The wilderness of medically invisible disability

The Wilderness of Medically Invisible Disability. Portrait photos of speakers Catherine Hale and Alison Allam

Disbelief and disregard in relation to medicine, chronic illness and disability

This video, with transcript below, was part of a webinar held by Liverpool University on 24th May 2022.

Transcript

Hi, I’m Catherine Hale. I’m the Founder and Director of Chronic Illness Inclusion. My colleague Alison and myself are very excited to be embarking on a two-year research project, a collaboration with Bethan Evans at Liverpool University and other colleagues. My colleague Alison is going to talk you through the research on healthcare experiences of women with chronic illness, chronic pain and other energy limiting conditions.

This research was the catalyst for the project that we’re going to be embarking on. But first I want to give you some background on why this research was so important to our community. So the title of our talk, “The wilderness of medically unexplained, [sorry] medically invisible disability” is taken from an article in the British Medical Journal by Lisa Steen in 2016 and her article was called “The wilderness of the medically unexplained”.

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Act Now on disability poverty

Join the Disability Poverty Campaign. Write to your MP using our campaign too. Demand an emergengy uprating of benefits of at least 8% to match inflation

by Joel Lamy

The other day a work colleague told me she had finished at 5pm, instantly fell asleep then woke up just in time to start again the next day.

She has a hidden disability – and her experience is not unique – for many, the need to work full-time leaves them shattered and without the energy to even cook their food, never mind leave the house.

Not only is this an isolating and mentally-draining experience, it also means higher fuel energy usage – a problem when bills are soaring and unlikely to come down any time soon.

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Webinar on disbelief and disregard in healthcare

Challenging Disbelief and Disregard in relation to Medicine, Chronic Illness and Disability

photo of a stethoscope resting on top of a medical textbook

Free webinar 24th May 1-3pm BST

Chronic Illness Inclusion is jointly hosting a webinar with Dr Bethan Evans and colleagues at Liverpool University’s Centre of Health, Medical and Environmental Humanities.

This event brings together academics and activists working in relation to disbelief and disregard in medicine, chronic illness and disability. It will focus in paticular on the relationship between disbelief/disregard and energy, understood in two ways: first in relation to chronic illness/disability that involves energy limitation, and secondly in relation to the ways in which activism and advocacy in relation to medicine, chronic illness and disability takes, and depletes, energy.

The event will involve two roundtable discussions, with opportunities for the audience to ask questions.

Organised by: Dr Bethan Evans, Catherine Hale and Alison Allam (Chronic Illness Inclusion), Dr. Lioba Hirsch and Dr Morag Rose (University of Liverpool), Dr Ana Bê Peirera (Liverpool Hope University).

Speakers include (in addition to the organisers):

Brianne Benness (No End in Sight),

Dzifa Afonu (Healing Justice London),

Leonora Gunn (University of Leeds and Leeds Disabled People’s Organisation),

Katherine Cheston (Durham University),

Aaliyah Shaikh (City University, London),

Dr Emma Sheppard (Coventry University)

Aleyah Babb-Benjamin (National Voices),

Jenny Ceolta-Smith (Long Covid Support).

Accessibility

Recorded presentations from speakers will be made available ahead of the event for people to watch at their own pace.

BSL interpretation and auto-captions will be enabled.

To read more about the event visit The Centre for Health, Medical and Environmental Humanities website

To register for this event click here 

Will the future of work include people with energy limiting conditions?

We need to ensure that the flexible working future includes disabled people

photo of an open laptop and a phone on a bed

Flexible working is the future; most businesses as well as workers seem to agree. We need to make sure that this future benefits and includes disabled people, especially those of us with energy limiting conditions (ELCs).

Our research with Leeds University Business School demonstrated what people with ELCs want, and need, in order to be able to hold down a job. In short, they need adjustments are to the time, pace and place of work. Indeed, working from home, working reduced hours and having autonomy over the time and pace of work are the main components of ‘flexible working’ as defined by the government.

We were so used to our requests for various elements of flexible working to be refused by employers before the pandemic. It was too difficult, they said. Then, almost overnight, working from home became the new normal in March 2020.

This digital transformation opened up so many new horizons and opportunities for those of us who live in permanent lockdown due to an ELC. If home working and flexible working move to a more permanent footing, will this translate into more job opportunities for us in future?

Making flexible working the default

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2021 – a year at Chronic Illness Inclusion

2021

Our mission at CII is to shape policies, perceptions and practices to improve the lives of people with energy limiting conditions.

Our vision is a world in which our experience of disability is heard, believed and understood, our rights as disabled people are upheld, and our lives have equal value.

We took a look back at everything we did 2021 to realise this vision and take forward our mission. Bearing in mind we are a grassroots organisation, run entirely by volunteers living with chronic illness and energy limiting conditions, we have a lot to be proud of.

 

Here’s a round up of our activities over the year:

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Changing society’s reponse to energy limiting conditions

Results from a survey by Disability Rights UK and Chronic Illness Inclusion

Disability Rights UK and Chronic Illness Inclusion are pleased to present the results of a survey of 1,710 people living with energy-limiting chronic illness (ELCI).

The high volume of responses to our survey provides us with a mandate, as well as a roadmap, for social justice and change from this large, but often neglected, group of disabled people.

Our findings clearly show that the vast majority of disabled people with ELCI encounter socially constructed barriers to wellbeing and participation in society, beyond the impact of their symptoms or impairment. Many of the barriers are unique to this group.

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ELCI, cognitive dysfunction and disability benefits

Chronic Illness Inclusion responds to the Department of Work and Pensions’ Green Paper on Health and Disability.

 

Summary: disability benefit assessments must be redesigned to account for the cognitive fatigue and dysfunction that limits work and daily living with ELCI.

In October CII submitted a comprehensive response to Shaping Future Support, the government’s proposals on the future of disability benefits. We also contributed to a response by the DPO Forum, a coalition of Disabled People’s Organisations, of which CII is a member.

Both of these responses addressed key concerns with the systems for PIP and ESA (and its equivalent under Universal Credit) that affect all disabled people. We responded to proposals about advocacy support and for making the claims process less burdensome. We especially highlighted the lack of any mention of the need to alleviate poverty and destitution among disabled people who are too unwell to work or are excluded from employment through discrimination. We argue that the level of financial support for disabled people in the social security system must be urgently and substantially increased.

In our own response we also highlighted an issue that particularly affects disabled people with ELCI and other energy limiting impairments. That is the fact the assessment criteria, known as the ‘descriptors’, used by both PIP and WCA are not designed to capture and account for our lived experience of impairment and disability. This is widey known.

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When NICE becomes nasty

The extraordinary decision of NICE not to publish the ME/CFS Guidelines is dangerous and quite disgraceful. They were due to be published on 18th August 2021, but without any reasoned explanation, that didn’t happen.

The draft guidelines, which were published on 10th November 2020, made some clear changes to the way that people with ME/CFS should be treated by healthcare professionals. They removed CBT as a ‘cure’ for ME/CFS and accepted that GET – graded exercise therapy – was not an appropriate treatment either. Both of these changes were welcomed by many patient groups and DPOs.

So, why were the guidelines not published? We can only speculate as to the true reason and that may not be a wise option from a legal perspective. We fear that undue influence has lead NICE into some very murky and nasty ethical waters.

What we do know is that copies of the guidelines have been sent out to a large number of recipients via 280 stakeholder groups, subject to confidentiality agreements which were due to expire on publication at 12.01am on 18 August, and that there has also been press reporting of the guideline. So the information is already in the public domain.

We call on those stakeholders and individuals to be open and accountable to the very people they seek to represent. You have a public duty to disclose and publish the full guidance, so that people with ME/CFS can have the knowledge they need to advocate for themselves.

  1. We call on NICE to publish immediately so that everyone can see what the current document says and understand what the argument is about. The public interest in knowing this is overwhelming and the current statement fails to address community concerns.
  2. In the absence of NICE doing this, call on stakeholders who have the document to publish en masse by agreement and at an agreed time in order to provide universal access. 

We would also urge all those who are affected by the failure of NICE to publish these guidelines to contact their MP. It is vital that this matter can be raised immediately when parliament begins its next session on 6th September. The ME Association have a great template letter you can use: https://bit.ly/3ktpBAz

Please also sign this petition:

https://www.change.org/p/the-national-institute-for-health-and-care-excellence-publish-the-nice-me-cfs-guideline-now

Voices from the edge

Reading through the free-form responses to our Women’s Heath Survey has been a heartbreaking task. The stories from women throughout England were both shocking, but unsurprising in equal measure. Shocking because of the difficulties in getting a diagnosis, (and these were about pre-pandemic experiences) either because of a GP refusing to take symptoms seriously or because of a lack of suitable specialist clinics. Unsurprising, because these are stories I hear daily from my friends and colleagues in CII. Why do women with chronic pain in Suffolk not have accesses to the same services as women in London? Why can you get a diagnosis as an adult for EDS if you live in one county, but not if you live in the next-door county?

We received 1,871 responses that covered 6 different aspects of the difficulties that women with chronic illnesses face. The overall theme was that of medical ableism, a failure to understand our conditions or listen to our experiences.
These quotes are the voices of those women, they deserve to be heard.

Disbelief

Being disbelieved seems to be a rite of passage for so many women with chronic illness and/or chronic pain. These are just a few of the responses that were given to our question about the impact of being disbelieved;

“Being disbelieved makes you question everything you know about yourself and your conditions and leads into a dystopia which undermines everything in your life.”

“I have developed anxiety about being believed & taken seriously especially with professionals, I struggle with a sense that I am seen as worthless by society in general. I have become apologetic and unassertive.”

Disbelief has a very negative impact on psychological well being;

“I used to be extremely independent and I’m finding my self-esteem has gone down a lot since I’ve needed help. There are such a huge amount of physical obstacles in the way when you have to use a mobility scooter or a wheelchair, it makes you feel that society doesn’t want you around and sometimes it makes you feel like you don’t want to be around.”

Self-blame is also common;

“It took a long time and a lot of heartache to get my head around the fact that my life didn’t look like I thought it would, and the fact that I was constantly being gaslighted by medical professionals and especially the DWP meant that I did and still do struggle with the idea that this illness is somehow my fault.”

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Making employment work for energy-limiting conditions

Chronic Illness Inclusion has influenced a report on disability employment by the Work and Pensions Committee

In April this year Catherine Hale gave evidence to a committee of MPs. She spoke about the measures needed to create more job opportunities for people with energy-limiting chronic illness (ELCI).

A graph showing the gap between the number of disabled people in work and those out of work

Source: Disabled people in employment, Briefing Paper 7540, House of Commons Library, May 2021

In July, the Work and Pensions Committee, chaired by the Rt Hon Stephen Timms, published its report into the disability employment gap. The disability employment gap is the difference between the proportion of disabled and non-disabled people in employment. It currently stands at nearly 30 percentage points.

The Committee based its recommendations on evidence from a number of experts and charities. The report includes recommendations on the collection of data about disabled people in work; employment support and Jobcentre Plus; the Access to Work scheme; the impact of Covid-19 on disabled people in work; and the disability benefits system, and more.

The fact that CII was included among the large national charities giving evidence was a big step forward for the chronic illness community. ELCI, or energy impairment, has not previously been considered by politicians or policy makers as a distinct group of disabled people, or ‘impairment group’,  with specific needs.

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