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.

+ + + + +

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

+ + + + +

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