It’s Our Community
Catherine Hale spoke at It’s Our Community, a conference on social care reform. Catherine explained the high prevalence of energy limiting conditions and the psychological impact of not being believed.
I was a social care user back in the 1990s. I’ve had my chronic illness for over three decades and when it was really acute, and I couldn’t wash feed myself, or go to the loo, I had a care package. But later years when things were less severe, my needs were harder to grasp because my impairment was invisible and poorly understood. The social care system completely let me down. As a disabled lone parent I had no support.
I became a disability activist and realised my experience as a person with a misunderstood chronic illness was common. In our online communities, people with different diagnoses share the same experience of fatigue, limited energy and pain. We also share the same experiences of social injustice and oppression. A lot of that oppression is based on disbelief and denial of our impairment and our disability. In 2017 I founded the Chronic Illness Inclusion Project in order to address this and have our voice heard.
Who is the chronic illness community?
One in three disabled people have ‘impairment of stamina, breathing or fatigue’, according to the government’s own research on disability. With Chronic Illness Inclusion we developed the term ‘energy impairment’ because many of us find there’s too much negative cultural baggage around the terms ‘fatigue’ and ‘stamina’.
Many disabled people experience some element of energy impairment. When it’s the main feature and most restricting feature of a condition we call it energy limiting chronic illness (ELCI). You may be familiar with ME, fibromyalgia and lupus as some examples of ELCI.
If you ask people with ELCI what their vision for social care reform and independent living is, most people don’t know about the principles of independent living. That’s because most of us aren’t getting any statutory care or support at all, let alone an approach that offers self-directed support, choice or control over our assistance. Of course, part of the reason is that cuts to local authority budgets have decimated social care funding and services for all disabled people. But there’s something more going on for people with chronic illnesses like mine. That’s what I’m talking about today.
You might be thinking isn’t it just because our needs are not severe enough to qualify for social care support? So I will share some research to challenge that view. It’s based on a survey I did with Action for ME in 2015.
Action for ME, 2015. N=870
Yet of that 97% that had 2 or more difficulties only 6% had a care package. Only 16% had even had a social care assessment.
Even in today’s climate of austerity, this suggests an exceptionally high level of unmet need in our community.
The tiny percent of people with ME who got through the barriers to get a social care package, more often than not were met with a service that was completely inappropriate to their needs and even damaging to their health. I’m talking about reablement – short-term support aiming to decrease dependence on care, sometimes called enablement services. Reablement is a fine idea for people following stroke, injury or operation. But it is not a cure for ELCI. People with ELCI typically ask for support only after battling for years to remain independent, only to find they’re being pushed to do more for themselves once social services become involved. Even worse, reablement means you have to do activities of washing and dressing in a short time frame of a care visit, with no rest in between, which for someone with severe ME can cause relapse. Our respondents said being put through reablement was worse that no care at all.
A major factor in this neglect and mistreatment is a lack of understanding of energy impairment. This applies not just to ME but to most ELCIs.
When you look at language and concepts of disability used in policy making and within the sector generally, it is striking that energy impairment and ELCI are missing.
Impairment types are typically divided into the following categories – mobility, mental distress, sensory impairment, learning disability. There’s almost never a category that captures our experience, despite the fact that one in three disabled people has impairment of stamina or fatigue. It’s little wonder that when it comes to social care assessments and care planning our needs are not acknowledged.
Energy impairment is distinct from other forms of impairment. It involves the rationing of extremely limited energy to achieve basic tasks of daily living that others take for granted, like washing, dressing, or preparing a meal. You may be able to do any of these given tasks but only at the expense of doing another. What care professionals don’t understand is that we may be able to perform all basic tasks, but not on the same day, or even week. Or we may be bedridden for three days afterwards.
There’s also no understanding of the cognitive dysfunction involved in ELCI. For half of our respondents, cognitive problems meant they couldn’t even navigate the bureaucracy of assessments and planning. Yet they didn’t qualify for independent advocacy because ME is not a recognised form cognitive impairment like dementia would be.
And there’s no understanding of the sensory intolerance and sensitivities with ME and many other ELCIs that make care needs complex and challenging.
All these experiences and needs are ignored and discounted because we don’t have a label that identifies us as a cohort of disabled people.
And closely tied to that there’s the systemic disbelief.
Nearly 60% of those had been turned down for care package attributed this to disbelief and dismissal of their account of their needs. Disbelief is also a formidable barrier when it’s internalised. 2 in 5 respondents said they couldn’t ask for support because they were too anxious about being judged as undeserving, faking, or otherwise not genuinely disabled.
We call it systemic disbelief because it’s rooted in the way medicine constructs knowledge about the body and disease, and the authority that medicine has over other areas of society and social policy. Within medicine, experiences like fatigue that can’t be measured are systemically erased, or are given labels such as MUS, functional somatic syndromes and other variations which are little more than euphemisms for old fashioned notions of hysteria. Once labelled in this way we are stigmatised. our credibility as witnesses of our needs is undermined. Our symptoms are put down to laziness, malingering, or false beliefs.
So this ignorance and lack of understanding of energy impairment, and the systemic disbelief of our needs reinforce each other. And both need to be challenged if we are to improve social care provision for people with ELCI and support people to have more meaningful and socially connected lives, instead of living in deprivation and neglect as so many are today.
We need to start by identifying and counting ELCI and energy impairment in the same way we do with other impairments. Only then can our needs be incorporated into assessments and planning for care and support.
We need training for care managers and care workers so that they understand the impact of our conditions and what kind of support we need to live as fully as possible. We need an immediate end to the use of reablement for all ELCIs.
Underpinning this, we need the social care system to move away from medicalised models of disease and the stigmatising constructs of psychosomatic medicine. We need to listen and give credence to the lived experiences of patients and service users.
Beyond statutory care services, there is a broader vision for inclusive communities that I want to share. A lot of people with ELCI are disconnected from their local communities and from networks of support because they’re housebound. With the Covid-19 pandemic and lockdown, one unexpected positive outcome is that society has become more accessible to us. Because everyone has been housebound. So they have had to find ways to meet and connect through technology as we’re doing now. We’ve suddenly been included and participated in society. People with ELCI are afraid that once it ends we’ll be excluded from society once again.
With remote access technology like Zoom, there is a real opportunity to sustain the inclusion of this invisible group of disabled people. The pandemic shown that it’s workable. We need to develop ways of integrating virtual presence into our local communities so that we can have meaningful access and inclusion once lockdowns end, even for those of us who still stuck inside.
Further reading to explore energy impairment, and why social care services fail people with energy limiting chronic illness: