UK estimates for people affected by Hoarding Disorder & Chronic Disorganisation

OPEN LETTER TO ALL CCGs, LOCAL AUTHORITIES & GOVERNMENT DEPARTMENTS

Dear Sirs

**Hypothetical UK Statistic Alert**

Ever since I became a Professional Organiser (back in 2011) and started learning about how to help people with hoarding behaviours, books written by hoarding/OCD experts told us that the estimated percentage of the population with Hoarding Disorder was anywhere between about 2% and 6%.

How accurate those figures are now and whether those numbers apply purely to America (which is where most of the original research on hoarding behaviours was carried out, and so where most of the books early books on the subject were written), l I don't know - I don't think anyone knows.

And of course the statistics may have changed since COVID-19, which changed everything - hopefully one day new research will be carried out that tells us.

What we do know is that there are thousands of Professional Organisers around the World offering practical help and support to the countless numbers of people who struggle with Chronic Disorganisation and/or hoarding behaviours.

Meanwhile, even though I'm not known for being a number cruncher, I thought it would be interesting to work how those statistics might apply to the UK.

So, for the purposes of this exercise let's assume that the estimate of 5% shown in the thought-provoking image above (and the one below, both kindly created for Hoarding Awareness Week by Steff Lee, Creative Director of animation studio Kinobino) is about right for the total percentage of people likely to be living with:

• the mental health condition Hoarding Disorder (as defined in the ICD-11 - the 11th edition (version: 05/2021) of the International Classification of Diseases and Related Health Problems (published by the World Health Organisation

and/or

• Chronic Disorganisation - According to the Institute for Challenging Disorganization, a person may be Chronically Disorganised if (for example):

• Disorganisation has been a factor in their life for many years
• Their level of disorganisation interferes with the quality of their daily life, or negatively affect their relationships with others
• Disorganisation has persisted despite self-help attempts to get organised (MANY of our clients own or have at some point owned at least one organising book!)
• They hoard information (saving many articles, newspapers or books they’ve read)
• They suffer from a “fear of filing”, and lose or misplace papers and items despite keeping them out, making it difficult to retrieve them
• They have a compulsive shopping or acquiring problem
• Their desk, floor and/or countertops are covered in papers
• They have a wide range of interests and several uncompleted tasks and projects
• They find it difficult to stay focused, are easily distracted or tend to lose track of time

That means that in the UK:

• Out of 100 people you know, 5 of them could be living with issues related to clutter or disorganisation on a daily basis.
• Out of a current population of about 68 million people in the UK (Source: Office of National Statistics), there could be around 3.4 million people who have hoarding tendencies or find it difficult to create order in their homes or their lives
• Of the 15.5 million people in the UK currently aged over 60* (Source: MHS - the largest charity care provider for older people in the UK), there could potentially be 775,000 people currently struggling with or getting help to (for example):
• manage and maintain nutrition - if they find it difficult to budget or plan ahead, or are self-neglecting and eating out-of-date food, or don't have a working fridge, or can't get into their kitchen because of the obstacles in the way
• maintain personal hygiene - they may not be able to access their bathroom or toilet, or may not have hot water because their boiler doesn't work and they've not had it repaired because they're too embarrassed to allow people into their home
• make use of their home safely - floors may be scattered with obstacles which could potentially cause someone to slip, trip or fall and injure themselves. And there may also be fire risks because of the accumulation of items that they've collected over many years, especially if they're using faulty electrical equipment which could cause a fire.
• maintain an habitable home environment - they may not be able to get into rooms at all because they're so full, and have to sleep on a chair in the hall instead of a comfy bed
• maintain family or other personal relationships - it's sadly very common for people affected by issues related to clutter, disorganisation and hoarding behaviours to be estranged from family members (who have become so frustrated with them and what they perceived was their refusal to declutter), and feel lonely, unloved and unsupported by services who don't understand the extent of their difficulties
• accessing and engaging in work, training, education or volunteering - many of my clients have complex mental and/or physical health problems (usually because they've received inadequate or inappropriate support or treatment for many years) and are unable to work as a result

*Over 60's is the age group at greater risk of needing hospital treatment or having a fire in their homes than other age groups.

Multiply that by the number of people around the Globe, and that's quite a few people!

I could go on....

What don't we know?

What we don't have are the statistics about the impact on families, friends and support networks affected by clutter/disorganisation/hoarding-related issues. For example:

• Children who :
• might have nowhere to do their homework because there are no clear surfaces
• don't have clean school uniforms to wear because there's no washing machine at home, or it doesn't work - or whose clothes smell of damp because there's nowhere for them to dry properly because of all the stuff
• don't have friends round to visit their home or have sleepovers - because they're too embarrassed or there's no room to entertain them, or because their parents don't allow them because they're so worried about people judging them for having such a chaotic, clutter-filled, dysfunctional home
• might have asthma which doesn't get better because of the mould on the walls - much of which may be hidden by obstacles like mountains of clothes, toys, and assorted paraphernalia
• might be skin-picking, self-harming or socially distant because they feel stressed by their living environments and they don't think there's anyone they can talk to about it - or they've been told NOT to talk to anyone about it...
• The people who give up all hope of ever feeling organised or receiving non-judgemental help and support, and take to drugs or alcohol to make them feel better - except often they make their situations worse, and without appropriate help and support they may feel so desperate that they attempt to take their own lives....
• The countless people whose health has been affected by living with partners, parents or children who refuse to let go of possessions, or whose homes have become unsafe because of unwise decisions
• Anyone who is supporting (or attempting to support) those who struggle to manage their affairs
• People who give up full-time employment or take on part-time work so they can sort out Lasting Power of Attorney and become carers for parents or loved-ones with Dementia, and at the same time sort through and gradually get rid of their piles of stuff (losing track of the number of times they filled up recycling bins and took items to the charity shop, recycling centre and shredding company)
• Relatives who inherit properties full of treasures and non-treasures such as furniture; assorted knickknacks; paperwork (possibly dating back over 50 years); books (some that were given to grandparents and great-grandparents); countless packs and albums of photos and 35mm slides; cars; tools; televisions and radios (dating back to the 1950's, or beyond); paintings, easels, paints and other painting/drawing paraphernalia; equipment for flower arranging and cake decorating, which then clutters up their own home until they have time to go through it
• my own personal experience is that we're still sorting out my parent's stuff, 6-years after Dad died (and 4 years after the house was demolished) - and counting....
• Relatives living abroad who have to put their trust in Professional Organisers, Professional Hoarding Practitioners and Solicitors to look after the health and wellbeing of elderly parents/aunts/uncles/grandparents (delete as applicable), and keep them safe

I could go on....

And let's not forget the professionals and trades people whose jobs involve working with people affected by clutter, disorganisation or hoarding behaviours on a DAILY basis, such as:

• The Firefighters who put their lives at risk to extinguish blazes in homes containing too many possessions, and attempt to rescue residents from burning buildings
• The care workers, ambulance crews and Paramedics who climb over piles of newspapers to attend to elderly ladies who: insist that they didn't fall over, they fell; forget to take medication; eat sugary foods every day despite being Diabetic, and resist every effort to leave the home where they've lived all their lives
• The Nurses, Discharge Teams, Occupational Therapists and other hospital personnel tasked with finding somewhere for patients to stay if they're healthy enough to be discharged from a ward, but their homes are too unsafe for them to return to
• The Social Workers who enthusiastically entered the profession with a passion for improving the lives of vulnerable people and were dedicated to making a difference, who now need time off work due to stress from high caseloads and negative work environments, or leave the profession completely after only a few years.
• According to Mithra Samuel writing in Workforce (the website for social workers) on September 4, 2020, four in ten newly qualified social workers (NQSWs) anticipated quitting the profession within the next five years.
• The plumbers, electricians and maintenance people who struggle to get to radiators or boilers, or repair properties that have fallen into disrepair 

I could go on....

What I know from my own personal and professional experiences is that:

• All these scenarios can be life-changing for those involved
• Neither hoarding behaviours nor Chronic Disorganisation are lifestyle choices!

Both hoarding behaviours and Chronic Disorganisation can:

• cause great distress
• make people feel stigmatised and embarrassed
• cost lives
• cause bed-blocking (because a patient's home may be too unsafe or dysfunctional for them to return home to)
• affect families, livelihoods, employment, benefits, and financial stability
• be traumatic and require specialist support and therapy
• lead to self-medicating, whether it be by shopping, drinking or taking drugs
• be signs of self-neglect (in the UK, The Care Act 2014 states that hoarding can indicate an extreme lack of self-care, and therefore could be classified as self-neglect)

In both cases, that person can be extremely vulnerable to abuse, which is how people can end up in abusive relationships or becoming involved with the judicial system - as a perpetrator or a victim, or both.

What causes Chronic Disorganisation or hoarding behaviours?

Both are often mis-diagnosed and mis-treated by medical professionals, who prescribe anti-anxiety/ant-depressant medication without attempting to investigate or address the root causes of their patient's Executive Dysfunction - their ability to (for example):

• plan - eg. where they're going to store things they acquire, or how to pay for them without going into debt
• organise - eg. their homes
• make decisions - eg. what to buy or how many they need (eg. they can't decide which colour t-shirt they should buy, so purchase one in each colour)
• manage their time - eg. when they're going to set aside time to start/finish all the projects they believe they need their craft items for
• manage their emotions - eg. not go into rages at people for telling them they need to have a clear-out (because they might be perfectionists and feel so anxious and pressured about making a decision that they can't do it without empathetic help and support to facilitate their decision-making)

I could go on....

In my experience of working with clients with complex needs, it's easier to assume (unless proven otherwise) that most of them have either Autism or ADHD or both, and/or other neurological conditions - usually undiagnosed.

In the case of engrained hoarding behaviours, there has often been some kind of trauma in the person's life, and they have one or more diagnosed mental illness.

What they rarely have is adequate or appropriate support from medical professionals able to identify that the root cause of their anxiety or distress could be a Neurodiverse condition such as ADHD, Autism, Dyslexia or Dyspraxia; mental health conditions;Acquired Brain Injuries (ABI), and sadly now also Long COVID.

Nor do they have enough assistance or support to manage day-to-day activities, which is how things become more and more chaotic, debts occur, bills don't get paid, etc.

Predicting the future

In a report published by the Office For National Statistics in 2019, they predict that the proportion of the UK population aged 85 years and over will almost double over the next 25 years, and that by 2043 the UK population will have jumped to 72.4 million.

So I did a very basic comparison of what could happen to the total UK population statistics previously mentioned, based on three possible scenarios:

1. No action is taken and the estimated percentage stays the same at 5%
2. No action is taken and the estimated percentage increases to around 7%
3. Action is taken to reduce the risks outlined above, and the estimated percentage of people living with clutter, disorganisation or hoarding in the UK gets reduced from around 5% to 3%

Whilst some may argue that the results include people of all ages rather than adults only, it's important to understand that there is a genetic element to hoarding behaviours and chronic disorganisation which shouldn't be ignored.

Benefits of change

What is clear from the results is that investing in positive action to create policies with more holistic approaches to supporting this group could, for example:

• Reduce the number of older people needing hospital treatment or having a fire in their homes
• Potentially reduce bed-blocking in hospitals
• Increase the number of people who are employed (so pay taxes), feel they have a purpose in life (which should improve their health and wellbeing and reduce the pressure on health and social care)
• Improve public confidence in CCGs, local and national Government

Transformation plan

Reducing the risk of Chronic Disorganisation and hoarding behaviours occurring would require (for example):

• Strong leadership from National Government, with involvement of ALL key stakeholder groups from Day 1 - not just politicians and accountants
• Re-structuring health and social care to be more collaborative and take a more holistic and supportive approach to managing clients/patients
• Empowering people affected by clutter, disorganisation or hoarding issues to access appropriate and timely treatment and PRACTICAL support
• Recruiting, training/re-training and retaining enough specialist clinicians able to diagnose and support people with complex needs
• 
  Training/re-training GPs, medical professionals, social workers, educators, emergency services, solicitors, etc about hoarding behaviours, chronic disorganisation, Executive Dysfunction and the Hoarding Ice-Breaker Form (that I created to empower people to ask for help if their health has been adversely affected by these issues)
• Funding research on these topics and introducing them into the National Curriculum so that all children and eventually adults begin to talk about organisational disorders in the same way they're now encouraged to discuss mental ill-health

Can you see the (£) signs?

Yes, there could be a lot of funding required to make this happen, and yes, it could take a while to achieve a worthwhile Return on Investment (ROI) for this major transformation programme.

If nothing else, I invite you to purely asses the benefits case associated with Government bodies perpetually having to:

• Spend millions of Pounds defending themselves in Court due to the illegal, incompetent or inappropriate actions of public sector employees
• Replace the exhausted and overwhelmed health and social care professionals struggling to cope with ridiculous caseloads, in the same way as the people I've been writing about are struggling - the ones they're supposed to be there to help.

Remember, hoarded and cluttered homes can kill people - whether by fire, mould or having a fall. So doing nothing to reduce the risk is not only playing with fire, it's like fanning the flames, tripping over the fire extinguisher, knocking yourself out, incurring a brain injury and not remembering who you are.

And that wouldn't be a very pleasant lifestyle choice, would it?

Yours practically...

Cherry

This blog was originally published on 20th May 2021 - it has been updated to reflect recent name and website changes to organisations (where known) plus additional relevant information.

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Are you one of those people who's struggling? Or do you know someone in need help and support?

If so, you could:

• 
  Take a look at the website Hoarding.Support (previously known as Help for Hoarders) where there’s heaps (pardon the pun!) of information and self-help suggestions, plus a forum where people can share experiences amongst a community of hope and understanding
• Speak to someone you trust who may be able to signpost you for help and support - that might be your GP (or other medical professional), Adult Social Care at your local authority, your landlord, Citizens Advice or even the leader of your faith group.

If you don’t know what to say, you could try using the Hoarding Ice-Breaker Form to start a conversation - simply print it out, tick a few boxes, estimate what level on the Clutter Image Rating Scale (CIR) the piles are in the various areas of your home, and hand it over to your trusted person.

And if the person you chose to talk to isn't very empathetic, you could suggest they:

• contact the charity HoardingUK for expert guidance
• arrange to have a chat with me or a Professional Hoarding Practitioner - we'll set them straight!
• If you're outside the UK, contact your local Professional Organiser Association listed below.

*There are currently 10 members of the Federation of Professional Organizer Associations (FPOA), in:

• Brazil (ANPOP)
• Canada (POC)
• China (CALO)
• Italy (APOI)
• Japan (JALO)
• Republic of Korea (KAPO - which had over 56,600 members in 2017 alone!)
• UK (APDO)
• USA (ICD and NAPO).

Plus Australia has IOPO, which is comparatively new, and will hopefully meet the criteria to become a FPOA member soon.

#hoardinghelp #hoardingawarenessweek #hoarding #FireKills #mentalhealth #chronicdisorganisation #ExecutiveDysfunction #Neurodiversity #clutter #stopthestigma

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About Cherry Rudge of Rainbow Red (and Creator of the Hoarding Ice-Breaker Form)

Cherry began her career as a Professional Hoarding Practitioner, trainer, mentor, consultant, activist and campaigner in 2011, after her mother died and they recognised her father (who had hoarding behaviours) had dementia.  It took her and her family two years to clear the house after he died.

Cherry was diagnosed with ADHD in 2019 (aged 56) and became a Trustee of her local ADHD Support Group (Fastminds, in Kingston-upon-Thames), which is why she now specialises in working with people with hoarding behaviours, chronic disorganisation and complex needs.

She has been a:

• Member of the Association of Professional Declutterers & Organisers (APDO) since 2011 (and a  Board Member for three years)
• Member of the National Fire Chief Council's Hoarding Working Group since 2013
• Dementia Friend since 2015
• Trustee of the Fastminds Adult ADHD Support Group in Kingston-upon-Thames since 2020
• consultant to Surrey County Council
• contributor to Jo Cooke's insightful book “Understanding Hoarding” (2nd edition published May 2021)

For further information please contact Cherry Rudge - Phone/Text: 07931 303310 - Email: cherry@rainbowred.co.uk

A mindful recovery from COVID, perspectives from my bedroom window, and how The Universe works in mysterious ways

Today is COVID day 9 for me and I’m still testing positive and quarantining in my bedroom. 

Thankfully I feel less shattered than this time last week, the coughing and aching has virtually stopped, I don’t feel like I’ve been flattened by a steam roller anymore, and I’ve barely needed to take any paracetamols for a couple of days.

I’m thankful to The Universe that the sun is shining, it's peaceful outside (apart from the birds singing their little hearts out, the blaring chimes of ice-cream vans, and the sounds of children laughing and playing in their garden!), and I can recover snuggled up in bed (with my laptop, phone and wi-fi!) knowing I’m being well looked after by my husband.  

Something I hadn’t expected to be able to thank The Universe for by having COVID is the gift of precious time – time to stop worrying about others for a while, and focus my energy on myself and MY recovery, for a change – ie. practice what I preach to others! 

Yes, it’s been great having time to catch up on things I’ve been meaning to do for AGES!  And I don’t just mean replying to personal emails and messages I’ve not had the energy to reply to for far too long (tick); or writing a couple of blogs (including this one - tick, tick); or burying myself in my laptop to finish projects for the Support Group I’m a Trustee of (tick, tick, tick, tick).

More importantly, I thank The Universe for offering me an insight into what life may be like for anyone with EXTREMELY impaired Executive Functioning 24/7, 365 days a year – often on top of chronic physical and mental health issues. 

By that I mean I now have a better idea of how exhausting it can be to have constant brain fuzz (more fuzzy than I usually have as someone with ADHD) that makes it not just difficult to make decisions but virtually impossible; the frustrations of trying to express verbally what I’m thinking or feeling (assuming I can remember what I was going to talk about); what it feels like to feel light-headed and keep misplacing and dropping things – and the list goes on.

I’m thankful to The Universe for giving me time to listen to what's going on outside my window, which is wide open and allowing in the wonderous smells of freshly cut grass - thanks to my lovely husband, who is also recovering from COVID, and who needed a lie down after mowing the lawn.

I’m thankful to The Universe for giving me time to lift my head from my laptop, lay back on my bed and enjoy watching the shadows and elliptical rainbows moving around the walls as the sun moves round and shines through the Venetian blinds and crystal pendant inside the heart hanging at the window.  

I have a tendency to see things from a different perspective from others, so I couldn't resist being a bit arty with some of photos I took. 

Great fun! 

Except…… my constantly whirring ADHD brain has also had time to consider things from a very different  perspective too.....

I think of the traumas that have made generations through the ages crave for the peace and solitude that I’m enjoying today.

And I think about the perspective of all those recovering from COVID-19 who are having very VERY different experiences to me.

For example, I think of those without a safe home to recover in, or who are in hospital, or make-shift hospitals, or lodging with others temporarily – all with an uncertain future ahead of them.

I think of all those looking out of windows with broken glass, devoid of glass, and voids where windows and walls used to be - demolished by ear-shattering blasts that rocked their once peaceful World.  

I think of looking out of windows onto landscapes that once embodied a united community, busily getting on with day-to-day life.  Except now all they see are terrifying scenes from the bleakest, most realistic CGI-enhanced war movies or virtual-reality computer games. 

I think of shattered buildings, shattered lives, shattered dreams and shattered futures that will take many, many generations of construction workers and trauma therapists to repair and rebuild. 

There are no squawking crows, chirping blackbirds or sounds of children playing for them to listen to.  Instead, they hear sirens, gunfire and explosions, and the screams of wounded innocent victims. 

No views of brightly coloured parakeets and Wood Pigeons sitting in a mighty two-hundred-year-old oak tree for them to look at from their window.  Instead, all they see is smoke from burning buildings and flashes from explosions.  In the street they see craters, barbed wire and barricades and citizens attempting to find food, water and shelter. 

If they’re unlucky they’ll see uniformed young men exhausted by prolonged resistance from what they'd been told was a colony that needed rescuing from Nazi sympathisers. 

Just how difficult must it be for the members of that youth army - and the nation they represent - to come to terms with having been duped by the President, Chiefs and Commanders who sent them there?  Power crazed leaders sitting pretty in their lavishly decorated mansions, viewing the World through blinkered lenses (based mainly on the experiences of one person’s family during WW2), being nourished by sumptuous confirmation bias being served by obedient minions who have spent decades being programmed to fear incurring the wrath of their masters instead  of looking at things from a different perspective and considering what the consequences of their actions might be on others.   

I thank The Universe for allowing me to recover from COVID,  and giving me the time to help me consider these recent events from a different perspective, and compare them to my late father’s experiences of being a victim of an horrific war that genuinely did involve Nazis.  

During WW2 he was one of 1.37 million children evacuated from London to the country.  The traumas of war affected his life, influenced his views and the decisions he made as a result – decisions that continue to affect his family 80+ years later. 

The traumas my Dad experienced during the war (now referred to as Adverse Childhood Experiences - ACEs) were nowhere near what others of his age went through, and what victims of conflict, famine, drought or injustice continue to endure today. 

My Dad was one of the lucky ones.  And so am I.  

Because what happened to my Dad has empowered me to become an instrument of change – and directly influence decisions that helps change lives. 

It never occurred to me that one day learning about ACEs and how it can seriously affect the health and wellbeing of those affected by it (especially if conditions such as PTSD aren’t quickly diagnosed and treated) might directly affect my understanding of what may have contributed to the decision my Dad made about buying his neighbour’s house when she moved, and then expanding to fit the space. 

Learning about ACEs helped me personally (for example):

• Feel less angry about having been brought up in a chaotic home that I was embarrassed about taking people home to
• Feel less frustrated about my Dad’s refusal to get rid of things that most people would consider to be rubbish
• Reconcile my frustrations at having to spend many MANY hours over two years clearing his house after he died
• Want to understand how best to help people (like me) affected by issues related to clutter, disorganisation and hoarding behaviours

Who knew that just one person’s Adverse Childhood Experiences might one day lead me to create a whole new career for myself in 2011, leading to becoming:

• The Marketing, PR & Partnerships Officer of The Association of Professional Declutterers & Organisers (2011 – 2013)
• A Dementia Friend
• A Time To Change Champion
• The Creator of the Hoarding Ice-Breaker Form (2017) – a tool that empowers people to start a conversation if clutter, disorganisation or hoarding behaviours has affected your health
• A Trustee of the Fastminds Adult ADHD Support Group (since 2019)
• A trail-blazing trainer, consultant, campaigner and contributor to the acclaimed book “Understanding Hoarding” by my friend and esteemed colleague Jo Cooke of Hoarding Disorders UK CIC
• A Member of Hoarding Working Groups:

o   The National Fire Chief’s Council (since 2013)

o   Surrey County Council (since 2017)

It just goes to show what re-framing someone’s perspectives can do!

As a result, I’ve been able to change the perspectives of and the decisions made by countless others, including clients, prospective clients, concerned relatives and friends, colleagues, Social Workers, Social Prescribers; charities, medical professionals, fire fighters, Environmental Health Officers, police officers, housing associations, solicitors, care home managers, teachers, tv production researchers, PR agencies, etc – to name but a few.

I won’t say that re-framing perspectives is always easy – far from it!  

It grieves me to learn that decisions have been made despite me pointing out the likely benefits of making a different decision, and the potential consequences of their actions - especially when it’s directly related to addressing issues related to a person’s safety, wellbeing, activities of daily living, mental health and possible reasons for their impaired Executive Functioning.

It would be lovely to think that folks will one day look back and say how grateful they were that because of me they learned to see things from a different perspective, and that the informed decisions they made as a result enabled them to live a safer, healthier and more fulfilled life as a result. 

Admittedly it’s highly unlikely the decisions I manage to influence will directly put an end to things like wars and global warming – although who knows?!

If nothing else, perhaps a few more people will regularly make time to be mindful and thank to The Universe for the little things in life that they can see and hear outside their windows - hopefully without being distracted by pandemics, war or global warming…..

Oh, and in case you're interested, the round images above are manipulations of photos of the crystal rainbows - a most surprising perspective, thank you PowerPoint!

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Cherry Rudge is a Professional Hoarding Practitioner, trainer, mentor, consultant, activist, campaigner and creator of the Hoarding Icebreaker Form.

Her late father had hoarding behaviours, which is why she now specialises in working with people with hoarding behaviours and complex needs.

For further information please contact Cherry Rudge - Phone/Text: 07931 303310 - Email: cherry@rainbowred.co.uk

Time to change the understanding about Neurodiversity amongst medical professionals

The March 2022 issue of "The Psychologist" magazine featured a BRILLIANT article entitled "Neurodiversity is not just for those we work with".

It was written by British Psychologist Joshua Muggleton (who is Autistic) and 33 other Neurodivergent (people with Neurodiverse conditions) colleagues, who drew attention to the negative affect that ineptitude can have on both professionals and patients.

Muggleton et al gave examples of how they'd been poorly treated by some colleagues upon discovering that they were Neurodivergent, and how it had affected their own mental health.   

I suspect this may perhaps be the first time (to my knowledge) that Neurodivergent medical professionals in the UK have aired their views so publicly directly to colleagues within their own profession, as the magazine is published by the British Psychological Society (BPS).

I wholeheartedly applaud and support Muggleton and the other authors of the article for "unmasking" themselves publicly, and diplomatically and unpretentiously laying down the gauntlet for the BPS to transform its attitude towards Neurodiversity in general.

Because many people with hidden disabilities encounter these types of issues - for some it can be easier (and require less energy) to mask who we are than be honest and transparent with our employer...

Regular followers of Rainbow Red (my company) and the Hoarding Icebreaker Form (that I created) will know that I’ve said on numerous occasions how I’ve come across many people with Executive Dysfunction who have issues related to clutter, disorganisation and hoarding behaviours who have been let down or abused by professionals - not just psychologists, and not just medical professionals.

Even now, in the 21st century, far too many of the most vulnerable members of our society are still being abused by or allowed to slip through "the system".  

Some may be diagnosed with (and potentially prescribed medication and/or therapy for) mental health conditions they don't actually have - most commonly the one with possibly the worst name:  Emotionally Unstable Personality Disorder (EUPD), also knowns as Borderline Personality Disorder (BPD).

Whereas conditions such as Autism and/or ADHD (co-morbidity is common) are far more likely to have explained the underlying root causes of a person's anxiety, and often some of the surprising - and what some might say are irrational - lifestyle choices they may have made along the way.  

Individuals with hidden disabilities are unfortunately vulnerable to abuse, manipulation and exploitation, and serious mis-treatment and/or abuse by (so-called) professionals happens far too frequently.

Some (like me) may not be granted shared care by their GP once they've receive a private diagnosis (because it wasn't done by the NHS), and end up paying hundreds of pounds a year for prescription medication whilst waiting years for an NHS diagnosis because of the ever-increasing waiting lists.  

Tragically, some might be victims of adverse childhood experiences (ACEs) or other traumas.  How many exactly we will probably never know.  Nor will we ever know how many went undiagnosed or felt so violated, unsupported, and broken that they chose to end their misery by taking their own lives.

In the case of Joshua and his Neurodiverse colleagues , had all medical professionals (not just psychologists) received more in-depth training about impaired Executive Functioning and Neurodevelopmental conditions (which now includes Long COVID), there would have been:

• a far greater chance of them being diagnosed, treated and receiving appropriate support and reasonable adjustments/ adaptations as children, instead of as adults
• a reduced risk of being stigmatised and bullied (especially as children/teenagers), leading to low-esteem issues and having to try and mask their symptoms in order to fit in
• a far greater chance of them being offered reasonable adjustments by their employers, and applauded by them (plus colleagues, employees and clients) for the special insight they have into the types of difficulties experienced by others with hidden disabilities
• far greater likelihood that they'd develop a stronger connection with their Neurodiverse clients, and achieve quicker, longer lasting outcomes for them as a result

In most cases, professionals genuinely believe they are doing the right thing in order to improve a person’s quality of life.  

However, they – like everyone else – are restricted by the training they have received.  Training that is flawed, inadequate, out-dated or recommends obsolete best practices that don't take into consideration people the challenges associated with activities of daily living experienced by people with impaired Executive Functioning and Neurodiverse conditions, and are proven to have done more harm than good.  

All of which begs some fundamental questions for BPS and other medical bodies responsible for training future generations:

• How long will it be before ALL professional medical bodies (not just the BPS) make in-depth customer-focused training  about Executive Functioning and Neurodiversity part of the core curriculum?

• How long will it be before Neurodiverse individuals can feel confident that their health and care needs will be  met (promptly and appropriately) by legitimate law-abiding professionals who have a good understanding of Neurodiverse conditions and the types of reasonable adjustments required to accommodate individuals with hidden disabilities?

• How long will it be before Neurodiversity is being discussed in the way that mental health is now, thanks to fantastic campaigns such as Time to Change and The Royal Foundation?  It took about 10 years for the Time to Change campaign to really make an impact, let's hope conversations about Neurodiversity are common-place a lot quicker than that....

• How long will it be before ALL public and professional organisations (including schools, hospitals, solicitors, etc)  catch up with some of the most famous IT companies in the World and recognise that employing individuals with Neurodiverse conditions such as ADHD and Autism HAS to be part of their future if it's to be sustainable.

• How long will it be before discussions about the potential need for reasonable adjustments become an integral part of an induction process for new staff?

• How long will it be before hospitals, care homes and nursing homes revise their business models and strategies so that ALL medical and care facilities are specifically designed to meet the needs of our aging Neurodivergent population?

• How long will it be before we see and hear media and social media coverage damning organisations that DON'T embrace Neurodiversity?

THANK YOU Joshua et al for giving the BPS (and the World) an insight into what success could/should look like for Neurodivergent medical professionals.  

Now is the time for the leadership and training teams at BPS and ALL the other professional bodies (not just medical ones) to stop avoiding the elephants in the room and:

• accept that Neurodevelopmental conditions are not going away (they're genetic), and that making people with hidden disabilities fit in with out-dated broken processes and environments that are too overwhelming for them doesn't work - it makes things worse. 
• make people like Muggleton et al and myself (ie. people with ADHD and/or Autism etc) part of the process of change.

It's the common-sense, best-practice, customer-focused way to run a sustainable business.  

So please BPS and other professional organisations responsible for training future generations - please take the hint that Muggleton et al have given you, and start re-training mental health professionals to become specialists in Neurodiverse conditions instead. 

Start creating processes and environments that are Neurodivergent friendly, not Neurodiverse minefields.  

An empowered workforce is generally more productive, more energised, more dedicated and healthier - all of which has a direct effect on the local communities around them, and the nation. 

With staff needing less time off work due to less work-related stress, people will need fewer appointments with health professionals, and psychologists and other professionals who haven't embraced Neurodiversity will end up out of work!

Let's watch this space with interest and see how long it takes.....

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Cherry Rudge is a Professional Hoarding Practitioner, trainer, mentor, consultant, activist, campaigner and creator of the Hoarding Icebreaker Form.

Her late father had hoarding behaviours, which is why she now specialises in working with people with hoarding behaviours and complex needs.

She has been:

• Member of the Association of Professional Declutterers & Organisers (APDO) since 2011 (and was a Board Member for three years)
• a Member of the National Fire Chief Council's Hoarding Working Group since 2013
• a Dementia Friend since 2015
• a Trustee of the Fastminds Adult ADHD Support Group in Kingston-upon-Thames since 2020 (she received her own ADHD diagnosis in 2019, aged 56) 
• a consultant to Surrey County Council's Hoarding Working Group since 2017
• a contributor to Jo Cooke's insightful book “Understanding Hoarding” (2nd edition published May 2021)

For further information please contact Cherry Rudge - Phone/Text: 07931 303310 - Email: cherry@rainbowred.co.uk