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

Is it Depression, or is it more likely to be ADHD?

Here at Rainbow Red we regularly meet, hear from or hear about SO many people with issues related to clutter, disorganisation or hoarding behaviours who have been diagnosed with Depression.

We also recognise oh SO many symptoms of ADHD in those same people, and suspect that were inadequately diagnosed originally.  

Sadly, whilst a GP rarely has the time to thoroughly assess a patient who presents with depression symptoms, they do have time to prescribed antidepressant medication.

Had their patient been asked probing questions about what they find depressing about their life, the root cause may well have been because they were overwhelmed by life events (such as bereavements, bullying, issues at work), and struggling to cope with the everyday practical priorities like children, housework and relationships, losing weight, health problems, the washing machine breaking down ..... the list goes on, and on...

Instead of being prescribed antidepressants or bog standard Cognitive Behaviour Therapy (CBT), a combination of ADHD medication, appropriate therapy (sometimes), support (probably from peer-led Support Groups run by people with similar issues) and educating them about practical holistic strategies that help people who experience Executive Dysfunction could have have been far more effective than antidepressants - and at the same time, potentially saved a fortune in hidden costs to taxpayers (from interventions by the emergency services, healthcare, law enforcement, benefits and social care) - not to mention probably saving lives by preventing accidents from fires in the home, or reckless driving.

Receiving the correct diagnosis and treatment could potentially have enabled them to avoid (or at least reduce) many years of (for example):

• regularly losing things (like keys, phone, wallet….)
• impulsively purchasing, acquiring or accumulating non-essential items (and not being able to let go of them – even when they caused issues with their landlord or family members, or resulted in slips, trips, falls or even fires
• turning up late to appointments, or forgetting to go to appointments
• finding it difficult to plan or organise their homes or their lives effectively so they felt in control of their affairs
• being easily overwhelmed or overly emotional
• making unwise or inappropriate decisions that lead to relationship breakdowns, run-ins with the law, accidents (eg. because of reckless driving)
• unrewarding career choices, employment tribunals and/or losing their job
• excessive reliance on stimulants – including drugs, alcohol, food, exercise, extreme sports, etc
• health issues due to exhaustion (eg. Chronic Fatigue Syndrome or Fibromyalgia) or unhealthy lifestyles (eg. Diabetes)
• not fully achieving their true potential

So if you know someone who has been struggling on-and-off with depression for a long time, and has also struggled with the type of difficulties listed above, how about suggesting the possibility they may have ADHD?

Or, if that feels like it may not be well received, simply forward them the link to this brilliant blog by Rick Green - a Canadian Comedian comedian, satirist, actor, writer, and advocate for awareness of adult ADD.  He was diagnosed with ADHD in 2001, at the age of  48 (when his son was diagnosed with ADHD), and went on to found the company TotallyADD.  Their aim is to:

• remove the stigma of ADHD
• liberate people from fear, shame and resignation
• create an interactive community for adults with, or affected by ADHD and ADD
• empower people to create customized tools and treatments
• provide reliable, credible and current information
• present information in a lively, visual, memorable and fun way
• give people the tools and support they need to create a life they love

So please share this blog with as many people as you can, to educate medical professionals so that their automatic reaction when presented with a patient who has depression symptoms is to reach for the ADHD (or Autism) assessment referral form before (or in addition to) pushing the antidepressant prescription request button.

If you'd like to find out whether you might have ADHD, you could:

• Download and complete this form and use it to start a conversation with your GP - Adult ADHD self Assessment
• It's from the Adult ADHD Self-Report Scale-V1.1 (ASRS-V1.1) Symptoms Checklist from the WHO Composite International Diagnostic Interview)
• Try the fun quiz from TotallyADD - https://www.youtube.com/watch?v=iozAFIr3BEw&feature=youtu.be

And please please please - exercise those lovely Executive Functioning and critical thinking "muscles" of yours properly, so you remain socially distanced and safe in these difficult COVID-19 pandemic times.  

Thank you.

xx

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

She received her ADHD diagnosis in 2019 (aged 56) and is a Trustee of the Fastminds Adult ADHD Support Group in Kingston-upon-Thames.  

Cherry was on the Board of The Association of Professional Declutterers & Organisers (APDO) for three years, which is when she was invited to become a member of the National Fire Chief Council's Hoarding Working Group,  and helped launch the first ever UK Hoarding Awareness Week (in 2014) at the House of Commons in London.

She became a Dementia Friend in 2015, and contributed to the insightful and easy to read book “Understanding Hoarding” (published by Sheldon Press in 2017), to talk about her experiences as the daughter of someone with hoarding behaviours who went on to have Alzheimer's.

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

Mental Health Awareness Day, Adult ADHD & Executive Dysfunction - Myths and Facts

We're proud to say that today (which happens to be #MentalHealthAwarenessDay) we not only helped someone understand a bit more about #ADHD - which is nice, as it's #ADHDAwarenessMonth - we also helped them understand about how Executive Dysfunction doesn't just affect people with mental illness.

By the end of our conversation, they decided they will definitely ask their GP for a referral for an ADHD assessment - when previously another GP had apparently told them:

(a) the NHS doesn't recognise this condition in adults - it most certainly does - and

(b) they should perhaps get a referral for a mental health assessment instead.

Today we also helped someone else write a letter to appeal against their PIP benefits being stopped. They clearly experience extreme difficulties with Executive Functioning, and will be incapable of functioning "normally" until the root cause of their extreme anxiety and ill health (probably ADHD and Autism) is diagnosed and treated.

Is it any wonder that people end up frustrated and with mental health problems when they have to contend with a system which doesn't fully understand that there are conditions other than mental ill health that can result in Executive Dysfunction - conditions that prevent someone from being able to function "normally" and conform to social norms, like being able to hold down jobs or relationships.

Wake up NHS England and NHS Improvement - these are not isolated cases!

#ADHMyths #ADHDAwarenessMonth. ADHD Awareness Month #ExecutiveDysfunction #Equality #PersonCentred #HealthPolicy

To discover myths and facts about ADHD, check out the ADHD Europe website - www.adhdeurope.eu/awareness-month/myths-facts/

For more information about ADHD, check out the ADDIS website - www.addiss.co.uk/

And if Executive Dysfunction is causing you to have problems with clutter, disorganisation or hoarding which is affecting your health, then try using the Hoarding Ice-Breaker Form to start a conversation with your GP. - www.hoardingicebreakerform.org