Clutter & disorganisation crisis looming for brain-damaged COVID-19 patients?

There's potentially some good news on its way for experienced Professional Organisers and Professional Hoarding Practitioners who work with people with complex needs - we're likely to be even more in demand as a result of COVID-19.

According to an article in The Guardian on 8th July 2020, UK neurologists have published details of mildly affected or recovering Covid-19 patients having serious or potentially fatal brain conditions.

The cases (published in the journal Brain) support a paper recently published in The Journal of Alzheimer's Disease (by an American team of leading neurological experts), which says that some former COVID-19 patients may go on to develop cognitive decline, attention deficit, brain fog, or Alzheimer's disease.  

And that of course means they may (for example):

• Be left with degenerative COVID-19 related physical health problems that affect them for the rest of their lives
• End up with PTSD caused by the trauma of having had COVID-19, as well as having to adjust to having physical anxiety, depression or stress-related illness that they may not have had before
• Find it difficult to maintain their pre-COVID-19 career/employment status, level of income and lifestyle
• End up finding themselves reliant on the benefits system to be able to pay their bills - assuming there is an appropriate welfare system in place where they live of course...
• Need to downsize or request council accommodation if their situation becomes too dire (they may even have to relocate to other areas if there's insufficient suitable accommodation available in their area.
  
• Lose some of their Executive Functioning (EF) - the daily skills of life that enable us to carry out what "neurotypicals" take for granted, such as:
• the ability to remember were they put things; 
• arrive at appointments on time (assuming they remembered to write the appointment in their diary in the first place - assuming they could even find their diary or remembered to look in their diary); 
• organise their homes (eg. create and maintain effective filing systems for paperwork, photos, emails, etc; 
• manage their affairs (eg. pay bills on time, arrange repairs to be carried out to fix broken heating, etc)
• maintain a clean, safe, hygienic and clutter-free living environment

Not that these are good things of course - absolutely not - far from it!  

Life-changing experiences like these can be frustrating, exhausting, depressing, and time-consuming to address.  Especially for individuals who were previously physically active, focussed on career development and fiercely independent.  

And then there's the friends and families who end up becoming carers to them post-COVID.

Without appropriate and timely support, the health and wellbeing of people affected by these kinds of difficulties can rapidly deteriorate, and the consequences can be disastrous.

It's only in the last few years that some local authorities (especially those that have received specialist training from organisations such as Hoarding Disorders UK CIC, Clouds End CIC and Rainbow Red) have begun to understand that issues related to clutter, disorganisation, self-neglect and hoarding behaviours are:

• Very rarely lifestyle choices
• Until COVID-19, the chances are that that individuals experiencing these issues had underlying neurological and/or mental health conditions (often undiagnosed).  Post-COVID-19, the difficulties could be related to that issues caused by the Coronavirus, on top of existing problems.
• Likely to be physical representations of the chaos and overwhelm in a person's life
• Often made worse by sending in a clearance/cleaning firm, instead of someone who offers a person-centred service

So, why does this mean there's potentially a clutter and disorganisation crisis looming?

Because the bad news is that:

1. there may be no money to pay for these essential services

2. There aren't enough of us with sufficient skills and experience of working with people with complex needs to meet demand.  And those of us who do have been inundated with calls since lockdown started - we simply can't keep up (so apologies to all those who we've not yet had a chance to contact).

Health and social care services are likely to be overwhelmed with requests for support from the likes of professionals such as Occupational Therapists, Physiotherapists, support workers, mental health specialists and neurological specialists - all collaborating with Professional Organisers and Professional Hoarding Practitioners - empowering individuals to remain independent for as long as possible.

We predict there could be (for example):

• inadequate budgeting and training of NHS and local authority personnel to provide specialist person-centred practical support
• Many people who lose their job due to the deterioration in their health, and who turn to already over-stretched health and social care and/or benefits systems to pay for support
• enormous competition for already very limited health and social care budgets 
• an increase in demand for council accommodation
• an increase in the number of social workers required to deal with increased case-loads
• an increase in safety issues in the home due to self-neglect, fires; slips, trips and falls; infestations, etc. 
• an increase in the number of vulnerable people being targeted by unscrupulous scammers and and becoming victims of of cuckooing (when people are unwell they are less able to maintain their properties in which drug dealers take over the home of a vulnerable person in order to use it as a base for county lines drug trafficking. 

All of which could continue for many years to come.

Still, it's reassuring to know that decluttering and organising specialists are likely to at last become an integral part of multi-agency responses and interventions.  Better late than never.

My hope is that by re-training people who have struggled with organising issues the past - and either attended hoarding or clutter support groups or worked with professional practitioners (or both) to develop sustainable coping strategies that  brings order to their lives - we'll end up with a new generation of practitioners as passionate as we are about giving something back to clients who were once like them.

So, if you'd like to know more about attending training to become a Professional Hoarding Practitioner, please please please get in touch.  

Because without your empathy, patience, and ability to motivate, empower and coach people to believe in their ability to take control of their paperwork and their homes, some people won't be able to sort their way out of their mess - which wasn't their fault in the first place....

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To find a Professional Organiser in the UK, check out The Association of Professional Declutterers & Organisers (APDO) website - www.apdo.co.uk

Professional Hoarding Practitioner Training

Do you work with people with complex needs or issues related to hoarding or extreme disorganisation? 

Have you thought of working with people who exhibit hoarding behaviours but want some reassurance before giving it a go?

The aim of our one-day courses is to teach professional practitioners about how to make sustainable progress when working with clients, service users, tenants, patients and their support networks, as well as some of the challenges and stigmas you might face along the way and how to reduce the risk of them happening.

By the end of each day you'll have a better understanding of some of the complexities you’d be letting yourself in for by working with people who live with extreme amounts of clutter, and whether the it makes sense for you personally, or for your business.

Who attends?
Our interactive training empowers all the agencies affected by hoarding behaviours and associated issues, including:

• Environmental Health Officers
• Charity workers
• Professional Organisers
• Community Health Officers
• Housing professionals
• Care workers
• Social workers
• Fire & Rescue Service
• Specialist support workers
• Occupational Therapists
• Healthcare professionals

Trainees are encouraged to share their experiences with the group, to help everyone understand each other's perspectives and challenges, and the importance of close multi-agency collaboration.  

Our aim is to end up with a community of professional friends and colleagues who follow common best practices when working with people affected by hoarding behaviours, and support each other through what can be challenging and sometimes emotionally draining experiences.

Training groups are limited to a maximum of 14, so there should be plenty of opportunities to ask questions – please help us make the day as interactive as possible!

STAGE 1

Venues & Dates

Solihull
- Currently on hold due to COVID-19 (date to be confirmed)

Cost per person: £195 including refreshments & lunch 

Course content includes:

• Hoarding Disorder Overview
• Traits of people with hoarding behaviours
• Common causes
• Reasons for Saving
• Tactics and How to Develop Them with the Client
• Some Techniques
• Key Stakeholders
• Practical Challenges
• Is it right for you or your business? 
• Support for clients 
• Safeguarding ourselves

Pre-training requirements - No requirements

To book please contact Jo Cooke - jo@hoardingdisordersuk.org  

STAGE 2

Solihull

- Currently on hold due to COVID-19 (date to be confirmed)

Cost per person: £195 including lunch and refreshments

Course overview:

This one-day course expands on Clouds End’s/Hoarding Disorders UK’s/Rainbow Red’s Hoarding Awareness Training for Professional Practitioners Stage 1 training, and examines in more detail (through practical case study exercises) some of the proven techniques and tools used by professional organisers and agencies to help hoarders achieve a more functional and energising environment in which to live.

By the end of the day you will have an overview of current best practice processes and be able to use a number of risk assessment and measurement tools designed to empower you to help people affected by extreme cluttering and hoarding behaviours make a positive and sustainable difference to their homes and their lives.

Course content includes:

• Getting through the door (if you’re lucky)
• How to stay there and how to make progress
• Assessments, measuring progress & reporting
• Safety in the home - from a member of the Fire and Rescue Service
• Hoarding task forces, multi-agency groups & hoarding protocols
• Examples of extreme situations – eg. eviction, squalor (Environmental Health), animal hoarding
• Legal stuff - Mental Capacity Act 2007, Mental Health Act, Care Act 2014 & Advocacy
• The voice of a person with lived experiences of hoarding behaviours - with the opportunity to ask them questions

Pre-training requirements - It will make MUCH more sense if you've attended our Level 1 training!

To book please contact Jo Cooke - jo@hoardingdisordersuk.org 

STAGE 3

Currently on hold due to COVID-19 (date to be confirmed)

It's not about the stuff - it's about the people

Cost per person: £195 including lunch and refreshments

Course overview: 

• Introductions
• Stage 2 re-cap & reflections
• Fears, blocks & gaps
• Case study exercises
• Change
• Case studies
• Group discussions
• Mindfulness
• Applying motivational interviewing and other techniques in the context of working with hoarding behaviours
• Therapies
• Lessons learned

Pre-training requirements:  Must have attended Stage 2 of our Professional Hoarding Practitioner training (and preferably Stage 1 too - otherwise it won't make as much sense) 

To book please contact Jo Cooke - jo@hoardingdisordersuk.org  

Testimonials

"Fabulous day at the Professional Hoarding Practitioner Training today, Stage 2 tomorrow.

Head buzzing with ideas, and heart is full knowing what I’m doing with my clients is not only right, but also the way forward. I love learning from others, and in this job there’s always something to learn. Rainbow Red UK, Clouds End CIC & Hoarding Disorders UK CIC know their stuff!"
Heather Tingle - Untangled by Tingle - March 2020

"What an absolute joy to learn from Heather, Jo and Cherry, three amazing ladies who care, support and give so much.

The training content was fabulous but more important was the infectious energy and enthusiasm with which the reality of the problem and practical solutions were shared. Hearing from Steph and Keith’s story, as former hoarders, were so moving they made me want to help others to find a way out. LOVED IT!!! Thank you".

Jo Cavalot, DOTTYMOW, Sheffield – September 2019

"Excellent training. Thoroughly enjoyed the level 1 course"

Paul Cooper - Hoarding Disorders UK

"All aspects of today’s training were exceptional. Certainly very though provoking. Gained additional knowledge and understanding. Sincere thanks to you all".  

Gail Tranter, Environmental Health, Newark & Sherwood DC - October 2018

I just wanted to say ‘Thank you’ for a informative and useful training day today. I left the day feeling informed and keen to learn more. You are all very inspiring women".

Anon – July 2018

"The training left me wanting more even though I am still not sure that dealing with serious hoarding clients is for me. So, I would like to come to level 2 when you run it.  I also think that the work that the three of you do is nothing short of amazing. As I said to you yesterday, this seems more like a vocation. It was so interesting to hear some of your case studies and also very moving".
Mary D – July 2018

"Very well presented, very clear and easy to understand.  Trainers are very knowledgeable and thoroughly enjoyed it. Look forward to Level 3 :-)"

"Really enjoyed this course, very empowering, thank you"

"Another brilliant day - motivating!"

About the Trainers

Heather, Jo and Cherry are all ILM^* and NCFE^* Accredited trainers.

*Training Accreditations:  

• ILM = The Institute of Leadership & Management
• NCFE = a registered educational charity

Between us we have over 20 years’ experience of working with people with extreme cluttering and hoarding problems, and regularly deliver training, coaching and advice to a variety of organisations including housing associations, mental health teams, charities, fire and rescue services and social care teams.  

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Heather Matuozzo founded the social enterprise Clouds End CIC in 2007, and is a professional trainer, declutterer, and activist for people who hoard. 

She co-founded the Pan London Hoarding Task Force and National Hoarding Task Force initiative, and runs three hoarder support groups in the West Midlands. 

Heather has taken part in BBC’s documentaries including Britain’s Biggest Hoarders; talks frequently on the radio; is Chair of the charity HoardingUK, and is an associate trainer for the mental health charity MIND.

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Jo Cooke is a Director of the Community Interest Company Hoarding Disorders UK, and also runs her own professional organising and decluttering business Tapioca Tidy.

She has been featured in The Guardian newspaper, and is the author of the book “Understanding Hoarding” which is fast becoming the “go to manual” for hoarders, their families and agencies that work with people exhibiting hoarding behaviours.

Jo runs three hoarding support groups (Bracknell, Newbury and Reading), and was a finalist in the Venus Awards’ Lifetime Achievement Award 2018.

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Cherry Rudge of Rainbow Red is on a personal and professional development journey because her father had hoarding behaviours.  She was a Board Member of the Association of Professional Declutterers & Organisers (APDO), is a Member of the National Fire Chiefs Association’s Hoarding Working Group, and helped organised the first ever UK Hoarding Awareness Week in 2014.

Cherry is a Dementia Friend, a Trustee at an ADHD/Autism Support Group (Fastminds in Kingston-upon-Thames), and devised the Hoarding Ice-Breaker form to empower people whose health has been affected by disorganisation, clutter and hoarding to start a conversation with a GP or medical professional, so they can be signposted for appropriate treatment and practical support.

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Cherry and Heather delivered the UK’s first Hoarding Awareness Training for Professional Organisers in 2014.

Our Adventures in San Francisco for the 18th International Conference on Hoarding & Cluttering

2018 is turning into one heck of a memorable year!  

So far this year I've attended "Organising Matters" - the Annual conference of The Association of Professional Declutterers & Organisers (APDO), plus two conferences on hoarding - one in San Francisco and the other London - and am very much looking forward to a third in Edinburgh in October! 

Plus our Level 1 Professional Hoarding Practitioner training course has just been launched - starting in July 2018, with more training to follow.

Selfie on the plane

Just after APDO's conference in March, Jo Cooke (of Hoarding Disorders UK CIC), Heather Matuozzo (of Clouds End CIC) and I flew off to San Francisco, full of excitement for our adventure!

Click here for an account that we wrote for APDO's newsletter (The Association of Professional Declutterers & Organisers), outlining the training and conference part of our trip.

The Berkeley City Club Hotel turned out to be the perfect place to stay, as it's less than a 10 minute walk to the conference venue (the University of California Berkeley), and about a 10-15 minute walk to the local Bart train station.   The line goes straight into the City, and it's easy to get from there to the airport too, with only one change.

The ''Little Castle'' was designed by the architect Julia Morgan, and founded in 1927 as The Berkeley Women's City Club. and is a Berkeley City and California State Historical Landmark.  

It has THE most amazing swimming pool, which opens from 5am - perfect for early-bird Jo!



Highlights of the trip for me included:

• Spending a week in the company of two of the most gorgeous and compassionate women I have ever had the privilege of meeting
• Not only did we have fabulous fun every single day, the three of us got to talk for an entire week amongst ourselves and with others (who are as passionate as us) about how we can help, support and raise awareness of the dilemas faced by people affected by extreme clutter, disorganisation or hoarding - how great was that?!
• Meeting the amazing Hilary' Kacser and being mightily impressed by her memorable opening one-woman keynote performance of DisordR, The Play - a moving account of some of PakRat Patty's experiences as a hoarder
• The pre-conference training by Dr Michael Tompkins, author of “Digging Out” and “The Clinician’s Guide to Severe Hoarding – A Harm Reduction"
• Learning that the UK is actually ahead of the USA in some respects relating to hoarding.  For example, we have a National Hoarding Awareness Week, whereas campaigns are far more regionalised in the USA
• Spending quality time with some wonderful folks from the US who are all doing amazing work helping people affected by hoarding (and raising awareness of the issues associated with this debilitating subject), including Marnie Matthews of The Clutter Movement, Eileen Dacey of North Shore Elder Services (near Boston, MA); Christa Tipton of NASWCA Technology Council & Orange County Task Force on Hoarding and Jette Selberg from the San Francisco Bay area.
• Getting my photo taken with the compulsory hippy flowers in my hair - well, Berkeley was where the movement started, so it had to be done! (thank you Jette for being so thoughtful!)
• Visiting the Museum of Modern Art in San Francisco
• Catching one of the famous cable cars (in the pouring rain!), and having a yummy meal in China Town
• Strolling around art galleries in Oakland 
• Enjoying eating our way around the World, with delicious food from places like Japan, Korea, Mexico, USA, China, Burma and Eritraea - to name but a few!
• The fabulous in-flight service from Virgin Atlantic - especially coming home!

Jo, Hilary, Heather, Cherry

So, it's now time to start planning our trip for the next conference.  Sadly I've just missed the 4th Annual Hoarding of Animals Conference in Danvers, Massachusetts (which would have been fascinating), but watch out San Francisco, we'll definitely be back!

Heather, Dr Michael A. Tompkins, Cherry, Jo

Marnie, Cherry, Christa, Jette, Jo, Heather, Eileen

Click here to return to Rainbow Red's website

Professional Hoarding Practitioner Training - developing the next generation

Our new PROFESSIONAL HOARDING PRACTITIONER training was launched at The National Hoarding Conference on Monday 14th May, at the start of Hoarding Awareness Week 2018 



Click on the video to find out about it, or read on...

Cherry Rudge (founder of Rainbow Red and creator of the Hoarding Ice-Breaker Form) is delighted to once again have joined forces with fellow pioneering hoarding expert Heather Matuozzo of Clouds End CIC, to create specialist training designed to develop the next generation of Professional Hoarding Practitioners.

This time we're absolutely thrilled to be joined by fellow Hoarding Practitioner Specialist
Jo Cooke of Hoarding Disorders UK CIC, author of the go-to book "Understanding Hoarding".

Our new Level One course builds on the historical and highly successful Hoarding Awareness Training that was run for Members of The Association of Professional Declutterers & Organisers back in 2014.  Here's what people said about it:

"The 'Working with Hoarders' training day today in Reigate was brilliant! Thank you both Cherry and Heather (and Andy and Vassoulla). I feel my understanding of my work is improved whether I eventually work with serious hoarding or not."

"Very insightful and I believe a must for everybody working with hoarders or contemplating to do so.  

What a brilliant day!   Thanks so much." 

Thanks Heather and Cherry - found it very useful, not least as it really brought home what 

working with hoarders might involve."

Our Level One training another a one day course, once again designed to give professional practitioners an insight into the types of challenges that are likely to be faced when working with people affected by extreme clutter.  

Topics include:

• Identifying the traits of hoarders
• Hoarding disorder - mental illness & other health challenges
• Conducting interviews and assessments & report writing
• Introducing the Clutter Image Rating Scale
• Information from the Fire & Rescue Service about:
• Fire safety and how to prevent fires in the home
• Safe and Well visits (formerly known as Home Fire Safety visits), and follow-up actions
• Legal aspects including The Care Act 2014
• Safeguarding and Self-Neglect
• Social housing and Hoarding Taskforces / working with multiple-agencies
• Social Services, direct payments, etc
• Eviction and re-housing
• Practical challenges – getting rid of stuff, short-term storage, etc
• Hoarder support and self-help groups
• Safeguarding ourselves as Professional Practitioners

By the end of the day, attendees will have a better understanding of some of the complexities they’d be letting themselves in for by working with people who live with extreme amounts of clutter, and be better placed to decide whether it makes sense for them personally, or for their business. 

Our aim is to build a community of professional friends and colleagues who follow common best practices when working with people affected by hoarding behaviours, and support each other through what can be challenging and sometimes emotionally draining experiences. 

Cherry, Heather and Jo are all Accredited as trainers by The Institute of Leadership & Management (ILM) and NCFE.

Cost:  £175, including refreshments and lunch, plus a FREE one hour mentoring session. 

Dates & Venues:   

• London
• Wednesday 11th July 2018 - Wimbledon
• Other dates to be confirmed
• Birmingham 
• Dates to be confirmed
• Leeds 
• Dates to be confirmed

To book or for more information, please contact Jo Cooke:

• Email:   jo@hoardingdisordersuk.org
• Phone:  07950 364798

Click here to return to Rainbow Red's website

"Understanding Hoarding" - by Jo Cooke

"Understanding Hoarding" by Jo Cooke is the first book of its kind in the UK that''s been written by a British author (most of the other books about hoarding have originated in the US).

If, like me, your life has been touched or changed by hoarding behaviours and you'd like to understand more about it, then I encourage you to invest in this book - it's been compared to the international works of Steketee, Frost et al, all of whom are experts and published authors on the subject.

Jos' book is easy to read, sensitively written, empathetic and practical, and includes contributions and case studies from hoarders themselves, families of hoarders, professional practitioners, the Fire & Rescue Service and others.

Jo Cooke of
Hoarding Disorders UK CIC

Jo's insight into the world of hoarding comes as a result of being the daughter of a hoarder - as am I.  

It lead her to eventually set up a specialist social enterprise called Hoarding Disorders UK CIC (Community Interest Company) based in Newbury, Berkshire, as well as two (currently) hoarding support groups.

I hadn't read the book prior to it being launched, and have been absolutely delighted by it - it really does live up to one of the reviews on Amazon, written within only two days of the book being published:



"The definitive book on understanding hoarding.   It is both an easy read and beautifully written. It will become the bible for people affected by hoarding. Hoarders themselves, families of hoarders, and people that come into contact with hoarders such as social workers, housing officers, the fire services and many others.

As well as addressing what is hoarding and why people hoard it gives good advice on decluttering and sustainability.

Jo writes in an easy style with a great deal of commonsense, knowledge and passion.Everything you need to know is in this book, the complete guide."  

Very sadly many children of hoarders fall out with their parents; the stuff can tear resentful families apart.

I wish it had been available as I was growing up, so that I could have learned what might be behind my controlling father's habits.  It would have given me the knowledge to look beyond the stuff and work towards developing a stronger and more emotionally rewarding relationship with him. 

In later life he developed Alzheimer's, which made caring for him (and then clearing out his house once he'd died) a time consuming, financially draining and emotional roller coaster of a journey.

Jo very kindly invited me to contribute to "Understanding Hoarding", and has even credited me in the acknowledgement at the beginning, for which I'm truly grateful!  

So I must thank some very special people, without whom my contributions to the book would not have been possible.

Firstly, my client Peter - for allowing me to tell his story.  Next, Sheena Crankson and Felix Pring of FAST Minds ADHD Support Group in Kingston-upon-Thames - for their support in helping me create the diagram (below) for the book.  

It's designed to give people an insight into the thought processes of the ADHD Brain in the context of organising, clutter, disorganisation and hoarding, and has been well received by people with ADHD.

The day after "Understanding Hoarding" was published, a lady who has the condition (as do members of her family) asked if it would be OK to take it to school to show the teachers, to help them understand how difficult and debilitating it can be to have ADHD/ADD.

Members of my local ADHD support group were very excited to see the difficulties they have with clutter and disorganisation shown in picture form (because pictures paint a thousand words).

Heather Matuozzo of Clouds End CIC (founder of the first social enterprise in England specialising in hoarding behaviours) has been a great mentor and friend on my personal and professional development journey, and has also made an invaluable contribution to Jo's book.

And finally, I must thank my late parents - without whom I would not be writing this blog now.

I will always be grateful to Jo Cooke for allowing me to contribute to her wonderful book, and for empowering readers to look at their possessions, other people's possessions and other people's lives differently.  

Because hoarding isn't about the stuff, it's about the people.