Sent: Wednesday, December 11, 2013 1:37 PM
To: Thomas Chambers
Subject: IL Newsletter, 11th December
| Hello Thomas Welcome to this week's Independent Living newsletter. If you prefer, you can read it online here Contents: 1. Dementia resources 2. Political action on welfare 3. Nutrition blogspot – Bread! 4. Tactile Tour of Westminster 5. Music for all – Skoog 6. Latest snippets """"""""""""""""""""""""""""""""""""""""""""""""""""""""""" 1. Dementia resources As G8 leaders meet in London to talk about dementia – which they have suddenly recognised to be one of the most urgent health and care crises facing the developed world – it seems a good moment to round up some of the latest thinking and resources on the subject. Dementia has for a long time been a "Cinderella" when it comes to funding: historically, only one pound has been spent on dementia research, for every twelve pounds invested in cancer. This situation is beginning to improve, as the scale of the problem becomes ever more obvious - but almost nothing is spent on prevention. Since 2006, £140 million has been spent on dementia research in the UK, with only £156,000 of that allocated to prevention. No drug treatment has emerged, despite $40 billion invested around the world in looking for a cure, whilst various interesting possibilities for minimising the risk of developing the disease are known about - and could certainly benefit from receiving a bit more funding. You can read more here. Our own Mary Farmer wrote a useful article about managing diet in dementia, which is here. Diet is one of the strong contenders for most effective means of preventing the disease. And this is probably a good time to look at "The Essential Guide to Avoiding Dementia" Mary Jordan's book published earlier this year, which brings together research and empirical evidence to highlight the factors which appear to contribute to developing dementia; and the diet and lifestyle changes which could reduce the risks. Read more here. And last word on the subject (for now) should really go to somebody with the condition. Norman McNamara is in his 50s, and has had a diagnosis of dementia for six years. He is an active blogger and campaigner for raising awareness of what life is like with the disease. He went to a Prime Minister's Dementia Working Group meeting this week, and after listening to various people highlighting the importance of involving those with dementia in the process, dared to challenge them as to why not one of them had thought to ask him his opinion about the future for dementia care. He is not confident that they will be inviting him back! You can read this article, and others, on the Torbay Dementia Action Alliance blog """""""""""""""""""""""""""""""""""""""""""""""""""""" 2. Political action on welfare I briefly mentioned in last week's newsletter that the WOW Petition had exceeded the 100,000 signature target, which should mean some Parliamentary time for a debate. There was some doubt that it would get debated, owing to a widespread lack of enthusiasm amongst MPs, but I am happy to be able to report that John McDonnell was successful in making representations to the Backbench Business Committee yesterday, and the impact of welfare reform on people with disabilities and carers will be debated in the New Year. No further details as yet, but I will share them as soon as I know more. Meanwhile, in another corner of the welfare jungle, a report by the Centre for Welfare Reform (CWR), using leaked Atos data, sheds some light on the mysterious ways of the Work Capability Assessment (WCA), and why so many people who are clearly unable to work are nevertheless passed as fit to do so. Both Atos, who carry out the assessments, and the DWP have consistently denied that there are any targets in operation, but the figures passed to the CWR show just how tightly Atos assessors are managed, using "statistical norms", from which they are not supposed to diverge by more than 20 percent. For example, it is expected that an assessor will see 40 people a week, about two thirds of whom should be judged fit for work. The remainder are split between the ESA support group, which means they are completely unfit to work, and the work-related activities group, designed to help people get back into work. Within both these groups, they are then further split up into groups, depending on how quickly they are expected to recover; either within six to 24 months, or "longer term", which actually translates to three years in practice. The statistical norms suggest that only 2.6 percent of assessments should result in a prognosis of longer term inability to work - which means that only one applicant a week should be given this outcome by an assessor, and should they make the same judgement on just one extra person in a month, they are up against their permitted 20 percent variation... Perhaps this goes some way to explain some of the otherwise frankly inexplicable decisions, and reinforces the need for an urgent rethink. """"""""""""""""""""""""""""""""""""""""""""""""""""""""""" 3. Nutrition blogspot – Bread! Known as the staff of life, bread is certainly one of our dietary staples, and has been made for millennia; ever since people swapped the nomadic "hunter gatherer" lifestyle for settled habitations and farming. Home baking is enjoying one of its periodic peaks of popularity, with many people making their own, whether by hand or machine. In her latest article, Mary Farmer shares her passion for breadmaking, and some fascinating facts about this basic, yet beguiling food - including what nutrients you can expect to find in it, and the story of the wartime "national loaf", which I had never heard before. You can read the latest Nutrition Blogspot here """"""""""""""""""""""""""""""""""""""""""""""""""""""""""" 4. Tactile Tour of Westminster Brian Seaman is one of that growing band of interesting and useful people I've come across thanks to Twitter (@BrianMSeaman). His mission is making travel and tourism accessible for everyone, and he's definitely a helpful chap to know if you are wondering how to make your premises or services more user-friendly. The latest article he has written is about tactile tours of the Houses of Parliament. I still remember visiting Westminster with the Brownies (so quite a few years ago!) and it made a real impression, knowing that this was the place where the people who had been chosen to represent us made decisions about important matters. I'm not quite so starry-eyed about politicians these days, as you may have noticed, but it does still seem important to be able to visit the centre of the democratic process, and get a feel for how it works. So blind and partially sighted people might be interested to know that there are free tours running about a dozen times a year, which last a couple of hours, and follow a route covering Westminster Hall, Central Lobby and the chambers of both the House of Commons and House of Lords. That should be enough to awaken anyone's dormant enthusiasm for politics. You can read more here. """"""""""""""""""""""""""""""""""""""""""""""""""""""""""" 5. Music for all – Skoog Regular readers will know that music is one of my favourite subjects, and not just because I love listening to it, but also because it is so valuable as a therapeutic aid for adults and children alike. Being able to make music, and especially with other people, can give a great boost to confidence and self-esteem – so I was really pleased when I came across the electronic Skoog, an instrument that can be played by anybody. You can use any part of your body, and tap, shake, squeeze, rub or twist the Skoog, to produce sounds. Its clever software enables it to work either as a standalone instrument, or linked with widely used programs such as GarageBand and Logic: it plugs into a computer with a USB connector. Latest news about the Skoog is that if you can buy it from the Apple Store, bringing accessible musical technology right into the mainstream. You can read more here """"""""""""""""""""""""""""""""""""""""""""""""""""""""""" 6. Latest snippets Drive Medical has a luxurious new rise and recliner, upholstered in the leather and matching PVC. It is available with either a single or dual motor mechanism, and has a clean, contemporary look - you can see more here. Another poignant observation on attitudes to moving and handling amongst professional carers. I won't editorialise - just read Diane's account of her mother's experience, as posted in our forum. Don't forget you can access all the news as soon as it is uploaded in our News Centre. Our Visitors Forum is the place to start a debate about any topic that interests you. Previous newsletters are archived here. Our Facebook page is regularly updated with the latest developments on the site, and is also somewhere that you can share your opinions with us. Or if you want to make it pithy, send us a tweet! @IndLiving Until next time, all good wishes, Frances -- Frances Leckie Editor E: editor@independentliving.co.uk t: +44 (0) 208 133 0628 Skype: francesleckie w: http://www.independentliving.co.uk This newsletter was sent to thomaschambers@eircom.net. If you prefer not to receive future copies, just reply asking to be removed from the list, and it will be done! |
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