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Tag Archives: dementia

What they don’t tell you about dementia

30 Friday Jan 2015

Posted by a1000shadesofhurt in Uncategorized

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Tags

dementia, diagnosis, support

What they don’t tell you about dementia

My mum doesn’t know who I am. Sadly, I don’t mean that in an angsty way – she literally has no idea who I am. Sometimes I’m her sister. Sometimes I’m her dead mother. Once I was Shirley Bassey, which made for an interesting evening. My mum was diagnosed with dementia with Lewy bodies three years ago, when she was 64 and I was 30. She’d just retired, and we were looking forward to spending more time together.

I’d spent my 20s doing my own thing, having selfishly assumed that we’d have lots of time to get to know each other properly when I got bored of clubbing. I was wrong. Instead of visiting coffee shops, we ended up visiting the memory clinic. After months of appointments we were finally sent home with a diagnosis, an information leaflet and a six-month review booked in to see how we were getting on. I imagine it’s a bit like going home with a newborn baby, but with less support and no balloons. Having previously struggled to even take care of a houseplant, I was fairly apprehensive at the prospect of becoming a carer.

As mum’s dementia progressed I came to realise that despite all the meetings, visits and consultations you have to go through to even get to the diagnosis, nobody actually tells you about the reality of this horrendous disease. They don’t tell you how to deal with your previously gentle mother swearing at you, or that she’ll hit you around the head as you desperately coax her into the bath. Neither do they tell you what sort of nappies to buy when she becomes incontinent, let alone how you’re supposed to persuade her to wear one or stop her taking it off and stashing it in a pillow case. I thought I might be changing nappies at some point in my 30s, but I didn’t imagine it would be like this.

They don’t tell you about the hours of bureaucracy and meetings with social services that you have to trudge through, when what you desperately need is some advice and support. They don’t tell you that it takes six months for them to assess whether you’re entitled to even get on the waiting list for advice and support. They don’t tell you what to do when she thinks that the small boy you pass on your walk is her grandson, and tries to talk to him. Nobody tells you how to placate the angry parents who think they’ve encountered the world’s frailest child-snatcher. I had no idea what to say to the helpful passerby who insisted on intervening because he’d mistaken her having a meltdown in the street for a geriatric kidnapping.

They don’t tell you how to deal with the crushing realisation that she’s never going to phone you again, let alone see you get married or be a grandmother to your kids. Nobody tells you how to channel the anger you feel that your fellow thirtysomethings’ lives now involve marriage, mortgages and children, and yours revolves around a terminally ill, confused old lady who doesn’t even know who you are. They’ve chosen their responsibilities; you’d give anything not to have yours.

They don’t tell you that once she nears the final stage you’ll spend hours desperately trying to feed her a spoonful of hospital jelly even though she’s pretty much given up on eating, because you can’t just watch her starve to death. It doesn’t matter how distraught you are that she’s wasting away before your eyes, or how much it upsets you to agree to the doctor’s request for a DNR order; this disease is relentless in its cruelty.

Dementia has robbed my mum and me of the time we were supposed to have, and I’m still not sure how to feel about it when there’s nothing tangible to mourn. “Waking grief” – that’s what someone called it. When the person you knew is gone, but not gone. But it’s not. It’s a waking, sleeping, relentless cloud of despair that never quite goes away, even when you think you’re OK. But then nobody tells you how to grieve either, do they? Especially when there’s no funeral to go to, just an endless stream of pointless review meetings.

Doctors are refusing to carry out ‘pointless’ tests for dementia, warns Jeremy Hunt

15 Tuesday Jan 2013

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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Alzheimer's, dementia, diagnosis

Doctors are refusing to carry out ‘pointless’ tests for dementia, warns Jeremy Hunt

Doctors are refusing to carry out tests for dementia as they believe it is pointless as there is no effective cure available, Health Secretary Jeremy Hunt has said.

Mr Hunt said the country should be “ashamed” that so many people were being denied treatment which could stave off the condition for years.

His comments came as the Alzheimer’s Society warned dementia sufferers were facing a postcode lottery of diagnosis rates.

It released data suggesting that in some areas of the UK, as few as one in three people suffering from the condition will receive a formal diagnosis, while in other areas three quarters of sufferers will be told by a doctor about their condition.

Across the UK just 46% of sufferers were diagnosed in 2012, the society said.

Mr Hunt said that attitudes in the NHS and in wider society had to change.

“As with cancer in the past, too many health and care professionals are not aware of the symptoms,” he wrote in an article for telegraph.co.uk.

“Some even believe that without effective cure there’s no point putting people through the anxiety of a memory test – even though drugs can help stave off the condition for several years.

“It is this grim fatalism that we need to shake off. Not just within our health service but across society as a whole.

“It can be a total nightmare getting a diagnosis – and the result is that, shockingly, only 46% of all dementia cases are identified.

“Yet with access to the right drugs and support for a partner, someone can live happily and healthily at home for much longer. We should be ashamed that we deny this to so many people in today’s NHS.”

The charity said that while the latest figure is an improvement on the previous year, there are still thought to be 428,500 people in the UK who have the condition but have not been diagnosed.

This means they are going without the support, benefits and the medical treatments that can help them live with the condition, charity chief executive Jeremy Hughes said.

Diagnosis rates were best in Scotland where 64.4% of of suffers were told about their condition. In Wales, just 38.5% of sufferers formally received a diagnosis in 2012.

And 44.2% of people with the condition in England were diagnosed compared with 63% in Northern Ireland.

Belfast Health and Social Care Trust provided the best diagnosis rates in 2012, with 75.5% of patients being diagnosed.

But in the East Riding of Yorkshire Primary Care Trust, just 31.6% of patients received a formal diagnosis, according to figures produced from data generated by the Government’s qualities and outcomes framework.

The charity has produced an interactive map highlighting the variation in dementia diagnosis across the UK.

It said that the new data also suggests that the average waiting time for an appointment at a specialist memory clinic is 32.5 working days – more than the recommended four to six weeks. Some memory clinics reported waiting times of up to 9 months.

Mr Hughes said: “It’s disgraceful that more than half of all people with dementia are not receiving a diagnosis, and disappointing to see such a disparity in diagnosis rates in different regions of the UK.

“This goes against best clinical practice and is preventing people with dementia from accessing the support, benefits and the medical treatments that can help them live well with the condition.

“Studies show that an early diagnosis can save the taxpayer thousands of pounds, because it can delay someone needing care outside of their own home.

“The NHS has already made a commitment to improving diagnosis rates but more needs to be done to ensure people with dementia are able to live as well as possible with the disease.”

The Alzheimer’s Society estimates that 800,000 people in the UK have a form of dementia and more than half have Alzheimer’s disease. The figure is estimated to rise to a million by 2021.

Initial signs of the dementia, which is caused by diseases of the brain, may include short-term memory loss that affects every day life, problems with thinking or reasoning, or unexplained anxiety, anger or depression.

How One Charity Is Tackling Complex Mental Health Problems Using The Simple Power Of Reading

06 Tuesday Nov 2012

Posted by a1000shadesofhurt in Uncategorized

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books, Children, confidence, dementia, literature, mental health issues, MS, physical health, reading, relaxation, symptoms

How One Charity Is Tackling Complex Mental Health Problems Using The Simple Power Of Reading

It is, as one member of the Reader Organisation puts it to me, like watching a dozen tiny miracles.

Sat around a kitchen table in a mental health ward in central London, five patients are munching biscuits and taking turns to read out loud from Great Expectations.

We pause after the scene where Pip meets Miss Havisham sat alone in her cobwebbed bedroom.

Lucy, a London woman in her 30s who looks far older after years battling alcoholism, speaks first.

“It’s like me when I was drinking, that is” she tells the group with a nervous chuckle.

“I couldn’t let go of who I was. Couldn’t move on.”

We pick up the story again until Pip is humiliated by Estella, runs away and kicks a wall in frustration.

Ryan, a Scotsman with big, bunched shoulders says in an intense, slow voice that he felt exactly the same way as Pip that morning talking to his doctor.

“You can feel patronized at every stage in life, especially when you’ve got a mental illness,” he says.

“Doctors, people in shops, your children’s school teachers…” he flares up momentarily, getting angry as he tells the anecdote, then relaxes so we can carry on the story.

Up until this point Jan, a softly-spoken woman in her late 50s who has suffered for years with manic depression has remained politely quiet.

But at the group’s request she takes a turn to read in a beautiful, expressive voice which everyone compliments afterwards. She ends with a smile and begins happily nattering about how much she loves Dickens, before catching herself.

“I can’t believe I just started a conversation!” she says, blushing.

For ten years, the Reader Organisation has been helping some of the most vulnerable people in society feel better by carefully harnessing the power of reading.

In schools, care homes, psychiatric wards and local libraries across the UK, sessions held by one of over 40 trained facilitators provide a haven for troubled kids, elderly people battling dementia and people with a range of mental illness, from depression and schizophrenia to drug addiction.

The format of the sessions is very simple. Taking it in turns to read, the facilitator and the group work through a novel or short story, pausing at key moments to share their thoughts about the story and how it makes them feel. Then they end with a poem.

There is no attempt to ‘analyse’ the texts in any academic sense, just to empathize with the characters and debate the plotlines. But then there is no ‘dumbing down’ either – the reading list is resolutely classic, from Shakespeare to Steinbeck to Wordsworth and the Romantics.

The therapeutic benefits are two-fold. First as Jane Davis, the charity’s founder and a former literature tutor, puts it: “there is something about reading aloud, something rhythmical, comforting, childlike and secure that either directly or indirectly addresses that inner weather we all experience. That’s why people love it.”

The second, particularly for people suffering from mental health problems like those I meet in London, is the opportunity to share how they are feeling with others through a form of displacement.

The characters in Great Expectations or Shakespeare or any of the texts the Reader Organisation use function as vessels – or as Dr Kathryn Naylor, an Associate Specialist in Forensic Psychiatry at Ashworth Hospital puts it: “a way of expressing emotions without having to say what’s really upsetting you.”

Naylor treats men who are mentally disordered offenders, and has been using The Reader Organisation as a supplementary exercise with her patients (“it’s not therapy it’s therapeutic” she explains) for many years.

The results, she says, can be amazing.

“We had a man with us in his early 40s with paranoid schizophrenia, who was very suspicious of other people’s motives. He found it very hard to talk to people and had bad social anxiety.

“He started coming to the reading group and just sitting in the corner and listening. This happened for about 3 months, when eventually one day at the end of a session he suddenly said: ‘can I read the next page?’.

“We saw that as an incredible breakthrough, being able to read in front of other people. That was accompanied by him engaging in cognitive behavourial therapy, looking at some of the underlying reasons for his paranoia and mental illness.

“The group brought about real progress for him. He has since left the hospital. Prior to the group he felt he couldn’t even leave the ward.”

The Reader Organisation wasn’t founded with the aim of helping people’s mental health. Instead, it was born out of Jane’s belief that the great works of literature should be accessible to all, no matter their background.

“Books did something for me that helped me have a different kind of life to the one I was heading for,” she explains.

“I had been a 12-year-old run away. Someone who at a young age had been using drugs and drinking a lot. I was disturbed teenager who had a shoddy education, so when I got my degree and even my PHD I still very strongly had a sense of myself as not being properly educated.

To end up as a university lecturer, she says, felt amazing.

“But I couldn’t help thinking that out there in the wide world was someone like me in a bus shelter who needed to find the same things I’d found.”

After 15 years teaching the canon to bored undergraduates mainly from comfortable middle class homes at the University of Liverpool, Jane finally found an opportunity to try out her theory. In 2002, she was given a £500 budget to set up a reading scheme under the university’s new objective of ‘widening participation’. It would prove to be not just a turning point in her life, but go on to change many others.

“It was a one off, 5 week summer project. The idea was take some books I thought was great out of the university and out into places you wouldn’t expect to find a lot of readers. I recruited a lot of the people in that first group through friends who worked in community work. They weren’t very literate, so I just read to them.

“It was fantastic. It was like meeting up with people from my childhood – the ones I used to meet in the pub where I worked – but instead of serving up beer and vodka I was serving up Shakespeare. People loved it and realised that this was what I wanted to do. I did one more year at the university and kept the group up in my own time. Then I handed my notice in.”

The first few years were a struggle as Jane tried to find funding for a project that didn’t give anyone qualifications or get them into work. But it was as she gathered feedback from participants that Jane realised the true potential of her inclusive, accessible approach to sharing literature – not to educate, but to heal.

“We were frantically trying to gather evidence so that at the end of our year we could justify the project continuing. So we began asking the people attending the group: ‘what’s it done for you?’

“The responses were astonishing. People would say: ‘I’ve got MS, and when I come here for two hours a week I seem to get into such a state of relaxation I become unaware of my symptoms’, or ‘I have chronic pain but I forget about it here because I’m so immersed in the reading.’

“We knew that a number of the people attending had serious mental or physical health issues, but these were powerful and surprising moments. As well as giving people the confidence to read Shakespeare, we were making them feel better too.

“A woman said: ‘I’m bipolar and I’ve been bipolar for 30 years and I’ve tried everything to get better, but this is brilliant. It should be available on the NHS.’”

These early responses would send Davis’ project on a whole new trajectory, and change her entire outlook on what the Reader Organisation could achieve.

“I’d never thought of it in those terms before. But if one in four of us have mental health issues, it must really be more like two in one, because they’ll be a lot of people out there like me who have had mental health problems but didn’t bother going to see a doctor about it.

“Now I don’t think of ‘healthy’ and ‘unhealthy’ as two separate states, I think they’re on a continuum. I realised that what was true for me as young adult – that I love reading because it makes me feel great – could be true for anyone with a little help.”

If this all sounds rather anecdotal, there is a weight of academic evidence to support The Reader Organisation’s claims too.

A study carried out by the University of Liverpool in 2011 looked at the long term affects of participating in Get Into Reading, The Reader Organisation’s flagship program, on older people living with dementia.

They found that regular attendance was effective at improving the memory and concentration of patients, and had a positive long term impact on reducing symptoms such as delusion, anxiety and irritability. It concluded: “the Get Into Reading model should be extended to all care homes.”

Today, the Reader Organisation has just celebrated its tenth anniversary. It now runs 100 weekly reading group in its original home of Wirral alone, and has teams set up in ten different boroughs of London and areas of South Wales, Belfast, Durham and Glasgow – as well as sister projects in Denmark and Australia.

Speaking to anyone involved, from the nurses and volunteers who facilitate the groups to the readers themselves, what comes through is the overwhelming potential everyone feels the scheme has.

“There are a lot of areas of life where what we do could work,” Jane tells me when I ask about the future.

“The army for example. Veterans. People with post-traumatic stress – why not?”

Give it another ten years, and perhaps we’ll no longer see reading as simply as a source of pleasure or a route to education but a way to tackle diseases of both the body and mind.

To learn more about The Reader Organisation check out their website.

Footballer Gordon Banks and Sir Michael Parkinson reveal dementia heartbreak

23 Sunday Sep 2012

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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anxiety, awareness, carers, dementia, Depression, diagnosis, family, healthcare, memory loss, stigma, support, symptoms, treatment

Footballer Gordon Banks and Sir Michael Parkinson reveal dementia heartbreak

Former England footballer Gordon Banks and Sir Michael Parkinson have relived their heartbreaking personal experiences with dementia to inspire the nation to reduce the stigma about the condition.

The pair, alongside broadcaster Fiona Phillips, are also encouraging people who think they have any symptoms of the condition to seek medical advice.

New research from Alzheimer’s Disease International (ADI) found that a quarter of people hide their diagnosis because of negative connotations surrounding dementia.

Phillips, whose parents both had dementia, said if her mother had been diagnosed earlier then she could have handled the situation better.

“I would have been able to plan more for mum instead of doing everything in a big rush,” she said.

“Our house always smelt of baking when we were little and I used to love helping mum make cakes and there were always cakes in the tin.

“She rung me up at 3am one morning crying her eyes out and she said: ‘I’ve forgotten how to make cakes’. And my childhood went then.”

Sir Michael said: “The ultimate problem you have to face with anyone who has any form of dementia is that you lose them before they die.

“I lost my mother 18 months to a year before she died and that is the ultimate desperate tragedy.”

Banks, whose brother David suffered from the condition, recalled: “We sat in the lounge talking to him and we would ask him a question and he would just go blank – he wouldn’t answer it – he couldn’t remember what we were discussing.”

The trio have joined a government campaign to increase early diagnosis rates for dementia.

The new campaign, which is part of Prime Minister David Cameron’s pledge to help change people’s understanding of dementia, has been launched today on World Alzheimer’s Day.

Ministers hope it will raise awareness of the condition, what initial signs and symptoms look like and how to seek help.

Mr Cameron said: “Dementia is a devastating disease that puts enormous strain on people and their families.

“Shockingly, nearly 400,000 people are unaware that they have the condition and so we want to make sure more people know what dementia is and how to spot those tell-tale signs.

“With the number of sufferers set to rise in the years ahead, I am determined that we go much further and faster on dementia.

“That’s why I launched a Challenge on Dementia in March, doubling the research budget and working across society to improve health and care, and supporting people to live well with the condition.”

Health Secretary Jeremy Hunt added: “Our goal is to make this country a world leader in tackling the challenge of dementia.

“That requires us all to play our part, including being brave enough to start conversations about dementia to get our loved ones the early help we know makes a difference.

“Awareness is just the first step towards tackling the stigma around this condition and we need to work together if we’re going to help those living with dementia have a better quality of life.”

Jeremy Hughes, chief executive at the Alzheimer’s Society, said: “Talking to a loved one about dementia will probably be one of the most difficult conversations you ever have, but it will be worth it.

“Early diagnosis is crucial in helping people with dementia to access the support and help they need to live well with the condition.”

Research, released today by the ADI, also found that three quarters of people and 64% of carers believe that there are negative associations for those diagnosed with dementia.

The report, based on a survey of 2,500 sufferers and carers from 50 countries, also found that two-fifths of people say they have been avoided or treated differently because they have dementia.

Marc Wortmann, executive director at ADI, added: “Dementia and Alzheimer’s disease continue to grow at a rapid rate due to global ageing.

“The disease has a huge impact on the families that are hit, but also affects health and social systems because of the economic cost.

“Countries are not prepared and will continue not to be prepared unless we overcome the stigma and enhance efforts to provide better care for those who have dementia and find a cure for the future.”

Initial signs of dementia, which is caused by diseases of the brain, may include short term memory loss that affects every day life, problems with thinking or reasoning or unexplained anxiety or depression.

The UK’s dementia research charity has also pledged to give £5.5 million to fund scientists researching the condition.

Alzheimer’s Research UK said the money will go towards 52 new grants aimed at understanding the causes of dementia, improving diagnosis and finding new treatments and preventions.

More:

Fiona Phillips-A Day to Remember for World Alzheimer’s Day

Michael Parkinson- A Day to Remember

Gordon Banks- A Day to Remember

How would it feel if you couldn’t recognise your own family?

21 Tuesday Aug 2012

Posted by a1000shadesofhurt in Brain Injury, Neuroscience/Neuropsychology/Neurology

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'face blindness', Alzheimer's, autism, brain impairment, brain injury, Children, dementia, face processing, facial perception, Memory, new national centre to study, parents, prosopagnosia, stroke, treatment

How would it feel if you couldn’t recognise your own family?

Imagine waking up and not knowing who’s sharing your bed. Imagine collecting a child from school – but picking up the wrong one. Or being a mother and not being recognised by your own child. These are all the problems faced by around a million people in the UK today. Among the famous sufferers are Duncan Bannatyne of Dragons’ Den, playwright Tom Stoppard and Jane Goodall.

It’s called face blindness – or prosopagnosia. It affects more people than Alzheimer’s and autism and, just like dyslexia before it, it’s a hidden handicap that gets people in trouble every day.

But a new national centre to study the condition has been established and pressure is building up on the NHS to recognise the condition and to get the public to understand it and sympathise with the sufferers. There’s also pressure for children to be tested because, after an experiment in Australia there may be hope of treatment. There, in Sydney, an eight-year-old boy identified only as “AL” was put through a long series of tests using grey scale photographs to retrain his brain. For the first time psychologists here are hoping there might finally be a solution. In a letter to the British Medical Journal Dr David Fine, himself a sufferer, revealed the torment of his early life. He wrote that the condition “has shaped my life”. He added: “I often fail to recognise my children or even my wife.” The doctor, from Southampton, is calling for a simple children’s test “so that the next generation of sufferers grows up in a society that understands and recognises our disability”.

Leading researcher Dr Sarah Bate, of Bournemouth University, also wants to develop a way of training sufferers with the condition. She’s just got funding to start a new national centre to study prosopagnosia and she’s already been contacted by 700 individuals offering to be tested. A number of parents who think their children might be sufferers have been in touch and now a joint project with the University of St Andrews is under way – the first attempt to improve these children’s skills at face processing.

Bate has found that part of the problem is the British tradition of wearing school uniforms. She says: “We had one boy of five and the only friend he could make – simply because her face was different – was a Chinese girl.”

In the United States, where they don’t use school uniforms, there was no such problem. And some children, she found, couldn’t even recognise their own parents. One teacher with the condition only coped by the use of seating plans. But when the pupils played up by swapping seats he got depressed and got a post at the Open University corresponding by email.

Dr Bate says: “We’re wondering whether, if we could test children at, say, seven, there might be a chance that some training could help. It’s going to be an uphill battle but we do need those tests – just as they have them for dyslexia.”

A classic case is former IT teacher Jo Livingston, 67, from Bexley. She suffers from the condition and, having retired, is now touring schools and giving talks to make people aware of the problem. Even now, she only recognises her husband “because he has a beard and talks a lot”. They met in their 20s as members of a climbing club.

She says: “When you’re climbing you always wear the same clothes and if someone wears a red anorak they’ll be in a red anorak next week. So I married the one in the red anorak because that was the one I was looking for. Now I do the talks so that people can know about it – so they can have that ‘that’s me’ moment.”

Livingston has found instances where a woman could only be sure it was her baby in hospital if it was the one with a cuddly toy in the cot. Another woman said she was at a festival, looking for someone she’d planned to meet and only later found she’d been chatting to Ronan Keating. And a Hollywood engineer couldn’t even recognise Brad Pitt when they shared a lift.

“Television’s very difficult because characters change clothes and hairstyles and sometimes the plot hinges on that,” Livingston says. “You see two young blond women and you think they’re the same person until they appear on screen together and then you mentally have to rewrite the entire plot. It’s quite exhausting.”

Another sufferer is social worker Nerina Parr, 44, from Brighton. She says: “It’s the new dyslexia… nobody could explain what it was and half the time they didn’t have any sympathy with it anyway. It’s always getting me into trouble. For instance, my partner changed the picture of us on my bedside and I got really jealous and demanded to know who this new person was… then there’s the nightmare of walking into work meetings and not knowing who the people are – even though you work with them.”

Anna Cady, a 60-year-old artist from Winchester, thought at one stage that she had Alzheimer’s or dementia. “So when I found out what it was it was a tremendous relief. Then again, I did some tests on the internet and ended up sobbing my eyes out because I couldn’t even tell when they changed the faces. The awful thing is that you dread going outside because you might offend someone by not recognising them. When someone says ‘hello, Anna’ your heart sinks because you just hope you aren’t going to offend someone.”

If you think you have face blindness and would like to be part of the research you can register at prosopagnosiaresearch.org

Face blindness: Causes and cures

Prosopagnosia or face blindness can be caused by stroke or brain injury, but some people are born with it or develop it despite having no other signs of brain impairment. Recent research suggests it may sometimes be genetic.

It is thought to be caused by abnormality of or damage to a part of the brain that controls memory and facial perception.

In extreme cases, those with the condition are unable to recognise their own faces or tell the difference between a face and an object.

Treatment focuses on teaching coping strategies and the use of a variety of prompts and cues to recognise people by other means. But research is under way and it is hoped an effective prevention or cure may be found.

NHS is failing patients with neurological conditions, claims report

01 Wednesday Aug 2012

Posted by a1000shadesofhurt in Brain Injury, Neuroscience/Neuropsychology/Neurology

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brain damage, dementia, dystonia, emergency hospital admission, epilepsy, mental health issues, motor neurone disease, multiple sclerosis, neglect, neurological condition, Parkinson's disease

NHS is failing patients with neurological conditions, claims report

People with neurological conditions such as epilepsy, multiple sclerosis and Parkinson’s disease suffer “neglect” by the NHS, claims a report by an alliance of charities representing patients.

Poor care means that too many of the 8 million patients in England with a neurological problem are admitted to hospital as emergencies, experience delays in having their condition diagnosed, and receive too little information about what is wrong with them, according to the Neurological Alliance.

The alliance is a group of more than 70 charities that work with people who have suffered damage to their brain, spinal column or nerves either as a result of illness or injury. Its members also include charities representing those with motor neurone disease and rarer conditions such as dystonia.

An alliance report accuses the NHS of not taking patients with neurological conditions seriously enough, and warns that the coalition’s health reforms will do nothing to help them. “Policy levers for improving care in the new NHS landscape are not being mobilised to support improvements to neurological services.

“Five of the six key policy levers, including national outcome strategies and the commissioning outcome framework, are not currently being used to improve services for people with neurological conditions,” it claims.

This is despite neurological services taking up more than 5% of overall NHS spending, which makes them the service’s eighth largest category of spending, and the fact that one in six people are affected, it adds.

The report urged the plethora of new NHS bodies being created next April by the Health and Social Care Act to tackle “the legacy of neglect which has resulted in unacceptable variations in outcomes and higher than necessary costs”.

Inadequate and poorly co-ordinated care of such patients by GPs and other community health and social care services result in undue numbers of emergency hospital admissions, it says.

Research by the alliance uncovered what it called “a spending lottery” on neurological services by NHS primary care trusts (PCTs). While Central Lancashire PCT spends £11.37m per 100,000 of population on them, Haringey Teaching PCT in London spends just £4.31m for the same number of people.

Similarly, there is a sevenfold variation in the proportion of PCT spending on these conditions that goes on emergency care. In places such as Liverpool, Sunderland and Wandsworth in London, it is more than half. “Not only are emergency admissions distressing for patients and extremely costly for the NHS, but they are often an indication that conditions are not being well managed within primary care, community and social care services,” the alliance claims.

Arlene Wilkie, the organisation’s chief executive, said action was urgent because half a million people a year are diagnosed with a neurological condition and the number of patients with one is set to skyrocket in the next decade.

“If the NHS reforms do not address poor standards of care for people with neurological conditions, then they will fail. The government has said that managaing health reforms should be all about outcomes, but it has failed to identify the outcomes which matter to people with neurological conditions,” she said.

The charities want the Department of Health and new NHS Commissioning Board to devise indicators for quality of care and patients’ outcomes that will prompt the service to overhaul such services.

The Department of Health said that the commissioning board is already planning to drive improvements to services for those with mental health problems, dementia and neurological conditions by ensuring that some of the first strategic clinical networks set up next year cover them.

“We want NHS services to focus on what matters to people most. This will make sure that people with neurological conditions get integrated care and the support they need at the right time and in the right place,” said a spokeswoman.

“We are working closely with patient groups and health professionals to develop a new Long-Term Conditions Strategy. The NHS commissioning board is already planning to drive improvements to improve mental health services, dementia and neurological conditions,” she added.

More:

NHS warned of ‘neurology timebomb’

Doctors Stunned By Musical Memory

03 Saturday Dec 2011

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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Alzheimer's, amnesia, dementia, Memory

http://www.huffingtonpost.com/2011/11/15/cellist-memory-wiped-out_n_1095448.html

When an infection attacked the brain of a 68-year-old concert cellist and wiped out his entire memory back in 2005, doctors were shocked to discover his musical memory remained intact.

First reported by The Guardian, the German musician known as PM could only recognize his brother and care worker, but had no recollection of people or events from his past.

Discover Magazine explains the cellist’s severe amnesia meant he couldn’t recall old and new memories thanks to the destruction of his medial temple nodes — a part of the brain responsible for storing facts and events.

But when it came to playing previous concertos, and learning new pieces of music, he had such no problem leaving doctors stunned.

Discussed at the Society for Neuroscience conference for the first time this past weekend, scientists say this case study suggests memory is more complex and autonomous than previously thought and that music could be the key to helping people with memory problems learn new skills in life.

“Musical memory seems to be stored independently, at least partially, of other types of memory,” Carsten Finke, a neurologist at Charite university hospital in Berlin told the Guardian. “If you contrast these two cases, you could argue the superior temporal gyrus, which is intact on the righthand side in our patient, could be the relevant structure that he uses to remember music.”

The link between memory and music is nothing new, of course. The LA Times points out that tunes are the last memory to go with Alzheimer’s patients. According to the American Health Assistance Foundation, people can prevent Alzheimer’s and dementia by playing a musical instrument in order to keep the brain active.

Another study out of Boston University showed music had healing affects on Alzheimer’s patients and allowed them to learn new things through lyrics rather than spoken word.

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