Chairing the ‘Miss Diagnosis’ Panel Event, Disability Stockport 40th Anniversary Festival 2019

Chairing the ‘Miss Diagnosis’ Panel Event, Disability Stockport 40th Anniversary Festival 2019

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DSK40 Miss Diagnosis Flyer thumbnail‘Miss Diagnosis’ – Disability Stockport 40th Anniversary Festival

Thursday 18th July 2019 held at the Plaza Theatre Green Room

An evening of discussion about incorrect diagnosis of women and the journey to receive the correct diagnosis.

I was honoured to be asked to chair a panel discussion alongside other global disrupters.  It was a brilliant yet emotional event.

Thank you to Carol Ann - Disability Stockport @DisabilitySK, Sara McKee FRSA FCIM - Evermore Founder @SaraMcKeeFRSA, Aba Graham - Director Aspiring Boldly Associates CIC @aspiringboldly and Steph Sherratt -  Project Manager at Breaking Barriers @BarriersNW for joining me on the panel.

Great venue @StockportPlaza1, perfect for a confirmed afternoon tea addict like myself.

Women in general put the health and wellbeing of their children and partner first, and when they do visit a health professional there is a good reason for it.

There is a high incidence of misdiagnosis within the general population, but it is not disaggregated in terms of gender.

The most common areas of misdiagnosis in women are heart attacks, fibromyalgia strokes, endometriosis, lupus and MS.

Women cite three main reasons why they feel they are misdiagnosed:

  • There is not enough clinical research or subsequent treatment or advice on gender difference in health conditions,
  • they feel health professionals don’t listen to them or take them seriously
  • or else they think they are complaining about insignificant conditions.


Other factors which can influence misdiagnosis are fear within health professionals about repercussions as a result of getting it wrong.

In the UK, the only avenue for redress and acquiring any resultant support is via legal action - unlike for instance New Zealand, where if things do go wrong, the state puts everything that is needed because of it in place, eliminating the need for litigation and leading to a much more open and transparent system.

There is also a genuine desire to reach the right diagnosis, as symptoms of different health conditions can mirror each other.

As part of setting the scene, I shared a poem I wrote for the occasion titled ‘Misdiagnosis’

Panel members all echoed that a key factor was not being listened to at the point that their instinct, - many a time, over and over again - was telling them something was seriously wrong.

I posed three questions to the panel:

  • A brief summary of their journey/experience to time of diagnosis
  • How it impacted them in their day-to-day lives (at work, at home and socially)
  • Then a broader discussion on what would have made it easier, including the key areas where they felt should improve in order for them to get early and accurate diagnosis and treatments.

The key elements to come out of the Panel include:

  • A feeling of hopelessness; not having their belief that there was something wrong taken seriously enough.
  • Horrific, often life-changing results, following misdiagnosis on top of the impact of developing a medical condition - which is traumatic enough to start with.
  • Massive negative impact in the workplace - in all cases it resulted in losing the job they had been good at; all echoed an experience where they were no longer seen as valuable.

Furthermore

  • All emphasised the lack of relevant information and treatments that suited their individual pathway and circumstances at crucial points in their diagnosis.
  • All cited lack of support to remain in work, and where there was support, the criteria to access it was conflicting and could be removed at the drop of a hat particularly if self-employed.
  • All echoed a negative impact in their home and social lives as they struggled to function and access services they needed following the onset of their diagnosis.
  • The delivery method and approach was seen to be critical in improving women’s experience at the point of diagnosis i.e. having to access support via a call centre and artificial intelligence or recoded message pointing you to the terminally ill department etc.
  • Women need the right information at the right time.
  • All shared experiences of social isolation, as important people in their lives reacted to their diagnosis alongside often cruel and hurtful responses to the presenting symptoms from those around them.
  • All reported having key people, friends and colleagues who had stepped up along the way who had helped them keep it together.
  • All spoke of a loss of the person they were, but gave powerful tributes to who they have become and what they are achieving alongside dealing with the harsh and often relentless reality of life with a disability.

Comments from our panel speakers:

Sara McKee FRSA FCIM - Founder, Evermore  @SaraMcKeeFRSA,

“Lobby - Parity of physical health and mental health. Need to be government backed”

Aba Graham - Director, Aspiring Boldly Associates CIC @aspiringboldly

“Trying to manage memory loss and hearing.  Workplace needs to recognise it and support. If it’s invisible it’s ten times harder. Look at how they treat people”

Steph Sherratt -  Project Manager, Breaking Barriers @BarriersNW

“Creativity. Stop creating boxes and putting people in boxes..The creativity and talent come from the differences”

 

In conclusion, the following are required to improve women’s experiences and reduce misdiagnosis:

  • Clinical research into the gender difference within medical conditions.
  • Treatments which reflect those differences.
  • Timely and easy access to support within the workplace, home and social lives of women who are diagnosed and have to live with their diagnosis, including life-limiting ones which kick in automatically and do not have conflicting criteria and/or sanctions.
  • Women want the right information at the right time, delivered in a respectful and compassionate way.
  • They want a voice and their instinct about their own health to be taken more seriously.
  • Women want changes in Health Insurance schemes particularly around mental health, ideally with a move towards systems like that in New Zealand to eradicate some of the underlying areas of malpractice which impact on misdiagnosis.
  • Women want this to be the start of a conversation and a platform for change in what has to be fair: the current system was developed predominantly by men, based on male experience of presenting symptoms and resultant treatments.
  • Create a Paradigm Shift in respect of health inequalities.

We now look forward to continuing the debate.

July 2019. Jacqueline Winstanley - Founder & CEO  Universal Inclusion @univinclusion

Acknowledgment with thanks to Disability Stockport @DisabilitySK, and The Zebra Partnership @Zebra_carol

 

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Miss Diagnosis

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DSK40 Miss Diagnosis Flyer thumbnailA poem written in advance of the Miss Diagnosis panel on July 18, 2019 in Stockport.

Miss Diagnosis

In the wake of the crashing storm which swept my feet from under me like a gilded scythe, I am Miss Diagnosed

Each rotation cutting deeper than the one before, as I raged against the overwhelming shadow which caressed the contours of my body, reaching deep into the very depth of my soul

The flashing lights that accompanied the inevitable journey, ensconced in the calming reassurance of the humane side of the emergency response

The wave of nausea that accompanies the unbearable pain, as the menstrual fluid flows unchecked within my abdominal walls, now brings me crashing to the floor with the resultant abandonment of all decorum which lies next to the vomit now beside me.

I lay as a wounded bird wrapped in the familiar saltiness of my tears warming my face, as they once again fall silently upon the cold hospital floor, as my thoughts, just as I lose consciousness, move to the incredulity of my plight

A reassuring voice awakens me from my slumber as I glance upon the familiar invading cannula and am soothed by the orchestral tones giving affirmation of my heart rate

The words of the consultant leave me reeling from the procrastinations which linger in the air around me, as if to silence my very being, enveloping me in dark veil of avoidance and delay

My soul cries out in disbelief at the myriad of ears that don't listen, as I travel, as if caught in the headlights through unnecessary tests, excuses, ridiculous procedures - each designed to cast doubt on my instinct and presenting symptoms

A hand on my shoulder found me at my lowest when faced with the only remedy proposed to be psycho-sexual counselling. I was lost in the incongruent swell of communications and despair.

The hand came with a whispered voice, speaking loudly, asking for the opinion of others, and suddenly as the morning mist rolls down from the hills enveloping all in its path, a new swathe of light washed over me.

Whilst liberated by the resultant findings, my world was turned upside down. No apology would quell the sense of loss and fear of what lay ahead when faced with the the reality of the misdiagnosis

My very essence as a woman had been cruelly disfigured, my most intimate of places no longer held the allure or productivity it once did, alongside complications which would blight the rest of my natural years

The greatest shadow cast is one of loss and regret at the journey travelled, and the real and actual harm resultant from the Miss Diagnosis.

 

J. Winstanley July 2019

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Meet Inclusive Entrepreneur: GlamSticks

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Glamsticks by Lady Sharon Farley Mason

"Glamsticks™ is not just a job or a hobby, it has been my saviour. It is my inspiration to fight each day, even on the days when I am unable to get out of bed; to live life to the full and be truly grateful."
Sharon Farley-Mason
Owner, GlamSticks™
www.glamsticks.co.uk

Highly Commended at Inspire Awards 2019

Finalist at EVA Awards for Solo Business 2018

Finalist at EVA Awards for Solo Business 2017 

Winner of @Jacqueline_Gold #WOW Award April 2016

Winner of #BrightPig.com "Business Of The Week" Award May 2016

Winner of #Queenof Mobility Aids Award May 2016

Winner of Mobility Product of the Year 2011, and voted Top Ten Best Mobility Product 2011

Jacqueline Winstanley recently caught up with Lady Sharon Farley-Mason to find out what makes her an inspiring and Inclusive Entrepreneur. Sharon is a member of the Inclusive Entrepreneur community and is being coached and mentored by Jacqueline. 

"On the back of Alzheimer's awareness week I was intrigued to hear about the latest addition to your range of Glamsticks. Could you tell us how and why you started GlamSticks so that our readers can understand not only the concept but the person behind GlamSticks".

"On Good Friday 1999, I went out for a ride on my horse. Unfortunately I encountered a nasty accident that almost killed me. After an initial short stay in hospital, I found out that I had ligament damage to my right knee.I wasn't sure of how I would cope - I was using crutches and had a leg splint followed for almost a year after that. Then the hospital advised me that I don't need any surgery, and was told to leave it to heal."

Sharon began to fall over regularly, and this progressively worsened her condition. In 2008, the hospital changed their advice and in 2009 she had an operation to repair her post lacruciate ligament. She had hoped this would give her a new zest for life and her condition would improve, but sadly this was not the case. She left hospital again with her leg strapped up, in a splint and needing crutches. After that, her mobility deteriorated rapidly.

This was certainly not situation she had foreseen. She had a young family to care for as well as a full time job. As her condition worsened, her employers thought it best to medically retire Sharon. Naturally this is not the sort of news one wants to hear at such a young age. Feeling mentally fit, the thought of being ‘disabled’ added a strain to the whole family.


So what led you to Entrepreneurship?

Sharon was drawn to design during a ‘eureka’ moment which happend when she obtained a cover for her mobile phone. Her creative flair took over and she customised the cover with gems and jewels. The finished product was posted on Facebook and she was inundated with requests to make similar ones for family and friends.

At around this time, Sharon also heard about a lady who wished to sell her business due to health reasons. She didn’t hesitate in grasping this opportunity, and GlamSticks traded hands and became her passion. The business grew in a short space of time and gained great accolades from customers.

Glamsticks Twitter HeaderGlamSticks is a one stop shop for fab and funky Bespoke Mobility Aids...from crutches, walking sticks and wheel covers to visual aid canes. Whether there is an important business or social function to go to, or a wedding to attend, or just a night out with friends, there is now a mobility aid that adds style and glamour to any outfit!  With testmonials pouring in from many delighted clients, GlamSticks is a great success.  And this success was also noticed by the industry, and Sharon has been recognised with awards for her unique and bespoke mobility aids. There is also an endorsement by the Blue Badge Style

Along Sharon's journey, she was asked to bespoke a running blade in Swarovski crystals. This was a challenge she could not refuse, and the only fully-encrusted in Swarovski crystals running blade in the UK was born - in fact it could well be the only one in the world!

Sharon's passion with gems and jewels means that she can cover anything and make it look stylish and fabulous.  With commissions and bespoke items such as shoes and clothing, the range is expanding to fit the growing demand.

Sharon, you are now a member of the Inclusive Entrepreneur Community. How has that helped you in your journey as an entrepreneur?

"I first met Jacqueline through a mutual friend. At that time, I reached out to her as I thought she would be an ideal ambassador for my business. In turn Jacqueline, who is quite passionate about Glamsticks, introduced me to her organisation Universal Inclusion, and the Inclusive Entrepreneurs Community, of which I am now a member.

Jacqueline’s knowledge and assistance have been tremendous - from her advice regarding  available support to her handholding throughout the Access to Work Award application. If it hadn't been for Jacqueline's expertise and capabilities, I would have fallen at the first hurdle. Throughout the process, she has kept me calm when my anxieties have been very high. She knows exactly how these awards work and has an amazing way of not letting bureaucracy or conflicting criteria thwart the stated intent of the award to enable disabled people to become successful entrepreneurs in their own right and to be fully supported while doing so.  

I have since embarked on the Inclusive Entrepreneur programme as a disabled entrepreneur and Jacqueline is helping me take my business from a small "Cottage Industry" set-up to one that is larger and more visible, much more than it has ever been before."

Your latest venture has so much potential, particularly in terms of supporting people living with Alzhiemers or Dimentia. Can you explain how it works and the difference you think it will make?

Sharon's latest addition to her range of products will add so much to people suffering from restricted mobility associated with Alzhiemers.  As she said, "There is so much potential to enhance the quality of life for everyone, particularly in terms of supporting "Alzheimer's Society, United Against Dementia".  Whether restricted mobility (initial) dementia or disorientation, the item will serve as a faithful companion in everyday life and as a lifeguard in an emergency. This new item works with your computer or phone and could change lives."

If you would like to contact Sharon, you can email her on This email address is being protected from spambots. You need JavaScript enabled to view it. or call her on +44 (0)7903 143 322. You can also follow her on social media:

Twitter: https://twitter.com/Glamsticks

Facebook: https://www.facebook.com/GlamSticks

Instagram: https://www.instagram.com/sharonfm1_glamsticks/

 

Back to The Inclusive Entrepreneur Page

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Speaker and Panel Moderator at Disability Stockport Women's Day Event - Miss Diagnosis

Speaker and Panel Moderator at Disability Stockport Women's Day Event - Miss Diagnosis

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DS40 Viewpoint advert V2 for Kieran June 2019Jacqueline Winstanley leads a panel discussion on women's health issues on Thursday 18 July between 6pm to 9pm during the WOMEN & DISABILITY EVENING.

The Miss-diagnosis /Womens Health themed evening is part of the 40th Anniversary Events taking place in Stockport during July 15 to the 20th. 

As a global disruptor and recognised expert and consultant on accessibility and inclusion challenges, Jacqueline will open the discussion and lead the panel to explore the various aspects of women's health in Stockport and the UK, the challenges they face as they seek answers and treatments, and potential way forward in terms of long term care.

As Jacqueline said, "I would like our panel to be a conversation with focus, integrity and purpose, intended to bring about positive change. This particular aspect of life as a disabled women is so often ignored in the wider debate and yet it is crucial to establishing a positive way forward following diagnosis. The panel will make recommendations to policy makers and health professionals, and this will convey a powerful message to those who find themselves navigating the diagnosis lottery at a time when they are often at their most vulnerable." 

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Reclaiming The Game

Reclaiming The Game

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As the FIFA Women's World Cup 2019 gets under way, we again pay homage with a poem to the #Female #Warriors that have paved the way to get this stage.

Reclaiming The Game

First recoded as swirling embroidered silk surrounding the Han Dynasty Female Warriors who entranced all around them

as their grace, skill and strength in cuju transfixed a thousand gazing eyes.

On Scottish Highlands amidst the swirling mist, music flowing through the ancient pipes as a rite of passage engages equals in an age-old tradition,

as female warriors lay claim to those whose eyes were caught, as the game so nimbly and skilfully unfolded before them

Cloaked in Patriarchy, forming a sea of petticoats intended to quell the raging storm of opposing teams within the game of men,

out of which emerged female warriors who embraced the ethos of the game beyond expectation,

uniting both in numbers and defiance of the misogyny that raged against them, as so cruelly what was freely given was taken away.

Steeped in feminism and quest for equity rose a swathe of excellence and governance under Honeyball, Dixie alongside the roar of a generation of boot clad warriors filled with integrity and purpose

This social camaraderie, philanthropy and reported skill lay dessimated, as the recipients of their philanthropy colluded with the male establishment to once again place the coveted out of reach

As the sound of marching feet, guns firing and the battle for the free ensued within the tragedy and sacrifice of war,

the changing face of women who now toiled the fields, the munitions factories, administration and code breaking,

sought once again to continue their endeavours through the game

Integrity and purpose echoed throughout factories across the land, supported now by governments and press alike, fuelled by conscription, gate fees and charitable endeavours which soared as the Dick, Kerr Ladies excelled

Unable to speak up to the incredulous act that followed, which ripped the very heart out of the Women’s Game via unsubstantiated and questionable intent

The voices of booted warrior women raged against the inequalities of the time, bringing down the wrath of the FA once again, caging the very essence of the Women’s Game as if pricked upon a spinning wheel

Behind the thorns of confinement the collective voices raged, thwarted at every attempt to overcome the injustice as their wings which once soared freely on fields across the land were bound by Patriarchy and lies for 50 years

Walking out today in the footsteps of the Warrior Women who have fought the bravest of battles to pave the way, we pay homage to their memory and continue to fight for equity within the game, with every goal scored by our modern day role models who bring incredible talent, integrity and purpose to the pitch.

 

J Winstanley June 2019

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