Call for Support for Disabled People in Enterprise within BEIS

Call for Support for Disabled People in Enterprise within BEIS

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As Disabled People are effectively silenced by the latest conflicting guidance within the Access to Work award, we once again call for support for Disabled People in Enterprise to be placed within BEIS.

It’s hard to imagine that in a year when we celebrate the many achievements of disabled people, once again we see conflicting criteria within the Access to Work (ATW) award. Contrary to its stated intent and potential to lift disabled people out of poverty, it is now acting in ways which serve to remove the right to Advocacy and or Third Party Consent to assist with the application process.

It was shocking to be informed by advisors at the contact centre that this essential support, provided at the point of application and throughout the duration of the award, including review, ceased to exist three weeks ago. This move left disabled people and others who require support in the process unable to access the very support they require at the point of entry to the award or at review.

This move also comes amidst the ongoing difficulties faced by users of the service, which were outlined again recently at a focus group organised by the Inclusive Entrepreneur Network in the UK.

Sadly whilst the key area of practical support to disabled people in enterprise remains within the Department for Work and Pensions (DWP), these enterpreneurs automatically fall within a perceived regime. Focus group members consider this to result in a disproportionate regard to a false perception of misuse of the award. This view, according to the focus group, is over and above the stated intent of supporting disabled people into employment, increasing innovation and economic growth. They also see that this injustice is likely to continue.

So why is this such a blow to disabled people? We are tasked to create Inclusive Economic Growth and the ‘Paradigm Shift’  within the UN 2030 Agenda. This directive falls directly within basic human rights and the UN Sustainable Development Goals (SDGs) signed up to by our Government. With this change in policy, this moves the UK out of reach of attaining these goals and delivering the support required for disabled people to achieve economic independence, effectively silencing them in the process. 

More importantly, why does this remit fit within the Dept. of Business Energy and Industrial Strategy (BEIS) and not the traditional realms of the DWP? 

To answer this, let us first explore what we mean by Inclusive Entrepreneurship.  

It is everything that Entrepreneurship can be - a concept or innovation; humanitarian, financial or socially-driven. It can lead to very simple yet practical innovation such as replacing plastic straws or introducing game-changing inventions like the smart curve mammograms.

It embraces failure as an essential step towards greater innovation. 

Remember people like Sir James Dyson, Dr. Shirley Jackson, Thomas Edison, Marie Curie, Stephanie Kwolek … the list goes on. Along the way, they all have experienced failure, time and time again, prior to achieving their great successes.

The only and critical difference for disabled entrepreneurs is that they will require support both to become and remain an entrepreneur. 

The resultant contribution to the growth of the economy from such enterprise is what we term Inclusive Economic Growth

In the UK, there is a significant employment gap for disabled people. Disability Rights UK (DRUK) states that there were an estimated 3.7 million people of working age (16-64) with disabilities in employment between January-March 2018, an employment rate of 50.7%. The employment rate for people without disabilities was 81.1%.

Government has given a commitment to halving the employment gap that currently exists for Disabled People by 2020*. Yet the National Audit Office reports that the number of disabled people out of work has remained relatively static at 3.7 million and any growth of disabled people within the workplace is more likely to be down to more people who are already in work declaring a disability.
 

We also know from the Joseph Rowntree Foundation that one in six people who become disabled while in work will lose their jobs within the first 12 months of diagnosis. 

We know that the world of work is changing and we are seeing massive growth within the private sector, particularly within SMEs.

Business Population Estimates for the UK and Regions in 2018*:

  • Small businesses accounted for 99.3% of all private sector businesses at the start of 2018. 99.9% were small or medium-sized businesses (SMEs).
  • Total employment in SMEs was 16.3 million; 60% of all private sector employment in the UK.
  • The combined annual turnover of SMEs was £2 trillion, 52% of all private sector turnover.

*above figures from FSB Report 2018

The Inclusive Entrepreneur Program, piloted in the UK, identified the key issues faced by Disabled Entrepreneurs. We have previously made recommendations to Government on how this could be improved, including making an earlier call to place the Access to Work award within what is now BEIS.  

INCLUSIVE ENTREPRENEURSHIP PILOT

The UN Committee on the Rights of Persons with Disabilities (UNCRPD) ratification in the UK requires Government to present a rights-based response to the employment gap for disabled women.

Sadly, evidence shows that the Employment Support programmes within the DWP are not having the desired impact in terms of reducing the Employment Gap for Disabled People. Furthermore, service user feedback within recent Select Committee Investigations; presentations to the UN Inquiry on UK progress on fulfilling its commitments to the UNCRPD; and subsequent recommendations all point to Disabled People being highly dissatisfied with the current programmes and their internal administration. They consider them to be more in line with disability-related benefit programmes - filled with conflict, threat of sanctions, citing recent and ongoing restructure of the ATW award, creating chaos and mistrust.

If we then look at the allocation of funds intended to redress this, we are told by government that they spend millions on Employment Support Programmes designed to reduce the number of disabled women on out of work benefits. This may not an unsubstantial amount, until you see what the Government allocates to BEIS to support economic growth, which depending on the various figures released, is between £91.3 and £180 Billion.

And it’s here where I would like to position the Paradigm Shift and outline how BEIS can support disabled people in enterprise to achieve it. 

When we move out of the realms of the DWP, we are met with terminology and working practice which instantly uplifts and implies a sense of value, purpose and hope. 

Quite simply, BEIS gets it. It comes at it from a different starting point. Its primary concern is not how much of a burden a person is within the Welfare Bill; instead it concerns itself with what disabled people can do, how they can contribute to innovation and increase Economic Growth. 

I have outlined below the elements which will enhance the current portfolio of programmes within BEIS and or inform future development in this area:

  • The creation of a Task Group to champion and enhance existing and future opportunities within BEIS, led by Disabled Entrepreneurs.  The task group must work with disabled people to develop measures which support innovation and Inclusive Economic Growth.
  • Targeted business support programmes which

o   include the management of health and wellbeing, alongside traditional start-up advice. These must be well publicised, accessible and have the desired level of flexibility that will be required.

o   include elements to fund business compliance, professional development and the day-to-day management of the award.

o   encourage innovation, and which recognise value and purpose of failure along the way without penalty or limitation in scope or location.

  • Access to finance programmes which are sympathetic to life-experiences and acknowledge that most disabled people will not have the financial footprint that traditional funding streams require
  • Funding for practical support which understands the very nature of Inclusive Entrepreneurship and the complexities for disabled people within the workplace, particularly for those who have life-limiting and fluctuating conditions.
  • An Advocacy and Third-Party Consent Mechanism that is embedded within any enterprise support programmes and/or Access to Finance stream.
  • Provide easy access to mental health support and holistic treatments to minimise the impact of managing the day-to-day challenges that come with being an Inclusive Entrepreneur.  
  • Recognise that traditional methods of evaluation and existing benchmarks based on the way non-disabled people run their business cannot be applied to disabled people. There must be separate evaluation tools and benchmarks that are fit for purpose.
  • Create open and realistic pathways, both by way of levels of award, and autonomy within personalised budgets with quick and easy access to additionality.

Inclusive Entrepreneurship, if supported effectively, offers a real and sustainable way forward in reducing the employment gap for Disabled People. 

The simple measures suggested can be implemented quickly, both within existing and future developments within BEIS. They can also bring about a swift and sustainable way forward for Disabled Entrepreneurs. 

In doing so, we will see an end to the current conflicting criteria and restrictive practice currently experienced by Disabled Entrepreneurs - the most notable of which has been the rather short-sighted insistence within the Access to Work Award that Disabled Entrepreneurs are given less time to evidence business viability than their non-disabled peers. This criteria is not clearly defined, and is subject to the discretion of each individual advisor. Sadly, should this not be evidenced, the Disabled Entrepreneur may not try again for five years, (yes that is not a typo - five years!). 

Significant innovation comes to mind which would never have come into being had that criteria been applied, not least of all, the very tool and medium I am using to present this Call to Action. 

Imagine if the cure for cancer is in the gift of a disabled woman in enterprise - not on the first time that she tries, but on her second attempt - and we did not go that extra mile to support that innovation. 

Crucially, and in conclusion, BEIS has within its reach an opportunity to embrace this Paradigm Shift within the 2030 Agenda. It is best placed to bring together the partnership between the Disabled People in enterprise and their aspirations, and the practical measures needed to turn this vision of reducing the employment gap into a reality. 

At this time, I ask Government, specifically

  • The Prime Minister
  • Secretary of State for Work and Pensions and Minister for Women and Equalities 
  • Minister of State for Disabled People, Health and Work
  • Minister of State for Countering Extremism and Minister of State for Equalities
  • Secretary of State for Business, Energy and Industrial Strategy, The Minister for Disabled People,

to Support our Call to Action

  • To Reinstate the use of the advocate and third-party consent process within the Access to Work award giving back Disabled People in Enterprise their voice.
  • To Create opportunities for Disabled People in Enterprise in line with our recommendations.

Jacqueline Winstanley - July 2019

Entrepreneur, Humanitarian and Global Disruptor 

email: This email address is being protected from spambots. You need JavaScript enabled to view it. for further details

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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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‘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

Miss Diagnosis

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A 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 our Inclusive Entrepreneurs: GlamSticks™

Meet our Inclusive Entrepreneurs: 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

Jacquline Winstanely 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™ 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 Jaqueline, 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 Jaqueline'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/glamsticks/

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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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