Category: Chronic Illness

‘The Submerged Body’ – free nature writing workshop available online now

Chronic Illness
A screenshot from the workshop showing a prompt slide and Jane Hartshorn

Chronic Illness Inclusion was proud to team up with the Moving Mountains project to host a free online nature writing workshop led by poet Jane Hartshorn this month.

Supported by The Wren Project, the workshop received over 160 signups and saw attendees led through a series of thoughtful writing prompts, aiming to explore how writing about water can help us explore the experience of living in a sick body.

Jane Hartshorn drew on her PhD research at the University of Kent to highlight writers such as Abi Palmer, Nan Shepherd and Elizabeth Jane Burnett, and folklore such as the selkie myth, moving away from traditional religious ideas of water as curative, or capable of bringing about instant salvation, and towards water’s ability to generate more complex understandings of the body and its transformations, more suitable for those of us living with fluctuating chronic illness.

The workshop was funded by Arts Council England, part of a series of workshops run by writer and artist Louise Kenward as part of her project Moving Mountains, which will also see the publication of an anthology of nature writing by sick and disabled writers.

The Submerged Body: Writing Water and Illness, can now be viewed below and on YouTube with full subtitles.

Louise Kenward is writer in residence at Rye Harbour Nature Reserve, and invited those who enjoyed the workshop to sign up for the Rye Harbour newsletter, which also aims to support chronically ill and disabled people in connecting with nature.

The Wren Project, which offers free listening support to people with autoimmune conditions, invited attendees to join another online free event next month, a participatory theatre project exploring the difficult question ‘How Are You?’.

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CII to host free online nature writing workshop with poet Jane Hartshorn

Chronic Illness, ELCI
Photograph of a woman underwater

CII is excited to be working with the Moving Mountains Project to host The Submerged Body, a free nature writing workshop with poet Jane Hartshorn on 23 September, 6-7.30pm.

I felt my body reaching for water as an element of transformation, invested with the power to remake me in a form that I could choose myself.

– Samantha Walton, ‘Everybody Needs Beauty: In Search of the Nature Cure’

Water runs and flows. Its shape is never set, is always in flux. Even within the basin of a loch or pond, the confines of sea or river bed, or the slippery sides of a swimming pool, water moves and eddies, has the potential to spill beyond the shape that carries it.

In this creative writing workshop, we will draw from examples of watery writing in literature to explore the submerged body. We will examine how these descriptions may resonate with what it feels like to inhabit a sick body, and how we might use the transformative power of water to write about the experience of illness.

Jane Hartshorn is a poet and PhD candidate at the University of Kent, writing about the lived experience of chronic illness. Her pamphlets include Tract (Litmus Publishing, 2017) and In the Sick Hour (Takeaway Press, 2020). She has had poems published by Boudicca Press, Dostoyevsky Wannabe, Lucy Writers and SPAM and is an editor at Ache Press. She is on Twitter @jeahartshorn.

For more information, and to register, visit The Submerged Body event page.

The workshop is supported by The Wren Project, which provides free listening support for people diagnosed with autoimmune disease in the UK, and funded by Arts Council England.

Image: Stefano Zocca via Unsplash

ELCI, cognitive dysfunction and disability benefits

Brain Fog, Chronic Illness, DWP, DWP Benefits, ELCI, Energy Impairment

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

CFS, Chronic Illness, Disability Rights, Energy Limiting Chronic Illness, ME, NICE, NICE guidelines

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

Chronic Illness, Chronic Pain, Disability, DWP, DWP Benefits, ELCI, Employment, Energy Impairment, Energy Limiting Chronic Illness, Housebound, Mental Health, NHS, Social Care, Social Exclusion, Systemic Disbelief

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, Disability Rights, DWP, ELCI, Employment, Energy Impairment, Energy Limiting Chronic Illness

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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Disability employment gap – CII gives evidence

Brain Fog, CFS, Chronic Illness, Chronic Pain, Disability, DWP, ELCI, Employment, Energy Impairment, Energy Limiting Chronic Illness, Long Covid, ME

CII were recently invited to give evidence to the House of Commons Work and Pensions Committee. This is the first time that evidence has been specifically sought from people living with energy limiting chronic illness – ELCI.

You can watch our Director, Catherine Hale giving evidence on YouTube.

Catherine’s speech begins approximately 1 hour and 7 minutes into the recording.

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“I already have a job… getting through the day”

Chronic Illness, Disability Rights, DWP, ELCI, Employment, Energy Impairment, Energy Limiting Chronic Illness, Long Covid, ME, Mental Health, Systemic Disbelief

Our latest policy report on ELCI, employment and social security

The ‘I already have a job…’ report, by Catherine Hale (CII), Stef Benstead (CII), Dr Kate Hardy (Leeds University Business School) and Dr Jo Ingold (Deakin University), sets out how government, employers and the benefits system are failing millions of people in the UK with Energy Limiting Chronic Illnesses – (ELCIs).

Although one-in-three disabled people of working age experiences problems with stamina, breathing or fatigue, the report says that their needs are not reflected in the workplace, in legislation, or by disability assessments like the Work Capability Assessment (WCA).

Despite ELCIs affecting almost 5 million adults in the UK, these people are hidden within disability-related policies because their lived experiences of illness and impairment is widely misunderstood, often discredited, denied and disbelieved.

Lack of knowledge about ELCIs and how reasonable adjustments should work, make it impossible for people with these conditions do paid work. The rapid move to home working during the pandemic shows that such change is possible. It is imperative that employers continue such beneficial practices.

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‘Reclaiming Chronic Illness’ seminar

Chronic Illness, ELCI, Energy Impairment, Energy Limiting Chronic Illness, Housebound, ME, Social Exclusion, Social Model of Disability

Our Director Catherine Hale and Dr Anna Ruddock recently took part in an event organised by the School of Health Sciences at City, University of London.

In this seminar they share findings from the Chronic Illness Inclusion Project. Set up in 2017 this was a user-led research action project aiming to give a voice to those with an invisible disability. Fatigue and limited energy were found to be the most common restricting factors for those with a variety of chronic illnesses, but were not often recognised as impairments and were often treated dismissively.

You can watch the event on YouTube

 

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Duty of Care and the DWP

Chronic Illness, DWP, DWP Benefits, Mental Health

The recent inquest into the tragic death of Philippa Day has once again, shown the inadequacies and cruelty of a benefits system that damages the mental health of claimants.

The disability benefits system engenders a culture of systemic disbelief towards claimants, creating a hostile environment towards the very people it is supposed to support. Reports of claimants who complete suicide or starve to death as a result of traumatic assessments or benefit sanctions do not appear to have prompted any change in policy or procedure by successive ministers in charge of the Department for Work and Pensions (DWP).

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