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.”

» Read more

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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Government Fails Disabled People Again

About us but not with usDisabled People reject new ‘tick box’ national disability strategy.

Disabled people and our organisations  across the country have expressed outrage at the Government’s decision to go ahead with the launch of a national disability strategy that is not a strategy, does not address key problems, does not reflect the issues and priorities of disabled people and was not developed with disabled people organisations.

We have been waiting for 10 long years for a strategy that will tackle the growing poverty, exclusion and discrimination we face and set out a transformative plan for social justice, equality and inclusion. This so-called strategy does neither of these things.  

The lack of meaningful engagement with disabled people and our organisations in the development of this so-called strategy has been so bad that a group of disabled campaigners are taking the Government to court on the grounds that consultation was so poor as to be unlawful  

A spokesperson for the DPO forum said:

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Long Covid, ELCI and workers’ rights

Chronic Illness Inclusion responds to a report on workers’ experiences of long Covid

The recent Trade Union Congress (TUC) report on workers’ experiences of long Covid marks a milestone in our response to the Covid-19 pandemic.

The TUC’s survey of more than 3,500 workers finds that a third had symptoms of long Covid for more than a year. It is now clear that long Covid can be a life-changing illness. For some, it is creating enduring disability.

Just as importantly, this report is the first time we have talked about disability equality in relation to long Covid. The focus until now has rightly been on improving medical understanding and treatment of the condition. But the time has come to look beyond fixing individual bodies, and focus on changing society’s response to long Covid, Addressing employers’ legal duties towards disabled workers is a key place to start.

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Remote access, ELCI and co-production

Inclusive co-production means using remote access technologies to reach some groups of disabled people in their homes if needed.

Chronic Illness Inclusion is proud to feature in an exciting new open access volume from Policy Press on Covid-19 and co-production.

“Groups most severely affected by COVID-19 have tended to be those marginalised before the pandemic and are now being largely ignored in developing responses to it,” say the editors of Covid-19 and co-production in health and social care research policy and practice.

For this ‘rapid response’ publication, Catherine Hale and Alison Allam were invited to share learning from the Chronic Illness Inclusion Project on digital research methods designed to include hard-to-reach communities. Their contribution: ‘A place where we could listen to each other and be heard:’ Enabling remote participation spaces for research and co-production among disabled people with energy impairment beyond COVID-19 forms chapter 14 of Volume 2.
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Women’s Healthcare Survey reveals ‘medical ableism’

Chronic Illness Inclusion has responded to the Department for Health and Social Care’s inquiry into Women’s health and well-being in England.

To ensure that our organisational submission reflected the concerns of women with Energy Limiting Chronic Illnesses we launched our own survey.

Over one thousand women responded, with hundreds giving details of the difficulties they have experienced in getting diagnoses, treatment and support. They reflected a culture of disbelief and dismissal. Many of the responses were heartbreaking to read. Over the weeks to come we will begin to share some of these responses so that women’s voices, which are too often silenced, can be heard and amplified.

Lead author, Catherine Hale, writes:

» Read more

Disability employment gap – CII gives evidence

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.

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

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.

» Read more

‘Reclaiming Chronic Illness’ seminar

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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