Children with ADHD frequently use healthcare services before diagnosis, study finds

Children with ADHD frequently use healthcare services before diagnosis, study finds

Children with ADHD frequently use healthcare services before diagnosis, study finds

Children and young people with attention deficit hyperactivity disorder (ADHD) use healthcare services twice as often in the two years before their diagnosis, a study by researchers at the University of Nottingham and King’s College London has found.

The research, published today in the journal Archives of Disease in Childhood shows that children with the neurodevelopmental disorder are twice as likely to see their GP, go to hospital for an admission, and even have operations, compared to children without ADHD.

The researchers say the results support the need for healthcare professionals to consider a potential diagnosis of ADHD in children who use their services frequently. This is especially important in cases where the primary reason for attendance is not a mental or behavioural symptom, where ADHD may already be suspected. Children with ADHD use healthcare services for a wide range of common medical symptoms, such as tonsillitis, asthma, or eczema.

The research was carried out by Dr Vibhore Prasad and other researchers working at the University of Nottingham and King’s, funded by the Academy of Medical Sciences.

We know that children with ADHD often face long delays in diagnosis. We didn’t know, until now, that they seek help from the healthcare services twice as often as children without ADHD in the run up to diagnosis. Our findings demonstrate the need for further research so we can identify children with ADHD earlier to get them effective help. The results are significant because we know that identifying ADHD earlier can lead to effective treatment, including talking treatments and medicines, which can prevent a range of serious harms to young people and future adults.

Dr Vibhore Prasad

NIHR East Midlands Scholar, associated with the University of Nottingham, a visiting Lecturer at King's and a GP in Nottinghamshire

The study looked at medical records of children and young people aged between four and 17 years old from the Clinical Practice Research Datalink, a primary care database containing the records of around 15 million people from 730 GP practices and representing seven per cent of the population of the UK. The findings were based on around half of the patients from England who also had linked hospital medical records.

The research focused on the reasons why children see their GP, receive prescriptions from the GP, attend hospital for overnight admissions and have operations in hospital. It showed that children with ADHD make twice as much use of all these services in the two years before diagnosis compared to children without ADHD.

Dr Prasad’s study provides a powerful reminder of both the physical and mental health difficulties that young people have to confront in the years leading up to an ADHD diagnosis. At this point, we cannot be certain that earlier access to ADHD assessment and treatment would alleviate all these difficulties. However, Dr Prasad’s work does highlight that young people who have suspected ADHD are already a vulnerable group and may benefit from coordinated multi-disciplinary care that can provide holistic support whilst they are waiting for specialist mental health services.

Professor Edmund Sonuga-Barke and Dr Johnny Downs

King's IoPPN

Children and young people with ADHD regularly see healthcare professionals but guidance from organisations such as the National Institute for Health and Care Excellence (NICE) and the American Academy of Pediatrics does not currently detail how to detect ADHD earlier. Many parents or carers report needing to know about ADHD in order for the professionals to consider this as a diagnosis.

The researchers say this study shows that more should be done to develop and test interventions to identify ADHD earlier in primary care. There is also a need to urgently review how the health services cater for young people with undiagnosed ADHD.

Dr Vibhore visited the Lambeth ADHD Support Group on several occasions in the process of his research, and has diligently captured the voices of the parents and carers of young people with ADHD. This attention to detail and genuine interest in the welfare of families, has provided valuable insights into how families navigate the healthcare system and engage with their GP prior to an ADHD diagnosis. The identification of patterns of GP interaction for families with a child with ADHD offers valuable insights for both families themselves and professionals.

Michele Reilly

Lead of Lambeth ADHD Support Group

This is ground-breaking research that demonstrates to the Department of Health, NHS UK & local NHS Commissioners, that ADHD should not be trivialised and reduced to core symptoms of hyperactivity, impulsivity and inattention. Undiagnosed untreated ADHD is now proven to result in double the number of health care appointments and procedures children using the NHS for other avoidable health problems and accidents.

Dr Tony Lloyd

CEO, ADHD Foundation Neurodiversity Charity

The full study can be found here.

For more information, please contact Emily Webb (School Communications Manager – School of Academic Psychiatry

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Change the Story: Nina’s Story

Change the Story: Nina’s Story

Change the Story: Nina’s Chapter

Our CAMHS inpatient ward – The Maudsley Adolescent Unit (MAU) is an open unit offering mental health care for young people with serious mental illness such as psychosis or problems relating to their mood and require hospital admission. We have developed a national and international reputation for innovation and pioneered the introduction of a comprehensive, all-hours emergency admission service.

Within this unit, individuals such Nina, are the driving force behind our efforts to support and nurture the mental health of the next generation. Their commitment forms the very core of our Partnership. In this spotlight, Nina tells her story on how her team went above and beyond to support a young person to attend college from an inpatient CAMHS ward.

Nina

Nina

Ward Manager, CAMHS PICU

Young people admitted to inpatient CAMHS wards usually attend the on-site hospital school. The school is independent of the hospital and is run by Southwark council and staffed by an incredible group of teachers and support staff. They work with young people at various ability levels and support young people who are just starting secondary education, right up to young people who sit GCSE and A-Level exams whilst in hospital. However, fantastic as the school is, sometimes they aren’t able to provide the exact course a young person wants to do. Previously in these instances we may have encouraged a young person to look at alternative courses; ones which the hospital school could support them with. Or suggest doing different courses for a year and applying to the one they really wanted next year. However, over the summer we spoke with one particular young person on the ward and realised that this approach didn’t really work for them and wouldn’t be supporting them to achieve what they could.

This young person had been an inpatient with us for a number of months. Due to this she sat her GCSE exams at the hospital school at the Maudsley. During this period, she was also able to meet with a careers advisor at school to begin thinking about what she wanted to do post-16, as well as more long term. As a nursing and education team, we also began thinking about how we could support her with achieving her goals. She told us that her ultimate goal was to train as a nurse and work in healthcare; so, we started looking at what she would need to do to start on that path. After lots of conversations she decided that a college course in health and social care would be the best next step.

During evenings and weekends (when not revising for her GCSEs!) she began looking up different colleges and the courses they offered. Staff on the ward gave her advice on her applications and her parents were able to take her to some open days to meet with college staff. After a lot of work she found a college in South London that felt like the best fit for her and applied. Then following her fantastic GCSE results she officially enrolled in August!

Despite all the incredible work she had done towards getting her college place, the young person wasn’t able to be discharged before it started; and so, we began thinking about how best to support her to attend. Everyone was agreed that we wanted her to start college and that doing a course she was passionate about was so important. We were also conscious of not making too many big changes at the same time, so we all agreed that starting to attend college from the ward first made the most sense. We were really keen (as was she!) to make this as ‘normal’ as possible whilst ensuring she had all the support she needed.

We suggested doing some practice journeys between the ward and her college before her first day. Ray, an activity support worker on the ward, met with her to look up the route on public transport and plan the journey. The two of them the caught the bus there together to get familiar with the journey and where to go once she was at the college campus. Since then, she’s been attending all of her classes at college, and has begun making her own way there and back each day.

It was a tricky journey to get there at times, and the easiest solution all those months ago would have been to say the young person needed to be discharged before going to college full time. However, we all knew this wasn’t the best solution for her at the time; and we wanted to make sure we were thinking of what was important to her and doing whatever we could to support her in safely achieving those goals.

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Change the Story: Lauren’s Chapter

Change the Story: Lauren’s Chapter

Change the Story: Lauren’s Chapter

In the tapestry of any organisation, there are threads woven with extraordinary dedication and tireless effort. These threads belong to individuals who go above and beyond, turning ordinary tasks into extraordinary achievements. Their commitment, often behind-the-scenes, is the bedrock upon which success is built.

In this spotlight, we shine a well-deserved light on those who exemplify the spirit of hard work and dedication. These individuals are the driving force, the unsung heroes, and the heartbeat of our organisation and our shared vision to transform mental health for young people.

Their stories inspire us all to reach for greater heights, reminding us that with perseverance and determination, remarkable accomplishments are within our grasp.

Lauren

Lauren

Nurse, CAMHS PICU

Within inpatients CAMHS services we do out upmost to support the human rights and well-being of our service users while also maintaining safety. This can take many forms from supporting someone to bake a cake to gradually building up periods of leave back to their family home.

 One of our service users was struggling to find meaningful goals to work towards to help motivate them to remain safe while on the ward. As they had been in hospital for a considerable period there was a feeling that they felt hopeless in the idea that any meaningful progression could be made.

Across the ward multidisciplinary team (community teams’ input, family and social care), we wanted to do something to uplift their mood and positivity. A goal was set for the service user to be supported to attend their first ever concert. Due to the young person’s love and passion for music this felt like a meaningful activity for them as well as being something that was age appropriate and a ‘normal’ yet exciting milestone of adolescence. I’m sure most people can still remember their first gig, concert or festival as a teenager.

Within the team a week-by-week plan roughly spanning eight weeks was put in place to attempt to support the young person to achieve their overall goal. This was then reviewed each week and decided if the young person as ready to progress onto the next stage and if not, what things could be put in place to support each stage to be completed to help facilitate the overall aim. As the young person progressed further through the stages other challenges did arise such as who was going to take them? How would we transport them? and logistics around what time would they take their prescribed medication etc. This took a lot of coordination within the team and with the family, but each hurdle was overcome, and the day of the concert arrived.

This was a particularly unique experience as although within other services day trips are slightly more commonplace within a PICU setting they are often far from the norm. However, it was felt that for this young person this would be an important step in helping reintegrate them back into the community and so the team all worked together to ensure it took place. Being part of the team that accompanied them to this concert was a special experience as the young person could not quite believe they had managed to keep themselves safe enough for the trip to take place as well as having all the same excitement any person would have of seeing one of their favourite artists perform.

A new outfit from Primark, make-up applied, and McDonald’s consumed en-route made it feel all the more like an adolescent night out. Seeing anyone enjoy a new experience for the first time is exciting but when you have been part of the challenging journey with a young person of them keeping themselves safe enough to achieve their goals, it is a special experience.

Although one also full of anxiety as you imagine all the possible dangers and things that can go wrong. (We had tried to mitigate and plan for some of these by making sure the young person was aware we could leave if it all felt overwhelming) That aside when it all goes to plan to take a positive risk and seeing the joy it can bring to an individual is without a doubt the best part of the job.  

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‘Onwards and Upwards Parenting workshops’

‘Onwards and Upwards Parenting workshops’

‘Onwards and Upwards Parenting workshops’

Our Helping Families Team provides a comprehensive and supportive service for parents facing complex mental health issues as well as other stresses that my include poor housing, financial instability and chronic ill health. Multiple challenges can impact on their ability to look after themselves and their children and prevents them from parenting in the way they would like to. The team supports parents to reconnect with their children, feel more confident as a parent and to navigate the relationships they have with professional networks supporting their family.

Funded by Maudsley Charity’s Change Maker scheme, their latest programme promotes peer-led parenting workshops facilitated after parents have completed the Helping Families Programme and they have been discharged from the service. The events support parents to feel equipped with the necessary tools and support they need to overcome the challenges they face, without the need of another referral to specialist services.

How do the Helping Families Team support parents?

 We work with parents to identify their strengths and empower them so that they can communicate, manage their emotions, and hold the needs of their children in mind in ways which may feel more helpful, containing, and safe.  We have the privilege of witnessing their progress whilst they work with us. In these very difficult times it can be hard for parents to hold hope and continue to attend to their own needs in addition to the needs of their families.  The team explain how this peer- led programme is bringing together parents to create opportunities for social support and connection, and empower parents to create lasting, positive changes in their lives.

 What is the Change Maker Scheme?

 Change Makers exists to enable staff to complete small projects that could have a big impact on the quality of life for patients.  The scheme is a joint initiative between Maudsley Charity and the South London and Maudsley Trust’s Listening into Action (LiA) team. Maudsley Charity invests £100k into the scheme each year and the Listening into Action team will support staff to make applications, deliver the grants, and work with grant recipients to share the impact funding has had.

 The scheme is open exclusively to staff from the South London and Maudsley. Departments can apply of grants between £200 and £2,000 to get small projects off the ground in wards and services to improve access, outcomes or experience of people with mental illness. 

 How did the ‘Onwards and Upwards’ programme start?

 We consulted with parents that have used our service and responded to parents’ requests that they would really value the opportunity to connect with other parents with similar lived experiences and to also revisit specific parts of  the parenting programme that they had found helpful. With our Change Maker award we were able to hire space and provide food and refreshments for the parents in a beautiful historic local community venue which is easily accessible and offers a quiet, calm space. 

 We have facilitated three Onwards and Upwards events and we are planning to hold another in the Autumn. So far, 14 parents have attended, and the group is growing in strength and numbers.

 Has there been any feedback from the parents?

 The parents who attended expressed how important it was that they felt heard and seen during these events.  They valued the opportunity to share their experience of parenting before, during and after their time working with the Helping Families Team and felt able to speak freely and share their stories and experiences in ways which felt helpful and important for them.  Parents often lack confidence to connect with others but all who attended have created connections with each other outside the events.

 We kept events light and balanced. We had laughter along with tears. These events were designed to be empowering and validating for parents, delivered via a safe, nurturing environment where they could speak freely and share experiences and advice with other parents. Many of the parents that we work with are economically disadvantaged, so they really valued being cared for and feeling valued.

What do you hope for future events?

 In the future, we plan to invite their families along to a family-friendly event to celebrate their progress. We hope that the Onwards and Upwards events remind parents of the importance of continuing to prioritise their own needs alongside those of their families.  We know that parents who feel able to do this create very positive outcomes for their families.

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Parent and child experiences of racism affect whole family’s mental health, according to new study

Parent and child experiences of racism affect whole family’s mental health, according to new study

Parent and child experiences of racism affect whole family’s mental health, according to new study

Parents’ experiences of racism affect their children’s mental health and vice versa, according to a new briefing published today, on World Mental Health Day, by Centre for Mental Health and the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London.

a young girl holding a leaf

A constant battle finds that racism has far-reaching impacts on parents, their children, and the relationships between them. Based on IoPPN research with both parents and teenagers from UK racialised communities, the briefing finds that both past and present experiences of racism can affect mental health across generations of a family.

The study provides more evidence that racism has a profound and negative impact on a person’s mental health. One participant described the daily fight against racism as “a constant battle that knocks you”. Parents referred to the “heavy” sadness of seeing their child experience racism at school, and one participant described “always [being] in that high-stress sensitive state because you’re always being triggered”. Another participant referred to the heightened fear for themselves and their family caused by racist threats on social media following England’s loss at Euro 2020.

A constant battle finds that daily experiences of racism also influence parent-child relationships, with parents attempting to limit their children’s exposure to racism and having to answer their children’s questions about racism.

The briefing calls on the Government to commit to tackling all forms of racism through a cross-government strategy. It also says that the Department for Health and Social Care and NHS England should fully resource work with racialised communities to design more racially equitable mental health support.

There are cascading effects in families following experiences of racism – impacting parenting, parent-child relationships, and family mental health. Parents and teenagers shared their first-hand knowledge and experiences through this research. Teenagers described growing up in British society that is biased against them and their parents, which they hope will change. Meanwhile, parents grappled with the reality that racism impacts their children, after generations of battling for change, and that their children must learn to adapt and cope. Our work documents urgent need for action by policymakers, teachers, mental health practitioners and researchers, who can help alleviate the burden on families facing racism.

Dr Yasmin Ahmadzadeh

Postdoctoral Research Associate at King's IoPPN

Kadra Abdinasir, Associate Director of Policy at Centre for Mental Health, said: “We know that racism harms people’s mental health and can have a lasting impact. This research builds on earlier studies demonstrating the trauma racism causes, while also highlighting the shared and distinct experiences of parents and teenagers in the UK. Like other forms of trauma, racial trauma requires a deep understanding and action from a broad range of practitioners and policymakers to better protect and support those affected.”

The research is the culmination of the TRADE Project (Transmission of experiences of Racism, Anxiety and Depression in families), which has been reviewing existing research and talking with parents and adolescents whose communities have historically experienced racism to better understand how experiences of racism can affect mental health, and how these negative experiences can transmit between generations. The TRADE Project is funded by the Economic and Social Research Council (ESRC) Emerging Minds Network, which is supported by UK Research and Innovation (UKRI).

For more information, contact [email protected].

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