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Home care is the theme for Severe ME Day on August 8th

poster 2Why should home care be the theme on Understanding and Remembrance Day for Severe ME on August 8? Helen Brownlie of the 25% ME Group has written an explanation for Phoenix Rising …

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.

coffee-690349_640What’s the problem?

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.

road-sign-464648_640An adversarial process … but no one reads you your rights

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?

My ‘take’:

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.

Resources

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?

Contacting the 25% ME Group

Our website is here and we can be contacted via email at enquiry@25MEgroup.org

Our friendly, international forum is the busiest in the world with 400 new posts every day and over 13,000 members - join in!

{ 13 comments… add one }

  • Sasha August 7, 2015, 1:54 am

    Fantastic work that Helen Brownlie and Dr Speight are doing.

    This 're-enablement' nonsense really is an Orwellian nightmare, as Helen says.

    About 20 years ago, a friend of mine who was bedbound with ME was receiving home care from the council. A new careworker found her in bed, flung the duvet off her and tried to physically drag her out of bed. My friend phoned the council straight away and the carer was told not to do anything like that again.

    I remembered thinking about this 'carer' and wondering how anybody could be so stupid.

    Now that carer's mindset seems to have infected the entire social care organisation.

    How can they all be so stupid?

  • Sasha August 7, 2015, 1:59 am

    There's a book by Stephen Pinker – The Better Angels of our Nature – in which he looks at the phenomenal (and unreported) decline in violence worldwide over the centuries (you won't believe it has declined, but read the book and look at the evidence!).

    He attributes this partly to the spread of literacy and therefore to people's ability to read about, and put themselves in the position of other people (particularly through fiction) and therefore to be less inclined to use violence.

    In other words, there's been a relentless move towards civilisation due to the increased opportunities to feel empathy for others.

    In the past few years, this trend seems to have slammed into reverse in the UK as far as the disabled are concerned.

    Shameful.

  • alex3619 August 7, 2015, 4:10 am
    Sasha

    In the past few years, this trend seems to have slammed into reverse in the UK as far as the disabled are concerned.

    It has been proposed that this kind of trend is in cycles. Improvement often comes after dark times, when people say never again. Then they forget. Then it happens again. Its the ability to remember those dark times that is important to reduce their occurrence in the future. So they need to be documented.

  • worldbackwards August 7, 2015, 8:32 am

    This is a further incursion of BPS ideas into the treatment of the disabled in the UK. The language of "empowerment" is used, as it is in ESA, in order to remove rights from people unable to defend themselves. Once again it reveals itself as an idea who's time has come – dressing up cuts as constructive care and then blaming those who "refuse" to be "helped". This is a result of the massive cuts to council budgets I think, and the swiftness with which our governments now come to the conclusion that something is "unsustainable", when the reality is that they simple lack the desire to sustain it.

    Re progress: I've been reading a book about witch trials in the seventeenth century this week. Therein, it was claimed that some accusations of witchcraft were levelled at the elderly and infirm who required public assistance. Unwilling to help, people assuaged their consciences by accusing them of witchcraft, thereby absolving themselves of any guilt in their demise, undeserving diabolical wretches that they were. I couldn't but help finding it hauntingly familiar.

    People may not be hung or burnt these days, but there are still such things as witch-hunts and as much violence done by the stroke of a pen as there used to be by the slash of a sword.

  • Tom Kindlon August 7, 2015, 3:10 pm

    Thanks for this. I've highlighted it in a few places.

    For people on Twitter, I (https://twitter.com/TomKindlon) have 51 messages scheduled to post during August 8. All under the hashtag #SevereMEday.

    Same messages will also go up on my Facebook account: https://www.facebook.com/tom.kindlonpwme

  • Sasha August 8, 2015, 2:45 am

    Great idea for three ways to celebrate Severe ME Day (today) from #MEAction – including to donate to the END ME/CFS 'Severely Ill, Big Data' study.

    I'll be donating – let's give END ME/CFS a real 'Severe ME Day' boost!

  • ahmo August 8, 2015, 3:06 am

    There's also this site, for uploading photos, in the spirit of retiring the I'm-so-tired image of ME. There don't seem to be any additions since I last visited a couple months ago.

  • Helen B 25% August 8, 2015, 5:30 am

    Many thanks to Phoenix Rising for featuring this.
    And the insightful comments from subscribers.
    Just wanted to mark Severe M.E. Day with some words of quiet remembrance for those who have lost their lives to this terrible illness.
    Today would have been Sophia Mirza's 42nd birthday.

  • Helen B 25% August 8, 2015, 5:36 am

    Can I also make a plea for donations to the 25% ME Group.
    Believe me, we could do with several advocacy workers.
    The unmet need among people who continue to live and suffer with this illness is vast.
    Incidentally, I'm with Dan Peterson on the matter of research. Yes, research matters (and good on the OMF for their initiative). However this can only be resolved at 'political' level.
    The research that would blow the establishment perspective out of the water is already there!
    There's donate button on the Group's fundraising page, easily accessible from the home page.

  • Sasha August 8, 2015, 6:05 am

    Hi Helen – welcome to the forums and thank you for such an important article. You do great work!

    Helen B 25%

    Can I also make a plea for donations to the 25% ME Group.
    Believe me, we could do with several advocacy workers.
    The unmet need among people who continue to live and suffer with this illness is vast.

    I think this is a very deserving cause. Here's the donation link for the 25% ME Group.

    Helen B 25%

    Incidentally, I'm with Dan Peterson on the matter of research. Yes, research matters (and good on the OMF for their initiative). However this can only be resolved at 'political' level.

    I think that the kind of research funding that we really need to sort this disease out can only be funded by governments, which is going to take political pressure. But in the meantime, I believe that we need to be funding research too – the Phase III rituximab trial in Norway wouldn't now be underway now if it wasn't for Maria Gjerpe's MEandYou crowdfund (which both raised money and applied political pressure that got additional government funding).

    Helen B 25%

    The research that would blow the establishment perspective out of the water is already there!

    True, and there have been strong statements from the recent, big US-government-funded reviews (the IOM report and the P2P report) that this is an organic, not psychological disease. But we haven't yet identified what causes and maintains the disease, got a widely-agreed biomarker, or any approved pharmaceutical treatment or a cure: we desperately need more research.

    In my view we should be giving both to support services like the 25% ME Group, and to research.

    Thanks again for all you're doing, Helen.

  • taniaaust1 August 9, 2015, 7:56 am

    Thanks.

    This article blew me away as it included aspects I've found around this issue which are rarely talked about. The article gave me goose bumps as its too close to home.

    One of the reasons I've been given for not receiving any home support for ME disability is "you need to learn independence" and "You need to learn organisation" I cant get through the brains of those who run the services that my issues are not those things.

    .. no thought was given at all on the fact that before I got ill I was previously organised and independent enough to be raise two children myself as a single parent, travel from country to city and back most days to go to college and work! (I was a high achiever).

    They are still expecting me to to do some "training" or " life re-education" so I can function better and hence cope better with ME which I so far have declined (as it will just was my valuable energy with home visits/appointments and its very hard to fit anything more in my life, Im already doing too much).

    Im sure Im currently getting viewed more negatively by those who should be providing me with services due to the fact Im not working with someone to "teach me independence".

    The UK seems to be ahead then my state in Australia (SA) which has never home supported as far as I know those who have severe ME (none of the professionals or services here seem to know who does that) but is obviously going backwards heading to my states level of things around this illness.

    My states disability service will not recognise ME as an disability and wont recognise that ME is an neurological disorder either. Ive been told its against their actual policy to support ME people . A completely bedridden ME patient could just end up dying where I are right now due to no services for us).

    The hospitals here expect the state disability service to be giving support to us and tell me to just push the other services harder, I've already pushed them so hard that I've tried to take them to court for discrimination against ME/CFS (while these other services say we don't fit into their policies).

    Crazily this means severe ME people in my state have no home support service options at all no matter how much they need it (hence why I recently choose to go to jail for 2.5months) except if they are older and hence then meet the age requirements to get some support through their local council which I don't qualify for age wise for another 10 years.

    I really ask people to also consider donating not just to research but to places in which the donations will help us gain more ME advocates. Without them wrong government polices which are affecting us from very high levels, will not be fixed. Without knowable ME advocates working on the higher levels.. we will not get government funding for research either. Advocates for our illness are essential.

    We have enough evidence out there right now which shows people with our illness can be severely affected eg bedbound for advocates to push for ME people to get more of what we are needing be it funding, home support services or calling upon having better trained in this drs.

  • Research 1st August 10, 2015, 2:04 pm

    Everything the 25% group do is ignored by the UK state, they are a tiny voice in a choir no one can hear, only the patients support them and appreciate them, sadly

    We have two core problems in the UK when it comes to ME charities.

    1)The charities funded (grants), aren't ME charities but fatigue based.

    2) Those funded (government grants) are those who support CBT, such as AFME who support the PACE trial and CBT.

    Thus everything the 25% does to help patients, falls on deaf ears, as there is no change of management of ME, whilst ME is incorrectly placed within mental and behavioural NHS treatment strategies (CBT/GE) which PACE proved, doesn't work.

    When it comes to home care, you won't get any. Social services read the disinformation on 'disability' in CFS/ME and won't help you.

    I had a nurse assessment (housebound) and they said I didn't need any care, and left with zero hours given and no help at all with disability aids. (That's the wide ranging effect psychiatry has on the state), that ignores charities like the 25% group, who try and help out genuine ME patients with chronic life destroying neurological disease. Thus NHS staff are massively biased and may sometimes believe all PWME are mentally ill or lazy, or just don't need help with home care and home help as I experienced.

    Such as shame the 25% group cannot be 'the' ME charity in terms of influence.

    To get any form of help in the UK as , you have to not criticise CBT and say it works for ''some people'' (totally untrue, no ME research on ME patients supports this).

    Naturally due to feeling betrayed many PWME, join the 25% group, and we can see that over time 25% group members are dying out from their disease (rather than going back to work and having a life from CBT).

    I'm grateful the 25% group, they have the integrity not to bow to pressure, and carry on, a tiny shoestring budget, run by a gentleman who is very ill indeed, who also has no income and cannot work as his life has been devastated by ME.

    At least the positive aspect, is the 25% group can expose what happens to its members, such as no care provision, but this doesn't stop the rot unfortunately. The broken system.

  • Helen B 25% August 12, 2015, 4:35 am

    Many thanks for all your feedback and sharing

    Much food for thought

    Can I just say that, though the situation is dire, doing advocacy work for the 25% ME group is rewarding. (And it's not the case that if you have M.E. you definitely won't get any home care.) It makes me very aware that if we had more resources we could do more, help more people, and also do more by way of trying to secure the change that's desperately needed. By definition, if an organisation wants to truly represent members with M.E. – severe or otherwise – it must truly represent them and becoming rich is no solution to this if it means becoming part of / in thrall to the system that's causing the problems to members in the first place. So 25% ME Group is resolutely grounded but not well off.
    It's an honour to work for this charity. We could also do more with more dedicated volunteers on board. But most people who are interested either have M.E. themselves or are looking after a close friend or family member with M.E. and don't have much if any 'slack' to give. Just need to keep on keeping on, as best.

    Thanks again to all of you.

    Helen B