August 8, 2015, will be the third annual Understanding and Remembrance Day for Severe ME. To mark this, the 25% ME Group — a support organisation for people who have severe myalgic encephalomyelitis — are focusing on care. We’ve done this in view of the truly dreadful service responses that our members increasingly report encountering here in the UK.
Clearly there’s a major gap between the care needs of people with severe ME and professional perception. Guess which tends to prevail?
Time to raise awareness …
What is severe ME?
If you’re new to the subject, last year’s Phoenix Rising article about Severe ME Day is a wonderful way in. Its author posed a simple question: ‘What is the one thing about suffering with severe ME that the world needs to know?’
Responses were wide-ranging, thought-provoking, and all too often tragic. Several spoke to the need for care support, such as this Phoenix Rising member:
I think the worst things are losing your sense of identity, having to rely on others for basic help, but mostly not being able to produce energy on demand like the rest of the world … You just want to be healthy and participate in life as you knew it, but you can’t.
Why home care?
People with severe ME need a high level of sensitively delivered care. Not everyone has an informal support network of caring relatives and friends. Many are living alone, without family support. People in this situation are highly vulnerable, totally reliant on public services, and right now, often scared — sadly, with good cause.
As an advocacy worker at the 25% ME Group, my time is increasingly taken up with trying to help people with home-care problems. There’s a perfect storm at work, leaving people desperate to enhance the understanding of severe ME and care needs with their local social services departments and paid carers.
In the face of poor service responses from medical care, and gross misunderstanding, people with ME may simply choose to avoid doctors and other health professionals. Of course, this isn’t a satisfactory situation, but in the face of this awful medical mess, avoidance of professionals is an option.
Home care, on the other hand, is an essential service, needed right here and now, to help people who require assistance with the most basic needs, such as access to food, access to water, keeping clean, and toileting.
This is simply essential. People who are too ill to look after themselves can only rely on others to help them. They have no choice. A person cannot just switch themselves off until such time as home care services get wise to what is needed and become genuinely motivated to provide it.
There’s a massive lack of awareness about how this illness affects a person. This wouldn’t be quite so pernicious if care professionals were aware of the gaps in their knowledge and understanding, and motivated to learn from their clients.
Sadly, there’s little evidence of that.
The result is that some of the sickest people in our society find themselves dealing with professionals who are immersed in a mindset that’s adhered to with great force — but completely out of sync with the reality of their clients’ lives.
What do we mean by this?
Well, it’s become mainstream thinking to imagine that, instead of responding to need by providing ongoing care provision, people seeking support can and should be ‘re-abled’. The ‘thinking’ goes something like this:
- Ongoing care support = ‘dependence’ = bad.
- ‘Re-ablement’ = regaining ‘independence’ = good.
The term ‘brainwashing’ would not be entirely out of place here. This has bizarre echoes of Geroge Orwell’s “Animal Farm” (“Four legs good, two legs bad”) and the upside-down world of Lewis Carroll’s “Through the Looking-Glass.”
The consequences are all too real
Care can be withdrawn when the person declines this approach. It can be withdrawn once they have tried to go along with the professional’s chosen course but got no better. It can be withdrawn if the person with ME got worse and had to stop.
We have members who were not severely affected until pushing themselves to do more, on professional advice. Until recently this tended to come from health professionals only. But it has now seriously infected social services.
ME is life-changing at any level. For the most part, any ME patient is in a condition that professionals would tend to view as a more extreme, severely affected case, if they looked it in the face. The reality of the severest cases, on the other hand, tends to be off the professional radar altogether. Meanwhile, what professionals see as the norm for ME probably doesn’t exist at all, or reflects another disorder.
So it’s much worse than simple professional adherence to empty rhetoric. The misperceptions around ME play into this in a way that leaves some of the sickest people in the UK in a terrible plight.
People with severe ME are being refused essential care support, including necessary help with such fundamental needs as getting to the toilet.
In an era of cuts to public funding, it would be both more humane and more honest to acknowledge that a person seeking help may well deserve more care time and a better quality service than is actually on offer. Instead – while talk of ‘personalisation’ is highly fashionable, indeed de rigueur — the prospective client is ground through a highly depersonalising process.
The professional is ostensibly applying rigid protocols to decide on eligibility for care. Of course, the whole idea that one can be wholly ‘objective’ about this, that there exists a formula that applies with mathematical precision and the force of a logical syllogism, is patent nonsense. But there’s a lot of it about.
However, adherence to this pretence simultaneously works as a barrier to access for the sick person, and a crutch and shield for the professional, who may be far removed from the ‘coal face’ of care needs and awash in a sea of ‘commissioning’, ‘enabling’, ‘innovating’, and generally contracting out services.
Determination of eligibility for care in the UK today is highly process-driven, with standards of ‘evidence’ applied as though one were attempting to ascertain guilt or innocence. It’s quite staggering to be applying similar standards to deciding on the need for home care as are applicable to permitting conviction or otherwise for offence or crime.
Just as a criminal trial is a search for proof, not truth, so it is with home care.
Like the judicial system, decision-making on home care is an adversarial process, but devoid of the checks and balances that are built into the justice process. This is seriously scary.
Very sick and highly vulnerable people find themselves trying to anticipate what can and will be used against them, and deflect this to defend themselves from denial of essential care support. For example:
- ‘I saw you turn over in bed,’ i.e. you did it once, this makes you a liar when you say you have difficulty with this – you can do it any time.
- ‘The care worker found your kettle hot,’ i.e. you must have used it, so you can use it anytime – maybe you could be making your meals?
I have known a social worker overtly state to her client that the purpose of visiting her home was to ‘gather evidence’. What on earth did she expect to find?
The client is seen as an ‘unreliable witness’ and the litany of suspicion goes on … and on.
Unlike with a criminal suspect, if you are applying for care no one reads you your rights. No one warns you that anything you say — or do — can and will be used in evidence against you.
If you already have home care, and this is being reviewed, the home care workers will be used as ‘witnesses for the prosecution’. But you’ll have no opportunity to ‘cross examine’ them. In fact, you may not be able to be sure that what social services say the home care worker has reported back has in fact been reported.
Just knowing what is going on often leaves me feeling like I need a good bath.
The people who actually manage to live through this, and maintain their dignity and sense of self without crumbling in the face of relentless misperception, have my undying respect.
This exchange between myself and the 25% ME Group’s medical advisor Dr. Nigel Speight in October, 2014, is reproduced with his kind permission.
From Helen Brownlie to Dr. Speight:
A fresh hell bubbles up for PwME
I have come across quite a few cases recently emerging, of care being reduced; cut; or reduced and then cut on the basis that they are to be ‘re-enabled’.
I also have instances of denial of care on the basis that the person declines to be involved in such ‘re-enablement’ — for which read, ‘doing more for themselves’, for which in the case of PwME read, ‘doing themselves vast amount of damage, possibly permanent’.
Given that it seems to be an emerging pattern rather than a coincidence, I am thinking best try to tackle at the top, if possible. Will be more efficient than trying to defend all of the members who have community care from this nonsense on a case-by-case basis.
Person in [London borough] is a case in point. Latest is that social services, following the intervention of a solicitor, have come up with an ‘independent’ social worker specialising in ‘functional neurological disorders’ and mental health in general to reassess.
Dr. Speight replies:
I think you are right and there is an across-the-board attempt to cut back care.
I don’t think this is just aimed at ME sufferers but at all welfare recipients, although ME sufferers are especially vulnerable to the various types of dishonesty you have encountered.
The basic reason is the severe cuts imposed on local government.
One would wish the social services departments would be honest and say ‘You deserve more but we can’t afford it’ and then put the blame on the government where it belongs.
Where does this word ‘re-enablement’ come from?
It’s a bit like ‘self-management’ — highly ideological, the flavour of the times, and doesn’t have to relate to anything meaningful to patients, to be trumpeted ad nauseam.
Highly useful in terms of latent function — ‘justifying’ cuts.
Short Term Interventions for Regaining Independence
Against this background, the National Institute for Health and Care Excellence — commonly abbreviated to NICE (but not by me!) — is about to prepare guidance on short term interventions for regaining independence.
The 25% ME Group has registered as a ‘stakeholder’.
A stake through the heart of this would be good, as far as people with ME are concerned.
According to the draft guideline scope, this guidance will cover ‘all adults identified as having lost, or being at risk of losing their independence.’ We have pointed out that this scope should be more tightly drawn, to relate to — and only to — people who have some prospect of ‘regaining independence’ through an intervention (short-term or otherwise).
One of our frustrations, however, is that we simply don’t have the resources to meet all the casework needs that our members bring to us, and there’s very little additional time that can be shoe-horned in to take issues up at macro level.
It’s very frustrating.
So, if you’re in a position to do something to defend people from this, please consider registering as a ‘stakeholder’ and feeding into the guideline development process.
We didn’t want to simply complain — however justified — about what is happening. We wanted to provide some materials that might just help support members to make the case for suitable home care. You’ll find some of these at the 2015 Severe ME Day page on our website.
Do you have any questions?
If so, please fire away. I can’t guarantee a full response to all — simply because time is the enemy here — but we’d be interested to hear your queries and will try to reply as best we can.
Do you have any feedback?
We’d welcome feedback from Phoenix Rising readers about our campaign and our support resources.
As a UK charity, the initiative is aimed at addressing the situation that affects people with ME here in the UK. But we’d also be interested to hear more about how people with ME in other countries access care — is there anything you can share with us that might help achieve change here?