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

Executive Dysfunction & the mysery of having undiagnosed ADHD

There's been a lot of media coverage recently about the BBC radio 4 programme in which comedian Shappi Khorsandi received help to bring order to her home from my APDO (Association of Professional Declutterers and Organisers) colleague Sarah Macnaught of RightSize. 

Here's the link to the radio programme if you'd like to listen to it.

https://www.bbc.co.uk/programmes/p07qcqqs

What I don't remember being mentioned in the programme was that Shappi was diagnosed with Dyspraxia whilst at university, and then a few years ago she was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) – another neurological condition which creates problems with Executive Functioning – which is why Shappi (and countless others like her) experience difficulties with things like planning, organising, decision-making, multi-tasking, time management, and even regulating their emotions.

An article by the journalist Robyn Wilder in The Independent in 2018, explains her experiences of Executive Dysfunction perfectly.  She was being assessed for ADHD when she wrote the article, in which she described how she lives in constant chaos.

“I do not know where my keys are. I only pay bills once the red ones arrive, and I have zoned out 20 times while writing this. And this is me on a good day. I cope (or, rather, don’t) by mentally flagellating myself, drinking at least six cups of coffee a day to improve my focus, and using six different calendars to keep track of my life”. “Until 18 months ago I assumed that these were all personal shortcomings on my part. I’m lazy, perhaps, or just stupid. Maybe I’m just inherently slothful. Or maybe they’re symptoms of the depression and anxiety that have dogged me my whole life.  It didn’t occur to me that they might be symptoms of a medical issue until I read an article by Maria Yagoda in The Atlantic. As soon as I finished reading it, I cried for two hours straight. Then I called my GP for a referral”.

Robyn went on to say “I do wish I had been diagnosed as a child. It might have stopped me internalising and then beating myself with my teachers’ labels. It might have provided a counterpoint to the awful, critical inner voice that told me I was ridiculous and a time-waster, because I just generally can’t cope with life the way other people seem to".

The fact is, the issue of non-diagnosis of this potentially debilitating condition doesn’t just affect adults.  An international study published in 2018 in The Lancet warned that ADHD in children is going wildly under-diagnosed and under-treated in the UK. After reviewing data from 24,000 patients, 14,000 of whom were children, researchers found that while five per cent of children in the UK have ADHD, only one in 10 are actually treated.

So, if that’s the case as we approach the third decade of the 21^st century, it’s difficult to imagine how many adults with symptoms of ADHD are still undiagnosed – and have suffered mental anguish, bullying, abuse and frustrations with organising their lives as a result.

As someone who works with people with issues related to Executive Dysfunction on a daily basis, and is about to become a Trustee of the Fastminds Adult ADHD SupportGroup in Kingston-upon-Thames, it seems to me that there’s not nearly enough support for individuals and families affected by ADHD and other neurological conditions.

Many of the true stories that we hear at the support group are absolutely heart-breaking – they would barely be believed if you read about them in a book or watched the movie of their lives. 

Some people are so desperate for help and support that they travel miles to attend our Support Group meetings - we had someone recently who drove all the way from Kent *a round trip of over 100 miles) because they said ours was their nearest adult ADHD support group!

How different their lives might be if only:

1. They’d been able to get an earlier diagnosis, and appropriate medication (instead of sometimes self-medicating with food, drink, drugs, stuff – resulting in hoarding behaviours, eviction and even homelessness)
2. They didn’t have to wait months and months (sometimes years) for an assessment 
3. They hadn't been mis-diagnosed with mental health disorders instead of neurological ones.  

1. Presumably this is because the ADHD diagnosis section of the NHS website states "If your problems are recent and did not occur regularly in the past, you're not considered to have ADHD. This is because it's currently thought that ADHD cannot develop for the first time in adults".

4. “The System” (healthcare and benefits) understood the extreme difficulties experienced by people with Executive Dysfunction, and stopped withdrawing benefits at the push of a button (making them jump through hoops to appeal, thereby creating more mental anguish and health problems) and making reasonable adjustments for them (which is what is required for employees in a workplace). 

So, as it's ADHD Awareness Month, I would ask everyone who has been kind enough to read this blog to please share it with your contacts, and spread the word about the urgent need for far more training for GPs about Executive Dysfunction, ADHD and related neurological conditions - and how if misdiagnosed or undiagnosed they can lead to mental health problems.

Fingers crossed as a result, someone from "The System" (NHS, DWP, etc) will take note, sooner rather than later - and improvements will happen. Diagnoses will be made. Medications will be prescribed. Lives will be changed.

Thank you in advance for helping transform the lives of people who haven't chosen to be neurodiverse - they just happen to be blessed to be that way.

#ADHDAwarenessMonth #Diagnosis #ADHD #ADD #ExecutiveDysfunction #NHS #DWP #APDO #neurodiversity

Fastminds Neurodiversity Arts Festival 2018

Cherry Rudge on the Hoarding Ice-Breaker
stand at Fastminds Festival

I feel very privileged to have been allowed to promote the Hoarding Ice-Breaker Form at an amazing ground-breaking event recently (14th & 15th September 2018) - The Fastminds Neurodiversity Arts Festival 2018.

It was organised by the wonderful folks at Fastminds - the Adult ADHD/ASC Support Group I'm involved with in Kingston-upon-Thames.

Performers, artists and people affected by a vast spectrum of neurodiversities and medical conditions came from far and wide for two days of creative inspiration, live music, interactive performances, short film screenings, market stalls, story-telling, poetry, and being themselves - enjoying spending time with people who accept them for who they are, irrespective of their disabilities - hidden or otherwise.

Click here to see the video of the event.

Cherry explaining the Hoarding Ice-Breaker form
to the Mayor of Kingston

The amount of effort, hard work and organising that goes into creating an event like this is phenomenal, and is even more magnificent in this case because of the difficulties with planning and organising that people with neurological conditions such as ADHD and Autism experience.

The festival’s Creative Director - Isabelle Haythorne – did a GRAND job!  She's an art therapist and runs the Sutton ASD group.  Her can-do attitude and her connections with her partner Keith Gould - who has experience of live events and was the festival’s Technical Manager - made it all possible.

Chill-out room

I was particularly blown away by the fantastic chill-out room - where people could go for some peace and quiet – it was a triumph, so many congratulations to Sarah and her team!

Fastminds art

Wonderful original canvas artworks created by members of the Fastminds group were on sale, together with some absolutely STUNNING cards of paintings they'd created to raise money for the event and the group.  The cards are also available to purchase online - click here for the Fastminds section of the We All Send Cards website, or contact Fastminds .

Sheena Crankson with
Mayor of Kingston

Thay Thayalan

Special praise must go to the founder of Fastminds, Sheena Crankson, without whom there would have been no festival and no support group.

Sheena had a life-changing experience when she was diagnosed with ADHD at the age of 47, after her son was diagnosed with ADHD (he also has Asperger’s).  She is the Fairy Godmother and Guardian Angel for the Fastminds group, and works tirelessly to support and advocate for members, especially in their hour of need - whether it be offering help filling in forms; helping members to challenge cuts to their benefits; helping folks get a referral for a diagnosis; sourcing help and support; arranging activities for the group to take part in, or simply being there for them to vent their frustrations. 

Afterward the festival Sheena said “A huge thanks to all the fabulous folks who attended this amazing event, and to all our volunteers who selflessly gave up their time to support us.  We made new friends and strengthened ties with existing ones.

The core aims of this event were to:

• Be user-led by members of our Fastminds support group
• Demonstrate the value of neurodiversity within society and the arts
• Promote the creativity of neurodiverse people, with free art & design workshops
• Promote inclusivity and bring both ‘neurotypical’ and neurodiverse people together
• Enable neurodiverse people’s voices to be heard, particularly by opinion formers and decision makers within NHS
• Enhance partnerships between community, healthcare providers and organisations in neurodiverse contexts in Kingston Upon Thames.
• Exhibit fine art, photography, film and performance (poetry, music, dance, standup comedy).
• Keep the event disability / sensory friendly by making / providing reasonable adjustments

We’re delighted that the two days more than achieved these goals, and we’re already planning further similar events”.

Anna Dyson at her Intuitive Oils stand.
The leggings, bags and cushions were fantastic!

During the festival I was asked to speak in a thought-provoking and deeply moving story-telling session, run by Alex of The Mindful Compass.  One of the story tellers -  talented artist Anna Dyson of Intuitive Oils in Kingston - gave a moving account of her struggles at school where she was unsuccessful with her exams; the difficulties she’d encountered of getting a diagnosis of ADHD (which finally happened when she was 52), Dyslexia, Dyspraxia and Irlen Sydrome, and the challenges she faces on a daily basis getting help and support for herself and her neurodiverse family.

After the festival Anna said "I have laughed, cried, danced, sung, drawn, and been drawn and painted, spoke twice in front of a live audience, watched inspiring films, live music, was blown away by the live art installation The Suit Project, and so much more". 

"I’ve met some of the bravest most courageous, amazing , colourful , intelligent, talented and creative people from all ages and all walks of life. I’ve seen people grow in confidence after exhibiting their art in our gallery, or having their art made into greetings cards, and also taking on other roles that they’re not familiar with.

But most of all been reminded of the massive difference it can make when you are with people who just ‘get you’ just the way you are". 

I'm very grateful to my wonderfully thoughtful friend Anna - who has high functioning Autism (and suspects she may have ADHD too) and raises loads of money for the National Autistic Society - for driving all the way from the other side of Surrey to attend the event.  This was a major achievement, as travelling can be difficult for her due to the sensory overload that goes with it - and of course then the social interaction with members of the public can sometimes be problematic.  Fortunately, she thoroughly enjoyed herself and had a go at making various crafts, listening to music and immersing herself in the amazing atmosphere.

My own personal key takeaways from this wonderful event are that:

• By working together amazing things can be achieved.
• The event brought together some amazing non-judgemental, empathetic individuals from all walks of life: people who had been born with neurological conditions; people who had acquired or contracted them or had been affected by them through family or friends.
• Having excellent local peer-led support groups such as Fastminds empowers people to talk about the problems they experience with like-minded, non-judgemental, compassionate people who have probably experienced similar issues.
• Getting an appropriate early diagnosis and appropriate person-centred help and support – whether it be for neurological conditions; or issues associated with an inability to plan, declutter or organise; hoarding issues or mental health issues – could save the country millions of pounds, as without practical help and support, the implications can include chronic psychological distress; learned helplessness; poor self-care; substance abuse; low self-esteem; employment difficulties and troubled long-term relationships.
• Having the Hoarding Ice-Breaker form at the festival was the right thing to do, as it encouraged conversations about the difficulties that many people with neurological conditions have with organising, planning, decluttering, disorganisation, hoarding and compulsive shopping, and how it affects their health. Some people were in tears talking about it, as I was the first person they’d spoken to who really understood their predicaments and who offered hope (through the services of Rainbow Red) for being able to make practical progress towards achieving their goals.
• Embracing neurodiversity enriches my life, and has made me a more understanding and patient person as a result.
• Amazing people like Sheena should be paid to run support groups for vulnerable people, and not have to give up their precious time without being rewarded for the invaluable service and safe-havens (micro-communities) they offer, or spend their time fund-raising to subsidise their expenses.
• Educating people about neurodiversity and the difficulties faced by people affected by neurological conditions is essential if Governments and future generations are ever going to consider implementing a more holistic and compassionate approach towards supporting people who are neurologically different and vulnerable to abuse.  Abuse like withdrawing or reducing benefits for no good reason, for example.
• It’s about time the Government realised the damage it can do to vulnerable people by cutting their benefits without justification.  The stresses and strains of receiving an inappropriate benefit grade without consultation; the sense of rejection; having to jump through bureaucratic hoops to appeal, and the financial and emotional strain it puts on people and their families often results in their mental and physical health deteriorating (and the health of their supporters too), which must surely increase annual health and social care costs by millions of pounds!

An art installation by wheelchair artist Mary Ellen
which included alarming statistics about the
number of people who have died since
being told they were fit enough to return
to work...

It also puts additional pressure on volunteers like Sheena, who already have more than enough on their plates.

So I hope that sufficient funds can be raised to support Fastminds and make the Neurodiversity Arts Festival an annual or bi-annual event;  that way it will continue to raise awareness of the type of issues that were discussed in the story-telling sessions, and ensure that they get discussed at Fastminds Support Group meetings, as well as at both local and national parliamentary levels. 

For more information about the Fastminds Support Group and their weekly and monthly meetings at Kingston Quaker Centre, check out the events page on their website:  http://www.adhdkingston.org.uk/events.html

If you would like to help support Sheena, the Fastminds Support Group and the Fastminds Neurodiversity Arts Festival, please consider:

•      donating via Local Giving - https://localgiving.org/charity/fastminds/
•       buying their fabulous cards which are for sale online at 

                https://weallsendcards.com/cards/byartist/fastminds

•      buying original canvases of the artwork for the cards – to have a look at what’s available, simply pop along to one of the Fastminds Support Group meetings, or contact Sheena Crankson directly

Meanwhile, scroll down for a few more photos of the festival - hope to see you next year!

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About the Fastminds ADHD/ASC Support Group

FASTMINDS is an acronym for common symptoms that are often seen in Attention Deficit Hyperactivity Disorder (ADHD):

•      Forgetful.
•      Achieving below potential.
•      Stuck in a rut.
•      Time challenged.
•      Motivationally challenged.
•      Impulsive.
•      Novelty seeking.
•      Distractible.
•      Scattered.

www.adhdkingston.org.uk

What is Neurodiversity? 

According to the University of California (San Francisco), there are more than 600 neurological disorders - diseases that affect the brain and the central and autonomic nervous system, and millions of people around the World.  

They're broadly classified into:

•       Sudden onset conditions (e.g. acquired brain injury or spinal cord injury)
•       Intermittent and unpredictable conditions (e.g. epilepsy, ME, certain types of headache, or the early stages of multiple sclerosis)
•       Progressive conditions (e.g. motor neurone disease, Parkinson’s disease, or later stages of multiple sclerosis)
•       Stable neurological conditions (e.g. post-polio syndrome, or cerebral palsy in adults)

Common examples include ADHD; Alzheimer's Disease; Aneurysms; Asperger's Syndrome; Autism; Bell's Palsy; Brain and Spinal Tumours; Carpal Tunnel Syndrome; Cerebral Atrophy; Dementia; Dyslexia; Guillain-Barre Syndrome; Huntingdon's Disease; Lyme Disease; Meningitis; Muscular Dystrophy; Sleep Apnea; Stroke; Tourette Syndrome and Traumatic Brain Injury.

Check out the NHS website for some fascinating facts and statistics about Neurological conditions.