Need to know basis

Before I took poorly, I used to be a volunteer carer for a charity that provides holidays for people with physical disabilities. As far as I could work out, the policy (certainly for new volunteers) was not to tell us what disabilities people had. I assume this was so that we would treat them as people not as disabilities, yada yada, all that stuff.

But do carers need to know what disabilities the people they're caring for have? How much do they need to know about them? Whose role is it to explain to them?

I think it varies according to the status of the carer. A personal assistant, who can be with the disabled person 24/7, ironically needs less information. They have far more time to become aware of their employer's needs, and can adapt moment by moment.

A home carer, on the other hand, cares for several clients over the course of a typical day. They need to know the basics of each client's condition, and of the complications that may occur.

Many conditions are very variable. For example, you could take 100 people with MS, my condition, and you'd have 100 different sets of symptoms with 100 different levels of severity. A carer I had in the past expressed her (unwelcome) opinion that I had "mild" MS because I could still walk a little. She was taking no account of my fatigue, pain, bladder and bowel symptoms, spasms, cognitive problems, etc etc etc... Incidentally, I finally sat her down one day and explained all these other symptoms. In detail and at length.

So, it would be of benefit for home carers to know about the possible symptoms of the conditions they're dealing with, and the variability involved. Who should tell them about each person's situation?

Ideally, of course, it should be the client themself. The client's input goes into drawing up the care plan which guides the carer in their work. It's also important, though, that carers receive training about the conditions they commonly deal with. As far as I am aware, none of my carers so far have received any training about MS, although all have cared for people with MS before me.

So...up to us then? We need to educate our carers about our conditions, not only so that they are better able to care for us, but so that they are better prepared for the future, to care for people who are maybe not as articulate as we are.

A carer enters spooniedom

So, the new carer was in this morning. She arrived at 9, woke me up. That's fine, she's meant to. Made me a cup of coffee, did the washing up, made the bed, all that good stuff, and off she went.

She came back at 1 to do my shower, and woke me up. "How long have you been asleep?" she asked. "Since you've been gone" I replied. She thought this was very odd.

She doesn't know me yet, does she? Welcome to the world of spoonies, love.

Out with the old...

A Care Agency Ltd is no more - for me at least. For the last year, I've been trying to make what seemed to me, in my innocence, to be a small change in my care plan. I didn't want any more hours - just the same hours at a different time of day. This has turned out to be a request of mammoth proportions to organise. Finally, following the threat of a complaint to my councillor, I was told that I would have to be moved to a new care agency. Seemingly A Care Agency Ltd couldn't provide the hours I needed, having told me on the phone they could. Ah well.

That was about a week ago. Heard no more. Then this morning, nobody turned up for my call. I phoned A Care Agency Ltd, and was told (eventually, like the third time I phoned) that Social Services had told them not to come any more.

Ah.

Social Services, on the other hand, told me that A Care Agency Ltd was refusing to come any more because they'd been told they were losing the job. Hm. Well someone was telling me porkies, and to be honest I didn't particularly care who it was as long as someone started doing my care again!

So eventually, after being on the phone for most of the afternoon, I managed to speak to the supervisor at A.N.Other Care Agency Ltd, who will be starting my care as from tomorrow. Hopefully...

It's a shame that my final experience with A Care Agency Ltd wasn't with one of the carers I particularly liked. What's more, this was the woman (also immortalised in this post as "the Hockey Captain") who once tried to wash my boobs in the shower. I can wash my own boobs and down-belows thangyouverymuch, and I tend to find someone lunging for them when I'm nekkid a bit unsettling. Even if they are holding a sponge.

 Tomorrow is another day and all that. We'll see what it has to bring. Watch this space!

Sick in the head? Part 2

This is the second in a three part series on Munchausen's syndrome. Part one is here.

So, in Munchausen's syndrome the individual mimics the symptoms of a real medical condition, or actually causes them in themselves. Munchausen's syndrome by proxy is in many ways even harder to understand for the onlooker: here the individual causes illness in others, typically in a child. It is a form of extended child abuse, and the motivation is to assume the sick role by proxy. In some cases the child goes on to develop Munchausen's themselves, to go on getting the attention they received when they were in ill health.

One study showed that in over 90% of cases, the abuser was the mother. In other cases it was another female caregiver. This may be due to females being placed preponderantly in caregiving roles, or to socialisation patterns encouraging women to seek help and sympathy from others.

The term Munchausen's by proxy is thought to have been coined by paediatrician Roy Meadow in 1977. In the late 1990s and early 2000s Meadow testified in several murder cases, some of which resulted in parents being wrongly convicted of murdering their children: there was no doubt that harm had been done to the children, but Meadow commented on motive without evidence, and subsequently the judgements were reversed.

The person with Munchausen's by proxy is typically seen as very helpful in the hospital setting, and is often appreciated by the nursing staff for the care given to his or her child. Their frequent visits make the child accessible to them, and changes in the child's condition occur only when they are there, almost never witnessed by hospital staff.

Readers in the UK may recall the case of Beverley Allitt, labelled the Angel of Death by the media.

Allitt was a State Enrolled Nurse who worked on a children's ward. Over a two-month period she killed four children and injured nine others by injecting them with substances such as potassium chloride, which can stop the heart. She was sentenced to a minimum term of 40 years, which she is serving in a secure hospital. Her motives are not known, but it is thought she may have been suffering from Munchausen's by proxy.

Munchausen's by proxy may be linked to Hero Syndrome, where the individual seeks recognition by creating a desperate situation that they can resolve. The phenomenon has been noted to affect emergency workers such as nurses, police officers, firefighters and ambulance crew. Perhaps Allitt's 13 victims are only the ones we know about, and there were others where she became a "hero" by recognising their desperate illness - the illness she'd caused - in time to save them?

Over these two posts I've looked at Munchausen's syndrome, where an individual mimics illness symptoms or causes harm to themselves, and Munchausen's syndrome by proxy, where an individual causes harm to someone else, usually a child. In the final post of this series, I'll be considering a newly described condition, Munchausen's by internet.

Happy birthday to my MS!

Today is my MS's 6th birthday!

...or, to explain it a bit more reasonably, today is the sixth anniversary of my diagnosis with MS.  To celebrate the occasion, I will be throwing a party in the excellent MS chatroom I use. Please feel free to join us for cyber-cake and wine!

Six years feels kind of unrealistic though. For one thing, my neurologist has now confirmed that the symptoms I had for so long before 2005 were in fact attacks of MS. I'd had it for many years, at least 15 before the diagnosis. And it was 2003 when I really became badly ill: it took two years for me to be diagnosed. I use the date 17th March 2005 as my MS's "birthdate", but that's actually only the date it was officially recognised by the medical profession.

The period before a diagnosis - limbo-land - is terribly difficult. Friends and family often find it hard to acknowledge and make allowances for a condition that is not legitimised by a diagnosis. Physicians may suggest, in various forms of words, that the symptoms are "all in your mind". I was offered anti-depressants on several occasions, when I knew that I was not depressed, and I gave up reporting what turned out to be MS fatigue on being told repeatedly that "everyone gets tired".

The end result of all this can be that you begin to doubt your own body and sensations. I certainly did. I began to wonder if perhaps the doctors were right, and it was "all in my mind".

When I was finally diagnosed as having MS, I experienced a mix of emotions. Of course I was upset about having a major progressive disability: but my overwhelming emotion was relief, that I now knew for sure what was going on, and that there was actually a basis to what I had been experiencing.

And that's why I celebrate my MS's birthday every year. Cake, anyone?

Having multiple sclerosis

A very quick post, just to publicise an excellent site I found the other day. Having MS consists of a series of interactive simulations, demonstrating what it's like to have some of the symptoms of MS. Not everyone has all of the symptoms covered, and there are symptoms not included. It's a good start though! If you don't have MS, I would urge you to visit the site. Thanks.

The tightrope of long-term illness

I'm currently reading The Mind's Eye by neurologist Oliver Sacks. Like all his books, it's a fascinating exploration of the workings of the human brain, and the implications for everyday life and functioning if there are problems with a part of it.

One passage has particularly struck home to me. Sacks is discussing how long-term conditions can vary from day to day, hour to hour or even minute to minute. He says (on page 29 of my hardback copy):

"...such fluctuations are typical of any neural system that has sustained damage, irrespective of the cause. [...] There is less reserve, less redundancy, when a system is damaged, and it is more easily thrown off by adventitious factors such as fatigue, stress, medications or infections. Such damaged systems are also prone to spontaneous fluctuations..."

When I'm trying to explain how fragile my health is, and how insecure I can feel, I sometimes use the analogy of walking on a tightrope.

Someone who is fully fit and able-bodied is walking along the pavement. A tiny stressful occurrence - physical or psychological - isn't going to affect them. They'll hardly notice it, because their feet are planted firmly and they're well-balanced.

Not so for me. The same stressor will make me wobble on my tightrope. Sometimes I wobble so much I fall right off the rope, and sometimes I manage - eventually - to recover my balance. But even when I look like I'm walking confidently along, I have to pay constant attention to anything that could possibly make me fall.

It is these variations in health, and the continuous, unrelenting risk that some apparently minor event could throw me off my balance and make me ill, that are not accounted for by the Work Capability Assessments (WCA) being introduced for people who are claiming Employment and Support Allowance, due to being too ill to work.

The WCA is a blunt instrument which claims to be able to measure very, very precise things. It takes no account of variability in conditions - it is a snapshot of the person's condition on the day of their assessment. It takes no account of pain or fatigue. I may (for instance) be able on one particular day to kneel and get up again (and would therefore get no points in that particular section), but it would cause me a lot of pain, and I wouldn't be able to repeat the movement because I would be exhausted.

Many, many negative reports have come back from the pilot of the WCA, but it appears that the government intends to roll it out to the rest of the country anyway. Nobody denies that there are people who scam the system, but the WCA is manifestly not fit for purpose, and will undoubtedly cause financial hardship and severe psychological stress to many vulnerable people.

The Broken of Britain, a politically neutral group, is working to provide a voice for disabled people in the face of these unfair reforms. I urge you to support them.

Women and disability - the burden of double inequality

Today is International Women's Day 2011! The aim of IWD is to celebrate women's achievements, while also drawing attention to the inequalities that women still face.

The burden of disability varies, depending on your sex. Some disabilities are more likely to happen to men than to women, or vice versa. For instance, considerably more women than men develop MS - four times as many in 2000, and it is thought that the gender gap is still widening. The reason for this difference is not known, although it may be partly genetic.

Other disabilities are more common among men, a prime example being spinal cord injury. Again the ratio is 4:1, but this time it is four times as many men who are affected. In this case, the difference is thought to be mainly due to higher frequencies of  "risk-taking" behaviour among young men (typically, a spinal cord injury occurs when the individual is between 20 and 40). More than half of the injuries occur in road traffic collisions, with the remainder most often happening in falls, industrial accidents, sports, or (rarely) violence.

When an individual is disabled, they frequently encounter disadvantage. For instance, compared with a non-disabled, younger white man in a relationship, a disabled person in the UK has over 15% less chance of finding paid work. Similarly, a woman in a relationship and without children has nearly 10% less chance, and a mother of young children in a relationship over 35% less chance.

In 2006, 90 per cent of those with no "disadvantage" in the UK were in work, compared to 80 per cent of those with one "disadvantage" and around 50 per cent of those with two. Being a disabled woman is considerably more disadvantageous than being a disabled man (though both, of course, are disadvantaged compared to able-bodied men). It also seems that having two or more "disadvantages" may multiply the problems experienced: it's not just a case of adding them together.

 

The situation in the developing world is even more extreme. Women make up the three-quarters of the people with disabilities in developing countries. Current estimates are that:

• Women with disabilities make up at least 10% of all women globally
• Women in general are more likely than men to become disabled because of poorer working conditions, poor access to quality healthcare, and gender-based violence
• Only 25% of women with disabilities are in the global workforce
• Because of increased risk of gender-based violence and lack of access to reproductive health care services, women with disabilities face unique challenges in preventing HIV infection
• Literacy rates for women with disabilities globally may be as low as 1%
• Mortality rates amongst girls with disabilities are much higher than for boys with disabilities 

Much has been done in the fight to counter inequalities against both women and disabled people, but much more work remains to be done. Let's fight together for a future where all citizens of the world are equal, and have an equal chance in life!

Left Out In The Cold Press Release

 

On the eve of the second reading of the government’s controversial Welfare Reform Bill, on 9 March, disabled activist Kaliya Franklin stripped off to demonstrate what the result would be for disabled people across the UK if disability benefits are slashed to the bare minimum.

The photo shoot depicts a naked Franklin lying on the sand on a wintry beach, next to her empty wheelchair.

“I was absolutely frozen when I took my clothes off for the photo shoot,” says Franklin, “but it was nothing like as cold I and other disabled people will be if the government removes our essential benefits.”

The Left Out In The Cold awareness-raising campaign is being organised by disability rights group The Broken of Britain, of which Franklin is a founder and director.

Says Franklin, “It’s vital that every able-bodied person remembers they are just an accident or illness away from being disabled themselves. Many people think if they do become disabled that the state will look after them.

“But the fact is that even under current provisions, disability benefits are not enough for disabled people to live on. If the Welfare Reform Bill is passed, the situation will become unimaginably worse.”

In January, Franklin released a video on YouTube that explained how able-bodied people would be in for a major shock if they found themselves needing to apply for disability benefits. The video can be seen at http://www.youtube.com/watch?v=q7EXSpmrVMU.

The Broken of Britain group has been campaigning since summer 2010 to raise awareness of the government’s wider anti-disability policies. The group has consistently drawn attention to disabled people being the target of unjust government rhetoric and sham consultations, tabloid slander and political myths.

It says: “We are now the targets of deep and damaging cuts to disability services that are contained in and symbolised by the Welfare Reform Bill. The Bill disguises cuts and changes to a number of benefits, from housing benefit to Income Support that will punish disabled people.”


Notes for editors

1. Kaliya Franklin and other case studies are available for interview.

2. A high resolution version of the campaign photograph is available on request.

3. For more information, contact Rhydian Fôn James at rhydian@thebrokenofbritain.org or 07774021785, or Kaliya Franklin at 07714208602

4. Contribution-related Employment Support Allowance will be restricted to 365 days, meaning that a married claimant would be unable to claim after a year if their spouse works. 

5. The Welfare Reform Bill confirms that Disability Living Allowance will be replaced by the Personal Independence Payment which will use unfair assessment and conditions to disqualify 20 per cent of the current DLA caseload. 

There is no evidence that supports government’s claims that DLA is “broken” and in need of reform. In fact, most evidence suggests that DLA is an efficient and popular benefit, and this support includes the vast majority of the DWP’s own research.

The inclusion of this benefit change in the Welfare Reform Bill took place before the consultation on DLA reform was completed. 

6. Other cuts to disability services not included in the Welfare Reform Bill are:

• Plans to remove security of tenure from social housing tenants, as costly adaptations are a barrier to moving regardless of size of property.
• Many changes to the provision, entitlement to and charges paid for receiving social care and disability services provided by local authorities.
• The Independent Living Fund which provided for the highest level support needs in combination with the local authorities is now to be scrapped without consultation. 
• Access to Work reform redefines what it is "reasonable" to expect an employer to provide for disabled staff, meaning it is likely to push many currently employed disabled people out of work and back onto benefits. 

7. Disabled people are more likely to live in poverty than any other group in the UK and more likely to be unemployed or in low paid jobs. 60% of those with a work-limiting disability are unemployed, with 25% wanting to work.

 

Left Out In The Cold by Kaliya Franklin is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License.
Permissions beyond the scope of this license may be available at http://thebrokenofbritain.blogspot.com/.

Free at the point of care? Only for some!

Cross-posted from The Broken Of Britain.

Not everyone with a disability is also ill and in need of regular prescriptions, but many of us are. As an example, here are the medications I need every day for my multiple sclerosis:

• 3 painkillers
• 1 bladder medication
• 1 med for fatigue
• 1 anti-spasmodic
• 1 sleeping pill
• ...and a partridge in a pear tree (or so it sometimes seems!)

Then  there are the medications I take for the rest of my encyclopaedia of medical conditions: altogether 15 different meds, between one and eight tablets per day for each. If I could jump up and down I would rattle, so all in all, it's quite a good thing I can't!

The current prescription charge in England is £7.20 per item. In Wales and Northern Ireland they are free. In Scotland, they currently cost £3.00, but will become free later this year. I live in England, so I will consider only the situation here, and leave aside in this post the "postcode lottery" element of the differing charges between countries.

As well as MS, I have epilepsy. That means I get all my prescriptions free. The rationale behind this is that epilepsy is lifelong and potentially life-threatening. But the exemption applies not only to my epilepsy medications, but to everything. I've had prescriptions for a bottle of calamine lotion (over the counter cost what, about 50p?) to save me the prescription charge.

These medical exemptions are available to people with a few conditions other than epilepsy, including cancer, diabetes treated with medication, and any physical disability that means the individual cannot go out without help from another person.

There are many, many long-term conditions that are not covered by the exemption - for instance asthma, heart disease and Crohn's disease, all of which can be terribly disabling. There is evidence that high prescription costs lead to many people going without the medications they need:

• In 2007, 800,000 people failed to collect a prescription because of the cost involved. People with long-term conditions are particularly affected.
• 34% of people who have to pay for their asthma medication sometimes choose not to get it because of the cost.
• 38% of people with severe mental illnesses like schizophrenia have to choose between paying household bills and paying for prescriptions.

A GP is quoted as saying:

It's not unusual for patients to ask me which prescription is really important, which one can they get now and which one they have to wait maybe two weeks before they get their pay cheque.

I believe that prescriptions should be free for anyone with a long-term condition. Already over 89% of prescriptions are free, with no charges for children, pensioners, pregnant women, and people whose income falls below a certain level. It seems inequitable that (say) a wealthy pensioner or pregnant woman is entitled to free prescriptions, while someone with disabling heart disease whose income falls just above the cut-off point is not.

The Prescription Charges Coalition brings together 24 charities, and calls for the Government to abolish prescription charges for everyone with a long-term condition. They have a petition, and a template letter for you to send to your GP. If you agree with me that prescriptions should be free for everyone with a long-term conditions, please click on the link!

MS Research Roundup March 2011

So many interesting bits of research reported in the last month! I'll try to strike a balance between not missing out anything really interesting, and not making this post ridiculously long.

As far as I can, I'll work from studies relating to risk factors for MS, through symptoms, to treatments.

An important Australian study has found that people who spend more time in the sun, and those with higher vitamin D levels, may be less likely to develop MS. The study was important because previous ones had looked only at populations who already had established MS. This looked at people experiencing "first events", that is preliminary symptoms likely to lead to a diagnosis of MS. These results add to the growing evidence linking vitamin D deficiency with the onset of MS.

Meanwhile, American researchers have found that people with confirmed MS tend to have lowered levels of an important neurotransmitter called noradrenaline. Noradrenaline performs a number of roles in the body: among them are preventing inflammation and stress to neurons, and preserving the integrity of the blood-brain barrier. If the blood-brain barrier is not maintained, immune system cells can get through from the bloodstream into the brain and cause damage to brain cells.

The main source of noradrenaline in the brain is a structure known as the locus coeruleus (LC), deep in the brain.There is existing evidence that the LC is damaged in Alzheimer's and Parkinson's diseases. The researchers in this study believe that damage to the LC is also involved in MS.

Cognitive (thinking) problems are common in MS. A group of Austrian researchers used fMRI to investigate whether the brains of people with MS reorganise themselves to try to overcome these problems. They compared groups of people at different stages of MS with healthy controls, and found that as the disease progressed different parts of the brain were activated on dealing with a relatively simple thinking task. The cognitive effects of MS would be far worse if it were not for the brain adjusting in this way.

Still on thinking skills, it will be no surprise to many of those with MS reading this that warm or hot weather makes it harder for a lot of us to think and concentrate. Still, it's useful to have medical evidence proving it! There was already evidence that disease activity and lesion growth tend to be greater in warm weather, but this is the first time that thinking skills and weather have been investigated. The researchers found that people with MS scored (on average) a remarkable 70% better on cooler compared to hotter days of the year.

Another very common symptom in MS is depression. People with MS are 50% more likely than the general population to have depression over the course of their lifetime. It's never been clear whether this is a physical effect of the MS on the individual's brain, or the psychological effect of having a major and unpredictable progressive illness. Now American researchers have observed that people with MS appear to have shrinkage in a particular part of the brain called the hippocampus, which regulates mood and memory as well as other functions. There was also increased activity in an area of the brain that controls the body's reaction to stress.

And so on to treatments... 

Core stability refers to the stability of the abomen and pelvis. For someone to make a movement - for instance of a leg - their core first has to be stable, or they will become unbalanced and risk falling. The same applies to upper limb movements. A British study found that core stability exercises improved walking and reach for ambulant (able to walk) people with MS.

MS drug therapies are based round the theory that cells of the body's own immune system - specifically, T-cells - are attacking the body's own cells rather than foreign substances. It has never been clear, however, whether each attack in RRMS involved a different type of T-cell or not. If different types are involved, the T-cells already in the body would not be a suitable target for therapy. Now researchers in America have confirmed that it is the same T-cells that cause each relapse episode, and therefore that MS drug therapies are following the correct therapeutic approach.

One of these drug therapies is interferon-β. People may have to stop taking interferon-β if their body develops antibodies to it - a serious annoyance if they have been responding well to the drug. Now American researchers have discovered a drug, dodecylmaltoside, which it appears may slow down or stop the development of antibodies to interferon-β. It is only being tested in animals at present, but will hopefully progress to use in humans.

And finally, some excellent news about the relatively new drug therapy Tysabri, in a German study. An evoked potential test measures the time it takes for nerves to response to stimuli, and is a common test in the diagnosis of MS. The researchers measured evoked potentials in their patients one year before they started on Tysabri, on the day they started, and a year later. They found that patients had stable or even improved readings, showing that their disease progression had apparently been halted.

Right, sorry for that marathon...let's see what next month brings!