

Back in March 2018 a group of charity heads, which included the Foundation’s chair Dr Corcoran, met together for the first time to discuss the issues facing a significant proportion of their communities.  Many of the people we represent and support found themselves affected by more than one neurodevelopmental condition and encountering unique and challenging situations in healthcare, social care, research and employment.  From that first meeting the beginnings of the Embracing Complexity Coalition was begun.

This week the Embracing Complexity Coalition officially launched at an event at the Houses of Parliament hosted by Dame Cheryl Gillan, MP, Chair of the APPG on Autism, Rt. Hon. Matt Hancock, Secretary of State for Health & Social Care and the Chair of the Embracing Complexity Coalition, Mr Jon Spiers, Chief Executive of Autistica.

Matt Hancock at Embracing Complexity Launch joined by Jon Spiers (Austistica) and Diane Wass.

 

  • 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
  • Pledge support for the call to ‘Embrace Complexity’ and drive change for people living with NDCs by visiting embracingcomplexity.org.uk and posting your own commitment online.

Secretary of State for Health and Social Care, Rt Hon. Matt Hancock opened the speeches by championing the huge value and diversity of thinking people with NDCs bring to society, the importance of tackling inequalities, and the critical importance of spearheading a new approach to supporting people with NDCs and mental health, as outlined in the NHS Long Term Plan.

Health Secretary Matt Hancock said, “Dyslexia is a distinction, not a drawback. I know first-hand the challenges it brings, but I know that with the right support dyslexia brings benefits too.

“I strongly believe that everyone has a valuable contribution to make to society, and I am absolutely determined to improve services for neurodiverse people to help each and everyone reach their full potential.”

“Through our Long Term Plan, backed by an extra £33.9 billion a year by 2024, we are transforming NHS services to tackle inequalities and provide high quality, safe and compassionate care.”

Neurodevelopmental conditions affect up to 10% of the population and include a wide range of conditions, from autism and attention deficit hyperactivity disorder through to epilepsy, OCD, dyspraxia, dyslexia, and many others. A report by the newly formed coalition, ‘Embracing Complexity: Towards New Approaches for Supporting People with Neurodevelopmental Conditions’ was also launched, including results from a survey distributed through 25 charities that specialise in neurodevelopmental and mental health conditions.

The survey showed seven out of ten people (67%) with neurodevelopmental conditions either had or believed they had more than one such condition. Furthermore, nine out of ten people living with NDCs asked for joint research into overlapping neurodevelopmental conditions, joint campaigning for better screening & diagnosis and joint campaigning for ‘joined-up services’. The survey also highlighted that over half of the people surveyed said they ‘do not feel accepted by society’ and ‘do not know where to go for help’.

‘Embracing Complexity Survey’-Key Findings

  • 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.

 

Jon Spiers, Chair of the Embracing Complexity Coalition and Chief Executive of Autistica, emphasised the need for a joined-up approach to work together more effectively and seek opportunities to accelerate impact:

“There is growing recognition that neurodevelopmental conditions, which have historically been approached through a single lens, often share symptoms. This finding was reinforced in the new Embracing Complexity Survey with over 500 people living with neurodevelopmental and mental health conditions. Most people affected have more than one neurodevelopmental condition and often many. Even when symptoms differ, there is a shared experience of challenges accessing services and the need for better support. There is no doubt joining up services is complex and will require new approaches, but people living with these challenges have to face complexity throughout their lives. We need to ensure diagnostic pathways take into account that people often have multiple conditions, ensure diagnosis waiting times are time limited and that services in every aspect of life take greater account of people with NDCs through better training, reasonable adjustments and proactive support. Greater investment in research to understand more about the lived experience of people with NDCs and how to deliver services that better meet their needs is critically needed.”

The Embracing Complexity Survey also highlighted the current substantial gaps and focus needed across the health, social care, and education services to tackle inequalities and enable people to reach their full potential.

Dr Corcoran of the Down’s Syndrome Research Foundation said  “there is a great need to highlight the issue of diagnostic overshadowing and the impact it has in the proper diagnosis, education and welfare of people with neurodevelopmental conditions.  In the Down’s syndrome community alone we frequently hear of medical and mental health conditions being ignored and misattributed to Down’s syndrome for months and even years.  A multi-faceted and concerted effort must bring this to an end.”

Colette Lloyd (DS Oxford), Jon Spiers (Austistica), Nicola Enoch (Positive About Down’s Syndrome) and Dr Liz Corcoran (DSRF UK).

In keeping with the ethos of the report recommendations to drive a much-needed person-centred joined-up approach, the meeting highlighted the real need to deliver better outcomes for people with neurodevelopmental conditions and share work they are doing to achieve this. This is wholly in line with the NHS Long Term Plan, which commits to a wide range of actions to address the unmet needs of people living with NDCs and mental health conditions, and are supported by the Coalition, such as:

  • Action will be taken to tackle the causes of morbidity and preventable deaths in people with a learning disability and autistic people
  • The whole NHS will improve its understanding of the needs of people with learning disabilities and autism, and work together to improve their health and wellbeing
  • Over the next three years, autism diagnosis will be included alongside work with children and young people’s mental health services to test and implement the most effective ways to reduce waiting times for specialist services
  • Local providers will be able to take control of budgets to reduce avoidable admissions, enable shorter lengths of stay and end out of area placements. Where possible, people with a learning disability, autism or both will be enabled to have a personal health budget (PHBs)
  • Increased investment in intensive, crisis and forensic community support will also enable more people to receive personalised care in the community, closer to home, and reduce preventable admissions to inpatient services
  • Focus on improving the quality of inpatient care across the NHS and independent sector
  • A commitment that funding for children and young people’s mental health services will grow faster than both overall NHS funding and total mental health spending, and a commitment to grow investment in adult mental health services faster than the NHS budget overall for each of the next five years
  • Mental health support for children and young people will be embedded in schools and colleges

The event will close echoing the report’s ‘Call to Action’ – “It is critical we – government, civil servants, charities, research funders, public services and society – work together effectively and seek opportunities to accelerate a future where people with neurodevelopmental conditions and their families enjoy the same opportunities and experiences as the rest of society”.

What you can do to help

You can download the ‘Embracing Complexity: Towards New Approaches for Supporting People with Neurodevelopmental Conditions’ report on www.embracingcomplexity.org.uk .  Make your own commitment by downloading the ‘Embrace Complexity’ board and posting a selfie on your preferred social media with your personal commitment. Please tweet to #EmbraceComplexity

*Who are the ‘Embracing Complexity Coalition’ Steering Committee?

The ‘Embracing Complexity Coalition’ is formed of leading neurodevelopmental and mental health 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.