Category: Politics

Benefits reform: Media coverage BBC and Times

Benefits reform: Media coverage BBC and Times


Note: access to much of the content of the Times and Sunday Times online now requires a subscription.  Complementary access to subscription-only content is extended to those regsistered for the prepaid voucher scheme for print editions of the Times and Sunday Times who will need to register their Customer Priority Number on the site.

Times  |  Rosemary Bennett, Alice Fishburn  |  2 July 2010

Sick-note reforms ‘are in danger of collapse’

The academic behind a new benefits system designed to end Britain’s sick-note culture warns today of an impending crisis if radical changes are not made.

He says that ministers should postpone plans to move 2.5 million incapacity benefit claimants on to the new employment and support allowance (ESA) in October until serious errors have been rectified.

“To go ahead with these problems is not just ridiculous. It is, in fact, scary,” said Paul Gregg, Professor of Economics at the University of Bristol.

All new claimants have had to apply for ESA, which includes a tough medical test, since October 2008. But thousands of vulnerable people with terminal cancer, Parkinson’s disease, multiple sclerosis and clinical depression have had their applications rejected and told to look for work…

Full article here

Times  |  2 July 2010

Emma Webb

Emma Webb, 36, has worked all her life but in 2008 she became ill and her job in retail became a struggle.

She initially thought it was a bad back, caused by years of standing for long periods. Then she began to slur her words and a few months later could barely walk. Her doctor diagnosed ME…

Full article here

BBC News  |  28 June 2010

‘I’m worried about benefit cuts’, says ME sufferer

Andy Micklethwaite, 58, from Derbyshire, has been on incapacity benefit for about three years, but started suffering with ME in 1984.

He had worked for about 10 years in sales support for a firms supplying computer systems before being made redundant.

After that he said he had tried various jobs as his symptoms got worse – including setting up his own business, teaching people introductory computer courses at a local college and invigilating exams before the ME meant he had to stop working…

Read full article here

BBC News  |  Politics  |  28 June 2010

Q&A: Incapacity benefits explained

Ministers looking to make savings have set their sights on the bill for incapacity benefit – but how does the system work at present?

Some 2.6m people claim incapacity benefit, or its successor, the employment and support allowance, at an annual cost of about £12.5bn.

Chancellor George Osborne says that this amount could be cut, while protecting “those with genuine needs”.

So what are the basics?

What are the benefits…

Read full article

BBC News |  Business  |  22 June 2010

Budget: Radical shake-up of benefits to cut spending

The Budget means most claimants will lose money – but some are winners A raft of benefits have been cut or curbed as part of a radical shake up of the welfare system.

These changes are designed to save £11bn per year by the end of the parliamentary term.

That adds up to a quarter of the annual target of £40bn of spending cuts and tax rises by 2014-15…

Read full article here

Budget announces DLA reform

Budget announces DLA reform



Guardian  |  Comment is free  |  Anne Wollenberg  |  23 June 2010

Disability allowance exists for a reason

“The disability living allowance is not an unemployment benefit. Why target it to ‘reduce dependency and promote work’?”

There is a comment section, read full article here


Action for M.E.  |  22 June 2010

Budget 2010

Today’s budget announces DLA reform

Chancellor George Osborne’s first Budget has set out a five-year plan for the British economy.

Plans for spending reductions of £32 billion per year by 2014-15 include £11 billion of welfare reform savings, a two year freeze in public sector pay for those earning over £21,000 a year and an increase in the rate of Value Added Tax (VAT) to 20 per cent.

As part of the welfare reform measures, which will affect tax credits, housing benefit and disability benefits, the Treasury says: “The Government will reform the Disability Living Allowance (DLA) to ensure support is targeted on those with the highest medical need. The Government will introduce the use of objective medical assessments for all DLA claimants from 2013-14 to ensure payments are only made for as long as a claimant needs them.”

Action for M.E. will be responding to the budget shortly, so tell us: how will it impact on you, as a person with M.E. or their carer?

E-mail our Policy Officer, Tristana Rodriguez at or our InterAction team at  with your views.

Inaugural meeting of the APPG for ME: Wednesday 30th June

Inaugural meeting of the APPG for ME: Wednesday 30th June


Update: On Friday, 25 June, the ME Association announced a change of date.  Please note that the APPG on ME inaugural meeting is now scheduled for Wednesday, 7 July.

Change of date for APPG on ME reformation meeting – now July 7

“Unfortunately, the Westminster meeting to reform the All Party Parliamentary Group on ME has had to be moved forward a week – to Wednesday, July 7. On the bright side, this does mean that there is more time to encourage your own MP to attend.”

Action for M.E. and the ME Association have published the following information:

Help make sure the All-Party Parliamentary Group for ME reforms

Tuesday, 22 June 2010

The All Party Parliamentary Group for M.E. (Myalgic Encephalomyelitis) strives to support the improvement of health and social care of all people with M.E. in the UK. All APPGs were dissolved at the end of the last Parliament before the general election. Arrangements are being made to re-register this group as a matter of urgency.

An inaugural meeting of the APPG for ME will be held by David Amess MP on Wednesday 30th June, at Westminster.

The agenda will deal with appointment of office holders and members only and due to limitations of time and space it will not be possible to open the meeting to the public on this occasion. This is in order to ensure that the vital work required to re-register the APPG is carried out in a timely manner for the 13th July deadline.

It is vital that as many MPs as possible join the group as we need to identify at least 20 Parliamentarians to act as qualifying members. These must include at least ten who are not part of the government and of which at least six are members of the main opposition party i.e. Labour.

If you would like to help please send your local MP an email or letter asking them to join the APPG. There is a draft letter here to help get you started.

Open Word document here on ME Agenda: Example letter

or here on the ME Association’s website or here on Action for M.E.’s website

Dear __________________

As one of your constituents, I sincerely hope you will strongly support the interests of people with Myalgic Encephalomyelitis (M.E.), the long-term fluctuating illness also known as Chronic Fatigue Syndrome (CFS), which is sometimes diagnosed as Post Viral Fatigue Syndrome (PVFS).

M.E. affects 250,000 people in the UK and is recognised by the NHS and National Institute for Health and Clinical Excellence to be as disabling as multiple sclerosis, rheumatoid arthritis, congestive heart failure, and other chronic conditions yet it receives nowhere near the same degree of recognition or funding.

A very powerful way of demonstrating this to your constituents would be to join the All Party Parliamentary Group for M.E. and to help it to re-register in the new Parliament.

An inaugural election of officers at a meeting of the APPG for M.E. to be held by David Amess MP on Wednesday 30th June. This will not be a long affair but is a necessary preliminary to re-registration before the 13 July deadline.

I do hope that you will be able to attend but if this is not possible, could you please join the group anyway. We need to identify at least 20 Parliamentarians to act as “qualifying members” in order to remain on the approved list.

Yours sincerely


Ed: Note that this meeting is not a public meeting and the room number and time are not being publicised. If your MP expresses an interest in attending the inaugural meeting you may need to contact Action for ME’s Policy Officer, Tristana Rodriguez ( and ask for details of the meeting to be forwarded directly to your MP.  Alternatively, refer your MP to David Amess, MP, outgoing APPG for ME Treasurer, who is convening this inaugural meeting.

Minutes of previous APPG for ME Meetings and Legacy document

The APPG for ME website has PDF copies of Minutes of meetings going back to 31 January 2001 collated at:

APPG Legacy Paper 26.02.10


Clarification regarding membership of the APPG for ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group for ME.

None of the above are members of the APPG on ME.

In the case of Associate Parliamentary groups, applications for membership may be considered by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group for ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG for ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG for ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. […] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

At the time of publication, the House of Commons Session 2009-10, Register of All-Party Groups [As at 12 April 2010] can be accessed here:


The Nature of All-Party Groups
Purpose and Form of the ‘Register of All-Party Groups’
Purpose and Form of the ‘Approved List’ of Groups
Administration of the Register and Approved List

At the time of publication, the Registry entry for the outgoing APPG for ME group could be viewed here:

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” Action for M.E. and the ME Association are listed as jointly providing the secretariat to the Group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

In the past, AfME and the MEA have alternated the task of minute taking and the preparation and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and have been opened up to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties. 

They are also open to members of the ME community and their carers, who can and do regularly attend and contribute to these meetings. This has not always been the case and the presence of members of the public is at the discretion of the APPG chair and committee.

So none of the following five national registered membership ME patient organisations are members of the APPG for ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, have provide the secretariat function: AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group.

ME Research UK : a research organisation and registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

The names of ME patients and carers attending meetings are recorded in the minutes of meetings and their contributions to these meetings are minuted.

For the past couple of meetings, an official verbatim transcript has been prepared from an audio recording of the procedings and this has been published alongside briefer minutes. This parliamentary service has been funded by Action for M.E. and the ME Association.

It is not known whether transcripts will continue to be provided for the meetings of any new group that may be convened. It is unconfirmed whether minutes will be published for the inaugural meeting or whether representatives of the outgoing group’s secretariat will be present.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

A Guide to the Rules on All Party Groups can be downloaded here:

or opened here on ME agenda

APPG Groups Rules

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


From Carer Watch  |  15 June 2010

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.

EDM 128


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.


EDM 246


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)

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:

Benefits and Work: Tables turned – your chance to shop the DWP

Benefits and Work: Tables turned – your chance to shop the DWP


From Steve Donnison Benefits and Work

15 June 2010

Dear Subscriber,

Firstly an apology for the problems you may have had opening links in the last two newsletters – and a further apology in case it happens again this time. The links do all work, but something in the depths of the server stops working when many thousands of people visit at once.

We hope we’ve found the fault, but we have no way of knowing until the newsletter actually goes out. So, if the links don’t work right now, please do accept our apologies and call back later when the server has recovered itself.

In this newsletter we’re asking you to make sure the blame for much of the increase in the harassment of disabled people is placed where it belongs – at the door of the DWP and its ministers, with their constant campaign of vilification against sick and disabled claimants.

The Equalities and Human Rights Commission (EHRC) has begun an investigation into whether public bodies are fulfilling their legal obligations to prevent disabled people from being harassed. If you think the DWP are failing in this duty – and actually making things much worse – email EHRC and tell them so, your details will not be made public. Email:

And please, let other people know about this enquiry – the more people who contribute the harder it will be for the EHRC to ignore the DWP’s role in hate crimes. If you do contact EHRC, please consider posting something on our free blog to encourage others. There’s also more information and links on the same blog page at Tables turned – your chance to shop DWP and BBC.

Staying with the DWP, we have a mole’s eye view of the misery that employment and support allowance (ESA) is causing inside Jobcentre Plus and a leaked email that reveals that the DWP is in a panic because of the large numbers of GPs who are wilfully or incompetently failing to complete the new fit notes correctly. There is a question mark hanging over the legality of benefits decisions as a result and it’s a story that, until now, has been kept from the press and the public: Leaked email shows DWP fit notes panic (This article is members only)

We also have the first coalition statement on when current incapacity claimants are to be transferred to ESA: Transfer from IB to ESA: coalition timetable latest (This article is members only)

Plus a growing question mark over those four page DLA renewal forms that we’ve been warning members about. Why is it in the public interest for claimants to be kept in the dark about their future use? Read more in DLA short form – what are they hiding?

We also have a full list of DWP 0800 numbers that are free to call from most mobiles. Many thanks to the member who sent us the list, which they received in response to a Freedom of Information Act request: Full list of free to mobile DWP 0800 numbers

Finally, we’ve had lots of good news posts in the forum lately, below are links to some of them:

Success with DLA first time, A Big Thank You !!

ESA Success….YESSSS!

Another heartfelt THANKS to B&W

DLA tribunal success

Good News

Decision changed – appeal cancelled

ESA appeal

I do hope you find these posts cheering – if the server lets you open the links, that is. If it doesn’t please do call again later, we really are trying to get it permanently sorted.

Good luck,

Steve Donnison

(c) 2010 Steve Donnison. Benefits and Work Publishing Ltd. Company registration No. 5962666

You are welcome to reproduce this newsletter on your website or blog, provided you do so in full.

BBC News: “New benefit system labelled unfit”

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


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)

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”

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

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


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.

Benefits and Work: Huge new ESA guide plus Your future under the coalition

Benefits and Work: Huge new ESA guide plus Your future under the coalition


From Steve Donnison Benefits and Work

14 May 2010

Dear Subscriber,

This is the first ever Benefits and Work newsletter written without a Labour government in power.

In our blog we take a first look at the new secretary of state for work and pensions, Iain Duncan Smith: What future for claimants under coalition rule?

Unlike most of his predecessors in the job, IDS already knows a lot about benefits and has some radical ideas about how the system should be changed – unfortunately, these include the abolition of DLA. Whether he manages to persuade the coalition that his personal preferences should become government policy remains to be seen.

We’ve also taken a look at the first joint statement on benefits by the Tories and LibDems which concentrates, unsurprisingly, on getting claimants into paid employment: Coalition publishes first benefits statement

In the members area, we’ve published a major new employment and support allowance resource to add to the detailed, step-by-step guides already available on the site: Major new ESA resource to download

The 100+ page guide has been provided by Mark Perlic, freelance trainer and Senior Welfare Rights Officer at Wolverhampton City Council’s Welfare Rights Service. Members will be aware of the excellent guide to DLA caselaw which Mark provided us with back in February of this year.

The new guide is an extremely comprehensive training pack Mark has been using for ESA training days. It covers many of the areas that we don’t, such as:

national insurance contribution conditions;
calculating ESA awards;
ESA in youth;
ESA and other benefits;
case law relating to substantial risk

We’ve also updated all our own ESA guides and published the most recent copy of the ESA Handbook produced by the DWP. We’re leaving the old version on the site so that people can compare the two. If you spot any material changes please email us, preferably with page references.

As well as the ESA Handbook, we’ve also obtained copies of the confidential monthly DLA Decision Makers Exchanges from July to December 2009: Confidential decision makers DLA documents published

The editions cover a wide range of issues, including:

whether claiming carers allowance for another person may sometimes be incompatible with a person’s claim for DLA or AA;

why it is never appropriate for decision makers to refer to a “simple” main meal when considering the lower rate of the care component of DLA.

At the moment we have many unanswered questions about what life for claimants will be like under the coalition.

Will further compulsion be aimed at ESA claimants as well as JSA claimants?

Will the harsher ESA test approved by Yvette Cooper also get the go-ahead from her successor?

Will the first steps towards scrapping the entire benefits system and starting afresh be taken, as Iain Duncan Smith hopes?

Whatever the answers, you can count on discovering the truth, rather than spin, here at Benefits and Work.

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.

and from 17 May:

Apologies – we are now back online

17 May 2010

Dear Subscriber,

Unfortunately, when we sent the newsletter out on Friday, the site crashed beneath the weight of people all trying to download our new employment and support allowance guide at once.

We finally got the site up and running only to have it crash again for different reasons.

However, we think – hope – we’ve fixed it now. And because we received so many emails from people saying they couldn’t get any of the links to work, we decided the best solution was to reissue Friday’s newsletter, which you’ll find below.

For those of you who did, finally, manage to get the links in the last newsletter to function, we’ve got three new items for you to read.

The first is the news that a doctors union has warned GPs that they should not try to prevent patients from recording consultations, if they so wish: GPs can’t stop patients recording consultations

The second is the claim that the Youreable forum, which closed before Christmas, is set to reopen: Youreable to rise from the dead

And, finally, we have some cheery feedback from members, like this:

“I have subscribed to Benefits and work for the last 18 months and have just been awarded higher rate mobility and higher rate care. This is beyond my wildest dreams and is all down to the information you provide on your website. It is the best money that I have ever spent.”

Beyond my wildest dreams

Good luck,

Steve Donnison

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


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

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

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

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

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:

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

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

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

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.

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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.

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

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

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.


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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.

Report of Meeting of the All Party Parliamentary Group on ME by John Sayer


Update: A second report, in the form of a YouTube video, has also been published:

Dr Charles Shepherd’s unofficial summary of the 2 December APPG on ME meeting, published on behalf of the ME Association on 4 December, can be read here:

Summary of meeting of APPG on ME 2 December 2009:


Video Report on the UK Parliament All Party Group, APPG, on ME meeting of the 2nd of December

The APPG on ME met on the second of December this year to conclude the Inquiry the APPG has been conducting into publicly funded UK NHS health services for people with ME. APPGs are low level parliamentary committees made up of members of the elected House of Commons and the unelected second or upper tier of Parliament.

However, APPGs are not part of the structure of the UK Government and neither are they part of the official parliamentary committee structure for the scrutiny of government legislation or government departments like the Health Select Committee which scrutinises the Secretary of State for Health and their junior ministerial colleges in order to have parliamentary oversight of the Department of Health.

The main purpose of the APPG on ME’s Inquiry was to interest the Health Select Committee in setting up a similar and more powerful and well resourced Inquiry into NHS services for people with ME. This appears to be a very unlikely outcome given the way the APPG’s Inquiry was conducted and the way in which the Inquiry was concluded.

The meeting of the APPG held on 2/12/09 has proved to be a particularly controversial one and there have been a number of rumours running around the Internet about what took place. The first of a series of three videos gives a factual account of what took place at this meeting with comment and analysis. The remaining videos set out the background to the Inquiry from its inception through to the way in which the Inquiry was carried out.

I would therefore recommend that anyone who has seen the various accounts of the proceedings of the 2nd of December meeting on the Internet might like to watch these videos in order to place the events of the 2nd of December meeting in wider context of the APPG Inquiry as a whole, and then judge matters accordingly.

The report on the meeting of the 2nd of December APPG meeting can be viewed on the You Tube Channel action4change4me at :-

The background to the APPG Inquiry can be found from a previous video report of the 1st of April 2009 APPG meeting which deals with the setting up and launching of the Inquiry which can be viewed through the You Tube Channel action4change4me at :-

There is another video report on the APPG on ME meeting of the 8th of October 2008 at which the APPG first decides to initiate the Inquiry, which can be viewed on the You Tube Channel GBC One here :-

Ciaran Farrell

15 December 2009


Meeting of the All Party Parliamentary Group on M.E.
12 December 2009

Report by John Sayer (Chair M.E. Support-Norfolk)

This was the first APPGME meeting I’d ever been able to attend (thanks to Dan, of M.E. Support-Norfolk, driving us down to London) and I’ve now seen for myself how the APPGME operates.

I was not impressed.

Worst of all was the appallingly unprofessional and unhelpful behaviour of the Chairman, Des Turner MP** and the Secretary, the Countess of Mar, right at the start of the meeting: Paul Davis (RiME) had tried to make a point to Turner as he started his opening remarks, and instead of the latter asking him to wait till he’d finished so he could take comments and/or questions (which would be the professional, polite and normal thing for someone chairing a meeting to do), he shouted at Davis for interrupting – like an angry teacher in a classroom – and continued remonstrating, subsequently also turning on attendee Ciaran Farrell, when he politely tried to calm the situation.

There must have been some background history of tension here, since there was no justification for Turner’s over-the-top outburst, and in the middle of his continuing rant Mar suddenly demanded that Davis and Farrell be ejected, otherwise she herself would leave. But without waiting for any response, and with attendees looking stunned and/or bemused, she grabbed her things, said she was leaving anyway, and promptly walked out.

Turner continued with his diatribe, and with belligerent looks and gestures, widened the target of his rebukes to apparently include the whole row of us who were seated together, at one point jabbing a finger in our direction and threatening to have anyone who interrupted him escorted out of the building by the police!

It was an apparent case of Turner, having lost his temper, further getting carried away with his emotions, because he then threatened to leave the meeting as well, actually getting to his feet and gathering up his papers. (Other attendees seated opposite us implored him to stay, which he did.)

This entire episode was completely ridiculous, and I suspect it was a case of Turner and Mar having anticipated trouble for some reason and behaving accordingly, but with no actual cause to do so. It was farcical.

As for the rest of the meeting, we ‘peasants’ were generally treated with what I can only describe as disdain. I would have been open-minded about anyone else’s account if I hadn’t experienced it for myself. It was a disgrace, in my view, and as far as I’m concerned we can do without ‘champions’ like these. What the motivation is for being involved, I don’t know, but I suspect it might have something to do with seeking to maintain control of ‘the movement’ through whatever channels available, the APPGME being just one of them.

My suspicions that this episode was artificially engineered were given strength by the subsequent address by Mike O’Brien MP**, Minister of State for Health Services, who – describing M.E. as “a set of conditions” (!) – appeared to labour the point that one of the obstacles to progress was the lack of unity and agreement amongst patient groups. (Where have we heard that one before?) How coincidental and convenient that the meeting began so ‘controversially’ and demonstrated what a bunch of ungrateful, bolshy irritants we M.E. patients are!

The overwhelming impression I got from this meeting (and not in isolation, as I’ve been following accounts of previous APPGMEs) is that the whole enterprise is becoming a sham. Having dragged myself down to London (at a cost that doesn’t need explaining here), I was well and truly hacked off at the Secretary walking out before the meeting had even got going, being treated like a pariah by a Chairman threatening to end the meeting and having chronically ill patients removed by the police, and being patronised by a Minister whose address was the epitome of political spin. O’Brien seemed to believe that having M.E. meant some days feeling poorly and some days feeling well – well enough to have a part-time job, in fact. So we know where he’s coming from: apparently the same place as Yvette Cooper MP** (guest speaker at the previous APPGME meeting), Secretary of State for Work and Pensions, who ‘had M.E’ some years ago but is now ‘fully recovered’…

In the meantime, Dr Charles Shepherd of the Myalgic Encephalopathy Association (MEA), has put his own account of the meeting on the MEA web site here


“Unfortunately, the meeting got off to an extremely regrettable start – all due to a very small section of the audience making repeated and sometimes very aggressive interruptions about various administrative matters. As a result of this gross discourtesy to the Minister, the time available for the ministerial response was being steadily eroded. Despite several polite requests from the Chairman, the interruptions continued. As a result, the Countess of Mar terminated her involvement with the meeting. The Chairman then stated that he would either terminate the meeting or arrange for those involved to be removed from the committee room by the House of Commons police if their interruptions continued. Shortly after, those involved calmed down and we managed to start dealing with the real business of the APPG report.

“On a personal note I am very much in favour of public attendance/contribution at these meetings. However, it needs to be said that if people with ME/CFS want to alienate parliamentary opinion about this illness, and not even have an APPG to put forward their case to ministers etc, then behaving in an aggressive and unpleasant manner is a very good method for achieving this aim. We already have a situation whereby some MPs are unwilling or reluctant to attend APPG meetings – all because of the obsessive and often unpleasant interruptions about administrative matters. And it could well be that after the Election, when the APPG will have to be reformed, it will be very difficult to find enough parliamentarians who are willing to take on an active APPG role. We just cannot afford to risk losing the support of distinguished parliamentarians like the Countess of Mar. It also needs to be said that the vast majority of people with ME/CFS who were present on Wednesday, or were being represented, had come to hear about the report, listen to the Minister, and then ask difficult questions about NHS services – they did not want to take up valuable time listening to complaints about the minutes and APPG administration. This could (and should) have waited till after the Minister had left.”

I’m afraid to say that this version of events at the start of the meeting is so inaccurate as to be justifiably called false. It is not just a distortion of the facts, it is blatantly wrong and I’m now ready to believe that this shameful episode really was deliberately engineered, in order to cast certain individuals – or ‘the M.E. community’ in general – in as bad a light as possible, presumably for the benefit of the Minister of State for Health Services and/or the TV production crew apparently, according to Shepherd’s notes, in attendance.

The “audience” as Shepherd calls us here, did not behave “in an aggressive and unpleasant manner”. Yes, technically speaking and in line with protocol, Davis should perhaps have waited for Turner to finish speaking before seeking to make a point to the Chair, but this was hardly the Crime of the Century and was certainly not a “very aggressive interruption”, as Shepherd would have it.

Neither did Turner make “several polite requests”; he was rude and abusive, to the point of verbal assault. That’s the simple truth. He behaved like an angry, out of control teacher trying to silence a pupil. It was a disgrace and an embarrassment and completely uncalled for. The ‘continued interruptions’ Shepherd refers to were actually contributions from those trying to calm Turner down – including, as I recall, Sir Peter Spencer, CEO of Action for ME!

It is not correct to say, “As a result [of the ‘contuinued interruptions’], the Countess of Mar terminated her involvement with the meeting”. She delivered an ultimatum and then left before anyone could even consider it. There was no need for “those involved” to “calm down”, because people were calm – so calmly spoken in contrast to Turner’s agitated outpourings, in fact, that it was a strain to hear what they were trying to say.

As if to reinforce O’Brien’s assertion that it is partly the fault of ‘the M.E community’ that progress is not being made, Shepherd writes, “…it needs to be said that if people with ME/CFS want to alienate parliamentary opinion about this illness, and not even have an APPG to put forward their case to ministers etc, then behaving in an aggressive and unpleasant manner is a very good method for achieving this aim. We already have a situation whereby some MPs are unwilling or reluctant to attend APPG meetings – all because of the obsessive and often unpleasant interruptions about administrative matters.”

No mention here of the APPGME Chairman “behaving in an aggressive and unpleasant manner” (which he did). No, let’s blame M.E. sufferers themselves for the lack of progress. This excuse just won’t wash any more, and in my own opinion, anyone – MP or otherwise – who is reluctant to get involved in our cause because of the justifiable frustration generally of M.E. patients who have had to suffer denigration, neglect and abuse for decade on decade, is quite simply of no use to us in the first place and we could well do without them.

(It is a ruse, in my view, to attempt to lay some of the blame for the lack of progress in our cause at the feet of patients attending these APPGME meetings and to thereby prejudice the understanding of those not privy to the facts. I have now reached the point, after 17 years, where I seriously believe that too many of our ‘supporters’ are not there to help us at all, but to make sure we don’t actually get any help.)

And if they can’t cope with the issues surrounding ill and vulnerable people, how do MPs manage to deal with their constituents, and voters in general? (With the compensation of a life sweetened by the payment of their moat repairs, damp-proofing, fancy dress wigs and porn movies, perhaps?)

This meeting “got off to an extremely regrettable start” , alright – but not because of the M.E. patients present; it was thanks to the Chairman’s and Secretary’s inability to control themselves. But there’s no need to take my (or anyone else’s) word for what happened: the meeting was officially audio-recorded, and the transcript should eventually be made available for all to see.

Little wonder Shepherd refers in his account to “the audience” at this meeting. As far as I could make out, we were an audience, alright – watching a contrived performance.



(From the Daily Telegraph supplement “The Complete Expenses Files”; italicised comments are my own):

Des Turner (salary £64,766) Des Turner is a former teacher [aha!] with a PhD in biochemistry. He claimed mortgage interest payments of up to £450 per month on a flat in London and also claimed up to £400 each month on food… [Note – the MPs’ expenses allowance for food alone is equivalent to Incapacity Benefit payments for those unable to work!]

Mike O’Brien (salary £104,050) Claimed £825 for a Sony television in 2006-7, breaching £750 limit, and repaid money following year so he could move it to other home. Claimed £30 for a DVD player in March 2008, plus £250 a month mortgage interest on his designated second home in Nuneaton and £200 a month for food and more for other bills.

Yvette Cooper (salary £141,866) …At one point, Miss Cooper, the new Work and Pensions Secretary, and Mr Balls [husband], the Children’s Secretary, had their expenses docked, having each submitted two monthly claims for mortgage interest for nearly twice the cost of their actual payments. The couple denied flipping after switching their second home designation three times, saying that they had not sought to maximise their expenses and that, unlike some colleagues, they had paid capital gains tax on selling their home…In total, the couple claimed £24,400 between them on their second home allowance last year…

[And it’s the sick and disabled these people are supposed to help who are branded “benefits scroungers”?]

Benefits cruelty of cancer patients

WordPress Shortlink:

Yahoo! News  |  Benefits cruelty of cancer patients  | 06 December 2009

Seriously ill cancer patients are being forced to undergo “cruel” back-to-work interviews despite the fact they should be exempt, charities have warned.

Those who are terminally ill or undergoing chemotherapy or radiotherapy are being threatened with benefit cuts if they do not attend the meetings, according to Macmillan Cancer Support and Citizens Advice.

The “fit for work” interviews are for people seeking the employment and support allowance (ESA), which replaced incapacity benefit and income support in October 2008.

The drive behind ESA is to focus on what people can do rather than what they cannot do, as a means of getting them back to work.

However, cancer sufferers undergoing chemotherapy or radiotherapy or who are terminally ill are automatically exempt from the interviews.

Macmillan and Citizens Advice condemned the ESA process, saying it was “failing seriously ill and disabled people”. Macmillan’s benefits helpline has taken more than 600 calls about the issue since May.

A joint report – Failed by the System – found evidence of cancer patients with just months to live being told they had to undergo medical examinations and be questioned. Others having radiotherapy and people in hospital have also been refused ESA when they should automatically get it, the study found.

It also noted examples of people with cancer being told they are fit for work even when they are suffering from the long-term effects of the disease.

The charities said poor knowledge of ESA rules among Jobcentre Plus and Department for Work and Pensions medical staff is resulting in claims being handled badly. Poor administration systems and a lack of understanding about cancer are fuelling the problem, they said.

Mike Hobday, head of campaigns at Macmillan, said: “It’s cruel and completely unacceptable that people who are terminally ill or going through gruelling treatment are being made to jump through hoops to get money they should receive automatically. The safeguards to protect cancer patients clearly aren’t working, and the ESA system is riddled with problems.”