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a1000shadesofhurt

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Tag Archives: symptoms

What does depression feel like? Trust me – you really don’t want to know

20 Wednesday Apr 2016

Posted by a1000shadesofhurt in Depression, Uncategorized

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Depression, emotions, experience, support, symptoms

What does depression feel like? Trust me – you really don’t want to know

This is Depression Awareness Week, so it must be hoped that during this seven-day period more people will become more aware of a condition that a minority experience, and which most others grasp only remotely – confusing it with more familiar feelings, such as unhappiness or misery.

This perception is to some extent shared by the medical community, which can’t quite make its mind up whether depression is a physical “illness”, rooted in neurochemistry, or a negative habit of thought that can be addressed by talking or behavioural therapies.

I’m not concerned about which of these two models is the more accurate. I’m still not sure myself. My primary task here is to try to explain something that remains so little understood as an experience – despite the endless books and articles on the subject. Because if the outsider cannot really conceptualise serious depression, the 97.5% who do not suffer from it will be unable to really sympathise, address it or take it seriously.

From the outside it may look like malingering, bad temper and ugly behaviour – and who can empathise with such unattractive traits? Depression is actually much more complex, nuanced and dark than unhappiness – more like an implosion of self. In a serious state of depression, you become a sort of half-living ghost. To give an idea of how distressing this is, I can only say that the trauma of losing my mother when I was 31 – to suicide, sadly – was considerably less than what I had endured during the years prior to her death, when I was suffering from depression myself (I had recovered by the time of her death).

So how is this misleadingly named curse different from recognisable grief? For a start, it can produce symptoms similar to Alzheimer’s – forgetfulness, confusion and disorientation. Making even the smallest decisions can be agonising. It can affect not just the mind but also the body – I start to stumble when I walk, or become unable to walk in a straight line. I am more clumsy and accident-prone. In depression you become, in your head, two-dimensional – like a drawing rather than a living, breathing creature. You cannot conjure your actual personality, which you can remember only vaguely, in a theoretical sense. You live in, or close to, a state of perpetual fear, although you are not sure what it is you are afraid of. The writer William Styron called it a “brainstorm”, which is much more accurate than “unhappiness”.

There is a heavy, leaden feeling in your chest, rather as when someone you love dearly has died; but no one has – except, perhaps, you. You feel acutely alone. It is commonly described as being like viewing the world through a sheet of plate glass; it would be more accurate to say a sheet of thick, semi-opaque ice.

Thus your personality – the normal, accustomed “you” – has changed. But crucially, although near-apocalyptic from the inside, this transformation is barely perceptible to the observer – except for, perhaps, a certain withdrawnness, or increased anger and irritability. Viewed from the outside – the wall of skin and the windows of eyes – everything remains familiar. Inside, there is a dark storm. Sometimes you may have the overwhelming desire to stand in the street and scream at the top of your voice, for no particular reason (the writer Andrew Solomon described it as “like wanting to vomit but not having a mouth”).

Other negative emotions – self-pity, guilt, apathy, pessimism, narcissism – make it a deeply unattractive illness to be around, one that requires unusual levels of understanding and tolerance from family and friends. For all its horrors, it is not naturally evocative of sympathy. Apart from being mistaken for someone who might be a miserable, loveless killjoy, one also has to face the fact that one might be a bit, well, crazy – one of the people who can’t be trusted to be reliable parents, partners, or even employees. So to the list of predictable torments, shame can be added.

There is a paradox here. You want the illness acknowledged but you also want to deny it, because it has a bad reputation. When I am well, which is most of the time, I am (I think) jocular, empathetic, curious, well-adjusted, open and friendly. Many very personable entertainers and “creatives” likewise suffer depression, although in fact the only group of artists who actually suffer it disproportionately are – you guessed it – writers.

There are positive things about depression, I suppose. It has helped give me a career (without suffering depression I would never have examined my life closely enough to become a writer). And above all, depression, in nearly all cases, sooner or later lifts, and you become “normal” again. Not that anyone but you will necessarily notice.

But on the whole it’s a horror, and it’s real, and it deserves sympathy and help. However, in the world we live in, that remains easier to say than do. We don’t understand depression partly because it’s hard to imagine – but also, perhaps, because we don’t want to understand it.

I have a suspicion that society, in its heart of hearts, despises depressives because it knows they have a point: the recognition that life is finite and sad and frightening – as well as those more sanctioned outlooks, joyful and exciting and complex and satisfying. There is a secret feeling most people enjoy that everything, at a fundamental level, is basically OK. Depressives suffer the withdrawal of that feeling, and it is frightening not only to experience but to witness.

Admittedly, severely depressed people can connect only tenuously with reality, but repeated studies have shown that mild to moderate depressives have a more realistic take on life than most “normal” people, a phenomenon known as “depressive realism”. As Neel Burton, author of The Meaning of Madness, put it, this is “the healthy suspicion that modern life has no meaning and that modern society is absurd and alienating”. In a goal-driven, work-oriented culture, this is deeply threatening.

This viewpoint can have a paralysing grip on depressives, sometimes to a psychotic extent – but perhaps it haunts everyone. And therefore the bulk of the unafflicted population may never really understand depression. Not only because they (understandably) lack the imagination, and (unforgivably) fail to trust in the experience of the sufferer – but because, when push comes to shove, they don’t want to understand. It’s just too … well, depressing.

Dispelling the nightmares of post-traumatic stress disorder

07 Wednesday Jan 2015

Posted by a1000shadesofhurt in PTSD

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avoidance, behaviour, cbt, distress, Ehlers and Clark, flashback, hyperarousal, interpretations, low mood, Memory, negative thoughts, nightmares, post traumatic stress disorder, psychological effects, psychotherapy, PTSD, reliving, reminders, symptoms, threat, trauma, trauma memories, traumatic event, treatment, triggers

Dispelling the nightmares of post-traumatic stress disorder

On Wednesday morning we woke to the news that a passenger ferry had sunk off the coast of South Korea, with at least four people confirmed dead and 280 unaccounted for. Meanwhile, though the search has continued for the missing Malaysia Airlines plane, relatives’ hopes of a safe landing have long since been extinguished.

Human tragedies like these are the stuff of daily news, but we rarely hear about the long-term psychological effects on survivors and the bereaved, who may experience the symptoms of post-traumatic stress disorder for years after their experience.

Although most people have heard of PTSD, few will have a clear idea of what it entails. The American Psychiatric Association’s Diagnostic and Statistical Manual (DSM) defines a traumatic event as one in which a person “experienced, witnessed, or was confronted with an event or events that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others”. PTSD is marked by four types of responses to the trauma. First, patients repeatedly relive the event, either in the form of nightmares or flashbacks. Second, they seek to avoid any reminder of the traumatic event. Third, they feel constantly on edge. Fourth, they are plagued with negative thoughts and low mood.

According to one estimate, almost 8% of people will develop PTSD during their lifetime. Clearly trauma (and PTSD) can strike anyone, but the risks of developing the condition are not equally distributed. Rates are higher in socially disadvantaged areas, for instance. Women may be twice as likely to develop PTSD as men. This is partly because women are at greater risk of the kinds of trauma that commonly produce PTSD (rape, for example). Nevertheless – and for unknown reasons – when exposed to the same type of trauma, women are more susceptible to PTSD than men.

What causes it? In one sense, the answer is obvious: a specific trauma. Yet this is only part of the story, because not everyone who is raped or badly beaten up develops PTSD. Of the contemporary psychological attempts to answer that question, the most influential is the one formulated by the clinical psychologists Anke Ehlers and David Clark at the University of Oxford.

They argue that PTSD develops when the person believes they are still seriously threatened by the trauma they have experienced. Why should someone assume they are still endangered by an event that happened months or even years previously? Ehlers and Clark identify two factors.

First is a negative interpretation of the trauma and the normal feelings that follow, for example believing that “nowhere is safe”, “I attract disaster”, or “I can’t cope with stress”. These interpretations can make the person feel in danger physically (the world seems unsafe), or psychologically (their self-confidence and sense of well-being feel irreparably damaged).

Second are problems with the memory of the trauma. Partly because of the way the person experiences the event, the memory somehow fails to acquire a properly developed context and meaning. As a result, it constantly intrudes. Ehlers and Clark liken the traumatic memory to “a cupboard in which many things have been thrown in quickly and in a disorganised fashion, so it is impossible to fully close the door and things fall out at unpredictable times”.

These factors change the way people behave. They may avoid situations that might spark a memory of the trauma, and will sometimes try to deaden their feelings with drink or drugs. Yet these strategies tend to entrench and exacerbate the problem.

PTSD can be treated with antidepressants or various kinds of psychotherapy, including prolonged exposure therapy and eye movement desensitisation and reprocessing. However, a recent meta-analysis of 112 studies conducted over the past 30 years found that cognitive behavioural therapy (CBT) was the single most successful type of treatment.

CBT typically comprises three main strands. First, it evaluates the individual’s excessively negative thoughts about the trauma and its aftermath – for example by helping them understand that they are not to blame or that their feelings are normal and natural. Second, the treatment works on the person’s memory of the trauma: the individual might be asked to write a detailed account of the event; relive it in their imagination; revisit the site of the trauma; or be shown how to cope with the kind of objects or situations that trigger the traumatic memory.

The final strand involves tackling the kind of behaviours that tend to fuel PTSD, for example by demonstrating that attempting to suppress a thought is futile (if you doubt it, try right now not to think of a white bear) or that avoiding a situation only strengthens one’s fear.

A course of CBT for PTSD normally involves meeting with a therapist once or twice a week over several months. Given how debilitating the problem can be, that can seem like a very long time to wait to get one’s life back on track. However, pioneering research published in last month’s issue of The American Journal of Psychiatry suggests that there may be an alternative. Instead of months, it may be possible to tackle the symptoms of PTSD in just seven days.

Anke Ehlers at the University of Oxford and her colleagues randomly assigned 121 patients with PTSD (about 60% female, 40% male) either to a seven-day course of intensive CBT; weekly sessions of CBT for three months; a type of psychotherapy known as emotion-focused supportive counselling; or to a 14-week waiting list. Participants in the first three groups all received the same amount of therapy (18 hours).

The results were striking. The intensive CBT proved almost as successful as the standard three-month course, with respective recovery rates from PTSD of 73% and 77%, and the intensive version produced its effects more quickly. For the supportive counselling group, recovery was 43% (another finding that undermines the idea that all types of psychotherapy are equally effective). Among the waiting list group, just 7% had recovered. Both courses of CBT also led to large reductions in levels of anxiety and depression.

Most importantly, the benefits lasted: 40 weeks after entering the study, about two-thirds of the CBT patients were still free from the symptoms of PTSD. The therapy isn’t easy – it confronts highly distressing events and feelings, after all – but it works.

Follow @ProfDFreeman and @JasonFreeman100 on Twitter

Explaining tokophobia, the phobia of pregnancy and childbirth

15 Monday Sep 2014

Posted by a1000shadesofhurt in Uncategorized

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anxiety, birth, childbirth, distress, fear, hyperarousal, labour, media, negative birth experience, panic, positive birth experience, post-birth PTSD, pregnancy, PTSD, social media, symptoms, tokophobia, trauma, treatment

Explaining tokophobia, the phobia of pregnancy and childbirth

For expectant mothers, it’s very normal to approach birth with a feeling of trepidation, particularly for the first baby. From the moment a pregnancy is announced, the average pregnant woman is inundated with horror stories of pain and long labours by supposed well-meaning friends, and it can be hard to focus on a positive birth experience when you don’t know what to expect.
But for some women, the fear of childbirth goes beyond trepidation into full-blown anxiety, panic and fear. Known as tokophobia, this phobia of childbirth affects somewhere between 3-8 per cent of pregnant women.
Symptoms include worries specifically about the pregnancy and birth, a fear of harm or death related to the birth, poor sleep, and a sense of hyper-arousal (rapid heartbeat and breathing, difficulty winding down). The fear of childbirth is a common non-medical reason for requesting a caesarean section, and women with this fear have a much higher rate of both caesarean delivery and use of epidural anaesthesia.
There is no clear path to developing fear of childbirth, but there are some risk factors that we know about. A history of anxiety or depression is one risk factor, as is a history of childhood abuse, be it sexual, physical or emotional abuse.

Some studies have also identified patterns with age, suggesting younger mums are more vulnerable, as are those with less education, and mums without a strong social network.

However, a recent study found that one of the biggest influences women reported on their fear of childbirth was the media. Hospital-based reality television programs and medical dramas often feature storylines with dramatic emergency situations during childbirth and this may be all women know of giving birth prior to the event.

We also know that around 95 per cent of pregnant European women report searching for pregnancy and birth information online, and social media and blogs hold the potential for the circulation of misinformation that may heighten fears rather than allay them.

There is another group of women who may find pregnancy and childbirth frightening due to related fears. One of the most common phobias in adults is blood/injury phobia, often including a fear of injections. Pregnancy and childbirth is hence very confronting for these women, who may faint or experience extreme distress at even routine blood tests throughout their pregnancy.

Researchers have found that for first time mothers, a positive birth experience can often relieve the fear of childbirth so that it is no longer an issue for future pregnancies. However, whether or not women start with a fear of childbirth, a negative birth experience can make them up to five times more likely to develop tokophobia for future pregnancies.

A negative experience of birth may be due to complications, feeling out of control, dissatisfaction with care providers, or just not having the birth that was expected. Between 2-6 per cent of women report post-traumatic stress syndrome (PTSD) following a difficult birth experience. PTSD is the disorder once known as ‘shell shock’ for its affliction of soldiers following war, and is characterised by nightmares and re-experiencing of the birth trauma, avoidance of all reminders of the birth, and hyper-arousal. Without treatment, PTSD can limit family size and cause problems in women’s relationships with their partner and their child.

While we may not hear much about tokophobia and post-birth PTSD, their prevalence suggests we do need to look out for women who may be suffering both before and after birth. In addition to the distress at the time, stress and anxiety during pregnancy are linked to a higher rate of preterm birth and later behavioural problems in children.

The good news is that like all anxiety disorders, the fear of childbirth and PTSD can be addressed and treatments are available. One of the most vital elements of treatment is education on birth, whether through the obstetric care provider, midwives, or antenatal classes. Knowing what to expect and having an agreed plan with your care provider can assist to overcome some of the irrational fears.

Linked to this, a supportive and trusting relationship with the care providers who will manage the birth is essential. This is not always possible as some obstetric settings do not allow for repeated contact with the same provider, but a relationship of trust will be more likely to create a positive birth experience.

When problems do occur in pregnancy and birth, a post-birth debriefing can be useful and may help prevent the development of PTSD symptoms. Understanding what went wrong and why things happened the way they did can help with processing the events and accompanying trauma.

As with other anxiety disorders, relaxation, light exercise and slow breathing can help to calm the body and relieve the hyper-arousal that comes with the fear of childbirth. A psychologist can assist with other anxiety management techniques that can help to minimise fears.

For those who find the idea of pregnancy and birth overwhelming, it is important to know that help is available and such symptoms can be successfully treated. The first step is confiding your fears so that those around you can start to support you through what could be a wonderful journey.

Exercise and disability: ‘Now things hurt for the right reasons’

17 Tuesday Sep 2013

Posted by a1000shadesofhurt in Uncategorized

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confidence, Exercise, multiple sclerosis, Self-esteem, symptoms

Exercise and disability: ‘Now things hurt for the right reasons’

It’s hardly surprising that Shana Pezaro started comfort eating. After 20 years of unexplained and debilitating symptoms, she had just been diagnosed with multiple sclerosis. Having built up her own stage-school business, she was now losing the ability to walk and was forced to sell up. Then her marriage fell apart.

“My husband had found my illness and disability very difficult to deal with, but we always thought I was going to get better,” says Pezaro. “Then, when I was finally diagnosed with MS in 2007 and we realised I wouldn’t, he just couldn’t handle it. I used to be a dancer, but my body had changed and he told me he just couldn’t find me attractive anymore. Within a year of my diagnosis, we’d split up.”

It was a relief, she says, when he finally left, but the experience nevertheless dealt a blow to her self-esteem, not helped by the fact she had started to put on weight.

“I went from 12st to 15st in the space of three years. The fatigue was so bad that I didn’t have the strength to cook. I was living on microwave meals and snacks. The steroids and other medications made me incredibly hungry. And of course as my legs got worse I was getting less and less exercise – I could barely walk. I was miserable.”

Weight gain is a serious issue for the disabled community. In a study of 30,000 people published this summer by the University of Texas School of Public Health, 42% of adults with a disability were reported as obese, compared with 29% of those without a disability. Gaining weight not only affects a person’s emotional wellbeing, but can also make mobility even harder and symptoms feel worse. Yet fatigue and pain can make sport participation seem daunting. And although things are improving following the success of the Paralympics, access remains a major barrier. Just 18% of people with a disability or long-term limiting illness participate in sport each week, around half the level of the general population, according to a survey by Sport England.

“You don’t have to eat a lot to put on weight if you’re not moving and your body isn’t burning calories,” says Vanessa Daobri, a gym instructor who specialises in working with people with disabilities. “Disabled people often suffer because they don’t know how to exercise. If the disability is a result of an injury or it’s been a slow onset, they may find it hard to accept that they can’t do a sport in the way they used to, so they feel there’s no point.”

Organisations such as Aspire and the English Federation of Disability Sport run inclusive gyms across the country. But not everyone is lucky enough to be near one, and regular gyms are still lagging behind, says Daobri. “Often the staff get the approach wrong – sometimes it’s just laziness, sometimes it’s ignorance. Health and safety is used as a crutch, too.” Another issue, she says, is that disabled people can feel frightened to be seen going to the gym in case their benefits are cut.

Daobri has Ehlers-Danlos syndrome, a disorder affecting collagen. In 2007 she grew from a size 12 to a size 24 in less than a year. She felt “stuck”, until she joined a wheelchair racing group and the coach asked her if she used the gym.

“I just laughed,” she says. ‘I thought gyms were not for me – they were for other people.” She was shown how to use gym equipment in new ways and quickly became “addicted” to exercise. Now, she has made a career out of helping disabled people find ways to get fit.

“Once someone opened the door for me I realised there was a whole world out there,” she says. “Whatever your disability, there’s a version of a sport for you – you just have to be a bit creative.”

After six months of post-divorce counselling, Pezaro decided she wanted to lose weight. “I got a brilliant new carer who got me eating healthily,” she says. “Then I found out there was an MS treatment centre near me that runs lots of different exercise classes.”

She signed up to a class she has come to describe affectionately as “sadistic PE”. “The instructor is ex-military but also a counsellor and herself has MS. So she completely understands us, but she doesn’t let us get away with anything. We adapt everything to our own personal needs. It’s not your average fitness class – it’s not unusual for people to collapse and have a leg spasm in the middle of their situps, or to suddenly fall off their exercise ball, but we just laugh about it.”

At first Pezaro was unable to do most of the exercises, but she persevered and since starting the class three years ago has lost nearly 4st.

“It’s not been easy,” she says. “It took me 30 months to lose 45 pounds. But I didn’t get demoralised. I knew that over the years it would add up. And the more I’ve exercised the better my fatigue is. I still can’t walk, but I now have less weight to lift when I’m using my frame, or getting on and off the toilet, so everything is easier.”

Pezaro’s confidence has been transformed and now she is enjoying dating again. But perhaps most the important gain has been to her sense of control.

“I really worked myself at last night’s class, and today every muscle in my body hurts,” she says. “But I’m so used to living with pain, it’s kind of nice to know that for once, things are hurting for a good reason.”

• For information and support on multiple sclerosis visit mssociety.org.uk. Aspire’s Instructability programme offers free fitness industry training to disabled people. Visit aspire.org.uk

Are mental illnesses such as PMS and depression culturally determined?

20 Monday May 2013

Posted by a1000shadesofhurt in Uncategorized

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culture-bound syndromes, Depression, diagnosis, DSM, mental health issues, symptoms

Are mental illnesses such as PMS and depression culturally determined?

The latest edition of the Diagnostic and Statistical Manual of Mental Disorders – DSM 5 – was published over the weekend. Produced by the American Psychiatric Association, it describes the symptoms of a vast range of mental illnesses and is intended as a guide to diagnosis.

Why should we in the UK care? Simple: the political dominance of the US means that as soon as a mental disorder is named in the DSM, that disorder becomes valid in the eyes of many.

But not everyone is a fan. The DSM committee has been accused of continually expanding the categories of mental illness, resulting in“diagnostic inflation” – with the result that increasing numbers of us are diagnosed with one condition or another.

The committee has also fallen foul of the US National Institute for Mental Health (NIMH), which dislikes the DSM’s symptom-based approach. The NIMH argues that laboratory tests for biomarkers are the only rational way to diagnose mental illness.

And two weeks ago the British Psychological Society released a statement claiming that there is no scientific validity to diagnostic labels such as schizophrenia and bipolar disorder.

Indeed, the DSM’s fondness for the categorisation of mental illness is a major reason for its unpopularity in many quarters. According to Gary Greenberg in the New Yorker, frustrated scientists believe its beloved categories “don’t correspond to biological reality”.

Is that a fair criticism? I would argue that the categorisation of mental illness based on symptoms can be useful. But – and it’s a big, fat, hairy but – we must accept that those diagnostic categories are cultural constructions, not global certainties.

Culture-bound syndromes are most often the preoccupation of anthropologists. Typically, the patient displays symptoms that are recognised as indicating a particular illness only by other members of that patient’s cultural group. The dhat syndrome observed in parts of India, characterised by fatigue, anxiety and guilt and usually experienced by men, is a well-documented example of a psychological culture-bound syndrome, as is the susto, or fright sickness, of Latin America.

In a recent editorial in the British Journal of General Practice, Professor Christopher Dowrick argues that depression could be a western culture-bound syndrome, rather than a universal disorder. In support of his case, Prof Dowrick notes the lack of consensus in psychiatry over what even constitutes depression: the endless shifting of diagnostic goalposts.

He points out that there is no discrete genetic variation known to cause depression. Rather, there is genetic overlap across a range of mental illness, including depressive disorder, autism and schizophrenia.

Prof Dowrick’s point is that as China and India become politically dominant, spreading different concepts of what constitutes mental illness, we will have to be more sceptical of our cherished diagnostic categories. “In western anglophone societies we have developed an ethic of happiness, in which aberrations … are assumed to indicate illness,” he writes.

Others have argued that pre-menstrual syndrome, too, is a Western culture-bound syndrome. In 1987, Thomas S Johnson claimed that the symptoms were an expression of “conflicting societal expectations” on women. In 2012, a meta-analysis of published research failed to find evidence that negative mood correlates to the pre-menstrual phase of the menstrual cycle. And earlier this year, a qualitative study found that a “cognitive reframing” of the symptoms could reduce self-reported pre-menstrual distress.

Could depression and PMS really be culture-bound syndromes rather than biological entities? For sure, no one is arguing than they are not genuine illnesses – to the patient, the symptoms are real and painful. I used to be convinced by the biomedical model of depression, but now I’m not so sure. Could depression, and other familiar mental conditions, be interpreted as a kind of local language – our culturally established way of expressing distress and asking for help?

A DSM-style categorisation of illness based on symptoms could still be useful, provided we bear in mind that our local diagnostic categories are no more universal than our local language. We may also need to accept that treatments for mental disorder are not universally applicable. Culture-bound syndromes need culture-bound treatments: interventions recognised as “medicine” by both patient and practitioner.

It’s a very complex subject – not least because there may be crossover between the cultural and the biological; between the BPS’s dismissal of diagnostic labels and the NIMH’s desire to find a biomarker for every illness.

“I think the distinction between ‘biological’ and ‘social’ causes can get tricky. Lots of human practices that are clearly culturally patterned – child-rearing practices, diet, and sleep patterns, for example – affect our biology,” Dr Rachel Cooper, author of Classifying Madness, tells me in response to an email. “You could have cases where a ‘core’ biological disturbance is expressed differently in different cultures. Some have suggested that this might be the case with western-style depression and Chinese neurasthenia.”

And in the end, as Dr Cooper concludes, “A biomarker can only tell you that a person is different – not whether that difference should be considered pathological.” Much of mental pathology could be a consequence of culture.

Parkinson’s sufferers ‘face abuse’ because of symptoms

15 Monday Apr 2013

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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abuse, discrimination, drunkenness, Parkinson's disease, prejudice, symptoms

Parkinson’s sufferers ‘face abuse’ because of symptoms

Parkinson’s disease sufferers are being subjected to “intolerable levels of prejudice”, a charity has warned, after it was found that two in five of those afflicted with the disease have experienced discrimination because of their symptoms.

Parkinson’s UK said that 41 per cent of sufferers say they have been discriminated against because they suffer from the disease.

And 8 per cent said they have experienced hostility or have been verbally abused in public because of symptoms of the neurological condition , according to a new poll conducted by Parkinson’s UK on 2,900 sufferers.

The degenerative disease affects 127,000 people across the UK, and symptoms can include shaking, slowness of movement and rigidity.

The research, undertaken to highlight Parkinson’s Awareness Week, also found that one in five Parkinson’s sufferers have had their symptoms mistaken for drunkenness.

And almost a quarter of sufferers admitted they avoid going out at busy times of the day because they are wary of people’s reactions to them.

Steve Ford, chief executive at Parkinson’s UK, said: “Our research confirms that far too many people with Parkinson’s are having to battle against intolerable levels of prejudice.

“Life with Parkinson’s can be challenging enough, but when that is coupled with feeling scared to even go out in public for fear of freezing in a busy queue and being tutted or stared at – as over half the people we spoke to do – life can feel incredibly cruel.

“Time and again people with Parkinson’s have to fight against the old stereotype that the condition is just a tremor. This basic misunderstanding has sentenced people with Parkinson’s to a life of hurtful comments, being refused service in shops and even being shouted at in the street all because people have mistaken their speech or movement problems – a common symptom of the condition – for drunkenness.”

Sufferer Ruth Martin, a mother of two from Holmfirth, west Yorkshire, said that since her diagnosis in 2008 she has struggled to deal with how people react to her condition.

The 41-year-old said: “I’ve experienced all sorts of discrimination since I’ve had Parkinson’s, but one incident really stands out. I was having a bad day and was waiting in a queue in a pharmacy. The man standing behind me with his wife said really loudly to her “just stand back a bit love, the woman in front has been drinking”.

“I felt like crying but even so I told him that I had Parkinson’s. The whole shop was listening and there was part of me that wanted to scream out – I felt like I couldn’t go anywhere.

“People have been very confrontational towards me, and I have even been followed round a supermarket by a security guard who obviously thought I was acting suspiciously. I just wish that if people saw others staggering or struggling that it would cross their minds to wonder if they’ve got Parkinson’s.”

Anorexic Images – Who Needs Them?

01 Monday Apr 2013

Posted by a1000shadesofhurt in Eating Disorders

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anorexia, competitiveness, denial, Eating Disorders, emaciation, images, media, misconceptions, symptoms, weight

Anorexic Images – Who Needs Them?

I recently spoke to a journalist who was interested in covering my row to London for Beat. Her first question, before she even asked about what I was doing or why, was “Do you have any images of yourself at a low weight?” As soon as I calmly explained Beat’s guidelines on the topic, which advise ambassadors not to provide these sorts of images, she launched into a heated speech about how she “simply couldn’t understand why that was necessary” because if I was “claiming to have been anorexic” I would “need to prove it”!

I thought to myself that that is precisely the problem with the current state of the media: too many people assume they understand eating disorders by sight alone, rather than stepping outside of their comfort zone to consider the reality that they run much deeper than skin level.

Given the recent controversy on Twitter surrounding the portrayal of eating disorders on popular TV programmes, it is important to recognise that their basis lies in the psychological symptoms, NOT the physical alone!

Displaying images of sufferers in their skin-and-bone state puts too much focus on weight loss, which is in fact just one of many symptoms of eating disorders – and actually only applies to anorexia which accounts for just 10% of cases under the umbrella term ‘eating disorders’.

As a result this feeds the common misconception that in order to have an eating disorder one must be drastically underweight. In fact, many people who are diagnosed as having an eating disorder never fall below a healthy weight!

In my own fight for treatment I was turned away because I was not underweight enough, even though I had already reached the stage of amenorrhoea. It seems so dismissive to believe that anorexia in particular is categorised by emaciation; in my last blog I explained how even after three years of maintaining a healthy weight – and therefore by the media’s definition being recovered – I can still encounter the distorted cognition associated with the illness. The weight is simply a by-product of the thoughts, and so the thoughts are just as much present once the weight has been gained, and take far longer to work through.

Another common justification is that seeing such graphic images of starvation will make an anorexic ‘think twice’ about ‘what they are doing to themselves’. Anorexia is NOT a lifestyle choice that can simply be opted out of! They are not doing anything to themselves, they are being dictated to by the malicious voice of a genuine illness.

Susan Ringwood, CEO of Beat, has said: “Eating disorders are more hard wired than was first known to be the case… people with anorexia can know they are at risk of dying and can find that less terrifying than gaining a few pounds in weight”.

The ‘shock factor’ which is experienced by the typical reader, and is exploited by the media, does not affect someone with an eating disorder. Susan continued: “These images do not shock them, they excite, encourage and motivate them to get as thin if not thinner than the person depicted”.

‘Triggering’ can sound like such a trivial word, but the truth is that presenting emaciation as a validation of anorexia not only promotes the denial of being ill because a sufferer will never feel like they look like the person in the picture – and so they can’t have the same illness – but also brings out the innately competitive side of the illness and drives the need to restrict food further because they take the image as evidence that they can (and in their mind should) be thinner!

It is understandably difficult to comprehend the danger of these graphic images when to most people they serve as a catalyst for disgust, but I would urge anyone viewing such an image to consider it from the point of view of a person who is caught in the deadly grasp of an eating disorder. To these people, opening that magazine in which they sought a momentary escape from their own reality only to be faced with a representation of the idol who they feel they can never replicate merely reinforces the feeling of inadequacy, self-hatred and depression.

What health professionals should know about eating disorders

15 Friday Mar 2013

Posted by a1000shadesofhurt in Eating Disorders, Young People

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consequences, contact, counsellors, diagnosis, early intervention, Eating Disorders, family, friends, GPs, health professionals, health service, help, myths, nurses, psychiatrists, psychologists, recovery, sensitivity, social workers, support, symptoms, treatment, weight, young people

What health professionals should know about eating disorders

Over the course of two years, I have met with 40 young women and men who have shared on film honest details about their experiences of eating disorders. Their hope is that sharing their stories will help other people who are similarly affected to feel less alone and encourage them to seek help.

The research shows that common myths about the illness have prevented many young people from getting the treatment and support they needed, from family, friends and even the health service.

During the course of their eating disorder, young people came into contact with many different types of health professionals including GPs, nurses, counsellors, psychologists, psychiatrists, dieticians, social workers and other support workers.

There are some things that health professionals should know when dealing with a young person living with and recovering from an eating disorder.

Anyone can have an eating disorder

Anyone can become ill with an eating disorder. Eating disorders affect people of all ages, backgrounds, sexualities, both men and women. You can’t tell if a person has an eating disorder by just looking at them.

First point of contact is often critical

This first contact with services was often a huge step for a young person. People often found it very difficult to talk about what was going on, trying to hide their problems and it could take months, even years, to seek help. The way they were treated at this point could have a lasting, positive or negative, impact.

Young people hoped that the health professionals would realise just how hard asking for help was and to help nurture and support their confidence to stay in contact with services.

Early intervention is key

Young people often felt that people struggled to recognise the psychological symptoms of eating disorders as well as the range of different eating disorders.

If those who haven’t yet developed a full-blown eating disorder could be recognised, they can also be helped earlier. This is critical, as the longer eating disorders are left undiagnosed and untreated, the more serious and harder to treat they can become.

Effective, early intervention could be achieved when health practitioners were knowledgeable, well trained, sensitive and proactive.

Eating disorders are about emotions and behaviours, not just about weight

A common myth that many of the young people had come across was the thought that people with eating disorders were always very underweight. This idea had made it harder for some to get treatment and support or even to be taken seriously by their doctor.

In some cases, young people felt that the only way for them to be taken seriously and be able to access eating disorder services was to lose more weight. This could have serious consequences; the more weight they lost, the harder it was for them to be able to seek or accept help.

See the whole person, not just the eating disorder

Once in contact with health services, above all else, young people wanted not just to be seen “as an eating disorder” but to be treated as a whole person. It was important that they felt treated as individuals and for health professionals to realise that everyone responded differently.

A good health professional also tried to engage young people on other things than just the eating disorder, hobbies or interests.

Respect the young person

Feeling respected, listened to and being given the space to explain things from their perspective was important for young people during treatment and recovery.

Professionals should take their time and find out what was going on for that particular person, not act on assumptions. Health professionals shouldn’t patronise or dismiss issues that were important to the person in front of them.

This research, funded by Comic Relief, has now been published on online at Youthhealthtalk.org.

Ulla Räisänen is a senior researcher with the health experiences research group at University of Oxford, and was responsible for conducting the study published on Youthhealthtalk.org

The narcolepsy family’s house of sleep

03 Sunday Feb 2013

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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asleep, awakefulness, cataplexy, diagnosis, dreams, emotions, family, laughter, narcolepsy, sleep disorder, sleep paralysis, symptoms, treatment

The narcolepsy family’s house of sleep

Fixing appointments with the López family can be tricky. “Come round at midday,” says David López, when I speak to him on the telephone. “If you are lucky we will all be awake.”

They are not. David’s brother Miguel Angel, aged 36, has to be roused from the prone position. Their father Julián is here, as is their cousin Nuria, who keeps house, and admits that she is also finding it hard to stay awake. “This place is getting to be like a hospital ward,” says David as he squeezes his considerable bulk into a chair in their spacious but drab sitting room.

The family’s long, narrow Madrid apartment is a tunnel of doziness. Even at midday only a dribble of daylight enters, adding to the sensation of semi-wakefulness. Our conversation is accompanied by a symphony of yawning, eye-rubbing, occasional drifts into semi-slumber and sudden jolts upright as David, Miguel Angel and Julián snap back – or simply panic that they may have missed something. They do not want to seem impolite.

This gloomy apartment, on a street off Madrid’s small red-light district, is a house of sleep. It is a place of yawning, snoozing and snoring, of eye-rolling, swooning bouts of momentary cataplexy and of wildly vivid, violent dreams. It is also a laboratory for the future where the mysteries of narcolepsy and cataplexy, the twin demons of hundreds of thousands of people, may be revealed.

The López clan is the first-known example of an extended family of sufferers in the world. Rosa Peraita-Adrados, the Madrid doctor whose dogged detective work tracked down the disconnected branches of a unique family that was fractured by Spain’s bloody civil war, believes they could help to find a cure for one of the most puzzling of conditions. Their genes have already provided some of the strongest clues yet about what might be causing this strange and incapacitating sleep disorder.

Doctors once thought of narcolepsy and cataplexy as separate illnesses. The former provokes irresistible bouts of sleep; the latter is a momentary muscular collapse provoked by sudden emotions or laughter. Now it is clear the two things usually go together. David admits to often nodding off halfway through a task. He is so afraid of dropping dishes that he hugs them closely to his chest and walks very slowly to the dinner table. “It is just the fear,” his brother says. “I sometimes want to point this out, or make a joke or something, but that might be worse.” Laughter, he points out, is one of their worst enemies, as it provokes bouts of cataplexy.

Narcolepsy and cataplexy were both first described in the 1880s – and even then the first case of the latter, discovered by German doctor Carl Westphal, was a family problem, shared by a mother and son. About one in 5,000 people are thought to suffer from a condition whose prevalence varies across the globe, with some 12,000 in Britain alone.

Living with the illness can be tough. Sufferers struggle to stay either awake or asleep for a sustained period of time. Luckily for me, the Lópezes are enjoying our chat. “The worst thing is boredom,” explains David, who is 30 and, like his brother, is out of work. “If I am doing something I really like, or a project I am working at, then I can keep going for hours. The blood reaches your brain and keeps you going. But the moment you relax, the blood doesn’t get there and off you go.”

“Often you don’t realise yourself what is happening,” explains Miguel Angel. “Someone says: ‘Hey, you are falling asleep.’ And you say: ‘No. No I am not.’ But you are.” “And then,” adds their father, “it is goodbye and you are out.”

Miguel Angel says that he has to tell any new friends about his condition immediately. “But if you want a girlfriend then you have to find someone who is not only going to listen to you but can also understand what you are talking about.” One symptom, the violent dream, is a relationship-wrecker; Miguel Angel’s are terrifyingly vivid. “I’ve seen him hurl the bedside table across the room,” says David. “Or he is asleep shouting ‘Fire! Fire!'” Once, Miguel Angel grabbed his girlfriend – now ex – by the throat in the middle of the night. “I was upset with her about something and, rather than have it out with an argument, I took it to bed with me,” he says. “It must have been frightening.”

David, meanwhile, suffers persecution dreams. “Above all what you feel is fear, panic and sometimes you even experience your own death. It is like starring in your own horror film.” Julián’s cousin Jesús – another of Peraita-Adrados’s patients – battles with everything from monsters to gypsy gangs, thrashing his limbs around in action-packed fights. But not all the dreaming in the house is bad. Sometimes euphoria strikes instead. “I have found my father chuckling loudly to himself in his sleep,” says David. “Sometimes I too have woken up laughing myself silly. It all depends on your mood.”

Dreams are so lifelike that they play tricks on the memory and sensations of déjà vu – associated with extreme tiredness in non-narcoleptics – are common and intense. “You are convinced you have lived it before,” says David. “In fact, you don’t know what is real and what is not.” Reality can be further scrambled by short episodes of microsleeps and automatic behaviour, when sufferers continue doing routine tasks even though they have actually fallen asleep for a few seconds. “I can walk along the street asleep,” explains Julián. “You hear what is going on, but can’t see because your eyes are closed. It lasts a few seconds and suddenly, bang! You wake up. Perhaps someone touches you, or your head starts falling and you wake up to recover your balance.”

David and Miguel ANGEL’S mother knew she was marrying into a sleepy family. In the working-class Madrid barrio of Lavapiés, their great-aunt Teodora was known as la dormida – the sleeping one. On the other side of Madrid, Julián’s twin brother, Andrés, recalls other members of the family who were famous for their doziness. “Our own mother, Rosa, could walk down the street asleep,” he says. “I don’t know how she avoided being run over.”

Their grandfather Domingo had similar symptoms. Like many narcoleptics, however, Rosa and Teodora worked around their illness, keeping down jobs as cleaners. Andrés, now aged 63, has also held down jobs most of his life – though Peraita-Adrados thinks the night shifts he worked at one stage may have been the trigger for the symptoms of his illness to appear.

Teodora’s daughter Josefina, another sufferer who Peraita-Adrados tracked down in the modest Madrid barrio of Entrevias, says her mother and aunts developed their own mechanisms for controlling the disease. “My mother would fall deeply asleep on the bus or the metro, but somehow always woke up just before her stop,” she recalls. Teodora, Rosa and their sister Patro were known together as las bellas durmientes– the sleeping beauties – and, in their later years, the latter two could often be spotted snoozing together in the sunshine on a bench outside the barrio’s church. “We would all be eating together and suddenly both would be sitting there dozing. I remember Aunt Patro falling into her food,” Andrés tells me. “Yes,” says his cousin Jesús. “Patro was the real number!”

“Our mother was always on the lookout for the illness in us when we were children,” says Miguel Angel. But symptoms often do not appear, or become striking, until the late teens or early adulthood. The brothers first noticed theirs in their mid-20s, though David recalls suffering an intense version of a common schoolchild’s problem – staying awake in class. “I swear I slept through half of them,” he said.

Peraita-Adrados first became aware of the family history when Andrés was referred to the sleep disorder and epilepsy unit she runs at Madrid’sGregorio Marañón University Hospital. “The first time I saw Andrés,” she says, “he told me he had a twin brother, Julián, who had been diagnosed in another hospital. And Julián’s children had also been diagnosed, but no one had put them all together. That was when I realised this might be interesting. There had been very little studying of families, so I got into contact with Professor Mehdi Tafti at the Centre for Integrative Genomics at the University of Lausanne, and said, ‘This is important, why don’t we study it?'”

It took Peraita-Adrados years of trawling through records at various Madrid hospitals to trace the members of the clan and find their clinical histories. Different branches of the family went their own ways during the Spanish civil war in the 1930s, after they emerged from that conflict – like much of the militantly left-wing working class in Lavapiés – on the losing side. Rosa and her husband were both jailed after General Franco’s right-wing nationalists took Madrid in 1939 and rounded up many of those who had defended the city or joined the communist, socialist or anarchist groups that had helped run the Spanish capital over the previous three years. The twins and their four other children were distributed around the family and spent periods of their childhood apart. Their father was a candidate for the firing squad, but ended up with a long prison sentence; Rosa got out of jail earlier and later had children with another man. Death and prison fractured the clan, leaving a plethora of half-siblings and a split Spanish family. “It is true there are a lot of us, but we hardly ever see them. Not aunties or cousins or anyone,” explains David. “Not that I’ve ever felt the need. It has just always been like that.”

Now a family tree starting with great-grandfather Domingo covers 48 people over four generations, with 14 members of the third and fourth generations showing symptoms of narcolepsy-catoplexy. Fewer than 10% of narcolepsy-cataplexy sufferers have relatives with the illness, and only 1 or 2% share it with more than one other person in their family. Certainly no family as extended as this has been available to study before, offering a unique opportunity to reveal some of the genetic secrets of the disease.

“There is evidence that the origin of the illness is autoimmune in the 95% cases which do not have an obvious genetic cause,” explains Peraita-Adrados. Sufferers seem to produce antibodies that attack the hypocretin neurons, stopping or slowing production. Doctors can now extract spinal fluid and test for hypocretin to make a diagnosis. “If the levels are very low, or zero, you know that this individual will eventually have cataplexy,” she explains. The few cases with a genetic origin that have been tested so far, like the López family, also show no hypocretin. “We found Andrés and Julían, the twins, had zero.”

The discovery of the hypocretin deficiency a decade ago was key to understanding the mechanism behind the symptoms. Produced in the brain’s hypothalamus, hypocretin (also known as orexin) plays an important role in a person’s alertness. It also affects feelings of fullness, which explains why narcoleptics often develop strange eating patterns and may become obese.

Now the tests on the López clan provide clues about what may be going wrong at a genetic level. The most important discovery is a mutation on a gene known as MOG, which is shared by all sufferers in the family, but none who do not have the illness. This gene codes for a protein called myelin oligodendrocyte glycoprotein, which plays a key role in maintaining the central nervous system via an insulating material called myelin. The MOG gene has been linked to everything from schizophrenia and bipolar disorder to multiple sclerosis. Researchers are understandably excited by the discovery of a mutation in a family of people suffering narcolepsy with cataplexy. The task now is to try to find a link between myelin in the central nervous system and hypocretin deficiency. “What we are trying to do is complete the chain of the mechanism to work out how this mutation, which provokes a change in the myelin, connects to the part that we know about the symptoms and their mechanisms,” says Peraita-Adrados.

Cataplexy generally, but not always, appears several years after the symptoms of narcolepsy are clear. It comes on suddenly, usually caused by a sudden surge of emotion. Sufferers lose muscle tone from their head downwards – jaw or neck muscles slacken, eyes begin to roll and finally legs start feeling weak and may buckle. “It starts with my mouth being blocked, and then I see that I am beginning to lose strength. I can’t walk. Either I stay still or I sit down,” explains Andrés, who was a first division football linesman and still holds down a weekend job as a referee. “It is as if I had gone out drinking and got totally plastered. Once it happened to me in the Puerta del Sol square and I remember people looking at me as if I was a stumbling drunk.”

Jokes, his cousin Jesús explains, are another problem. Laughter, excitement, intense sadness or strong emotions of almost any kind can set him off. “Your neck feels weak and then your head just tips over.” Even watching soccer matches can be tricky. “I can’t celebrate Real Madrid’s goals,” he says. “Everyone else is jumping up and down and shouting, but I try to limit myself to just clenching my fists in celebration. If I screamed, I’d just fall over.” Miguel Angel asks friends not to rag him. “They don’t always remember. The other day we were helping a friend shift boxes of fire extinguishers and everyone started mucking around and having a laugh. Suddenly the cataplexy came on, so I had to stop.”

Another common symptom is sleep paralysis, when they wake up, but cannot move or speak for up to two minutes. “Obviously your breathing muscles don’t seize up, but the rest of your musculature is completely paralysed,” explains Peraita-Adrados. “It produces huge anxiety.”

Treatment is currently restricted to lifestyle changes or trying to block sleep and cataplexy attacks. “You don’t cure the illness, you fight the symptoms,” says Peraita-Adrados. American patients get amphetamines, while European doctors prescribe other stimulants. The new generation of Prozac-style anti-depressants help control cataplexy, though no one is sure why. Sodium oxybate, used in Europe for anaesthesia in the 1960s, is the only drug that improves nocturnal sleep and daytime symptoms. German investigators have begun to produce hypocretin – a key peptide that narcoleptics lack – and this holds out one hope for a cure, but it is still early days.

In another sleepy apartment on the other side of Madrid, Josefina struggles to get through stories about her children and grandchildren. The love she feels, and the waves of emotion her stories provoke, send her into brief bouts of cataplexy. Her 32-year-old son, also called David – who first noticed the symptoms while serving a drugs-related jail sentence – suffers from them, too. “If I get angry or argue with someone then my legs start to go,” he says. “The last time was three days ago when I got angry with a guy on the bus and started telling him off.”

Standing by Josefina’s front door, as we say goodbye, we talk about pet dogs. “Mine died just three days ago, in David’s arms,” she says. The thought brings on a wave of sadness. Josefina’s eyes roll over, her head tilts forward and she grabs for the doorframe, crumpling against it. Her cataplexy, explains Peraita-Adrados, is among the most severe – occasionally laying her out on the ground. Accidents happen. “I’ve burned myself a couple of times with cooking oil,” Josefina admits. “I’ve seen her fall when she was doing the ironing, even when eating watermelon,” says David.

Many sufferers manage to lead almost normal lives, holding down jobs, pursuing hobbies and raising children. Medicines, siestas and knowing their own limitations all help. The former head of the Spanish patient’s association, for example, regularly drives 300 miles from Alicante to Madrid on his motorbike. Learning to repress emotions is one of the worst side-effects of the illness, says Peraita-Adrados. “Adults can have terrible lives. I’ve seen failed marriages and lots of people with problems at work. I had one patient who was a long-haul truck driver, doing journeys from Madrid to Amsterdam and, of course, he had an accident. He suffered with head injuries, but fortunately his life was saved.” One member of the López clan had been a taxi driver.

“But the worst thing is the children,” she says. “We are now seeing symptoms appear at a fairly early stage. These kids fall asleep in class and get called dozy-heads. They are fat, so they can’t play. And then cataplexy starts to appear. They have to learn to control their emotions. They realise that when they are watching cartoons, for example, they can fall into cataplexy – and they just don’t understand what is happening. I have a lovely little patient – the youngest I have ever seen – a girl called Natalia who is just six years old. She is an adorable, beautiful child. I asked her to draw me her dreams, so she did a lovely little drawing of her going over a bridge, but there was a monster there. I asked: ‘And what is that?’ And she said: ‘Well, if I laugh I could fall and then the monster could come and attack me.’ Her mother says she laughs less and less.”

The genetic study may come too late to help the generation of Julián, Andrés and Josefina – but sufferers like Natalia will benefit if their extended family helps fill in the gaps in the chain of cause and effect. “If by studying us they can get close to finding a cure, then that would be fantastic,” says Miguel Angel. “It would be great,” agrees David. Their father does not join the chorus. He looks as if he is about to doze off on the sofa.

Children With Cancer ‘Bullied When They Return To School’ Charity Says

05 Wednesday Dec 2012

Posted by a1000shadesofhurt in Bullying, Cancer, Young People

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Bullying, Cancer, Children, support, symptoms, treatment

Children With Cancer ‘Bullied When They Return To School’ Charity Says

One in three children with cancer were bullied for their symptoms, such as losing their hair, when they went back to school, according to a children’s cancer charity.

CLIC Sargent reported more than a third of parents they surveyed said their children had been bullied for the effect of cancer, such as gaining weight from steroids. One child was even told by their classmates he was going to die.

The report, No Child With Cancer Left Out, revealed as many as 36% of parents said they did not believe their children received the help needed to keep up with school, while more than a third said they did not have any say in how their child’s illness was communicated.

The survey revealed two thirds, or 62%, of parents felt their children needed home tuition to help get them back to school.

The report, published to mark Childhood Cancer Awareness Month, found that almost half of parents said their child had grown apart from their friends.

Josh Hill, 13, from Cheshire was diagnosed with acute lymphoblastic leukaemia when he was five years old, he was bullied when he returned to school and found it “emotionally difficult.”

His mother Lynda said after missing half of year one of his primary school, and bits of his second year, he was often “really isolated.”

“He didn’t like joining in with things with his friends and always wanted to be around me. I would take him to friends parties or activities. He didn’t want to go, but I wanted to take him to help him keep connected to his peers.

“He was really frightened and getting him there was difficult, even though he knew the children, but once he was there, he was OK.” they said.

Oliver Roberts, from Newcastle, 7, was diagnosed with a brain tumour in 2010. His Mum, oncology nurse Karen and Dad, oncologist Mark, said he missed two years of school due to his illness. One effect of his treatment is he now has learning disabilities.

“Because childhood cancer is so rare people are less aware of the lasting effects, which makes it harder to access extra support services too,” they said. “The first thing was getting him through treatment, but now a year later, we’re thinking ‘oh my goodness’ because there are so many lasting impacts.

“He really needs individual support; he needs someone that knows how to teach Oli because his case is so complex. Teachers simply cannot teach a class of 30 children, including a child like Oli who has such specific needs. He doesn’t just have educational needs either, he has physical needs.

“Children at Oli’s age need to be caught early, or else you end up with a child who is going to be very disadvantaged in secondary school. I know that he can learn, but it’s not without a lot of effort and special help.”

CLIC Sargent’s chief executive Lorraine Clifton said the reports of children being teased and bullied were distressing.

“Sometimes parents, already struggling to cope with their child’s diagnosis, have to fight to get the help their child needs – and they can feel really let down by the system,” she said.

“Funding can be an issue, so we are calling on government and local authorities to ensure children with cancer do not lose out on the home tuition they need because of any more funding pressures in the future.”

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