“Those who must not be forgotten”: Why the Mental Health Act needs to be reformed.

On Tuesday 7 November 2023, The Government’s promise of a Bill to reform the Mental Health Act was dropped from the King’s Speech. The next day, a four-year long enquiry led by Baroness Hollins was published, condemning the government’s failure to end the “inhumane treatment” of autistic people and people with learning disabilities.

Now, The Independent has highlighted Nicholas’ story. A 28-year-old autistic man, who for more than 10 years was trapped in dementia care units and A&E wards, abused by nurses and held in padded rooms.

Ella Pitt, Campaigns Manager at the National Autistic Society, has written an opinion piece in response to these events:

Those who must not be forgotten

It is Nicholas, and the thousands of autistic people who have been abused and permanently damaged by the failings of our mental health system, who have been most let down by the Government dropping the Mental Health Bill, which failed to be included in Tuesday’s King Speech. Despite enormous consensus behind the desperate need for reform, the 2,045 autistic people and people with a learning disability currently in mental health hospitals have been ignored. 

This is a crushing disappointment. The Mental Health Bill wasn’t a complete solution to the issue of autistic people being locked up in mental health hospitals, but it did represent a big step forward on an urgent issue that we’ve been campaigning about for over a decade. We consistently hear tragic stories of the human rights violations that occur to autistic people being inappropriately detained in hospitals.

It’s hard to see what could be more worthy of Parliamentary time than addressing that autistic people are being inappropriately detained and abused in mental health hospitals, often for years on end. The average length of stay for an autistic person or person with a learning disability in a mental health hospital is five and a half years. Five and a half years of being sensory overwhelmed, miles away from familiarity in inappropriate settings, that provide no therapeutic benefit. Shelving this major piece of legislation makes it clear that the Government do not see the continued abuse of autistic people in these settings as a priority.  

Only the day after the King’s Speech, Baroness Hollins wrote to the Health Secretary Steve Barclay about Independent Care (Education) and Treatment Reviews and highlights the harrowing circumstances that lead to the detention of autistic people and the almost total absence of the right kind of support in the community. It is completely unacceptable that today’s unsupported autistic child at school can so easily become tomorrow’s autistic person in crisis, condemned to solitary confinement within a mental health hospital. The Government knew the evidence, before this letter, and before the King’s Speech but has failed to act. Nearly 20,000 campaigners from the National Autistic Society and Mencap wrote to the Prime Minister just two weeks ago and they have been ignored.

Baroness Hollins’ letter also references the perpetual cycle of one autistic person being discharged from an overly restrictive setting only to be replaced by another. This pattern of continuous human rights violations will continue without the promised legislative reform that has now been abandoned. This cycle is all too familiar for those aware of the complete lack of progress we’ve seen on this issue over the last decade or more. How many more times must we hear about these human rights scandals and tragedies in documentaries and articles before this urgent issue is finally given the Parliamentary time it so desperately deserves? The Government needs to answer Nicholas, who has been in and out of hospitals for 10 years, “Why can’t I have a life? My only crime is being born with autism and a learning disability” .

We won’t let this issue be forgotten.

Reference “Those who must not be forgotten”: Why the Mental Health Act needs to be reformed. (autism.org.uk)

ADHD medication recalled due to labelling mishap

A drug manufacturer is voluntarily recalling one of its medications – Zenzedi – that treats ADHD and narcolepsy due to mislabelled packaging amid a year-and-a-half-long stimulant shortage.

The recall notice, posted on 24 January, stated that Azurity Pharmaceuticals is recalling its 30mg tablets of Zenzedi after a pharmacist in Nebraska discovered that a bottle labelled as containing Zenzedi actually contained an antihistamine called carbinoxamine maleate.

The FDA noted that ADHD or narcolepsy patients who were prescribed Zenzedi and accidentally took the antihistamine “will experience undertreatment of their symptoms”.

While Zenzedi is a stimulant, carbinoxamine maleate could cause drowsiness, sleepiness, central nervous system depression, increased eye pressure, enlarged prostate urinary obstruction, and thyroid disorder, the FDA warned.

The agency said that the 30mg tablets of Zenzedi look like light yellow hexagonal tablets marked with “30” on one side and “MIA” on the other.

The Nebraska pharmacist described the carbinoxamine maleate tablets as white round tablets with imprints of “GL” on one side and “211” on the other side.

The FDA warned consumers who have the recalled medication to stop using it and return the medication to where they obtained it.

Azurity sent recall notification letters to wholesale distributors on 4 January, the agency said, and “arranged for the return of all recalled products at that wholesaler level”.

The recall comes as a stimulant shortage has persisted since October 2022. The shortage has sparked a crisis across the US, affecting millions of adults and children.

Ever since the FDA announced that there was a scarcity of Adderall in October 2022, a domino effect of shortages has ensued. People were forced to switch from Adderall to other medications, leading to shortages in Vyvanse in July 2023 followed by a methylphenidate (Concerta and Ritalin) shortage days later.

Reference: ADHD medication recalled due to labelling mishap | The Independent

ADHD has become an identity, not just a disorder. We need a new way to talk about it | Attention deficit hyperactivity disorder | The Guardian

For many, an attention deficit hyperactivity disorder diagnosis is the thing it took to forgive ourselves and finally start healing

Matilda Boseley

We desperately need to find a new way to talk about attention deficit hyperactivity disorder.

In the past couple of years, we have entered a new age of ADHD awareness. The stereotypical image of a ratbag, hyperactive little boy is falling away and slowly medical professionals, policymakers and regular people are coming to view the diagnosis as a serious, often lifelong and life-altering condition, affecting a huge number of people. Part of this process has been retroactively uncovering the scores of people who slipped under the treatment radar as children.

But, as more and more adults connect the dots and get diagnosed, the way we discuss the condition is changing.

We’ve started viewing ourselves as ADHD-people, not people with ADHD

Rather than being an omen of difficulties to come, for many of us it’s amazing news. A validation that, yes, things actually were as hard as they felt, and no it wasn’t just a personal failing. A diagnosis is the thing that allowed us to forgive ourselves and finally start healing.

We are forming a robust, self-determining community for the first time. And while, of course, we talk about the struggles that come along with the condition, we’re also discussing the neutral and even the positive parts of ADHD too. Like, for example, how a big, broad attentional style can foster amazing ideas, or, conversely, the treasures buried deep within a hyperfocus rabbit hole.

We’ve started viewing ourselves as ADHD-people, not people with ADHD, and we’re learning to view our brain differences as intrinsic to who we are.

ADHD must reduce your quality of life – otherwise, from a legal and medical perspective, you don’t have it

People are now asking the question: what if, as a culture, we started thinking about ADHD more as a category of mind, rather than just “a problem”?

Imagine what society would look like if our educational institutions, workplaces and social systems were flexible enough to adapt to people whose brains work differently, rather than expecting individuals to do all the contortion.

To be clear: better access to treatment, workplace and educational affordances, and government support are still absolutely vital. We aren’t saying it’s incorrect to call ADHD a “disorder”, just that it might be a touch too narrow.

The problem is “ADHD the medical condition” must reduce your quality of life – otherwise, from a legal and medical perspective, you don’t have it. But something about that feels so unfair; that this core part of who we are and how move through the world can only ever be defined by the impairment it causes us.

So, how do we resolve this ever growing tension between disorder and identity?

Well, perhaps the root of the issue is how much pressure we are putting on a diagnostic term. Our current definition of ADHD was only ever intended to help determine who would benefit from legal access to highly regulated medications, and additional support services.

In recent years I’ve spent a lot of time trying to explain the ways my brain works differently to the neurotypical people in my life. With practice, I’ve come up with a pretty decent metaphor. It’s the difference between walking and sailing.

Maybe we need to add another, less medical, word to the conversation

For neurotypicals (those without a neurodevelopmental condition), getting things done is like walking on land. You’re taught how to do it basically from birth, and most of the time you can head in a fairly straight line. Sure, there are hills and obstacles to avoid, but you can usually see them coming, and for the most part your speed depends on how much energy you have. It’s not always easy to start running, but it’s usually within your control.

But – at least for me – getting stuff done is much closer to trying to sail a little boat through the sea. If you’ve never been taught to sail, you’re really at the mercy of the winds and the waves. Sometimes they propel you forward at breakneck speed, sometimes the water is so choppy you’re just trying to stay onboard. Perhaps you never learned your boat has a sail, so you’ve been rowing against the waves for years and years, instead of unfurling it.

However, once you learn how to navigate, you can work with the ocean. You can ease your way out of the storms, and find currents to whisk you where you need to go. Sometimes the journey will still be slow and rough, but with the right training and the right gust of wind, you might even find yourself reaching the destination faster than those travelling on foot.

From what I’ve seen of the world, there are plenty of people who have “ocean brains” like I do, whether they meet the criteria for a formal ADHD diagnosis or not.

Having a cultural word for how I think would help me grapple with the interwoven web of my identity and my disorder

So maybe we need to add another, less medical, word to the conversation.

I think education systems could really benefit from talking to children about what kind of internal terrain they are navigating, and adjusting teaching methods to match. It would probably help grown-ups to have some kind of non-stigmatised, non-medicalised language to describe their patterns of productivity too.

The only problem is “ocean brain” sounds a little woo woo to my grown-up ears. Luckily English already has a more sophisticated word we could adopt: “pelagic”, meaning “relating to the open sea”.

Imagine if people with all different varieties and levels of symptoms identified as pelagic, and came together as a community around the shared experiences this kind of brain brings. Then, alongside it, we could continue to use the legal/medical term for those of us experiencing the quality-of-life-reducing disorder commonly associated with pelagism: ADHD.

(Which, by the way, means those of us with the disorder can start saying: “Oh I’m seasick today.” And I think that’s pretty darn cute.)

I don’t know if adding another label will suit everyone’s needs, but having a cultural word for how I think would really help me grapple with the interwoven web of my identity and my disorder.

In a world where we have these two separate words, then yes, I want to cure my ADHD. But that doesn’t mean I don’t want to be pelagic.

I love the ocean that is my brain. I know a lot of other people who love their ocean brains too. We just want help learning to sail, and maybe some seasickness tablets to ease the way.

• This is an edited extract from The Year I Met My Brain: A travel companion for adults who have just found out they have ADHD, by Matilda Boseley. Out 3 October from Penguin

Reference: ADHD has become an identity, not just a disorder. We need a new way to talk about it | Attention deficit hyperactivity disorder | The Guardian

Navigating Mental Health and ADHD Challenges in Universities

In recent years, mental health concerns among university students have become a pressing issue that institutions must address. Coupled with this is the growing recognition of Attention-Deficit/Hyperactivity Disorder (ADHD) as a common neurodevelopmental disorder that can significantly impact academic success. As students juggle academic, social, and personal pressures, universities must foster environments that not only support their academic pursuits but also prioritize their mental well-being and provide tailored assistance for those with ADHD.

The Mental Health Landscape in Universities

Universities are often a microcosm of stress and high expectations, which can exacerbate mental health issues among students. Factors such as academic demands, social isolation, financial pressures, and the transition to adulthood can contribute to anxiety, depression, and other mental health challenges. According to the American College Health Association, 63% of college students felt overwhelming anxiety in the past year, and 40% felt so depressed it was difficult to function.

Moreover, the COVID-19 pandemic has introduced a new layer of complexity, disrupting routines and amplifying feelings of uncertainty and isolation. The transition to online learning and the lack of in-person interactions have magnified mental health struggles, making it even more critical for universities to proactively address these concerns.

Understanding ADHD in the University Context

ADHD is a neurodevelopmental disorder characterized by difficulties with attention, hyperactivity, and impulsivity. Individuals with ADHD may find it challenging to focus, complete tasks, and manage their time effectively. This can lead to academic setbacks, strained relationships, and feelings of frustration and low self-esteem. While ADHD is often diagnosed in childhood, its impact can persist into adulthood and become particularly pronounced in the university setting.

In a university environment, students with ADHD may struggle to organize their schedules, adhere to deadlines, and maintain concentration during lectures and study sessions. These difficulties can impede their ability to excel academically and fully engage in their educational journey.

Addressing Mental Health Challenges

Universities have a responsibility to create a supportive atmosphere that prioritizes students’ mental well-being. Here are some strategies to address mental health challenges on campus:

1. Accessible Counseling Services: Universities should offer accessible and stigma-free counseling services where students can seek guidance and support for their mental health concerns. These services should be well-publicized and equipped to provide individual and group therapy.
2. Mental Health Awareness Programs: Educational initiatives that promote mental health awareness can help reduce the stigma surrounding seeking help. Workshops, seminars, and events that discuss coping strategies and stress management techniques can empower students to take control of their mental health.
3. Peer Support Networks: Peer-led support groups and mentorship programs can create a sense of belonging and community among students. Peer mentors who are trained to recognize signs of distress can provide early intervention and connect struggling students to appropriate resources.
4. Online Resources: Universities can develop online platforms with resources such as self-help articles, videos, and relaxation exercises. These resources can serve as a readily available toolset for students to manage their mental health.

Supporting Students with ADHD

To effectively support students with ADHD, universities should implement strategies tailored to their unique needs:

1. Academic Accommodations: Students with ADHD may benefit from extended test-taking time, note-taking assistance, and preferential seating in classrooms. Providing these accommodations can level the playing field and enhance their academic performance.
2. Time Management Workshops: Workshops on time management and study strategies can equip students with ADHD with practical skills to navigate their coursework effectively. These strategies can help them break tasks into manageable chunks and establish routines.
3. Structured Support Plans: Collaborating with students to create personalized support plans can ensure they receive the necessary assistance. Regular check-ins with academic advisors and counselors can help track progress and make necessary adjustments.
4. Utilizing Technology: Leveraging technology tools like calendar apps, task managers, and noise-canceling headphones can aid students with ADHD in staying organized and minimizing distractions.

Conclusion

Universities have a pivotal role to play in promoting mental health awareness and providing tailored support for students with ADHD. By prioritizing the well-being of their student body, institutions can create an environment where students feel empowered to seek help, manage their mental health, and succeed academically. Through a combination of accessible resources, awareness programs, and individualized assistance, universities can pave the way for a brighter and more inclusive future for all students, regardless of their mental health challenges or neurodivergent conditions.

Unlocking Creativity: Navigating ADHD in Pursuit of Productivity

In the bustling realm of human cognition, the interplay between neurodiversity and creativity has long captured the curiosity of researchers, psychologists, and artists alike. Among the multifaceted landscapes of neurodivergence, Attention-Deficit/Hyperactivity Disorder (ADHD) emerges as an intriguing enigma. While ADHD can present unique challenges, it also holds the potential to cultivate unparalleled creativity. In this article, we delve into the relationship between ADHD and creativity, and explore how to design an optimal work environment to harness its potential.

The ADHD-Creativity Nexus

ADHD is characterized by difficulties in sustaining attention, impulsivity, and hyperactivity. While these traits can lead to challenges in traditional work settings, they also foster a unique cognitive profile ripe for creative exploration. The divergent thinking often associated with ADHD, characterized by a penchant for generating a multitude of ideas, can be a wellspring of creativity. The ability to rapidly switch between thoughts and associations can lead to unconventional connections and novel perspectives that fuel the creative process.

Research suggests that individuals with ADHD often exhibit enhanced performance in tasks requiring creativity and innovation. This stems from their tendency to think outside the box and approach problems from diverse angles. Their intrinsic ability to embrace ambiguity and blur the lines between seemingly unrelated concepts enables them to forge innovative pathways that evade those without such cognitive diversity.

Cultivating the Optimal Work Environment

Capitalizing on the inherent creativity within ADHD individuals necessitates crafting a work environment that both accommodates their unique needs and harnesses their cognitive strengths. Here are some strategies to consider:

1. Embrace Flexibility: Traditional 9-to-5 schedules might not be the best fit for individuals with ADHD. Allowing flexible work hours or remote work options can enable them to optimize their productivity during periods of peak focus, rather than adhering to rigid schedules.
2. Create Structured Spaces: Although ADHD brains thrive on creative chaos, providing structured spaces can help channel their creativity effectively. Designating specific workspaces for focused tasks and creative brainstorming can aid in keeping distractions at bay while encouraging innovative thought.
3. Task Chunking: Break down larger projects into smaller, manageable tasks. ADHD individuals often find it easier to focus on shorter tasks rather than grappling with the enormity of an entire project. This approach not only enhances productivity but also capitalizes on their penchant for shifting between tasks.
4. Incorporate Movement: Recognize the value of kinetic energy for ADHD individuals. Incorporating elements like standing desks, fidget tools, or periodic breaks for physical movement can prevent restlessness and maintain engagement.
5. Visual Aids and Timers: Visual cues and timers can be powerful tools to help individuals stay on track. They provide a tangible sense of time passing and create a sense of urgency, which can boost focus and efficiency.
6. Mindful Distraction Management: While minimizing distractions is essential, occasional bouts of controlled distraction can actually enhance creativity for ADHD individuals. A dedicated “creative break” where they are free to explore unrelated ideas can lead to unexpected insights.
7. Goal Setting and Rewards: Setting clear goals and establishing rewards for accomplishing tasks can create a structured framework that fuels motivation. The dopamine-driven reward system can be especially potent for individuals with ADHD.
8. Digital Tools: Leverage the power of technology. Task management apps, digital calendars, and reminder tools can serve as external aids for memory and organization.
9. Noise Control: Noise sensitivity is common in ADHD individuals. Providing noise-cancelling headphones or creating a quiet, designated workspace can help mitigate auditory distractions.
10. Encourage Self-Expression: Embrace diversity in work styles. Encourage ADHD individuals to find their own methods of organization, note-taking, and idea generation that resonate with their cognitive processes.

The ADHD Advantage in Creative Endeavors

The link between ADHD and creativity is undeniable, offering a fresh perspective on the condition. While it’s essential to acknowledge the challenges that can arise from the traits associated with ADHD, fostering a culture that embraces neurodiversity can unlock a wealth of innovation and ingenuity. By crafting work environments that support the unique cognitive makeup of individuals with ADHD, we can tap into their unparalleled creative potential and contribute to a more inclusive and innovative world.