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Thursday 20 September 2018

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:

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

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.

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.   


Saturday 15 September 2018

Fire & Rescue Service - Safe & Well

We're proud to have a great working relationship with the fab folks at our local Fire & Rescue Service in Surrey (UK), and feel privileged to have been allowed to take part in various Fire & Rescue Service training and Fire Station Open Days, to promote the Hoarding Ice-Breaker Form (designed for people to start a conversation with their GP if their health has been affected by clutter, disorgansation, hoarding, compulsive shopping or compulsive collecting.

Rainbow Red's founder - Cherry Rudge - has been working with multiple agencies across Surrey (including Surrey FRS) to create a Hoarding & Self-Neglect Protocol for Surrey, which will hopefully be published in 2019. 

We're also very proud of the safety leaflet that Cherry  co-designed with them, as she contributed practical hints and tips designed to help people get started at decluttering and making their homes safer.

The Fire & Rescue Service offers FREE Safe & Well visits, aimed at allowing people to live safer and more independent lives. The safety leaflets are offered when risks are identified that could result in a fire or accident occuring due to clutter in a home.

Here are some of the photos and videos we've filmed whilst we've been at Fire & Rescue Service events, to help raise awareness of fire safety in the home, and our Hoarding Ice-Breaker form.  

Walton-on-Thames Fire Station Open Day 2018 - Sat 15th September 2018
Chip Pan fire
Hoarding Ice-Breaker Stand ready for action!

Another event, another visiting Mayor! Learning about Telecare


Is clutter affecting your health or wellbeing, or both? Then fill in this form and take it to your GP

You can now follow @HoardingIceBreakerForm on Facebook

Feeling unwell, overwhelmed or at the end of our tether because of clutter, disorganisation or hoarding is a much more common, debilitating and potentially life-changing problem than you might think. 

Chronic Disorganisation 
Chores that some people find easy can be a nightmare for others - like filing paperwork, time-keeping, meal-planning, money management or quickly finding things that have been put away in that safe place - so safe you can't remember where it is! 

Juggling a busy lifestyle or having to cope with expected or unexpected life events doesn't help, and add to that an existing health condition - or one that you may not even know you have - and it can become overwhelming and a recipe for disaster.

We regularly hear of people who feel so anxious or embarrassed about their chronically disorganised homes that they won't allow people in - even when they have no heating, hot water or electricity, and are in desperate need of help and support from trades people such as plumbers, electricians or heating engineers.

It can affect a person's health, their relationships and their ability to function normally - in their home, in their personal life and sometimes at work too.

Hoarding behaviours
And then there's the more extreme end of the clutter spectrum - hoarding behaviours - which involves three main problems:
  • Excessive and compulsive acquisition of items - some of which may appear to be useless or of limited value to many people
  • Extreme difficulty letting them go 
  • Having so many possessions that it prevents or precludes the use of living spaces for what they were designed for

In June 2018 the World Health Organisation (WHO) classified Hoarding Disorder as a mental illness, although only specialists will be able to diagnose it.  

It's estimated that between 2%-6% of the population exhibit hoarding behaviour.  And in England* The Care Act 2014 classifies hoarding as potentially being self-neglect. Which means GPs and agencies coming into contact with hoarders should report patients exhibiting hoarding behaviours who are self-neglecting to the local authority, so that it can be investigated by the local Safeguarding team.

*There may be slightly different arrangements for Scotland and Wales

Concerned relatives, friends & neighbours
It's often concern over a loved one, friend or neighbour who exhibits these behaviours that causes heartache or health problems for the relatives or friends who are at their wits end to know how to help them change.  

Especially as excessive amounts of clutter creates high safety risks, not only for the people living in a property, but also neighbours and public safety services such as the Fire & Rescue Service (FRS) who get called out in the event of an emergency.  

When someone's safety, health or wellbeing is affected, it's time to take action.
The ice-breaker form helps people overcome the awkwardness or embarrassment of not knowing where to start the conversation about health problems related to extreme clutter, hoarding and disorganisation.   

It's important to note that GPs assess and treat patients all the time for conditions which can make organising difficult, such as:

Click here to download a list of examples of some of the medical conditions and other contributory factors that may be encountered when working with people who have clutter, chronic disorganisation or hoarding issues.

So how do you ask for help using the Ice-Breaker form? 
The idea is that people download the ice-breaker formtick the relevant boxes and present it to their GP, or other medical professional. 

The Ice-Breaker form can be downloaded from these websites
We're delighted that our friends at the following organisations have kindly endorsed the use of the form, which can be downloaded from their websites:
  • Hoarding UK - the UK charity for people affected by hoarding, and organiser of the UK's first National Hoarding Conference in May 2018
  • Help for Hoarders - a website for compulsive hoarders and their families 
  • Clouds End CIC - the UK's first social enterprise for helping hoarders, founded by hoarding campaigner Heather Matuozzo, who was a consultant to the BBC for their 2012 and 2013 documentaries, “Britain’s Biggest Hoarders” (the 2012 documentary won the MIND Media award).
  • Hoarding Disorders UK CIC - a Berkshire-based Community Interest Company co-founded by Jo Cooke, author of the insightful and compassionate go-to book "Understanding Hoarding" that has deservedly received numerous 5* reviews on Amazon.
  • Life-Pod Clutter Management CIC - a Scottish social enterprise founded by pioneering chronic disorganisation and hoarding behaviour specialist and trainer Linda Fay - organiser of the International Hoarding, Health & Housing Conference in Edinburgh in October 2018
  • Hoarding Awareness Week - the annual event (originally started by the Chief Fire Officers Association in 2014) to raise awareness of hoarding and reduce the stigmas associated with it.
The ice-breaker can be used to start a conversation about yourself or someone you're worried about if your health has been affected, and includes tick-box statements like:
   It’s hard for me/them to talk about this
   I/they feel alone and need support
   Other people don’t seem to understand
I/they feel distressed, and/or indecisive about what to do to make things better
I’ve/They’ve become secretive/ withdrawn about this situation
   My/their self-confidence/self-esteem is very low
   I/they feel very uncomfortable about/reluctant to change
   It can be hard for me/them to live normally/work/study/travel/pay bills/make or keep friendships and relationships
   I/they have been notified by the Local Authority/my Landlord/other agency that action will be taken if I/they don’t do something soon (explain which agency – eg. bank, landlord, Environmental Health, Family Liaison, boss, etc)
   Family/friends/neighbours have taken (or have threatened to take) matters into their own hands
   I/they don’t feel I/they have anyone to talk to who would actively listen empathetically and/or non-judgementally to my/their concerns
   I feel out of my depth with my knowledge of how to help and/or support my relative/ friend/colleague, or myself 

And asks the Medical Professional to "Please talk me through the types of help and support that could empower me to feel better".

The form also includes an extract from the Clutter Image Rating Scale on the back, as the FRS like to know whenever Level 5 or above is reached, so they can visit and do a Safe & Well visit (also known as a Home Fire Safety visit) and discuss the risks with the resident, advise on actions that can be taken to make things safer, including emergency evacuation plans and perhaps fitting free smoke detectors.

What can the GP do to help?
Helping people whose health has been affected by chronic disorgansiation and/or hoarding is rarely a quick fix.  

Recently we heard about a case where someone (who exhibited hoarding behaviours and had all sorts of health problems due to their complex situation) had completed the ice-breaker and ticked every single box except one.

The GP used the ticked responses in the questionnaire to ask further questions about the patient's symptoms and difficulties, which gave him a better understanding of the problems the patient was facing - which included potentially being evicted.

The GP referred the patient for blood tests; prescribed treatment for various health problems; referred them for counselling for mental health problems (including anxiety and depression), and an assessment for Autism and ADHD.  And because the patient was self-neglecting they were also referred to the local Adult Safeguarding Board.  

A multi-agency team was formed, which enabled the patient to get advocacy help and support, and lead to intervention from specialist Professional Hoarding Practitioners.  

The Professional Hoarding Practitioners used an holistic and practical person-centered approach to empower the patient/client to make decisions which resulted in the number of possessions gradually being reduced, and the safety risks associated with the cluttered property being significantly reduced too - to the extent that the eviction was cancelled.  

The patient continues to have therapy and work with the multi-agency team which is supporting them. As a result, the patient's anxiety levels have reduced, their health has improved and they are now attending a hoarding support group.

Act now, before your health deteriorates any more....
If you or someone you know feels unwell as a result of clutter or disorganisation and don't know who to turn to, please don't poo-poo their difficulties and tell them to snap out of it - it's likely to make them feel worse.

Instead, why not suggest that they click here to download this simple to use ice-breaker document, fill it in and hand it to their GP at their next appointment?

Because life's too short for your health to be ruled by clutter or disorganisation.

SURVEY:  Please let me know how you get on using the Ice-Breaker form by completing this survey (click here).  

                     Thank you.


Past events:
We're excited be having a stand at the following events:
Fastminds Neurodiversity Festival - 14th September 2018 - The Empire, 161a Clarence St, Kingston, KT1 1QT
- Walton-on-Thames Fire Station Open Day - Saturday 15th September 2018
- The National Hoarding Conference on 14th May 2018, at the start of National Hoarding Awareness Week.

Originally published July 2015 - updated May 2018, June 2018, August 2018

Click here to return to Rainbow Red's website

Saturday 8 September 2018

SPONSORSHIP REQUEST for Fastminds Neurodiversity Festival - 14th & 15th September 2018

Here's Cherry Rudge - Rainbow Red's founder and creator of the Hoarding Ice-Breaker form - about to abseil down the side of St Mary's Church as part of Walton-on-Thames Heritage Day 2018. 

And yes, she did manage to get all the way down in one piece!

Please click HERE to sponsor Cherry, who was raising money for the Fastminds Neurodiversity Arts Festival in Kingston. 

The festival is a two-day celebration of all things colourful and creative, and takes place on Friday 14th and Saturday 15th September.

It's been been organised by the amazing folks at FastmindsADHD/ASD  - a voluntary, user-led, support group for people living with ADHD, Autism and co-morbid disorders. They offer support, advice and friendship to Neurodiverse people, their families, friends and colleagues from all over London. 

This will be an open and inclusive community event in the heart of Kingston upon Thames. 

Over the two days there will be: 
  • A fine art exhibition
  • Short film screenings 
  • Poetry
  • Live music 
  • Interactive Performance
  • Creative workshops
  • Market stalls
  • Vegetarian & Vegan CafĂ©

Cherry will be manning the Hoarding Ice-Breaker Form stand on the Friday, raising awareness of the neurodiversity associated with clutter, disorganisation and hoarding.

Do come along to the festival and say "hello", and thank you in advance for supporting this wonderful cause!  
Helpers needed to help the event run smoothly.