Heads up: Next meeting of Chronic Fatigue Syndrome Advisory Committee (CFSAC) (US)

Heads up: Next meeting of Chronic Fatigue Syndrome Advisory Committee (CFSAC) (US)

Shortlink: http://wp.me/p5foE-3ih

The next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) takes place on Tuesday and Wednesday, 10 and 11 May 2011.  A copy of the Agenda for this meeting will be posted as soon as it becomes available.

“Members of the public will have the opportunity to provide oral testimony at the May 10-11, 2011, meeting if pre- registered.”

Chronic Fatigue Syndrome Advisory Committee (CFSAC)

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

factors affecting access and care for persons with CFS;

the science and definition of CFS; and

broader public health, clinical, research and educational issues related to CFS.

Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.

Dr. Wanda K. Jones, Principal Deputy Assistant Secretary for Health in OASH, will continue in her role as the Designated Federal Officer for CFSAC.

CFSAC Notices

http://www.hhs.gov/advcomcfs/notices/index.html

CFSAC Roster

http://www.hhs.gov/advcomcfs/roster/index.html

CFSAC Meetings

Agenda; Minutes; Presentations; Recommendations

http://www.hhs.gov/advcomcfs/meetings/index.html

Recommendations to the Secretary of Health and Human Services

http://www.hhs.gov/advcomcfs/recommendations/index.html

 

May 10-11, 2011 CFSAC Meeting

PDF: http://edocket.access.gpo.gov/2011/pdf/2011-6702.pdf

Html: http://edocket.access.gpo.gov/2011/2011-6702.htm

[Federal Register: March 22, 2011 (Volume 76, Number 55)]
[Notices]
[Page 15982]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr22mr11-88]

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Meeting of the Chronic Fatigue Syndrome Advisory Committee
———————————————————-

AGENCY: Department of Health and Human Services, Office of the Secretary, Office of the Assistant Secretary for Health.

ACTION: Notice.

SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.

DATES: The meeting will be held on Tuesday and Wednesday, May 10 and 11, 2011. The meeting will be held from 9 a.m. until 5 p.m. on May 10, 2011, and 9 a.m. until 4:30 p.m. on May 11, 2011.

ADDRESSES: Department of Health and Human Services; Room 800, Hubert H. Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201. For a map and directions to the Hubert H. Humphrey building, please visit http://www.hhs.gov/about/hhhmap.html .

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, DrPH; Executive Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201. Please direct all inquiries to cfsac@hhs.gov .

SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002.
The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) the current state of knowledge and research and the relevant gaps in knowledge and research about the epidemiology, etiologies, biomarkers and risk factors relating to CFS, and identifying potential opportunities in these areas; (2) impact and implications of current and proposed diagnosis and treatment methods for CFS; (3) development and implementation of programs to inform the public, health care professionals, and the biomedical academic and research communities about CFS advances; and (4) partnering to improve the quality of life of CFS patients.

The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site,
http://www.hhs.gov/advcomcfs  when it is finalized. The meeting will be broadcast over the Internet as a real-time streaming video. It also will be recorded and archived for on demand viewing through the CFSAC Web site.

[Ed: the real-time streaming also has real-time auto transcription.]

Public attendance at the meeting is limited to space available.

Individuals must provide a government-issued photo ID for entry into the building where the meeting is scheduled to be held. Those attending the meeting will need to sign-in prior to entering the meeting room.

Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person at cfsac@hhs.gov in advance.

Members of the public will have the opportunity to provide oral testimony at the May 10-11, 2011, meeting if pre- registered.

Individuals who wish to address the Committee during the public comment session must pre-register by Monday, April 18, 2011, via e-mail to cfsac@hhs.gov . Time slots for public comment will be available on a first-come, first- served basis and will be limited to five minutes per speaker; no exceptions will be made. Individuals registering for public comment should submit a copy of their oral testimony in advance to cfsac@hhs.gov  prior to the close of business on Monday, April 18, 2011.

If you do not submit your written testimony by the close of business Monday, April 18, 2011, you may bring a copy to the meeting and present it to a CFSAC Support Team staff member. Your testimony will be included in a notebook available for viewing by the public on a table at the back of the meeting room.

Members of the public not providing public comment at the meeting who wish to have printed material distributed to CFSAC members for review should submit, at a minimum, one copy of the material to the Executive Secretary, at cfsac@hhs.gov  prior to close of business on Monday, April 18, 2011. Submissions are limited to five typewritten pages. If you wish to remain anonymous, please notify the CFSAC support team upon submission of your materials to cfsac@hhs.gov

All testimony and printed material submitted for the meeting are part of the official meeting record and will be uploaded to the CFSAC Web site and made available for public inspection. Testimony and materials submitted should not include any sensitive personal information, such as a person’s social security number; date of birth; driver’s license number, State identification number or foreign country equivalent; passport number; financial account number; or credit or debit card number. Sensitive health information, such as medical records or other individually identifiable health information, or any non-public corporate or trade association information, such as trade secrets or other proprietary information also should be excluded from any materials submitted.

Dated: March 18, 2011.
Wanda K. Jones,
Executive Secretary, Chronic Fatigue Syndrome Advisory Committee.
[FR Doc. 2011-6702 Filed 3-21-11; 8:45 am]
BILLING CODE 4150-42-P

Previous two meetings:

 

May 10, 2010 Meeting

Agenda

Minutes

Presentations

Recommendations

Videocast    [RealPlayer is required to view]

CFSAC Recommendations – May 10, 2010

http://www.hhs.gov/advcomcfs/recommendations/05102010.html

The Secretary should ask the blood community to defer indefinitely from donating any blood components, any person with a history of chronic fatigue syndrome.

The Secretary should recognize the special challenges of ensuring that CFS is part of any efforts to train or educate health care providers under health reform.

The Secretary should direct CMS, AHRQ, and HRSA to collaborate on developing a demonstration project focused on better value and more efficient and effective care for persons with CFS. This can be a public-private effort, and monitoring outcomes and costs should be part of the overall evaluation.

The Secretary should ask the Designated Federal Officer to explore adding a web-based meeting to conduct CFSAC business.

CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the “Signs and Symptoms” chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).*

*DFO Note: The ICD 10-CM is scheduled for implementation on October 1, 2013. In that classification, two mutually exclusive codes exist for chronic fatigue [sic]:

post-viral fatigue syndrome (in the nervous system chapter), and
chronic fatigue syndrome, unspecified (in the signs and symptoms chapter).

HHS has no plans at this time to change this classification in the ICD 10-CM.

October 12, 2010 Science Day
October 13-14, 2010

Agenda

Minutes

Presentations

Recommendations

Videocast    [RealPlayer is required to view]

CFSAC Recommendations – October 13-14, 2010

http://www.hhs.gov/advcomcfs/recommendations/1012-142010.html

The specific recommendations articulated by the Committee are:

Develop a national research and clinical network for ME/CFS (myalgic encephalomyelitis/CFS) using regional hubs to link multidisciplinary resources in expert patient care, disability assessment, educational initiatives, research and clinical trials. The network would be a resource for experts for health care policy related to ME/CFS.

Engage the expertise of CFSAC as HHS moves forward to advance policy and agency responses to the health crisis that is ME/CFS.

Adopt the term “ME/CFS” across HHS programs.

Memo from Secretary Sebelius to Christopher Snell, CFSAC Chair, on the October 2010 Meeting

http://www.hhs.gov/advcomcfs/sebelius_memo.pdf

Two EDMs: Policy intentions toward Carers; Working Carers

EDM 128: New government’s policy intentions toward Carers  Hepburn, Stephen 02.06.2010

EDM 246: Working Carers  Cooper, Rosie 16.06.2010

Shortlink: http://wp.me/p5foE-2U1

From Carer Watch  |  15 June 2010

http://carerwatch.com/

These next few weeks carers are going to be to the forefront with Carers Week imminent. Please take a few minutes to contact your MP and ask him/her to sign the following EDM. Please let Carer Watch know if your MP has signed.

http://edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=41044&SESSION=905

EDM 128

CARERS
02.06.2010

Hepburn, Stephen

That this House calls on the Government to make an early statement on its policy intentions toward carers; notes the selfless hard work and commitment displayed by the approximately six million carers in the UK; recognises the incalculable difference carers make to the lives of their loved ones; acknowledges that carers save the country an estimated £87 billion each year; and supports an immediate review of the current carers allowance level.

Also:

http://edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=41169&SESSION=905

EDM 246

WORKING CARERS
16.06.2010

Cooper, Rosie

That this House celebrates the valuable role performed by over six million carers in the UK, in the majority of cases without any financial recognition from the public purse, saving the country an estimated £87 billion per year; congratulates Carers UK for the valuable work it does in supporting carers and highlighting their needs during Carers Week; further congratulates the Union of Shop, Distributive and Allied Workers for its continued campaigning for a better deal for working carers; recognises that many carers need to work to make ends meet because Carer’s Allowance only pays £53.90 a week for a minimum of 35 hours caring; urges the Government to match the commitment of the 2008 National Carers Strategy to ensure that carers are not forced into financial hardship by their caring role and to support the recommendation of the Work and Pensions Select Committee 2008 report that ‘DWP should support adults who become carers during their working lives to combine work and care’; and therefore calls on the Government to remove the disincentive to work represented by the cliff-edge earnings threshold of £97 per week that prevents many carers from working at all and stops those in work from fulfilling their full working potential.

 

Early Day Motions (EDMs)

http://edmi.parliament.uk/EDMi/Default.aspx

Early day motions (EDMs) are formal motions submitted for debate in the House of Commons. However, very few EDMs are actually debated. Instead, they are used for reasons such as publicising the views of individual MPs, drawing attention to specific events or campaigns, and demonstrating the extent of parliamentary support for a particular cause or point of view.

An MP can add their signature to an EDM to show their support. They can also submit amendments to an existing EDM. Although majority of EDMs are never debated, the group of EDMs known as ‘prayers’ may be debated. Prayers are motions to overturn Statutory Instruments (laws made by Ministers under powers deriving from Acts of Parliament). Further information on EDM procedure can be found in the Commons Information Office Factsheet Early Day Motions.

Up-to-date and searchable information on EDMs is available from the Early Day Motions database. The database is updated nightly with new EDMs and signatures added to existing EDMs. To look at EDMs from any session going back to 1989/90, select the session you want from the pull down menu in the top right hand corner of the screen. For EDMs and signatures prior to 1989/90, please contact the House of Commons Information Office (020 7219 4272).

To view current EDMs and lists of signatories: http://edmi.parliament.uk/EDMi/EDMList.aspx

BBC News: “New benefit system labelled unfit”

BBC News: “New benefit system labelled unfit”; Benefits and Work: Daily Mail and Carer Watch

Shortlink: http://wp.me/p5foE-2Tw

The ME Association reported on 28 May:

There was a 18-minute item about the Coalition Government’s Welfare Reforms programme on the BBC2 ‘Newsnight’ programme last night (27 May 2010) – a film package with Peter Marshall reporting from Coventry and studio discussion chaired by Gavin Esler. The government spokesman who faced three benefits claimants in the studio was Steve Webb (Lib Dem), the new Minister for Pensions.

To watch this item on BBCi Player, click on the following link and then move the cursor on the time bar to 13:58.

Newsnight programme (27 May 2010)

http://www.bbc.co.uk/programmes/b006mk25

BBC iPlayer

BBC Scotland Investigates – 2010 – 6. Who’s Cheating Who?

Mark Daly investigates new government plans to end the UK’s sicknote culture by getting a million people off benefits and back to work. We reveal how, in Britain’s modern welfare state, private companies are paid billions to carry out medical assessments on claimants to determine if they are fit for work, and ask if they are putting profits before welfare. The film hears claims that patients across Scotland with severe mental illness and cancer are being denied benefits and told they must find a job.

Broadcast on:

BBC One, 10:45pm Wednesday 26th May 2010

Duration: 30 minutes
Available until: 11:14pm Wednesday 2nd June 2010
Categories: News, Scotland

BBC News: “New benefit system labelled unfit”

http://news.bbc.co.uk/1/hi/scotland/10159717.stm

A new benefits system promising to end the UK’s sicknote culture has been condemned as unfit for purpose.

Employment Support Allowance (ESA) was introduced 18 months ago to replace incapacity benefit.

But its new medical assessment has led to allegations by Citizens Advice Scotland that it targets the most vulnerable.

However, the Department for Work and Pensions believes ESA is the best way to ensure people get back to work.

A BBC Scotland investigation found that under ESA, more than two thirds of claimants are being found fit to work, almost 20% more than the government had planned.

Full article on BBC Scotland here

From Steve Donnison Benefits and Work

Atos medicals on TV [26 may] plus more secret recording

26 May 2010

Dear Subscriber,

In this issue we have what we regard as an absolutely brilliant letter by a member who decided that he was going to record his medical secretly, but informed Atos in writing in advance that he was going to do so. It worked for him and you may well want to give it a try yourself: Recording medicals – excellent strategy from a member (This article is members only)

Atos won’t be happy about this and they probably aren’t very pleased about featuring in a TV programme tonight, Wednesday 26th May. Who’s Cheating Who?, which questions whether employment and support allowance is fit for purpose and whether profits are being put before welfare, is on at 10.45pm on BBC1 Scotland. (Even if you don’t live in Scotland, you should be able to watch if you have freeview, Sky or cable TV). We know that many Benefits and Work members provided information to the makers of this programme and we’d be very interested to have your comments after you’ve watched. More details and your opportunity to comment: Who’s Cheating Who?

Another group of people who aren’t feeling too happy at the moment are MP’s There’s outrage at Westminster over the impression that Ipsa, the new expenses authority, is treating our honourable members as if they were – in the words of one ex-minister ‘benefits claimants’: Shed real tears as you read about the tribulations of our honourable members: Outrage as MPs treated like claimants

Sadly, there are clouds on the horizon for claimants too, as the Queen’s Speech includes a welfare reform bill intended to simplify the benefits system and, somewhat miraculously, move 5 million claimants currently ‘languishing’ on benefits into work as a result: Major changes to benefits ahead

There’s more cheering news from north of the border, though. A member of the Scottish parliament has tabled a motion asking for an urgent review of employment and support allowance on the grounds that it’s unit for purpose. Whilst the motion won’t have any practical effect, we think that supporting an elected representative anywhere in the UK who has the courage to speak out in favour of sick and disabled claimants is worthwhile. Find out more and send Hugh O’Donnell a message of support here: Scottish motion against ESA

TRIBUNAL LOVE
Finally, there’s no shortage of sad, angry and desperate tales in the forum at the moment, but we’ve managed to find a few happy ones to keep the mostly positive tone of this newsletter going right through to the end.

Appeal Success at loooooong last

DLA APPEAL WON!!!

ESA Success of sorts!

Tribunal-I Love You!

Good luck,

Steve Donnison

(c) 2010 Steve Donnison. You are welcome to reproduce this newsletter on your website or blog, provided you do so in full.

Daily Mail  |  26 May 2010

New disability benefit system is flawed and could cost taxpayer MORE, says one of its architects

One of the architects of a new benefit system for disabled people urged the Government to delay rolling it out today after evidence that medical tests are wrongly finding thousands of people fit for work…

Full article here

Carer Watch  |  30 April 2010

A campaign group for carers across the UK run by independent, unpaid carers

Silence from Leaders re Carers Benefits is deafening

We thought this may be of interest to you ( and your members). As much as social care has been given such a high profile, we feel once again family carers have been overlooked.Comments can be added to the blog post.

http://carerwatch.wordpress.com/

Statement from P.A.N.D.O.R.A.: Ryan Baldwin case is an ominous wake-up call

Statement from P.A.N.D.O.R.A.: Ryan Baldwin case is an ominous wake-up call

Shortlink: http://wp.me/p5foE-2OW

Our very best wishes to Ryan and his family.

Related material:

Baldwin Family website: http://www.bringingryanhome.com/ 

Media:

Mountain Express

Home for good?
Black Mountain couple regains custody of son

by Nelda Holder in Vol. 16 / Iss. 31 on 02/24/2010

Statement from P.A.N.D.O.R.A., Inc.

FOR IMMEDIATE RELEASE

26 February 2010

By Marly Silverman, Founder & President

The case of Ryan Baldwin is an ominous wake-up call of the need for awareness of Pediatric Chronic Fatigue Syndrome

Nelda Holder’s article on young Ryan Baldwin and his family (“Home for good? Black Mountain couple regains custody of son” Mountain Express 2/24/2010) shines a long-anticipated and much needed spotlight on more research, proper diagnosis and treatment options for children and young adults under the age of 18 stricken with Chronic Fatigue Syndrome (CFS).

The sad case of Ryan Baldwin and his family underscores the dangerous lack of understanding as to the serious nature and special care of children with Chronic Fatigue Syndrome, as well as current objective medical research on the illness.

Clearly, as was the case of the Baldwins, government officials need better understanding and awareness of the complexities of this illness that strikes 1 to 4 million Americans including children, teenagers, young adults, adults, and the elderly, according to the Center for Disease Control and Prevention (CDC).”

CFS community advocates for Ryan

In 2009, Pat Fero, director of the Wisconsin CFS-ME association and Jerry Rice, the Baldwin family’s local advocate in their home in Buncombe County, North Carolina brought Ryan’s situation to our attention. County officials had removed Ryan from his family, alleging that his parents have not provided him with “mental health care and access to a pediatrician.”

Along with 23 other patient advocacy non-profit organizations, P.A.N.D.O.R.A. mobilized an awareness campaign that included letters and petitions to North Carolina Governor Bev Perdue, NC State Legislators and NC Federal legislators on behalf of then 16-year-old CFS patient Ryan and his family.

We were elated when Ryan was finally reunited with his family. We were even more excited when Lisa Baldwin, Ryan’s mother, joined P.A.N.D.O.R.A. early this year to help with creating awareness of the issues that surround families with children with Chronic Fatigue Syndrome so that no other family will have to go through “the hell” that the Baldwin family did.”

Pediatric Chronic Fatigue Syndrome Conference Committee Forming

To further address the need for better understanding and awareness of CFS in adolescents, P.A.N.D.O.R.A., a nationally recognized patient advocacy group which stands for Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc., is creating its first patient and physician CME committee to help plan a conference explicitly dealing with pediatric Chronic Fatigue Syndrome.

The Pediatric Chronic Fatigue Conference aims to provide the medical community and government authorities with the proper training and resources to launch important educational initiatives that will ensure that children with CFS and other chronic pain illnesses and their families will be treated with the respect and care that they deserve.

For additional information about the P.A.N.D.O.R.A. Pediatric Chronic Fatigue Syndrome conference committee, contact Marly Silverman at: contact@pandoranet.info .

About P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy P.A.N.D.O.R.A. was founded on July 1, 2002 by Marly C. Silverman, a Chronic Fatigue Syndrome and fibromyalgia patient. Our mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and persistent Lyme disease and advocate on quality of life issues.

In 2008, P.A.N.D.O.R.A in partnership with the Lanford Foundation-Lifelyme, Inc. , established the NeuroEndocrineImmune (NEI) CenterT, a community, patient-driven grass roots project to be based in New Jersey. The NEI CenterT will be the first research center dedicated to understanding and treating chronic neuroendocrineimmune illnesses.

Walson Communications

www.walsonpr.com

TEL: 714-970-2268

Cell: 714-865-4147

BBC accused of ‘promoting euthanasia by ignoring rights of disabled’

BBC accused of ‘promoting euthanasia by ignoring rights of disabled’

Shortlink: http://wp.me/p5foE-2JR

Telegraph  |  05 February 2010

BBC accused of ‘promoting euthanasia by ignoring rights of disabled’

The BBC has been accused of promoting euthanasia by a cross-party group of MPs who called on ministers to threaten to cut off the supply of public money to the broadcaster.

A Commons motion highlighted the high profile given by the BBC to author Sir Terry Pratchett’s speech in favour of assisted suicide Photo: BBC

A Commons motion said the Corporation ”misused public funds” in its coverage of the issue, highlighting the high profile given to author Sir Terry Pratchett’s speech this week in favour of assisted suicide.

The motion claimed the BBC ”ignored the rights of the disabled” and had used drama as well as news to promote its pro-euthanasia stance.

Tory Ann Winterton (Congleton) has the support of one Tory and four Labour MPs for her early day motion…

Read on here Telegraph 

Guardian  |  4 February 2010

‘Kay Gilderdale should have been investigated’

In cases of assisted dying, anyone involved should have to account for their actions, says Phil Friend

Like a lot of other people I watched Panorama on Monday evening which focused on the subject of assisted dying. The central issue concerned whether Kay Gilderdale should have been prosecuted for assisting her daughter Lynn to die…

Read on here Guardian

PM’s response to AA and DLA Petition

1] PM’s response to AA and DLA Petition

2] Update from Benefit and Work’s Steve Donnison

Shortlink: http://wp.me/p5foE-2J0

This petition is now closed, as its deadline has passed.

http://petitions.number10.gov.uk/AttendanceA/

We the undersigned petition the Prime Minister to recognise the vital support that Attendance Allowance (AA) and Disability Living Allowance (DLA) provide to disabled people, and to ensure that these benefits are secured and are not removed as part of any future reform of the social care system in England.

Submitted by Peter Hand of Mencap – Deadline to sign up by: 07 December 2009 – Signatures: 23,707

http://www.number10.gov.uk/Page22353

Read the Government’s response

The Government understands that disability benefits provide an important means of financial support for severely disabled people who have extra costs as a result of their disabilities.

We also know that the care and support system that we have at the moment is not sustainable. By 2026, population estimates show that there will be double the number of people aged over 85 that there are now, and the number of people over 100 will have quadrupled. In 20 years’ time, we expect over 1.7 million more adults to have a need for care and support. We need to reform the care and support system radically to meet these future pressures.

In a reformed social care and support system, which offers more support to older and disabled people, we are looking to see if bringing together the new care and support system and some disability benefits into a single system may be a better way of providing support. However, we will only do this if we can better support the needs of older and disabled people, and we have ruled out bringing Disability Living Allowance for those under the age of 65 into the National Care Service.

Whatever the outcome of the consultation, we want to ensure that people receiving any of the relevant benefits at the time of reform will continue to receive the same level of cash support under our new and better care and support system.

If consultation shows that integrating some disability benefits into a simplified system is the right approach, we would want to ensure that the future care and support system retains and builds on the main advantages of the current disability benefits system. We know that disability benefits are popular because they provide a universal entitlement which does not depend on where a person lives, they provide a cash budget which can be spent on the services someone wants, and people often use them in ways that help them to stay independent and well for longer.

These three aspects – a universal system that is consistent across the country, flexible methods of payment through personal budgets and investment in prevention – will all be important components of the new system.

 

2] Update from Benefit and Work’s Steve Donnison

From Steve Donnison  |  Benefits and Work

DLA short form con update plus keeping ESA after losing appeal

04 February 2010

Dear Subscriber,

In this edition we have an update on the four page DLA renewal form – and we’re definitely advising people to treat it with enormous caution, given the feedback we’ve had from members.

Moving on to employment and support allowance (ESA), the latest statistics for both claims and appeals make very dismal reading indeed, with almost 7 out of ten claimants who have an assessment being found fit for work and fewer than 4 out of ten winning their appeals.

Not that losing your appeal necessarily means you have to stop claiming ESA. The confusing mess that is the ESA regulations, combined with the increasing delays in administration, is allowing some claimants to claim ESA again immediately after losing their appeal against being found fit for work. This is happening even though there has been no change in their condition, as we explain.

The DWP are taking advantage of the backlog in administering ESA wherever they can, however. We have a copy of guidance issued to decision makers this week to ensure that, where there has been a delay in medical assessments, the DWP pockets cash that should be being paid to claimants.

This week we also get our first look at the new ‘fit notes’ that will replace sick notes from April. We were left completely under whelmed by the idea that a few tick boxes are sufficient to ensure a gradual and safe return to work for people with serious health conditions.

Equally under whelming was the discovery that RNID are quietly proposing to axe the casework team that, over the years, has built up unique expertise in helping deaf claimants get their benefits. RNID’s reason for doing so sounds like the kind of corporate-speak that used to be the sole preserve of the private sector, but is gradually taking hold in parts of the voluntary sector.

On a cheerier note, we have the tale of the claimant so fed up with what he regards as the poor standard of medical assessments that he flatly refused to have another one if he couldn’t tape it. In the end he got his medical cancelled and his incapacity benefit renewed. Please don’t try this yourselves – you’ll almost certainly end up losing your benefit.

But isn’t it comforting to know that, at least occasionally, utterly foolhardy stubbornness can face down even Atos Healthcare and the DWP?

Good luck,

Steve Donnison

EMPLOYMENT AND SUPPORT ALLOWANCE TRAINING
Has your agency had employment and support allowance training yet? With the transfer of incapacity benefit claimants beginning in pilot form in October 2010 and starting in earnest in February 2011, even if few of your clients have been affected yet, many are likely to be in the future. Find out more about our employment and support allowance training

http://www.benefitsandwork.co.uk/training/courses

FREE ARTICLES – BUT YOU NEED TO BE REGISTERED
These articles can be read by anyone, but you do need to register first. Find out more about the free stuff available when you register:

http://www.benefitsandwork.co.uk/free-stuff

RNID to axe benefits casework team
http://www.benefitsandwork.co.uk/news/latest-news/1184-rnid-to-axe-benefits-casework-team

RNID is proposing to axe its highly valued casework team without seeking the views of service users, possibly within three months.

Almost 7 out of 10 refused ESA
http://www.benefitsandwork.co.uk/news/latest-news/1179-almost-7-out-of-10-refused-esa

As more statistics emerge about the work capability assessment (WCA) for ESA, the picture is becoming increasingly grim for claimants.

Fit notes are coming
http://www.benefitsandwork.co.uk/news/latest-news/1178-fit-notes-are-coming

From April 6th 2010 GPs will no longer issue sick notes to their patients. Instead, they will issue a ‘statement of fitness for work’ or ‘fit note’ as it will generally be known.

ESA return to work rip-off
http://www.benefitsandwork.co.uk/news/latest-news/1177-esa-return-to-work-rip-off

The DWP have issued instructions to decision makers to ensure that claimants lose out because of long delays in arranging employment and support allowance medicals.

SUBSCRIBING MEMBERS ONLY
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Find out how to subscribe to Benefits and Work and get instant access to all our downloadable claims and appeals guides, DWP materials, members news items and more.

www.benefitsandwork.co.uk/join-us

Staying on ESA forever, even after losing an appeal
http://www.benefitsandwork.co.uk/news/members-only-news/1183-staying-on-esa-forever-even-after-losing-an-appeal

Confused regulations combined with the increasing delays in the benefits system mean that it may be possible for claimants to remain on the assessment phase rate of ESA indefinitely, even after losing one or more appeals

DLA short form con update
http://www.benefitsandwork.co.uk/news/members-only-news/1182-dla-short-form-con-update

Fears that the new DLA short form is simply a way of preventing claimants giving evidence appear to be justified, as we hear from more members who have completed it.

Claimant refuses untaped IB medical – and wins
http://www.benefitsandwork.co.uk/news/members-only-news/1181-claimant-refuses-untaped-ib-medical-and-wins

A Benefits and Work member who refused to a attend a medical for incapacity benefit unless he was allowed to record it had his medical cancelled and has been found incapable of work.

PLEASE NOTE: THE REPLY TO ADDRESS ON THIS NEWSLETTER JUST COLLECTS HUNDREDS OF AUTOREPLIES.

If you have problems accessing the site or logging in, visit the Help with the site page, where you can find possible solutions and contact details for our technical support.
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(c) 2010 Steve Donnison. You are welcome to reproduce this newsletter on your website or blog, provided you do so in full.

Kay (Kathleen) Gilderdale ME case: Media coverage 1 February 10

Kay (Kathleen) Gilderdale ME case: Media coverage 1 February 10

Shortlink: http://wp.me/p5foE-2IG

freefoto

Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and the legal case are identified by the Freefoto.com image above and archived in Categories under Gilderdale case. ME agenda is unable to respond to enquiries in connection with the case from members of the public or the media.

Guardian  |  31 January 2010

A matter of life, death and assisted dying

After two high-profile court cases reignited the arguments around assisted deaths last week, Observer policy editor Anushka Asthana brought together five of the most outspoken figures in this controversial debate and put to them the most challenging questions raised by these cases. You can also listen to the debate online

Anushka Asthana
The Observer, Sunday 31 January 2010

Independent.ie  |  1 February 2010  |  Letters

Death highlights distress of ME

The tragic case of Lynn Gilderdale and her Irish-born mother Kay, who was recently acquitted of her attempted murder in 2008 (”Selfless’ mother cleared of trying to kill ill daughter’, Irish Independent, January 26) has had at least one positive effect: it has highlighted how debilitating Myalgic Encephalomyelitis (ME) can be.

However, it would be tragic if other ME patients (particularly the newly diagnosed) considered suicide.

As someone who has been housebound, nearly bedbound, for 15 years with severe ME, I can say that one can have a meaningful life if one gets the proper support. And there is reason for optimism now more than ever that research breakthroughs will translate to treatments in the coming years.

Tom Kindlon
Dublin 15

Irish Independent

There will be a ‘Panorama’ special featuring the Kay Gilderdale case today, Monday, 1 February.

Panorama

http://www.bbc.co.uk/programmes/b00qs930

I Helped My Daughter Die

Broadcasts

BBC One  |  Monday, 1 Feb 2010  20:30

Next on:  |  BBC News Channel  |  Thursday 4 Feb 2010  04:30

Synopsis

What drives a mother to help her child die? For almost a year, Panorama cameras have been following Kay Gilderdale – the woman at the centre of the recent Assisted Suicide trial – as she faced a possible life sentence over her part in the death of her daughter Lynn.

She talks exclusively to Jeremy Vine about the night she helped her bedridden daughter kill herself and explores whether the law should be changed with those on both sides of the debate, including Debbie Purdey and Baroness Campbell.

Gilderdale ME legal case: Media coverage 26 January

Gilderdale ME legal case: Media coverage 26 January

Shortlink: http://wp.me/p5foE-2Gz

It is understood that the case will feature in Panorama on Monday 01 February 2010.

freefoto
Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and the legal case are identified by the Freefoto.com image above and are archived in Categories under Gilderdale case

ME agenda is not able to respond to enquiries in connection with the case from members of the public or the media.

Independent  |  26 January 2010

Prosecuting suicide-death mother Kay Gilderdale ‘in public interest’

 

Times  |  26 January 2010

The entire front page of today’s Times is devoted to the Gilderdale case with a double page spread on pages 7 and 8.

Video on this Times page

Jeremy Vine  Radio 2

BBC Northampton

Humberside Radio

Times  |  26 January 2010

http://www.timesonline.co.uk/tol/news/uk/crime/article7002405.ece

26 January 2010

Devoted mother Kay Gilderdale should never have been prosecuted, says judge

A High Court judge has criticised the Director of Public Prosecutions for personally pursuing an attempted murder charge against a “selfless and devoted” mother who helped her acutely ill daughter fulfil her wish to die.

As Kay Gilderdale, pictured right with her daughter, walked free from court yesterday after being cleared unanimously of attempted murder, the trial judge, Mr Justice Bean, repeatedly questioned whether the emotive case had been in the public interest.

Last night, the 55-year-old mother of two spoke for the first time of how her heart had been “ripped apart” between her maternal instinct to save her daughter Lynn, 31, and respect her repeated pleas for help to end 17 years of suffering since she contracted ME.

The former nurse had admitted assisting her daughter’s suicide by giving her 420mg of morphine to inject herself in December 2008.

Related Links

‘I’ve had enough of being in so much pain’
New calls to clarify assisted dying law
ME: a debilitating illness with no known cure

She was charged with attempted murder after it emerged that she had given Miss Gilderdale medicine to ease her suffering in her final hours.

Only now can it be revealed that during initial legal arguments Judge Richard Brown, who presided over the case before trial, invited the CPS to drop the attempted murder charge.

Referring to her guilty plea to assisted suicide, he asked: “Wouldn’t it be better to accept it now rather than let this defendant get tangled up in a messy trial for the sake of some legal mumbo jumbo?”

The case was reviewed by Keir Starmer, the DPP, after he published guidelines on assisted suicide last September, but the attempted murder charge was not dropped.

Mr Justice Bean’s decision to question Mr Starmer’s role and that of the Crown Prosecution Service will reignite the debate on mercy killings.

The judge thanked the jury for their “common sense, decency and humanity” in choosing to acquit Mrs Gilderdale. Sources close to the family suggested that her trial was used as a test case to sound out public opinion. The CPS remained adamant that its decision to pursue the case was right, saying that the law did not allow mercy killings.

Mrs Gilderdale did not give evidence during the trial. Afterwards, she described the torment of trying to come to terms with a loved one’s repeated pleas to be allowed to die.

“You’re torn apart because you have one part of you wanting to respect your daughter’s wishes and understanding everything they have been through, and you have got your heart being ripped out at the same time because all you want to do is to get them better and keep them alive,” Mrs Gilderdale told the BBC Panorama programme.

“It has been the hardest thing I have ever experienced and will ever experience in my whole life, no matter what happens to me. There will be nothing that will compare to the pain and heartbreak of watching my beautiful daughter leave this world.”

The public gallery at Lewes Crown Court erupted into applause as the jury unanimously cleared Mrs Gilderdale of attempted murder after deliberating for less than two hours following a week-long trial.

Before sentencing her for assisting a suicide, the judge asked who decided to continue with the attempted murder charge. Sally Howes, QC, for the prosecution, replied: “Ultimately the decision was taken by the DPP in consultation in November last year.”

Asked whether it was thought to be in the public interest, she replied: “It was thought at the highest level that this was a case that should be canvassed before the jury.”

The judge released Mrs Gilderdale with a one-year conditional discharge. She replied quietly: “Thank you. Thank you very much.”

Outside the court, Stephen Gilderdale 35, said that he was proud of his mother for her “selfless actions”.

The jury had been visibly moved by the account of two parents struggling to come to terms with the realisation that their daughter had lost the will to fight a debilitating condition.

Richard Gilderdale told how his daughter wanted to end her “wretched existence”. On December 2, 2008, he had sent his usual evening text messages to his ex-wife and daughter to see how a new treatment was going. In his final message to his daughter, he said: “Good night. Sleep well. I love you.”

In the early hours of the following day, Miss Gilderdale summoned her mother to her bedroom and pleaded with her to help her kill herself.

http://www.timesonline.co.uk/tol/life_and_style/health/article7002306.ece

Lynn Gilderdale’s moving account of why she decided to end her life

OK guys, I have something really important to say. I want to talk about something extremely private and personal to share with you, my closest friends. After many years of serious deliberation, I have pretty much come to a huge decision. I hope you will try to understand my reasons for this decision and even if you don’t personally agree with it I hope you won’t judge me too harshly.

I don’t know how to begin. I am just going to come out with it. Here goes, deep breaths. Basically I think some of you have known for a while I have had enough of this miserable excuse for a life, of merely semi-existing for the last 16½ years. I have had enough and I want to die. This is no whim and certainly not just because of the reactive depression diagnosed a few months ago. I am no longer on antidepressants because they weren’t doing anything for me.

I really, really, really want to die and have had enough of being so sick and in so much pain every second of everyday and, basically, one serious health crisis after another. I am tired, so very, very tired and I just don’t think I can keep hanging on for that elusive illness-free existence.

I can’t keep hanging for that ever diminishing non-existent hope that one day I will be well again. This is something I have thought long and hard about, and more than once about. I’m sure it’s what I want. I have discussed and continued to discuss with my parents at great length. Although they obviously desperately don’t want me to go, they can see I have just had enough and understand why I can’t keep hanging on for much longer.

Related Links

Mother not guilty of attempt to murder ME daughter
ME: a debilitating illness with no known cure
ME mother ‘should never have been prosecuted’

A few months ago, some pretty extreme situations arose. Something happened here and I was finally tipped over the edge. I tried to end my life by sticking a syringe straight down into my veins and simultaneously a syringe full of air. This was not a desperate cry for help, it was a serious attempt to end my life. It should have been enough to kill a grown man. No, it didn’t finish me off. Eventually, I have become tolerant to morphine after being on it for years.

All the overdose did was render me unconscious for a few hours until I finally felt Dad shaking me awake.

That was really the first time my parents knew how depressed I was. I had managed to hide it by using my time-worn, fake-happy face, when they are around. I begged my parents not to tell the doctor what I had done. But, I was put on antidepressants.

Drugs have stopped me from crying all the time, but it hasn’t stopped me from my desire not be on this planet any more. Nothing can change my mind. I have since promised I won’t try to kill myself again in secret.

Injecting morphine is the only reliable suicide method I have access to myself. There’s no other possible way to do it on my own.

Dad, he has always hated me talking about it in the past. He was quite heartbroken. He said: “I understand. But what would I do without my best mate?” This made me sob even harder than I already had.

After talking to me for ages, they both were extremely reluctant but agreed that if something life-threatening did happen to me they promised that they would inform the doctors and nurses that I didn’t want to be revived in any circumstances. I refuse to go back for more treatment.

I know there is a slim chance that I could fully recover and live a relatively normal life but even if I wake up tomorrow, I still won’t be able to live the life I dreamt about living.

My ovaries have packed up — I won’t be able to have children, my all time favourite wish.

I am already 31 years old. By the time I have found the man I want to have children with I will be far past the age. I cannot see myself ever being well enough to do any of this.

Also my bones are so osteoporotic that every cough and sneeze could cause a fracture. How can I live the life I have dreamed of; swimming, sailing, running, cycling. The kind of life I had before it was taken away from me at the age of 14.

My body is tired and my spirit is broken. I have had enough. Can you understand that? I hope you can, I really, really do.

In addition to not wanting any life-saving treatment, if I am ever presented with an opportunity to leave this world, I have to admit I will grab it with both hands.

I understand people think I am just depressed or worse — suicide is far from easy in my opinion and recent experience — or they think it is ridiculous of thinking of suicide when there is still a chance I could recover.

I am also painfully aware that I have a couple of special friends with their own terrible diseases.

I was 30 last year, the desire to leave all this pain and sadness behind me has nothing but increased. I want to die so, so much. Mum and I have probably spent hours on and off discussing everything, despite her doing her best to make me see things differently. My resolve to leave this life has done nothing but intensify.

I am sorry. I know this may be a shock to some of you. Try to put yourself in my situation. Read all the newspaper articles online. This is only a tiny part of what I have been through in the past 16 years.

To see what every second of life in intense pain, feeling permanently and extremely ill, not just lying in a bed resting but 100 per cent reliance on others to care for my basic needs. I have survived because of tubes of medicine, pumps and drugs. Without all this modern technology I wouldn’t be here.

Imagine you lived in one small room, in one single bed for 16 years since the age of 14. Imagine being 30 years old and never having kissed someone properly. Yep, I am that pathetic 30-year-old virgin that everyone ridicules.

Imagine having the painful bones of a 100-year-old woman unable to move without risking a fracture. Imagine being unable to get the spinning thoughts out of your head, other than by slowly typing e-mails.

Imagine not being able to turn yourself over in bed or move your legs.

Imagine having to use a bed pan lying down and having your mother wipe your bum for you.

Imagine having never been in a pub or club at 31 years old. Imagine never having been able to fulfil one thing above all else — that thing that should be a right for all young women, the right to have a young child. I know some women are unable to, but it doesn’t stop my heart from aching and the need to hold my own baby.

Imagine being imprisoned inside the miserable existence that is your life.

I don’t have to imagine of that. My body and mind is broken. I am so desperate to end the never-ending carousel of pain and sickness and suffering. I love my family. I have nothing left and I am spent.

How are Mum and Dad coping with all this? They are utterly, utterly heartbroken, naturally. Although I fear they won’t get over losing me and they don’t want me to go, and despite all the pain they must be in every time I discuss this whole thing, they must understand why I’ve had enough of this life and can’t keep hanging on. They both said they would either die or feel the same. I am so lucky to have incredible parents.

I desperately want to die. Mum and Dad know I have made up my mind.

They have made sure repeatedly that this is what I truly want. And now I’m not going to resist temptation if a way of ending my life falls into my lap.

Even though I can’t imagine how hard this must be for them, obviously they won’t want to lose me but they can’t bear for me to suffer any more than I have — that’s true unconditional love. I will never be able to thank them for putting my needs above theirs. However sad it is, it’s going to be my time to go very soon.

November 2008: I am afraid I can’t lie. I still do crave suicide with every fibre of my being. I promised my parents that I won’t attempt to do it in secret again. If the chance falls into my lap I will grab it with both hands. Mum regularly goes through everything with me. I never waver, I just become more and more sure as time passes. I have always stated that if I was unable to make a decision myself the power goes jointly to my parents. I trust them implicitly with my life and death. I know they won’t do the selfish thing in keeping me here purely for themselves.

http://business.timesonline.co.uk/tol/business/law/article7002006.ece

Gilderdale case prompts fresh calls to clarify the law on assisted dying

Frances Gibb, Legal Editor

One devoted mother who helps her sick daughter to end her life with tablets and morphine walks free from court with a suspended sentence.

Another is jailed for murder, to serve a minimum of nine years, after injecting her brain-damaged son with a lethal dose of heroin.

The two contrasting cases have reignited the debate over “right to die” and whether those who assist a loved one to end their suffering should be subject to criminal law.

Both involved a loving parent who could not bear to see a child suffer. Both, therefore, were acts of mercy. But there were key differences: Frances Inglis’s son, Thomas, 22, who had brain damage, had never indicated an intention to die. His mother believed him to be in pain and could not accept an encouraging medical prognosis.

Kay Gilderdale’s daughter, Lynn, 31, had attempted suicide. She had considered it over time and contemplated going to the Dignitas clinic in Switzerland. When a first attempt at suicide failed, her mother set about trying to help her to end her life.

Last July Keir Starmer, QC, Director of Public Prosecutions, outlined 16 “public interest factors” in favour of a prosecution and 13 factors against taking legal action in order to bring clarity to existing assisted suicide legislation.

Mrs Gilderdale was charged not just with attempted assisted suicide but also with attempted murder. A spokesman for the Crown Prosecution Service said that this was because the evidence suggested that her daughter may not have died from an assisted suicide. “It was not clear cut: there was a sequence of events and the toxicologist could not prove which of these stages resulted in death,” he said.

The case exposed the acute difficulties for prosecutors, judges and juries alike, and adds to the pressure for greater clarity in the law.

Sarah Wootton, chief executive of Dignity in Dying, said: “Ultimately, the Government needs to review the law in this area. As this case highlights, at present the law is a mess.”

However, Peter Saunders, director of Care Not Killing, said that the law acted as a powerful deterrent to protect vulnerable people from exploitation and abuse.

Judges should have a wide discretion to temper justice with mercy. Then they can show compassion in hard cases without giving a green light to murder.

BBC News

http://news.bbc.co.uk/1/hi/uk/8480039.stm

Lynn Gilderdale ‘mercy killing’ verdict leads papers

The acquittal of the Sussex nurse Kay Gilderdale – who was accused of murdering her severely ill daughter Lynn – is the lead in several papers.

A judge’s criticism of prosecutors for pursuing the case is the Times’ focus .

It also carries Lynn’s diary entry , in which she says she has “had enough of being so sick and in so much pain”.

The Daily Mail says the case was in “stark contrast” to that of Frances Inglis, jailed for fatally giving her son heroin – as Lynn wanted to die.

Guardian

Independent

The Scotsman

London Standard

Telegraph

Lynn Gilderdale: how a 14-year-old was condemned to a life lived from a bed

At the age of 14, Lynn Gilderdale was the picture of health. Sporty, athletic, she excelled at ballet, pursued her love of horses with vigour and was an accomplished musician.

By Caroline Gammell Published: 7:00AM GMT 26 Jan 2010

Gilderdale on the Isle of Wight, aged 12 Photo: CAIRNS

She swam, she cycled, she played the clarinet and, like a typical teenager, enjoyed spending time with her friends.

But in November 1991, that life came shuddering to an end.

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Kay Gilderdale: assisted suicide, mercy killing and the law
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More research is needed to reassure parents about vaccines

She came home from Uplands School in Wadhurst, East Sussex, after a fairly ordinary day, which included a routine inoculation against tuberculosis, and felt unwell.

She never recovered.

Flu was followed by bronchitis, tonsillitis and glandular fever and within three months, her life had changed beyond all recognition.

The teenager lay confined to her bedroom, ME had left her unable to move her legs, swallow or eat. At her most severely ill, she could recognise no one.

She lost the power of speech and had to develop a sign language with her parents that they alone understood.

Her life became ruled by the tubes running down her nose, into her chest and inner thigh, the tubes that fed her and that were a constant reminder that she would never again live a normal life.

Her dreams of returning to the sport she loved, of kissing boys, even of being a mother were crushed one by one. Exchanged for a life reliant on a cocktail of drugs to dull her suffering. It was in her own words: “a miserable excuse for a life”.

At just 20 years old she went through the menopause further eroding her health and her bones became brittle and vulnerable to fracture.

Weeks of suffering turned to months turned to years, and her hopes that she would one day get better, that there would be a cure, were ground down by endless hospital visits and fitful sleep.

But as Miss Gilderdale steadily lost all belief that she would ever get better, there was one person constantly by her side.

At the age of 37, her mother Kay gave up all semblance of a normal life – her work in accounting, holidays and friends – to care round the clock for her daughter.

In 2002, her marriage to Miss Gilderdale’s father Richard collapsed after nearly 30 years, although he remained devoted to his daughter and on friendly terms with his former wife.

For nearly two decades, mother and daughter remained cocooned in their unassuming brick bungalow in the small village of Stonegate, East Sussex.

Visitors – save that of her father and her older brother Stephen – were rare and, in any event, unwelcome because of the noise and potential infection they could bring.

Every morning, her Irish-born mother greeted her in hushed tones, keeping the cotton curtains of her bedroom drawn, regardless of the weather outside because her daughter’s condition meant she could tolerate neither noise nor light.

Resting on a sheepskin rug spread over her sheets to try and prevent bedsores, she would call to her mother for her every need. She required help with the simplest of tasks, such as wanting to turn over in her own bed.

A trained auxiliary nurse, Mrs Gilderdale would come swiftly, responding to her daughter’s voice calling to her from the intercom set up between the bedroom and the sitting room.

They had set up the system to make her daughter feel part of the house. The four walls of her bedroom, cluttered with medical paraphernalia to keep her alive and soft toys to lift her spirits, was her only domain.

Her one concession to the outside world was her computer, with a keyboard small enough to rest on her legs and allow her to communicate with friends.

These were not conventional friends. Most of them she had never met but their lives were all ruined by illness as hers was and as part of an online community, they shared their suffering and found comfort with each other. It was to these people that she revealed her darkest thoughts in an online journal.

But the computer offered solace and happiness as well. She used it to buy presents for her virtual friends as well as family.

Shortly before she died, her father helped her book tickets to the musical Oliver! and a night in a hotel in London for her mother. It was her way of saying thank you for all she had done.

Miss Gilderdale knew only two other environments – the inside of an ambulance and hospital, where she would end up most winters because she was so prone to infection.

During her final hospital visit, she picked up not one but four infections, including one which led to the indignity of being forced to use a bedpan for hours at a time.

It was this constant illness that made life so intolerable. Miss Gilderdale decided she wanted to die and drew up a living will in which she said she feared “degeneration and indignity more than death”.

An attempt to take her own life in 2007 failed, as the morphine she injected was not enough. Her father found her, nearly unconscious, and shook her awake.

She talked to her parents about suicide and what it would mean but it hurt her. Talking to her father, a retired police officer with Sussex Constabulary, about ending her life made her sob. He told her he didn’t want to lose her. But they understood her depths of despair.

Mr Gilderdale, who broke down in tears during his time in the witness box, spoke fondly of his daughter’s good looks, her long dark hair framing her fragile, pale face. But even that had been taken away from her in the last months of her life as her face began to swell.

On the morning of December 3, 2008, she decided she had had enough. Dressed in blue and white checked pyjamas, she called to her mother at 1.45am and told her she could not go on. Mrs Gilderdale tried to persuade her daughter otherwise but failed and at 3am she gave her daughter two large doses of morphine, with which she injected herself.

Miss Gilderdale thought the drug would bring her peace.

For her mother, the ordeal which would see her in court 13 months later, had only just begun. Over the next 30 hours, she neither slept nor ate, tending to her daughter as she clung on to life.

Scouring the internet for information, she gave Miss Gilderdale sleeping pills, antidepressants and further doses of morphine to try and make her comfortable. By 7.10am on December 4, her daughter was dead, aged 31.

She had kept everyone away from the house and when her daughter finally slipped away, an exhausted Mrs Gilderdale finally contacted the world outside.

She sent a text to Lynn’s father. It read: “Please can you come now. Be careful. Don’t rush.”

Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and the legal case are identified by the Freefoto.com image and are archived in Categories under Gilderdale case

ME Association: Board of Trustees meetings: 18 and 19 January 2010

ME Association: Board of Trustees meetings: 18 and 19 January 2010

Shortlink: http://wp.me/p5foE-2FU

MAY BE REPOSTED

This is a summary of key points to emerge from two meetings of The ME Association Board of Trustees.

These meetings took place at our Head Office in Buckingham on Monday afternoon, 18 January 2010 and on Tuesday morning, 19 January.

Informal discussions also took place on a number of issues on the Monday evening.

Please note that this is a summary of the two Board meetings – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman, who joined by telephone link up
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman
Janet Thomas (JT)

MEA Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:

Rick Osman (RO)

FINANCES, STAFF AND PREMISES

ED updated trustees on the current financial situation.

Trustees discussed the monthly management accounts for the period up to the end of November 2009. Despite a drop in some areas of income during the past few months, unrestricted donations in particular, the overall income for general funds continues to remain roughly in line with expenditure over the accounting period covered so far in 2009. Membership income is running slightly ahead of the same period in 2008 – which reflects a steady growth in new members joining the MEA throughout the year – as is income from fundraising events.

Trustees discussed some interest gaining options for the business and Ramsay Research Fund deposit accounts that are held in reserve. Continue reading

Benefits and Work: November and December 09 updates

Benefits and Work: November and December 09 updates

Shortlink: http://wp.me/p5foE-2tg

From Benefits and Work’s Steve Donninson:

27 November 2009

New DLA form con trick

In this newsletter we warn about the possible dangers of a seductively short new DLA renewal claim form which has the potential to wipe out your entire award in a couple of ticks. Is it just a DWP con trick?

On a cheerier note, we look at how some people manage to get many thousands of pounds from the DWP as compensation for poor and insulting treatment. Persistence, it seems, does sometimes pay.

We also have the bizarre news that within days of us ending our 100 day campaign to save DLA and AA it was taken up by…the Conservative party. It’s true, of course that it was the Tories who introduced DLA in the first place, but somehow we never expected to find ourselves becoming the unofficial Conservative party think tank.

Not entirely unconnected with this news is the fact that the Daily Mail has suddenly begun writing in defence of DLA and AA claimants – so long as they’re over 65, that is.

Elsewhere, Holiday Whitehead, our resident barrister, has been answering some of your queries about employing carers following our article last month about a disabled employer’s shock £35,000 tax bill.

Finally, we have another shot of good news from happy members, including people who have successfully appealed their ESA refusals. We particularly liked the tale of one of our members who was refused help from a CAB with her DLA challenge on the grounds that – thanks to Benefits and Work – she knew more than they did!

Good luck,

Steve Donnison

Tories launch save DLA and AA campaign
http://www.benefitsandwork.co.uk/news/latest-news/1138-tories-launch-save-dla-and-aa-campaign

 The Conservatives have launched a save DLA and AA campaign within days of the Benefits and Work campaign ending, leading to labour accusations of ‘scaremongering’ and ‘gutter politics’.

I got full mobility and personal care!
http://www.benefitsandwork.co.uk/news/latest-news/1137-i-got-full-mobility-and-personal-care

More feedback from happy members, including successful ESA claims and appeals and DLA claims.

Tabloid support for DLA and AA campaign
http://www.benefitsandwork.co.uk/news/latest-news/1135-tabloid-support-for-dla-and-aa-campaign

The Daily Mail has today published an article highlighting a ‘rebellion’ by Labour MPs ‘over plans to end benefits for needy pensioners’.

Benefits advice stopped
http://www.benefitsandwork.co.uk/news/latest-news/1136-benefits-advice-stopped

The Law Gazette is reporting that claimants needing benefits advice under the legal aid scheme are being turned away because legal aid funding has run out.

MEMBERS ONLY

Not yet a member?
Find out how to join Benefits and Work and get instant access to all our downloadable claims and appeals guides, DWP materials, members news items and more.
www.benefitsandwork.co.uk/join-us

How some claimants get thousands of £££ in DWP compensation
http://www.benefitsandwork.co.uk/news/members-only-news/1141-how-some-claimants-get-thousands-of-ppp-in-dwp-compensation

Many people are treated with outrageous unfairness by the DWP. Most just endure it, some complain and get nowhere, a tiny number get compensation of up to £10,000. How do they do it?.

Your queries about employing carers answered
http://www.benefitsandwork.co.uk/news/members-only-news/1140-your-queries-about-employing-carers-answered

Holiday Whitehead, our resident barrister, answers some of your queries about employing carers.

Is new DLA form a con trick?
http://www.benefitsandwork.co.uk/news/members-only-news/1139-is-new-dla-form-a-con-trick

A new short DLA renewal form appears to be being used to con claimants into not giving evidence about their condition and then refusing them an award, as a Benefits and Work member recently discovered to their cost. Astonishingly, a letter accompanying the form also advises people to fraudulently allow their current DLA claim to continue, even if they know that they are no longer entitled to any money.

If you have problems accessing the site or logging in, visit the Help with the site page, where you can find possible solutions and contact details for our technical support.

http://www.benefitsandwork.co.uk/help-with-the-site

(c) 2009 Steve Donnison. All rights reserved

——————-

04 December 2009

Are claimants at risk from assessment rip-off?

We hadn’t intended to bring out another newsletter until next week. But then a confidential letter detailing the new, increased, pay rates for Atos doctors and nurses came sliding from our fax machine and we decided we’d better publish it immediately.

So, in a brief newsletter, we reveal just how much those doctors and nurses are making from the taxpayer for creating ESA, DLA and IB medical reports. From what we’ve learnt, it seems safe to assume that Atos assessors won’t be shopping at Iceland this Christmas.

Harrods, on the other hand, may need to get in a few extra hampers.

In a not unrelated story we look at the problems caused by the DWP carrying out assessments much later than they should be. Are taxpayers being ripped-off and claimants being put at risk?

(The answer is ‘Yes!’ , in case you’re in any doubt).

We also have news of the early day motion in support of DLA and AA put forward by a liberal democrat MP. Do check to see if your MP has signed it and, if they haven’t, please do pursue them with infuriating persistence.

Finally, we have the tale of the claimant whose ESA has been stopped largely, it seems, because of his sad inability to travel back and forth through time at will.

Who’d have thought you’d need a tardis to be a successful ESA claimant?

Good luck,

Steve Donnison

91 MPs sign motion against DLA and AA cuts – has yours?
http://www.benefitsandwork.co.uk/news/latest-news/1142-91-mps-sign-motion-against-dla-and-aa-cuts-has-yours

91 MPs have so far signed an early day motion urging the government to drop proposals to cut disability living allowance and attendance allowance to fund the new National Care Service. Benefits and Work is urging members to put pressure on your own MP to sign, if they have not done so already.

ESA for Time Lords
http://www.benefitsandwork.co.uk/news/latest-news/1147-esa-for-time-lords

A Benefits and Work member has had their employment and support allowance suspended, seemingly on the grounds that they are unable to travel through time.

MEMBERS ONLY
Not yet a member?

Find out how to join Benefits and Work and get instant access to all our downloadable claims and appeals guides, DWP materials, members news items and more.
www.benefitsandwork.co.uk/join-us

Are claimants at risk from ESA assessment rip-off?
http://www.benefitsandwork.co.uk/news/members-only-news/1145-are-claimants-at-risk-from-esa-assessment-rip-off
Taxpayers are unfairly paying out many thousands of pounds, and claimants health may be being put at risk, due to employment and support allowance assessments being carried out scandalously late

Can Atos doctors earn more than Gordon Brown?
http://www.benefitsandwork.co.uk/news/members-only-news/1144-atos-doctors-can-earn-more-than-gordon-brown

Benefits and Work has obtained a copy of a confidential letter which reveals exactly how much Atos medical assessors receive in taxpayers’ cash for carrying out different types of benefits medicals. Astonishingly, some may at times be on a higher rate of pay than the prime minister.

If you have problems accessing the site or logging in, visit the Help with the site page, where you can find possible solutions and contact details for our technical support.
http://www.benefitsandwork.co.uk/help-with-the-site

(c) 2009 Steve Donnison. You are welcome to reproduce this newsletter (but not the articles it links to) on your website, forum or blog.

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04 December 2009

Apology and BBC Scotland

Just to say sorry, the members only links weren’t working when we sent out the newsletter this morning. We hope we have now fixed them. But if you still have problems, there’s a link to the latest articles in the Members Only news box at the bottom of the home page.

Also, we forgot to mention that BBC Scotland are very keen to talk to ESA claimants about the difficulties of claiming. More details in the forum at:

http://www.benefitsandwork.co.uk/forum?func=view&catid=10&id=13374

Alternatively, just in case we’re still having a bad link day, here’s what they’re asking:

Just how difficult is it to get ESA? BBC Scotland wants to know!

BBC Scotland are making a half hour radio documentary about the difficulties people face when trying to claim ESA – in particular with the health assessments carried out as part of the process. The programme aims to highlight problems with the new system and to investigate why people with genuine illnesses and disabilities are being declared fit to work.

If you’ve had a problem claiming ESA and are willing to talk about your experience, then please contact Kathy Long on 0141 422 7277 or Fiona Walker on 0141 422 7863. Or email: kathy.long@bbc.co.uk  / fiona.walker@bbc.co.uk

All information will be treated in confidence and contributions to the programme may be made anonymously if preferred.

Good luck,

Steve Donnison

If you have problems accessing the site or logging in, visit the Help with the site page, where you can find possible solutions and contact details for our technical support.
http://www.benefitsandwork.co.uk/help-with-the-site

(c) 2009 Steve Donnison. You are welcome to reproduce this newsletter (but not the articles it links to) on your website, forum or blog.