"Polio and Post-Polio News" via Chris in Google Reader

‘It’s like being switched off’ | MS patient discusses chronic fatigue | BBC News website, 30 May 2012

2012-05-30T21:23:38Z

From BBC News online, 30 May 2012 (Story by Alison Potts).

Chronic fatigue dominates the lives of people with multiple sclerosis – and other long-term conditions. Here Alison Potts, who has had MS for 20 years, tells how it affects her life.

Earlier this month MS in Focus magazine published the results of a global survey on MS fatigue.

“My family and friends just think I’m tired and lazy,” one person said – and another: “Fatigue prevents me from being the wife and mother I want to be.”

Chronic fatigue is the most common symptom of MS, the hardest to treat and the most misunderstood.

In the MS Focus poll, 89% of the 100,000 people from 101 countries who were surveyed said fatigue had a high impact on their life.

But more than half felt those around them do not accept its effects.

Unless you have endured it yourself, there isn’t anyone who can imagine what this experience is like, yet for we who live our lives with this illness, other peoples’ understanding is crucial and other peoples’ misunderstandings add further damage to an already devastating condition.

‘Bewildering’

I have lived with MS fatigue for more than 20 years.

I sometimes feel like I have spent half my adult life in a cave.

I woke up one morning with the equivalent of a blanket on my head which I stumbled around with for years and which was finally explained with my diagnosis of MS.

Even I didn’t understand why I found the simplest activities so hard. Even I questioned my own sanity. So it’s hardly surprising that it’s so bewildering for those looking on.

Fatigue is a debilitating state of physical and mental exhaustion that comes crashing down suddenly and without warning attacking – among other things – eyesight, balance, muscular strength, and threatening everything in one’s immediate focus.

“I am lifeless. At times it is like someone has switched me off,” says someone in the survey.

In an acute episode I have to cancel many or most activities. I have to do as little as possible – which goes against my nature and I hate it – but I don’t have any choice.

Conversely when an episode is over, I am in danger of bouncing around like tigger, playing catch-up and trying to get anything and every done while I feel well enough.

Fatigue doesn’t announce itself in advance. It can happen at any time, anywhere.

It can bring anxiety – “What will happen if I don’t get this done?”, and panic, even terror – “Will I get home in time before the complete collapse? Am I safe to drive? What if I am not?”

It brings with it this terrifying conundrum. Can you drop everything at once, not knowing for how long?

What will happen to your life if you drop everything at once? What will happen to your life if you don’t?

We often feel under pressure to do things we know will be bad for us.

Saying ‘no’

My friend and fellow chronic fatigue sufferer Sarah reports one experience where she felt under pressure to comply with others’ plans when she felt unable to.

“For my birthday in 2005 friends insisted meeting me for a BBQ. I resisted as I knew I had been overdoing it. They would not take no for an answer.”

It had such an effect on her that she says: “It took me three months to recover from that event. It was like falling sick all over again.”

And she adds: “It’s unhelpful of friends or family to beg me to come or to modify the nature of my attendance, or worse still, be hurt. Don’t they realise it breaks my heart to cancel?

“It’s not like I wanted to spend my entire 30s missing out on shared, fun times. Don’t make it any harder than it is. This is simply what I have to do.”

These days everyone is too busy, overloaded, driven by tyrannical deadlines.

“I know there are probably people who look at me and think, how is my life any different from theirs?

“But In my case I have to do all this while accommodating an illness which presses the stop button indiscriminately.

Those of us with chronic fatigue have to say “no” a lot.

As the survey states: “People with fatigue need time to rest, but most of all they need understanding from others.”

Minutes of the March meetings of the Countess of Mar’s ‘Forward ME’ Group now available

2012-05-25T06:39:59Z

The Minutes of the last two meetings of the ‘Forward ME’ Group, which were both held in March, are now available on the group’s website.

‘Forward ME’ – founded and chaired by the Countess of Mar – consists of senior representatives of the UK’s leading ME charities and patient groups. It meets at the House of Lords.

Main speaker at the meeting of 6 March 2012 was Dr Derek Enlander from the Mount Sinai Medical School in New York where he has developed separate clinical protocols for the treatment of CFS and M.E., and also runs an active research programme.

The Minutes of this meeting include an offer from Dr Enlander for Mount Sinai to run fellowship training for 12 months for two, British post-doctoral physicians – with Dr Eric Schadt supervising the research programme and Dr Enlander supervising the clinical part of the fellowship.

Professor Malcolm Harrington discussed his independent review of the Work Capability Assessment at the meeting held on 13 March 2012. He is now in his third and final year as the Government’s independent reviewer; someone else will be appointed to lead the final two years. Forward ME has been heavily involved with this work – with Dr Charles Shepherd representing the group on the working party looking at its impact on those with fluctuating conditions.

Both sets of Minutes can be viewed at the Forward ME website: http://www.forward-me.org.uk/

Doctors 'risking email privacy breaches'

2012-06-02T00:17:06Z

Doctors' email errors that see patient data disclosed

Media Is Fuelling Hate Against Disabled Benefit Claimants

2012-06-03T11:52:43Z

The Social Welfare Union recently released an Open Letter signed by hundreds of groups, organisations and individuals to the press and wider media concerned about how Disabled People and Disability Benefit Claimants were being portrayed to the public.

Here is one instance of that letter being published by the media in the Morning Star Online.

We the undersigned are deeply angered and concerned with the way sick and disabled people are being portrayed by the press and wider media as well as the distinct lack of fair and accurate reporting in relation to disability benefits.

The use of defamatory language is being used in a totally irresponsible and callous manner by a steadily increasing number of newspapers and other media providers.

We believe that the press and the wider media are blatantly using this language as a means of labelling all disabled benefit claimants as “cheats” and “scroungers,” yet most are genuine sick and disabled people who are in many instances unable to work and are asking for only the very basic levels of support.

Such support is in no way over generous as some newspapers are claiming with administrative error and miscalculations at 0.5 per cent.

In fact disability benefits such as disability living allowance have some of the lowest levels of fraud of all forms of social security benefits and it is estimated that billions remain unclaimed in benefits every year – a significant fact that news providers and even the coalition government are neglecting to inform the public of.

We also believe that while many claimants are being found fit for work through the use of new assessment processes, most often the press and wider media are shirking in their responsibility to report from both sides and about the large number of sick and disabled people who are being wrongfully found fit for work and who are later having those decisions overturned in their favour by a social security tribunal.

They also fail to report on people found “fit for work” by Atos Healthcare, the private health firm contracted to carry out work capability assessments on behalf of the Department for Work and Pensions.

Those people then find that they cannot claim jobseeker’s Allowance (JSA) because they are “unfit for work” as deemed by the JSA qualifying criteria.

These people often have to rely upon handouts and food parcels and become lost statistics unseen by the public.

We are greatly concerned that the way the press and wider media are portraying sick and disabled people will continue to fuel a growing hatred and discrimination, adding to increasing reports of hate crime towards disabled people and the potential for suicides already being reported by some news providers.

While we support the democratic idea of a free and open press we feel that they have a moral and social duty.

We ask that they refrain from the use of language and defamatory terms which is fuelling the growing and unjust public hate and disdain of sick and disabled people and benefit claimants.

We also ask that they report all stories related to disability and disability benefits in a manner that best informs their readers and viewers which is balanced, accurate and fair.

Signed

Steven Preece, founding member, Social Welfare Union; Gail Ward, co-founder, Social Welfare Union; Debbie Jolly, co-founder, Disabled People Against Cuts (DPAC); Linda Burnip, co-founder, Disabled People Against Cuts (DPAC); Merry Cross, Disabled People Against Cuts (DPAC); David Chowcat, Disabled People Against Cuts (DPAC); John McArdle, Black Triangle Campaign Anti-Defamation Campaign in Defence of Disability Rights; Luke Sheldon, Boycott Workfare; Izzy Koksal, Boycott Workfare; Bill Scott, Manager, Inclusion Scotland; Rosemary O’Neill, CarerWatch; Adam Lotun, Workplace Disability Adjustments; Liz Potter, Derbyshire Anti-Cuts Campaign; Ian J Lumsden, Guildford Liberal Democrats; Linsay Bibby, Warrington Borough Council; Norma Curran, Scottish Campaign for a Fair Society; Peter Kelly, director, The Poverty Alliance (Scotland); Iolanda Carneiro, Portsmouth Disability Forum, Disability Rights UK; Annie Bishop, Northumberland Disability and Deaf Network; Peter Rogers, Hear Us: Croydon’s Mental Health User Group; Robert Battison, Founder, Democratic Reform Party; Ian Pugh, acting/deputy leader, Democratic Reform Party; Jean Eveleigh, treasurer & membership manager, Democratic Reform Party; Dion Gibbs, People Social Freedom Movement (Party); Jean Cozens, Mental Health Resistance Network; John Hargrave, Leicester Disabled Peoples Access Group; Richard Lumb, Disabled People Against Cuts (DPAC) (Cornwall); Caroline Richardson, Ouchtoo.org; Alex Balcombe, Reach; Lorraine Booth, Reach; Sue Kennaway, Vale Royal Disability Services; Louise Wallis, Respond Learning Disability Charity; Ben Golightly, Swansea Youth Fight for Jobs; Charlotte Fielder MBE, author, Shared Experiences, Windsor; Melanie-Elise Killian, Ehlers-Danlos National Foundation; Teresa Catto-Smith, Act Now For Autism; Pat Onions, Pat’s Petition, Braehead; Samuel Miller, disability rights blogger; Edward Mcgurk, Unite, Huddersfield; Sean McGovern, TUC disabled workers’ committee chairman; Andy Stankard, Unison, Hull City branch; Sue Anderson, Unison, Wiltshire; Terry Craven, Unite 567(NW) community branch, Liverpool; Pat Craven, Unite 567(NW) community branch, Liverpool; Jayne Sinden, National Union of Teachers (NUT), Dudley; Paul Stygal, Communication Workers Union (CWU), Southend-on-Sea; Roy Benjamin, Merton Centre for Independent Living, London; Alex Raimi-Scott, UK Uncut Liverpool; Rosemary Coates, Disability Hate Crime Network moderator; Sarah Ismail, samedifference; The Atos Stories Collective, London; Steve McCue, Dyslexia Pathways; Sue Jones, Autoimmune Illness Support Forum; Nessie King, The Isadore Foundation CIC; Susan Archibald, Archibald Foundation; Helen M Brown, Post Polio Cafe, Kilmarnock; Anna Preece, Cardiff Bipolar UK Support Group; Penny Ledger, co-chair of trustees, Disability Network Hounslow; Lulu Hoosen Coovadia, Disability Network Hounslow; Toby Morrison, disabled students’ councillor, Coventry University Students; Union; Louis P Burns, Upstate renegade Productions; John McDonnell MP; Gordon McFadden, policy director, LimbCare; Karen Warner, Learning Disability Wales; John Dalrymple, Neighbourhood Networks; Ian Sandeman, DLA Help Group, Basingstoke; Steve Richardson, Richardson Training Consultancy LTD; Sue Rogers, ME Welfare Benefits and Support Group; Daryl Jones, disabled student officer, NUS NEC & Hull University; Hannah Paterson, National Union of Students, Manchester; Sarah Brittlebank, Mental Health Service, user development worker; Richard Holmes, Go4M; Mike Llywelyn Cox, Norfolk Coalition of Disabled People; Lynn Harrison, Mental Health and The Wider Disability Movement; Robin Macfarlane, British Senior Citizens Party; Stewart Harding, Diverse Cymru; Stephen Cruickshank, Renfrewshire Access Panel; Caroline Sutton, Disability Rocks; Andrew Dobson, MED Awareness Group; Mark Rowe, Fire Brigades Union (FBU), Merseyside; Andy Matthews, bipolar4all.co.uk; Jennie Kermode, Trans Media Watch; Kate Davies, KD Therapy, Derby; Mark Brown, 1 in Four Magazine; Simon McDougall, Liberal Democrat councillor, Bognor Regis; Katharine Quarmby, author, Scapegoat: why we are failing disabled people; Alasdair Sladen, Creative Support; Kerry BakerThomas, Tydfil Autism Support Group; Helen Watts, FM Support, SE Essex; Gemma Lintin, Birmingham Citizens Advice Bureau; Emma Cook, Birmingham Citizens Advice Bureau; Linda Blount, Birmingham Citizens Advice Bureau; Ian Warner, Kittiwake Classics, Enfield; Gary Stacey, Wessex Solidarity; Maria Stewart, Norfolk Association of Disabled LGBT People; Leo Arthur Capella, Disability/Neurodiversity Rights Campaigner, Essex; Cheryl Risden, St Austell Fibro Friends, Cornwall; A Gillmore, London; A Kitney, St Margaret’s Hope; Aaron Crowley, Uxbridge; Aaron Sawyer, London; Adrian Hindle, Chesterfield; Adrian Moore, Kingsbridge; Adrian Wilks, Sandbach, Cheshire; Adrianne Sebastion-Scott, London; Aiden Roberts, Liverpool; Alan B Clark, Skelmorlie; Alan Fergus, Edinburgh; Alan Mills, Basingstoke; Alan Stanley Pavey, Kilve; Alan Vincent, Doncaster; Alasdair Murray, London; Alec Middleton, Birmingham; Alex Panayotopoulos, Edinburgh; Alexander Scott, Edinburgh; Ali Newton, Leicester; Alice Devaney, Tewkesbury; Alice Grice, Hucknall; Alice Mcnair, Leicester; Alison Anne Godden, Hull; Alison Batts, Worsop; Alistair Craig, Glasgow; Allan R Williamson, Manchester; Alun Jones, London; Amanda Brocklesby, Grimsby; Amanda Burrows, Carlton; Amanda Crompton, Exeter; Amanda Farley, Basildon; Amanda Matthews, Dyffryn Ardudwy; Amy Wood, Edinburgh; Ana Mattacks, Newcastle-upon-Tyne; Ana Moore, Belfast; Anastasia Z, Glasgow; Andrea Mccown,; Andrew Cooper, Nottingham; Andrew Manning, Basildon; Andrew Mcdonald, Cardiff; Andrew Paul Healey, Bolton; Andrew Paul Matthews snr, Walsall; Andrew Scott, Sunderland; Andrew Sharp, Walthamstow; Andy Bean, London; Andy Cropper, Sheffield; Andy Webber, Taunton; Angela Atha, Cleveland; Angela Drane, Redditch; Angela Kennedy, Buckhurst Hill; Ani Murr, Shropshire; Ann Boyne, Liverpool; Ann whitehurst, Stoke-on-Trent; Ann Woods, Andover; Ann Woods, Liverpool; Anna McNally, Louth; Anna Robertson, Fettercairn; Anna Weeks, Bournemouth; Anna Wood, Glasgow; Anna-Rose Phipps, London; Anne Bowditch, Bristol; Anne Brian, Newbury; Anne Brunelle, Durham; Anne Cryer-Whitehead, Milton Keynes; Anne Dickens, Thornton-Cleveleys; Anne Friston, Edinburgh; Anne Novis MBE, London; Anne O’Donnell, Edinburgh; Anne Oneill, Portrush; Anne Ward, Wirral; Anne White, Leicestershire; Anne Wilson, Portsmouth; Annette Ruth Gavin, Altrincham; Ann-Marie Adams, Haddenham; Ann-Marie Lee, Leigh; Anthony Adshead, Manchester; Anthony Barry, Amlwch, Ynys Mon; Anto Murray, Belfast; Antony Fern, Newcastle-under-Lyme; Anya-Nicola Darr, Budleigh Salterton; Arran Taylor, Woking; Arthur Jordan, Dundee; Arty Pye, Middleshire; Arvind Ahir, Telford; Athran De’Janta, Lowestoft; B Rawsthorn, St Helens; Barbara Green, Sheffield; Barbara Hulme, Manchester; Barbara Smith, Wales; Barry O’Toole, Liverpool; Becky Clabburn, Norwich; Ben Farrer, Halifax; Ben Tresman, Southampton; Benjamin James Baxter Corbet, Manchester; Beryl Becket, Swinton; Beverley Phillips, Birmingham; Bill Cocks, Swindon; Bill Hill, Edinburgh; Bill Nuttall, Telford; Bob Collins, Birmingham; Bob MacDonald, Cardiff; Bonita Quittenton, North Norfolk; Brenda Gill, Southampton; Brian F Kirkham, Salford; Brian Knowles, New Forest; Bruce Bingham, Manchester; Bruce Wylie, Penrith; C Adams, Bristol; C Hyatt, Brighton; C Tullock, Kirkwall; Callum Bryant, Nottingham; Calvin Smith, Swansea; Carl Chambers, Chesterfield; Carol Laula, Glasgow; Carol Williams, Taunton; Carole Ann Holmes, Bexhill on Sea; Carole Mathurin, Merton, London; Carole Ridley, County Durham; Caroline Jones, Norwich; Caroline Seely, Wymondham; Catherine Bligh, Cambridge; Catherine Geladart, Gerrards Cross; Cathy MacLennan, Kinlochleven; Cathy Patchett, Chesterfield; Catrin Sherwin, Pickering; Celia Bouquet, Exeter; Celine Lecompte, Cardiff; Ceri Leigh, London; Charles Britton, Colchester; Charles Regan, Birmingham; Cheryl Moncrieffe, Bexley; Chloe Cook, Bournemouth; Chris Bainbridge, Bury; Chris Pearson, Dihewyd; Chrissie Bligh, Cambridge; Chrissie Fryde, Cambridge; Christabel Edwards, Belvedere; Christina Sosseh, Milton Keynes; Christine Hathaway-Coley, Aberdeenshire; Christine Hubbard, Sheffield; Christine McCabe, Cambridge; Christine Mckenna, North Lanarkshire; Christopher Hoggins, St Leonards on Sea; Christopher Ingram, Merseyside; Christopher Lennon, Tyne and Wear; Christopher Wintle, Sheffield; CJ Gordon, Surrey; Claire Benjamin, London; Claire Edwards, Dawlish Warren; Claire Edwards, Great Yarmouth; Claire Gibbons, Shipley; Claire Smith, Norwich; Clint Stanley, Ely; Colin Day, Brentwood; Craig Dickens, Cannock; Craig Morris, Cardiff; Cris H, Isle of Wight; Cristiano Di Carlo, Southampton; Cynthia Phillips, Swansea; D Rosier, Walworth; Damian Robinson, Warrington; Daniel Henry, Burton-upon-Trent; Danielle Heybroek, Manchester; Danka Gordon, London; Darren Bartlett, Sheldon; Darren Jones, Glasgow; Darren Lynch, Preston; Dave Ainslie, Lowestoft; Dave Bessant, Leeds; Dave Davis, Ellesmere Port; Dave Lee, Leominster; Dave Matthews, Nottingham; Dave McKinnon, Tyne and Wear; Dave Rendle, Cardigan; David Alan Shaw, Swindon; David Birdsall, Teeside; David Burgess, Arley; David Gilmour, Edinburgh; David Golledge, Arbroath; David Hare, St Andrews; David Indge, Norwich; David Jones, Morriston; David Mccrae, Kilmarnock; David Mullen, London; David Robertson, Glasgow; David Stell, Northumberland; David-John Pitts, Edinburgh; Dawn Chudleigh, Swansea; Dawn Mckenna, Luton; Dawn Walker-Gerrard, Doncaster; Dawn Willis, Devon; Dayna McCleery, Clinton; Dean Harrison, Lancaster; Dean Simons, Norwich, Norfolk; Dean Wales, Bury St Edmunds; Debbie A L Banks, London; Debbie Marshall, Hull; Debbie Sayers, Cornwall; Deborah Casson, Sheffield; Deborah Davidson, Thornton-Cleveleys; Deborah Doble, Bristol; Deborah Mahmoudieh, Sheffield; Deborah O”Neill, Ashford; Deborah Ritchie, Birmingham; Deborah Webber, Port Talbot; Debra Wesley, Chesterfield; Dee Levy, Swindon; Dee Welch, Brighton & Hove; Dennis Sprigg, Worksop; Derek Robinson, Swindon; Desmond Wrafter, Doncaster; Diana Dupree, Bury St Edmunds; Diane Benjamin, London; Diane Edmonds, Grimsby; Diane Williams, Llanelli; DJ Walker, Hull; Dolly Sen, London; Don Harrison, Cambridge; Donna Aston, County Durham; Donna Norris, Edinburgh; Douglas Morton, Glasgow; Dr A J Winser, Nottingham; Dr John Foster, Hertford; Dr Lynn Hancock, Liverpool; DreamDraigon Designs, Fraserburgh; Drew Walker, London; Dugald Ferguson, Norwich; Duncan Brown, Glasgow; Ebony Dawn Marsh, Edinburgh; Eddie Harrison, Perth; Eileen Russell, Liverpool; Elaine Birch, Sutton Coldfield; Elaine Edwards, Haverfordwest; Elaine Tilby, London; Eleanor Leigh, Stockport; Eleanor Woyen, Hull; Elinor Stewart, Edinburgh; Elizabeth Clay, Sheffield; Elizabeth Dobson, Todmorden; Elizabeth Hansbury, Sleaford; Elizabeth Lamb, St Helens; Elizabeth Worsley, Hope Valley; Elizabeth Wright, Leeds; Ella Woolley, Gillingham; Elliot Porter, Glasgow; Elly Metcalfe, Chesham; Elouise Summers, London; Elysabeth Mccaig-Scott, Bath; Emma Hill, Bromley; Emma Wilson, South Shields; Emma-Lisa Hill, Fallin, Stirling; Eric Day, Leicester; Erik Zoha, Dundee; Eve Morris, Edinburgh; Ewan Innes, Glasgow; Ewen McAleer, Glasgow; Fallyn Spinks, Kirkcaldy; Fiona Bruce, Herts; Fiona Hill, Sutton Coldfield; Fiona Shaw, Norwich; Fiona-Jane Kelly, Southall; Francis Xavier Gallagher, Stuartfield; Frank Kirk, Chichester; G Pennington, Cumbria; Gail Sharman, Norwich; Garry Ellison, London; Garry Thomas, Worthing; Gayle Edwards, Birmingham; Gayle Mann, Glasgow; Gemma Roulston, Redhill; George Morgan, Keynsham; George Petrie, Fife; George Topping, London; Gerald Smith, Guildford; Geraldine Mitchell, Manchester; Geraldine Preston, Stoke-on-Trent; Gill Food, Swindon; Gill Moore, Newcastle upon Tyne; Gill Neeve, Alton, Hampshire; Gill Thompson, York; Gisele Nicolotti Marcoz, London; Giuliano Vivaldi, Brighton; Glenda Hudson, Birmingham; Glyn Williams, Bala, Gwynedd; Gordon Anderson, East Whitburn; Gordon Jenkins, Durham; GR Kelly, Denton, Manchester; Graeme Slater, Middlesbrough; Graham Askew, Cambridge; Gregg Beratan, London; Hana Rooke, London; Hannah Kingsland, Orpington; Hannah Rees, Morpeth; Hanne Lee, Kingston-upon-Thames; Hazel Midgley, Deeping St James; Heather Ann Taylor-Nicholson, Penzance; Helen Bryant, Reading; Helen North, Eastleigh; Helen Searle, Edinburgh; Helen Simms, Bristol ; Helen Speight, North Shields; Helen Trick, Lewisham; Hollie-Lianne Williams, Manchester; Holly Wilson, Leominster; Iain Macfiain, Edinburgh; Ian Cropton, Stevenage; Ian Foster, Brentford; Ian Lockley, Brierley Hill; Ian Marder, Leeds; Ian McKnight, Belfast; Ian Riach, Teesside; Irene Burton, Aberdare; Isabel Addie, Glasgow; Ivor Williams, Swindon; J. Hamill, Chorley, Lancashire; Jackie Portman, Stourbridge; Jacob Adams, London; Jacqueline Holland, Dunkeld; Jacqueline Thomas, Tredegar; Jacqueline Welsh, Edinburgh; Jade Kerr, Dumfries; Jaki Rundle, Haverfordwest; James Mathurin, London; James Mullett, Lincoln; James Wolfe, Norwich; Jamie Ayers, Penrith; Jan McGuigan, Partick; Jan O”Malley, Arisaig; Jan Wright, Dyffryn Ardudwy; Jane Bromfield, Berkshire; Jane Carnall, Edinburgh; Jane Clifford, Narberth; Jane Crowe, Devizes; Jane Nelson, Birmingham; Jane Redican, Denbighshire; Jane Reynolds, Abertridwr; Jane Wuster, Hove; Jane-Dora Fraser, Leeds; Janette Scharenborg, Llanelli; Janis Dick, Glasgow; Janis Green, Blackpool ; Jay Astarte, Halton; Jayne Gowland, Weardale; Jayne Linney, Leicester; Jayne Smithson, Worksop; Jean Mace, Nottinghamshire; Jean Murrell, Westleton; Jean Watson, Bedford; Jeanette Plester, Coventry; Jeannette Cripps, Berkshire; Jeff Myers, Newcastle-upon-Tyne; Jeffrey Davies, Neath; Jemma Nicholls, Nr Lostwithiel; Jen Turrall, Kent; Jennifer Lambert, Badingham; Jennifer Lavis, Arbroath; Jennifer Mein, Newport; Jennifer Taylor, Kings Lynn; Jennifer Woolliscroft, Greater Manchester; Jill Smith, Lincolnshire; Jill Sullivan, London; Jillian Morland-Duff, Liverpool; Jim D Smith, Bromsgrove, Redditch; Jo Aaron, Cardiff; Jo Clancy, Cardiff; Jo Walker, Northumberland; Jo Watkins, Sheffield; Jo Woodrow, Deal; Joan Anthony, Lindon; Joanna Mackwell, Bingley; Joanna Redmond, Nottingham; Joanne Curtis-Monk, Preston; Joanne Dollimore, Sittingbourne; Joanne Hilton, Warwickshire; Joanne Yates, Edinburgh; Joe Cassels, Saxmundham; Joel Shea, London; John Broggio, Birmingham; John C Thomson, Edinburgh; John Collings, London; John Credland, Little Weighton; John House, Hackney; John Moore, Maynooth, Co Kildare, Ireland; John W Slade, London; Johnny Void, London; Jonathan Eyre, Leeds; Jonathan Marsh, Dover; Jonathan Swift, Leicester; Jonathan Ward, Bedale; Josie Jay, Alton, Hampshire; Joy Bean, Bromley; Judith Pettigrew, Bristol; Julie Carwardine, Caerphilly; Julie Frid, Stone, Staffordshire; Julie Harper, London; Julie Phillips, Peterborough; Julie Ricketts, Hackney, London; Julie Routley, Carmarthen; June Heaney, Bangor; Justin Edwards, Stirling; Justine Ainsworth, Manchester; K Blount, Plymouth; K Rubins, London ; K. Mamm, Cleveland; K. Tanswell, Cheltenham; Karen Alexander, Bodorgan; Karen Atkinson. Worthing; Karen Bester, Belfast; Karen Brown, Morpeth; Karen Crossley, Warsop; Karen Daniels, Hull; Karen Golden, Newcastle-upon-Tyne; Karen Gray, Llanilltud Fawr; Karen Lennon, Northampton; Karen Prince, Edinburgh; Karen Simpson, Derby; Karen Willis, Norwich; Kate Rigby, Devon; Katherine Demeter, Bristol; Katherine Fox, Norfolk; Katherine Reid, Gateshead ; Kathleen Burley, Barnsley; Kathy Baguley, Brighton; Kathy Jagger, Glasgow; Kathy Richards, Swansea; Katie Blythe, Faversham; Katie Lightfoot, Northwich; Katy Board, Ceredigion; Kaye Lewis, Cambridge; Kayla Lowes, Shepton Mallet; Keith Jennings, Benfleet; Keith Lindsay-Cameron, Peasedown St John; Keith Oxborough, Portsmouth; Keith Seddon, Watford; Kelly Rose, Lancaster; Kelly Salt, Walsall; Kelvin Kent, Taunton; Ken G Laidlaw, Smethwick; Kenny Fryde, Cambridge; Kev Towner, Hastings; Kevin Green, Kirkcaldy; Kevin Longmore, Sheffield; Kevin Mcdonald, Cardiff; Kevin Smith, Poole; Kevin Watkins, Swindon; Kim Burns, Wolverhampton; Kirsty Birkner, Glasgow; Krystie Lennon, Tyne and Wear; Kyla Manners, Brighton; Kyron Hodgetts, Cradley Heath; L Jones, Herts; L. Boyes, Kennoway, Fife; Lara Cobden, Norfolk; Laraine Frederick, Hove; Laura Evans, Portsmouth; Laura Henretty, Edinburgh; Laura Walker, Sheffield; Laura Whitefield, Ayr; Laurel Duut, Suffolk; Lauren Greyson, Devon; Lauretta Pearson, Oakham; Leandra Carswell, Devon; Lee Kennedy, London; Leigh Boyle, Dundee; Lena Thane-Clarke, Lancaster; Leon Carter, Havant, Hampshire; Leonie Reed, Liverpool; Les Crompton, Portsmouth; Lesley Crosby, Tyne and Wear; Lesley Farmer, Taplow; Lesley Roberts, Newport; Lesley Sharkey, Renfrewshire; Leslie Marsh, Douglas; Liam Smith, York; Liane Gomersall, Lincolnshire; Lillian Hunter, Leven; Linda Bellos, Norwich; Linda D, Sheffield; Linda Jones, Wolverhampton; Linda Murray, Glasgow; Linda Pugh, StAlbans; Linda Steers, Milton Keynes; Linda Winters, Glasgow; Lindsay Lee, Cambridge; Lisa Buckley, Liverpool; Lisa Dillon, Chatham; Lisa Dunn, Oxford; Liz Brown, Lurgan, Craigavon, Northern Ireland; Liz Parker, Marple, Cheshire; Liz Sannachan, Glasgow; Lorna Campbell, South Norwood; Lotte Holmes, Manchester; Louise Fallon O’Hara, NW London; Louise Gibson, Stafford; Louise Nightingale, Liverpool; Louise Rowan, Lancaster; Louise Wallis, London; Lucy Powell, Caerphilly; Lydia Butler, London; Lydia Duddington, Exeter; Lydia Hendry, Glasgow; Lyn Philips, Southampton; Lynda Cakebread, Weston-Super-Mare; Lynda Phillips, Mountain Ash; Lyndsey Mckinnon, Leeds; Lynn Higgs, Liverpool; Lynn Huggins-Cooper, Newcastle upon Tyne; Lynn Rhodes, Hayle, Cornwall; Lynne Valentine, Gateshead; Lynne Wilkinson, Bexhill; M Cairns, St Andrews; M Rawsthorn, St Helens; Madeleine O’Sullivan, Newark; Madison Matthews, Dyffryn Ardudwy; Malcolm Evison, Harrogate; Manda Evans, London; Mandy Edwards, Letchworth Garden City; Mandy Murphy, Manchester; Margaret Loadwick, Rotherham; Margaret Philip, Thelnetham; Margaret Rooney, Bellshill; Maria Doswell, Hampshire; Marian Pearson, Newcastle-Upon-Tyne; Marianne Cash, Bridgend; Marie Brown, Larbert; Marina Grey, Dumbarton; Mark Binns, Stockport; Mark Hyde, Oldham; Mark Romano, Swansea; Mark Smithson, Worksop ; Mark Turner, Tredegar; Martin Arnold, Bristol; Martin Cameron, Clybebank; Martin Denny, Littlehampton; Martin Fisher, Oldham; Martin Hannaway, Ipswich; Martin Hickman, Rawmarsh; Martin Wilsher, Ipswich; Mary Young, North Lanarkshire; Marysia Wojtaszek, central Scotland; Matt Cole, Hereford; Matt Phelan, Oxford; Matthew Read, Bournemouth; Matthew Wheatley, Edinburgh; Maureen Taylor, Lampeter; Maurice Fox, Norfolk; Megan Radclyffe, London; Melanie Pither, Reading; Melissa Lee-Houghton, Blackburn; Merry Cross, Reading; Michael Gould, Hampshire; Michael Harrison, Wrexham; Michael Smart, Chesterfield; Michelle Barnes, Rotherham; Michelle Maher, Brighton; Michelle Nicks, Exeter; Mick Burns, Kingsteignton; Mick Carruthers, Preston; Mike Gargett, Stockton; Mike Jones, London; Mike Nightingale, Cardiff; Mike Pennell, Burton-on-Trent; Miles Curtis Watson, Littleport; Miles Gavin, Bakewell; Moira Barrass, South Shields; Moira Gillespie, Glasgow; Monique Craine, Swansea; Morag Fraser, Edinburgh; Morag Lewis, Cambridge; Ms Lisa Smith, Guildford; Naomi Garratt, Nottingham; Natasha Long, London; Natasha Smith, Sunderland; Neil Anderson, Machynlleth; Neil Dugmore, Newport, Gwent; Neil Gibbons, Shipley; Neil Theakston, Waterlooville; Neil Wilson, Inverness; Neill Clark, Glasgow; Nicholas Csergo, London; Nick Adams, Birmingham; Nicki Myers, Cambridge; Nicola Goodchild, London; Nicola Linney, Leicester; Nicola Zussman, SE England; Nik Morris, Brynmawr; Noreen Akhtar, Birmingham; Norma Anderson, Elgin; Norma Moran, Sydney, Australia; Oliver Greene, Norwich; Owen Meharry, Glasgow; P Dellow, Eastbourne; P Oldham, Hereford; P Rawsthorn, St Helens; Pam Lindgren; Pam Long, Cumbria; Pamela Marshall, Lowestoft; Pamela Whiting, Portsmouth; Pat Bolton, Gateshead; Patricia Mcarthur, Glasgow; Patricia O’Callaghan, Northampton; Patricia Walker, Sheffield; Patricia Walker, Tywardreath; Patricia Wenborne, Stanford-Le-Hope; Patrick James Ward, Dunfermline; Paul Barnard, Gillingham; Paul Dovey, London; Paul Edwards, Dawlish Warren; Paul Gillbanks, Glasgow; Paul Hewitt, Knutsford; Paul Hurwood, Kent; Paul O”Sullivan, Lincoln; Paul Taylforth, Accrington; Paul Treloar, London; Paul Tremble, Broadstairs; Paul Warren, Bridgend; Paula Allen, Lancashire; Paula Hardy, Barry; Penelope Thornton, Storrington; Penny Mead, Harlow; Pete Dixon, Lincoln; Peter Austin, Taunton; Peter Clack, Swindon; Peter Green, Preston; Peter Kitney, St. Margaret’s Hope; Peter Macdonald, Newcastle-upon-Tyne; Peter Robinson, Lewisham; Peter Wilton, Derbyshire; Petra Hoffmann, Glasgow; Petra Muths, Street; Phil McGladdery, St Anne’s; Phil Pocknee, Hull; Phil Stevens, London; Phil Wilson, Hull; Philip Howard, Thurrock; Philip Todd, Stokesly; Pru Davies, Glasgow; R.M.Cairns, Edinburgh; Rachael Kent, England; Rachel Gallagher, Gravesend; Rachel Silvester, Southampton; Ralph Morgan, Abertillery; Ray Goodwin, Welshpool; Raymond Young, Edinburgh; Rebecca Bootb, Aldridge; Rebecca Norton, Bradford; Rebecca Walsh, London; Reid Manson, Norwich; Richard Boorman, Maidstone; Richard Carter-White, Portsmouth; Richard Humphrey, Luton; Richard Scott, Newcastle-upon-Tyne; Richard Stone, Newport; Rob Marsh, Penarth; Rob Smith, Keynsham; Robert Ellard, Tonbridge; Robert Green, Preston; Robert Lee, Herne Bay ; Robert Marshall, South Woodham Ferrers; Robyn Hunt, Edinburgh; Roderick Millard, Trowbridge; Roger D Tew, Sheffield; Roger Dudley, Troon; Roger Lucas, London; Ron England, Liverpool; Ron Graves, Birkenhead; Rona Morris, Port Talbot; Ronald Crumley, Loughborough; Rosalyn Adams, Farnborough; Rosamond Broad, Birmingham; Rose Mairi Tognin, Glasgow; Rosena McKeown, Glasgow; Ross Allan, Glasgow; Ross Cambell, Braintree; Ross Flemington, Edinburgh; Rowena Wells, Edinburgh; Roy Leslie, Plymouth, Devon; Russ Cowpet, Manchester; Ruth Lewis, Greater Manchester; Ryan Hebbs, London; S Broomhall, Pontypridd; S E Blake, Isle of Wight; S Harding, Conwy; S Roberts, Wales; S. Ashley Burns, Falkirk; Sade Foley, Edinburgh; Sally Heasman, Worthing; Sam Sharman-Dunn, Leicester; Sam Wodehouse, Largs; Samantha Walshe, Telford; Samantha Wright, Edinburgh; Sana Gabriel, Northampton; Sandie Lunn, Sandy; Sandra Moore, Irlam, Salford; Sandra Tucker, Preston; Sandra Verrinder, Haywards Heath; Sandy H Scott, County Durham; Sandy Hay, Pembroke, Wales; Sarah Carrick, Burton-on-Trent; Sarah Dawson, Fetcham, Surrey; Sarah Elliott, Bedford; Sarah Hurley, Bristol; Sarah Lynch, Bristol; Sarah McEvoy, Sheffield; Sarah Thompson, Newton Abbot; Sarah Welsh, East Anglia; Sascha Humphrey, Deptford; Satish, Hereford; Scott Pattinson, Cruden Bay; Scott Speirs, Kettering; Sedley Bryden, Harrow; Shabaaz Mohammed, Manchester; Shar Matsell, Grantham; Sharon Cooper, Preston; Sharon Herrington, Beightin; Sharon Hingley, Walsall; Sharon Root, East Malling, Kent; Sheenagh Lee, London; Shirley Ansley, Hassocks, West Sussex; Shirley Lowe, Manchester; Shivani Shah, Leicester; Shona Hepburn, Kennoway, Fife; Simon Draper, Lincoln; Simon Glover, London; Simon Greenslade, Swansea; Simon Hughes, Brampton; Simon Price-Johnson, London; Stella Hawker, Margate; Stella Meacham, Dundee; Stephanie McMorran, Belfast, Northern Ireland; Stephen Cruickshank, Paisley; Stephen Martin-Hanley, Basingstoke; Stephen Oxley, Doncaster; Stephen Vickers, County Durham; Steve Crawshaw, Colchester; Steve Hawkins, Luton; Steven Andrews, Doncaster; Steven Hepburn, Kennoway; Steven Houghton, Blackburn; Steven Mann, Liverpool; Stu Baker, Suffolk; Sue Bowyer, Barry Island; Sue Campen, London; Sue Elliott, Ely, Cambridgeshire; Sue Ellis, Maldon, Essex; Sue McCafferty, Manchester; Sue Pearson, Edinburgh; Sue Rees, Edinburgh; Sue Tame, Devon; Sue Taylor, Cheshire; Susan Ashton, Liverpool; Susan Atuisbest, Lancashire; Susan Blair-Jordan, Colchester; Susan Clelland, Glasgow; Susan Johnstone, Carlisle; Susan Marshall, Leeds ; Susan Waller, Weston-super-mare; Suzie Jones, Preston; Sylvia Evans, Welshpool; Tanya Marlow, Plymouth; Tanya Simpson, Edinburgh; Tanya Smith, Bromley; Tanya Ward, Kent; Tara Allan, Edinburgh; Teddy Mcnabb, Northampton; Terence Crago, St Austell; Terree Selby, London; Theresa Kelly, Plymouth; Thom Bleasdale, Bideford ; Tim Draper, South Wales; Tina Lane, Southampton; Tina Price-Johnson, Forest Hill; Tina Smith, Hemel Hempstead; Tom Robb, Woking; Tom Walker, Liverpool; Tommy Ewing, Liverpool; Tommy Forsyth, Barnsley; Tony Gaskell, Merseyside; Tony Magee, Shepshed; Tony Martin, Leicester; Tony Wyatt, Yeovil; Tracey Bawden, Llanwrda; Tracy Edwards, Tywyn, Gwynedd; Tracy Mills, Thackley; Tracy Richards, Redditch; Tracy Rockley, Norwich; Trev Fairminer, Loughborough; Trevor Burnip, Claverdon; Tricia Dickson, Dundee; Trudy Saunders, Birmingham; Uriel Emil, Cambridge; V Evans, Exeter; V Stocks, Manchester; Val Hudson, Durham; Vanessa Haley, Huddersfield; Vera Kubenz, Coventry; Veronica Ward, Stoke on Trent; Vicky Horvat, Cambridge; Victoria May Hodgson, Tidworth; Vilas Pankhania, Leicester; Vilja Väisänen, Liverpool; Vince Laws, Oulton, Norfolk; Vivienne Roberts, London; W Robinson, North East; Walton Pantland, Glasgow; Warren Brown, Barmouth; Wayne A Layton, Rugeley; Wayne Jones, Bolton; Wayne Morris, Port Talbot; Wendy Redfern, Middleton; Wendy Wilson, Northampton; Will Robinson, Newcastle-upon-Tyne; William Barnes, Merseyside; Winifred Ashe, Belfast ; Yvette Broadhurst, Wolverhampton; Zoe Hughes, Derby

Related

UK disabled persons attack media libels

Beware of generic Candesartan… A Chronicles of the Heart supplement.

2012-06-03T10:31:22Z

Candesartan Cilextil is prescribed specifically for heart failure and hypertension. I’d been taking a generic version of this drug for about a year when, suddenly, a fortnight ago, my local pharmacy switched brands. And I found myself having to double the dose to get even close to the effect of the previous brand.

The original tablets were from Takeda UK Ltd. The defective ones from Mylan, in Potters Bar. Not only were the tablets half the size of the Takeda ones, they were quite clearly half the strength too, if not less, despite the strength marked on the box being the same.

This is unacceptable and could have put my life at risk had a been the sort of patient who ignored such things – there are more of them than you might think. But I’m not, I know exactly the response I should get from all my drugs and, in this instance, I didn’t get it.

Now the problem with the generic drug market is that anyone can apply for a licence – and get it. Such licences are subject to inspection, but because of the sheer number of companies jumping on the generic drug supply bandwagon in this country, inspection is retrospective, if it happens at all.

The Medicines and Healthcare products Regulatory Agency (MHRA), is the regulatory body, and I should report this matter to them (so, indeed, should my GP, who should have asked me for the distributor’s name and the lot number, but he couldn’t give a toss either, ditto the pharmacy), but I know from past experience that they simply couldn’t give a shit. Their attitude, for public consumption, at least, is that all generic drugs are perfect, when any user of these things in bulk, like me, with 15 of the buggers to take every day, knows that quality can, and does, vary wildly. And often dangerously.

A classic example of how bad these drugs can be is generic Salbutamol inhalers (Ventolin), which are, frankly, useless (so much so that in hospital spirometry units they use branded Ventolin as the gold standard or, at least, did last time I was there). Luckily, my local pharmacy dispenses Ventolin too. Generic Salbutamol nebules are not a problem due to the very much greater dose, but in my experience are less effective than the branded version.

Another example is generic Naproxen (a NSAID). One tablet of bought-in, US-made, Naproxen, gives me the same result as two tablets of the UK generic drug.

My advice, given that the trade in generic drugs is effectively unregulated – a fact that was the subject of a journalistic investigation not too long ago, in the Guardian I think – is to treat any change in your response to a drug as a defect in the drug, not you, and get it changed without delay. If you enjoy an exercise in frustration, and being told you don’t know what you’re talking about, then feel free to also report it to the MHRA. Good luck with that!

But back to Candesartan, and the first thing that rang alarm bells was the tiny size of the Mylan tablets, less than half the size of the Takeda tabs. OK, so the difference could have been that they used less of the normal bulking agents, often used to make tablets a manageable size when the amount of drug is tiny (4mg in this case). Or, as it turned out, they could actually contain half, or less than half, of the amount of drug that they should.

I did actually consider, briefly, whether it was possible I had dramatically deteriorated in the 24 hours between the last of the Takeda drug and the first of the Mylan, but dismissed the idea as nonsense. I am deteriorating, but to do so, so dramatically, in such a short space of time is, I believe, impossible.

I might be wrong, of course, and in serious trouble, but as my cardiologist, Dr. Nick Newall, at Arrowe Park Hospital has absented himself and the hospital clearly has no interest in setting me up with another cardiologist, I stand by my conclusion that the drug is seriously under the declared strength.

So if you’re taking Candesartan from Mylan, and you feel a lot worse, don’t just assume you are worse, tell your GP – s/he might be more inclined to report the matter than mine – and should prescribe something better.

Feel free to take a copy of this post with you, should you need to.

PS I suppose it’s possible that the Takeda tablets contained double the amount of the drug, in much the same way as there really might be Lunarians on the moon!

Filed under: A Chronicle of life with heart failure, Treat generic Candesartan with caution Tagged: Candesartan/Amias, Generic drug dangers, Heart failure, Heart failure drugs, MHRA, Under-strength Candesartan

Milestones

2012-06-03T12:28:00Z

In some paediatric cancer units, the children are allowed to choose a bead for every medical intervention - each blood draw, chemotherapy dose, x-ray, etc. is recorded onto a long string of beads: their entire cancer journey mapped out in bright colours.

I often think about doing something similar - creating some outward recognition of the medical procedures that I've survived, but it's hard to know where to start. Lots of the things that have happened over the last few years are things that I barely want to remember, let alone celebrate. I don't have an illness with a finite treatment course, so I can't celebrate the end of treatment, clear scans or definitive surgery. The nature of my condition seems to be gradual decline, with various medical interventions along the way, as they become necessary. That's hardly something to be commemorated!

I have a Pandora bracelet with a single bead on it, named 'The Eye of the Storm'. It was given to me by a friend after I spent several days on a ventilator following a respiratory arrest. Of course it's a reminder of a scary time, but far more than that, it reminds me that I can seek refuge in my friends, even in the middle of huge medical 'storms', and that I don't have to find strength in myself alone.

This year, things have changed dramatically in my body. Losing the ability to eat normally has been devastating, and I suddenly have tubes and lines as a constant reminder of the support that my body now needs. I have a jejunostomy tube (a feeding tube into my small intestine) and a 2-3 inch surgical incision next to it. I have a Hickman line (an IV line that comes out of my chest and ends up next to my heart) for fluids, nutrition and medications. Sometime in the next few months, I expect to have a gastric neurostimulator (like a pacemaker for my stomach) fitted, which will be under the skin on my abdomen, meaning another surgical scar.

I think now is the time to add the next bead to my bracelet.

These new medical interventions have become my lifelines. Not tying me down (though I do have to be very careful when rolling over in bed while hooked up to three different pumps!), but freeing me - they give me the medications, the nutrition and the hydration that I need to function, and I feel so much better for it, despite resenting the intrusiveness of the tubes. I am grateful to have some colour in my cheeks (that I didn't have to paint on!), and am glad that my skin is starting to look smooth and bouncy, rather than reptilian and tissue-paper thin.

For the first time in a very long time, almost all my symptoms are controlled for at least part of the time - I am well-hydrated, am beginning to be well-nourished, and am absorbing the medications that I need. I'm not 'fixed' but I feel optimistic about good days ahead - days when I can go out, visit friends, entertain at home. There are so many exhibitions that I want to see (not least, Christian Louboutin at the Design Museum) and places that I want to visit. Even the thought of being well enough to get up and dressed and go out to read a book in the park fills me with glee!

This is what my second Pandora bead will represent - the freedom and opportunity that I gain from my new lifelines.

My lifelines - my hope for the future.

Survivors seek online route to spreading their lived experience

2012-06-03T08:00:22Z

A group of thalidomide survivors from across Europe are hoping to share the knowledge they have gained from half a century of living with their impairments through a new online community.

They are hoping their website will connect people affected by congenital limb differences (dysmelia) and ensure the knowledge they have gained is “preserved and built upon”.

They also hope to share their experiences of leading independent lives with younger people with dysmelia across the world.

The Dysnet website was set up by the European Dysmelia Reference Information Centre (EDRIC), which was itself set up three years ago by the UK’s Thalidomide Trust and Sweden’s thalidomide organisation FfdN.

Thalidomide was finally withdrawn from circulation 50 years ago, following mounting evidence that the drug caused birth defects, particularly shortened arms and legs.

EDRIC’s four board members are all thalidomide survivors, from the UK, Germany and Sweden, and they are now hoping to expand the board to include people with other forms of dysmelia.

The site will provide support and information, but also act as an archive of research and historical documents, encouraging contributions from across the world.

As well as the website, Dysnet has launched an online community on the RareConnect network, which connects people across the world with rare health conditions, and will be available in English, French, German, Italian and Spanish.

EDRIC also wants Dysnet to draw together the many small support groups for people with dysmelia that are scattered around the globe.

EDRIC is chaired by Geoff Adams-Spink, a thalidomide survivor, the BBC’s former age and disability correspondent and now a disability equality consultant.

He said he was expecting conversations through the site about how to access the right kind of medical expertise, advice on daily living, such as car and home adaptations, and pain management, issues that will be shared by people with dysmelia across the world.

One of the main reasons for setting the site up was to address health inequalities.

He said: “It is such a rare condition that surgeons and physios just do not know how to treat us.”

The hope is that Dysnet will build up a network of experts and eventually organise conferences and even raise funds for research.

Adams-Spink said they hoped to prevent people with dysmelia needing to “reinvent the wheel” when seeking a solution, as it was likely that “some group somewhere else has already solved that problem”.

He said: “As a critical mass, thalidomide people are around 50. We have had a few milestones. We think for younger people we can provide a bit of guidance and as we age we will be learning ourselves as well. The more of us there are the better.”

Another aim of Dysnet, eventually, is to establish a worldwide register of people with dysmelia. There are an estimated 30,000 in the European Union, but many countries do not keep their own registers of birth defects.

A global register could help identify clusters of people with impairments linked to environmental factors, such as in Fallujah, Iraq, as a result of the US assault in 2004, or survivors of the use of Agent Orange in Vietnam, or of the Chernobyl nuclear disaster.

There has already been contact from campaigners in Sicily concerned about a cluster of babies born with impairments possibly caused by environmental factors.

Adams-Spink said: “One of the things we want to do is shed some light into these areas.”

News provided by John Pring at www.disabilitynewsservice.com

Chaos of bus protest will highlight barriers facing DLA losers

2012-06-03T08:00:04Z

Disabled activists are planning a high-profile protest that will highlight the inaccessibility of the public transport system, and demonstrate the problems that will be caused by the government’s cuts to disability living allowance (DLA).

The national day of action on Tuesday, 19 June, is being planned by Disabled People Against Cuts (DPAC) and London’s campaigning accessible transport charity Transport for All (TfA).

They point out that an estimated 500,000 disabled people will lose their DLA as a result of government cuts and reforms.

Many of them use their DLA to pay for a car through the Motability scheme or to pay taxi fares, while others receive “passported” benefits as a result of their DLA, such as a blue parking badge or a pass for free public transport.

DPAC and TfA argue that thousands of disabled people will be forced to use an inaccessible public transport system when they lose their DLA.

Their protest will focus on central London, where the aim will be to cause “maximum but legal chaos”, with the hope that it will attract not just hardened activists but also campaigners who do not feel comfortable taking part in more confrontational direction action.

It follows a more traditional direct action protest held in Trafalgar Square last month, in which DPAC activists brought traffic chaos to central London by chaining their wheelchairs across busy pedestrian crossings in protest at government cuts and welfare reforms.

Andy Greene, a member of DPAC’s steering group and one of the organisers of next month’s action, said: “People will be forced [by the DLA cuts] back onto a public transport system which doesn’t really cater for their needs.

“We will be exercising our right to use public transport, a system that we are told is accessible, so let’s put that to the test.”

Organisers are also planning a lobby of MPs at the House of Commons, with disabled people then descending on local buses for the short journey to Covent Garden to protest outside the headquarters of the Confederation of Passenger Transport, which represents the UK’s bus, coach and light rail industries.

They hope that disabled people – and carers, personal assistants and older people – will invite their MPs to join them on the bus trip.

And they are urging those who are unable to make it to London to organise other protests across the UK, which could include inviting their MP to join them on a trip on public transport.

Lianna Etkind, TfA’s campaigns and outreach co-ordinator, said: “This is going to be a very inclusive action that hopefully everybody will feel able to join in with.”

She added: “If the government wants to get more disabled people off benefits and into work, the best thing would be for them to focus on opening up transport for everyone.”

For more information about the protest, visit the websites of DPAC or Transport for All. It is hoped that transport “buddies” will be available for disabled campaigners who need someone to accompany them on the protest.

News provided by John Pring at www.disabilitynewsservice.com

Silly Danni, Silly Body, Silly Brain

2012-06-03T06:22:30Z

I’ve tried writing two different blog posts in the last couple of days but they’re not coming out how I want them to. Silly brain.

Danni wearing a spotty hat

I went out Monday, Tuesday and Wednesday in my new wheelchair. Monday I already talked about. Tuesday I went into Newcastle, bought a hat to wear as the sun was getting in my eyes, and then went to McDonalds. It was as hot and sunny as it had been on Monday.

Danni on the bus

On Wednesday I went into Newcastle again, this time to meet my friend Little Feet (her blog is at Chaos and Control and is well worth checking out). We’d only really spoken on Twitter before, but she is as lovely in real life as she is online. We had a drink in a coffee shop before she had to go to the airport to go home (she’d been in Newcastle for work). Afterwards we went to pick up Johan’s prescription for an inhaler (he’s been having breathing problems) then went and ate pizza. The bus home went over the High Level Bridge which I was very happy about.

Johan has been getting me birthday presents and giving them to me early. I now have a Lego Penguin keyring, some penguin drink chillers (you use them instead of ice cubes), and a penguin pillow pet, which is just the right size to use with the wheelchair

I may have overdone it as I was feeling the effects of the adrenaline on Thursday and Friday and was finding it hard to sleep, then on Saturday I slept all day after being up all night. I got paid on Friday due to the double bank holiday (something to do with the Queen’s Diamond Jubilee) so have bought some communication cards, some hair washing stuff for use while I’m still ill, and will also be getting some clothes for both of us and a media mount for my Trabasack.

I’m hoping that if I rest lots I’ll be feeling better again soon. Friday night Johan accidently set the smoke alarm off and my body responded by jerking violently and I couldn’t speak. I’m also in slightly more pain and more nauseous than I was. Silly Danni for doing too much.

Government ignores recommendations on PIP criteria ~ Inclusion London

2012-06-03T08:47:54Z

The government has published a luke warm response to Work and Pensions Committee’s report on the reform of Disability Living Allowance to Personal Independence Payment. Published 31/05/2012 Qualifying period: The government refused to action the committee’s recommendation that sudden … Continue reading →

Tribute to Gerry Poole: Disability rights campaigner’s final action over welfare cuts before losing his battle with cancer

2012-06-03T08:05:20Z

Published on Friday 1 June 2012 in The Sheffield Telegraph TRIBUTE was paid this week to Gerry Poole, the Sheffield man whose cancer diagnosis prompted him to campaign against “the terrible impact of welfare cuts”. The 28-year-old had said: “I … Continue reading →

Laurie Penny: Shame has become our stick for beating the poor

2012-06-03T05:35:53Z

By LAURIE PENNY , The Independent, Friday 1st June 2012 Single mother Shanene Thorpe was squeezed by the BBC into a caricature: shameless scrounger When someone starts talking about “political violence”, you usually know what that means. It means nightsticks, kettling and … Continue reading →

Work Capability Assessments Review having adverse effects says Dundee MSP Joe Fitzpatrick

2012-06-03T04:54:20Z

By JOE FITZPATRICK MSP The UK Government’s review of welfare benefits is not working claims a Dundee MSP using as evidence a letter from the UK Minister for Employment which concedes that the reforms, incorporating new Work Capability Assessments, “have had … Continue reading →

Wheel-Mouse vs All The Crazy Robots By Celyn Lawrence Age 8

2012-06-03T13:04:00Z

Last year I met a little girl called Celyn. She's a clever, funny little girl who likes bubbles, pink socks and going to Brownies. She's very sophisticated taste in music for an 8 year old, like me Euinaudi is her favourite chill out listen. We sat in the garden, blew bubbles and laughed.

Celyn happens to have a particularly severe form of cerebral palsy and multiple types of epilepsy. In fact, she has very similar physical disabilities to the late Ivan Cameron. She can't move independently, use her limbs, see very well speak or eat.

Despite all those barriers to communication, Celyn has just become a published author. She's written a book with her Dad, Mark Lawrence called Wheel-Mouse vs All The Crazy Robots. The book is entirely Celyn's work, her dad has just acted as scribe. The book has been released as a fundraiser for the children's hospice charity that Celyn goes to and is available for download here on UK kindle (USA version here)

There's also a Wheel-Mouse vs All The Crazy Robots youtube video

It's Jubliee weekend and much of the nation is celebrating. What better time to take a moment to see into Celyn's laugh out loud funny world and support a vital children's charity too?

Congratulations Celyn, you have a wit and wisdom beyond your years. I can't wait for your next book!

Direct donations can be made here

Copyright to BenefitScroungingScum (c) 2007 (c)If you wish to repeat, use, or quote any aspects of this site, permission MUST be asked first and a copyright credit to me should be acknowledged at all times. Thank you.

postpolionews: Post-Polio News Early Edition is out! http://t.co/B6Pl8aFy ▸ Top stories today via @postpolionews

2012-06-03T04:30:12Z

postpolionews: Post-Polio News Early Edition is out! http://t.co/B6Pl8aFy ▸ Top stories today via @postpolionews

In the shoes of… Helen Bate | Managing Director | Pictures to Share

2012-05-31T06:30:12Z

For Day 11 of our series of ‘walk in my shoes’ blogposts, looking at dementia from different perspectives, we have another passionate post. Helen talks about the frustration of knowing you have a resource that can “make a difference” but struggling to get recognition. Not enough priority given to imaginative approaches!
I know the feeling…!

Banging our heads against the wall

After 6 years spent supplying the commercial dementia care industry we have learned a lot. Although there are some wonderful people working in the field, it can be a depressing place and it can sometimes feel like we’re banging our head against a brick wall in trying to improve the quality of life for their clients.

We are a successful social enterprise specializing in improving the quality of life for people with mid to late stage dementia by providing them with well-researched, accessible and beautiful picture books. The way that the books work to improve communication and calm agitation has been proved again and again. The books provide something easy to access and enjoyable for people to do when there is nothing else available. They’re easy for carers to use with people even in the very late stages, and they can be used without help by many people in the mid stages of the illness. They’re affordable and provide something that carers and family of people with dementia are crying out for.

Some large, and usually charitable care home groups recognize the value of the books in improving the quality of life for those that they care for, and they are prepared to invest heavily in this. Public and third sector organisations such as public libraries and Alzheimer Society day centres also understand that they need good resources to help their clients. They recognize the many benefits that this type of resource can offer and provide them accordingly.

But far too many care homes still seem to be purely profit driven and real quality of life issues seem to be way down on their agenda when it comes to using their imagination or spending even modest amounts of money.

As a social enterprise it is our business to be on the side of the person with dementia – to provide them with what they need. It is extremely rewarding to work with organisations that are also on the side of the person with dementia, who are looking to give them what they need, not use them as cash cows. Sometimes it is not the cost that prevents them investing, but a lack of imagination to really understand how people with dementia who may no longer be able to read, can possibly benefit from books. Whatever their reason it is the people with dementia that are losing out again.

Helen Bate B.A.Dip.Arch.B.A.(Hons)M.A.
www.picturestoshare.co.uk
helen@picturestoshare.co.uk

Alzheimer Scotland: Dementia Awareness Week conference 2012 (agescotland.wordpress.com)
In the shoes of Karen… supporting both of my parents with dementia… (whoseshoes.wordpress.com)

Serco faces fresh allegations over Cornwall out-of-hours GP service

2012-06-01T23:11:50Z

Staff and patients raise new examples of lone GPs covering entire county overnight and non-medical staff handling calls

Staff and patients of the Cornwall out-of-hours GP service have raised fresh concerns about the level of care being provided by the privatised contractor Serco. They allege that only one GP was on duty from midnight to 8am for the whole county the night of 29 May.

They have also revealed that a switch to a new automated system to deal with patients' calls, in which callhandlers following a computer-generated script replace medically trained nurses, led to queues of 40-plus waiting three hours and more for advice over the weekend of 26-27 May.

The new worries emerged following the Guardian's revelations last week that Serco is under investigation by the health watchdog over allegations that the service has been so understaffed as to put patient safety at risk and over claims that Serco has altered performance data to meet targets it has in fact failed to meet.

Serco, and the local primary care trust that commissioned it, both denied that the service is unsafe. They also said that an independent audit for the PCT has found no evidence of data manipulation.

On the night of 29 May, only one GP was available to cover the whole county from midnight until 8am, according to whistleblowers, who alleged that it was not the first time this had happened. It takes over two hours to drive from one end of the county to the other. The four other cars available for visiting patients that night were staffed not by doctors but by three lower grade paramedics known as emergency care practitioners and one nurse practitioner, sources said.

Serco did not deny that there was only one doctor on duty for the county after midnight earlier this week. (It denied last week that this has ever been the case previously, however.) "There were a total of five experienced clinical and medical staff, each one in a car, covering Cornwall [on 29 May]. They were only required to make a total of eight house calls that night and all patients were seen well within the national standards. We regularly use a range of roles to provide out of hours services," the company said in a statement.

The PCT said its contract with Serco did not specify how many doctors should be used overnight but that it was "concerned to hear there was only one GP on duty and we have raised this with Serco".

When Serco was reawarded the £6.4m a year contract for out-of-hours GP services last October, one condition was that it introduce a new automated telephone response system that replaces trained nurses with non-medical callhandlers to assess initial calls.

This NHS Pathways system has been promoted by the Department of Health as a more efficient and cost-effective way to dealing with patients contacting out of hours and emergency services. The Cornwall service was previously run, not for profit, for £7.5m a year by a co-operative of local GPs.

For Newlyn-based Jessica Tooze, mother of one-year-old Ruby, the experience of the Pathways call system earlier this month was alarming. She rang the out-of-hours service when her baby, who had been unwell in recent weeks with a chest infection, seemed in pain. "The baby was screaming, and I wanted someone to listen to her chest and see if she needed antibiotics, but the telephone operator didn't seem to want to listen to what I was saying."

The operator, according to Tooze, told her she was not medically trained and had to first work through a prescribed series of questions and scripts before she could decide whether the call merited a doctor. "The questions were ridiculous — is she choking? No, she was screaming near me. Had she inhaled poisonous gases? No she'd had a chest infection — I was getting quite panicky, I realised I had to get past this gatekeeper," Tooze recalled.

Tooze was given a doctor's appointment at a clinic at the West Cornwall hospital for later that evening and has no complaint about the treatment she received there, but remains unhappy with initial assessments being made by people without medical training.

Serco pointed out that there are plans to introduce the more automated system around the country as best practice. "The NHS Pathways system was developed and is maintained by a group of NHS Clinicians with extensive experience of both urgent and emergency care provision, and also of clinical decision support tools. This includes GPs, nurses, paramedics and many more. Whilst we cannot comment on individual cases, Ms Tooze's use of the NHS Pathways system had no adverse effect on her access to a clinician".

The company admitted that the switch to the new system had led to delays last weekend. "We recognise that there was an issue over that weekend as we worked towards full implementation of the NHS Pathways system and this did cause delays in triage. This has been addressed, and the triage queue has significantly improved since then."

The new body that will take over from the PCT under the government's restructuring of the NHS sought to reassure people in Cornwall ahead of the long holiday weekend. Dr Colin Philip, interim chair of Kernow Clinical Commissioning Group, said: "In response to recent allegations about Serco's out-of-hours service in Cornwall, we have met with Paul Forden, managing director of clinical services for Serco.

"We are looking closely at every one of the Guardian's allegations. We are surveying local GPs to gauge their views about the service and we will be ensuring that all local clinicians understand their rights and responsibilities under the whistleblowing policy.

"Although at this point we have no evidence to support concerns about the safety and quality of this service, we are taking these allegations seriously. Our primary concern is our patients and it is important they feel confident about local services."

Felicity Lawrence

Being Non-Binary

2012-06-03T00:29:00Z

I'm genderqueer. It's something I haven't really written about but feel like I should so bear with me whilst I try.

For years I didn't feel comfortable in myself, something seemed wrong. I didn't feel like a woman or a girl but at the same time didn't feel like a man or a boy. The whole time I assumed that because I didn't want to transition to a different body I was just being weird so just I

GBE2 Week 54 ~ Self

2012-06-02T23:39:00Z

Ah Self
not on the shelf
alone with other people.
It used to feel that way
before I got to know
the me that was my self.
Know Thy Self
The message from
ancient world
ancient self.
I went inside to seek
healing that was deep
I'd fractured up my being
I really was not seeing
the I within I am.
Hurt by life and people
I hid myself away
I licked my wounds
I faced my fears in shadows
mirrors of other self beings
we all are a self of our own
and we are all connected by love
fragmented apart with fear.
I've been on a long old journey
I intended to share more of that
but tonight all I have is a feeling
of love that reached out
I embraced.
I embrace all I am
all that you are
Each self is
a masterpiece itself
When we realise the love
we are here to be
circumstance no longer matters.
The paradox here my friend
is that really isn't the end.
For when the fears gone
only love remains
and then it all flows
in support.
When you open the flow
all that's ready
will flow back to you
with Grace.
The times we are in at the time
are fuelled and filled up with fear.
When we learn to trust self
to make our mistakes
to learn and filter out
negative space.
As cosmic dust lands in my face.
I go a step too far.
Okay
it really is okay
I keep being who I are.
I wander near and far
visit memories that made me grin.
Past times that were so grim.
Mixed in a soufflé
with crispy bits
burnt edges.
Tasty is I may.
The grim bits and the best bits
make up a whole of me.
Memory mislaid cards
video, pictures, records of my past.
They will come to light
just as memories do
unwanted or with relief.
Once a memory is formed
it changes many times.
It may never be remembered
it may haunt our days and dreams.
The best thoughts are empowering
the rest are unfaced fears.
We may think we know the meaning
the top layer at least.
I delve beyond the hurt and pain
I no longer fear experiencing.
Even when it is excruciating
physically, mentally and emotionally.
It is a part of my experience
a blip in moments of time.
Some moments I have loved to the hilt
some taken for granted and missed when gone
some I didn't like, much if at all.
Moments where I felt
completely over-powered
futile dis-empowered
autonomy struck aside
battered bruised self.
Health too let me down
Can't breathe.
Why me?
Why?
Each bruise healed on my body.
Each breath I took was great.
I stayed alive
having faced death.
I realised I was more afraid of living
Than the release of dying.
All this pain
limitation
You'd think
I'd never smile again.
I meditated on life
learn to live life with joy
even when disadvantaged
in many conceivable ways.
This has gone on long enough
I hope you are well on your journey
To finding your self as love.
Elaine Edwards 00.33 Sunday 3rd June 2012

Oh dear I am just over half an hour late posting this although it is still Saturday in USA can I be excused for being late...I am just amazed I wrote this. I had written notes but that can be done another day. A piece of flow writing was what was what came out...after I had been delayed from starting by a beautiful phone call from old friends I had cut off from, telling me how I have been missed and how I am loved...

I have not been as able to be around old friends as i was...I needed some time to go deep and deal with pretty difficult circumstances...

http://www.facebook.com/groups/209032889129479/

rather hoping that was a link...my brain is a bit fuddled and I am tired but I am doing very well considering what has been my life experience of late...grins

I have just discovered 3 drafts I never got round to doing anything with. The changes led me to this. Blogger delayed me with changes but changes can be good ones!

1st February 2011 a few signs are pointing towards chest infection but I'm thinking maybe it is more to do with facing a fear...fear can restrict the breathing and chest in a grip...but if I go wrong what would it matter? There is no wrong only against the flow..

26th February 2011 Is Ignorance Sublime
Is ignorance sublime
hiding from time
understanding reason
experience we bleed in
finding understanding
hard work so tiring
facing all our demons
find they too are fearful
tis why they seem so evil
the opposite of live
worries of past and future
stop us living Now
hold on to pain
what is there to gain
which one is the brave
ignorant or wise
truth it is them both
I send you all my love
if you will stay afraid
not face the big divide
if you fight the fight
I admire new found light
if your light is in the dark
I hope you find your spark
I will shine my light
I will find my delight
attract more light
but what of the moth?
01.53 4th July 2010
An old one...but think I needed to remind myself...

Trust ~ GBE2 14th August 2011 When we first arrive in the world all we have is trust, we trust we will be fed and nurtured, at least enough to survive.

Social Media Holiday

2012-05-31T19:08:12Z

I’m off work on holiday from tomorrow, so I’m not going to blog again until at least mid June. I’m imposing a social media ban upon myself whilst I go to Cornwall and do ‘Dad’ things, read some books and see good friends with my wife and son. Thanks to all for the support the …

"Polio and Post-Polio News" via Chris in Google Reader

‘It’s like being switched off’ | MS patient discusses chronic fatigue | BBC News website, 30 May 2012

Minutes of the March meetings of the Countess of Mar’s ‘Forward ME’ Group now available

Doctors 'risking email privacy breaches'

Media Is Fuelling Hate Against Disabled Benefit Claimants

Beware of generic Candesartan… A Chronicles of the Heart supplement.

Milestones

Survivors seek online route to spreading their lived experience

Chaos of bus protest will highlight barriers facing DLA losers

Silly Danni, Silly Body, Silly Brain

Government ignores recommendations on PIP criteria ~ Inclusion London

Tribute to Gerry Poole: Disability rights campaigner’s final action over welfare cuts before losing his battle with cancer

Laurie Penny: Shame has become our stick for beating the poor

Work Capability Assessments Review having adverse effects says Dundee MSP Joe Fitzpatrick

Wheel-Mouse vs All The Crazy Robots By Celyn Lawrence Age 8

postpolionews: Post-Polio News Early Edition is out! http://t.co/B6Pl8aFy ▸ Top stories today via @postpolionews

In the shoes of… Helen Bate | Managing Director | Pictures to Share

Related articles

Serco faces fresh allegations over Cornwall out-of-hours GP service

Being Non-Binary

GBE2 Week 54 ~ Self

1st February 2011 a few signs are pointing towards chest infection but I'm thinking maybe it is more to do with facing a fear...fear can restrict the breathing and chest in a grip...but if I go wrong what would it matter? There is no wrong only against the flow..

Social Media Holiday