ME agenda

Myalgic Encephalomyelitis | political issues | information | commentary | for the UK ME patient community

Archive for the ‘Benefits’ Category

Benefits and Work: Final newsletter No More Benefits Cuts Campaign

Posted by meagenda on November 23, 2009

Update from Benefits and Work’s Steve Donnison

Shortcut: http://wp.me/p5foE-2pX

Benefits and Work

www.benefitsandwork.co.uk

FINAL NEWSLETTER AND UNMISSABLE HALF-PRICE OFFER

This is the final newsletter in the No More Benefits Cuts Campaign. We will be deleting all the email addresses from this list on Friday afternoon.

However, if you want to stay informed about government plans for DLA and AA there are details of how to sign up for our free fortnightly newsletter below.

Also below is an unmissable half-price offer on membership of Benefits and Work, exclusively for subscribers to this newsletter.

WHAT YOU HAVE ACHIEVED

Within hours of our announcing our 100 days campaign, news of the danger to DLA and AA spread across the internet on blogs, forums and social networking sites and you began to make your voices heard.

Contributions to the Big Care debate website went from a few hundred to over 4,000, almost all hostile to the plans for disability benefits.

Many disability charities were unaware of, or reluctant to admit, the existence of the threat. But a deluge of emails from you made them realise that they had no choice but to respond to the green paper.

Almost 22,000 people signed a petition protesting against threats to DLA and AA on the No 10 website – the petition remains open until 7th December.

Virtually every MP in the UK received faxes and letters from you expressing your anger and concern.

Motions criticising the attack on disability benefits were laid before the Scottish and Welsh assemblies.

Questions were asked about the future of DLA and AA in debates in the House of Lords and the House of Commons.

Lord Ashley of Stoke warned that “any attempt by the Government to withdraw these benefits, or any benefits at all, will be very strongly resisted by disabled people, by their organisations and by many Members of both Houses of Parliament”

The Conservatives announced that they would oppose plans to incorporate AA into funding for the National Care Service.

Forced into the open by the growing clamour, Health Secretary Andy Burnham announced that he had ‘heard the concerns and worries about disability living allowance’ and “I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.”

So, in just one hundred days, and with no support whatsoever from claimant- bashing tabloids, you have forced the government to rule out any hopes it had of snatching DLA for under-65s to fund the National Care Service.

And you’ve also finally forced them to disclose, even if only by omission, that DLA for people aged 65 and over, as well as AA, is still under threat.

All this whilst proposals are still at the green paper stage, when ministers would normally expect only a few professionals and specialist organisations to even notice their existence, let alone express an opinion.

WHAT HAPPENS NEXT

We hope that all the disability charities that took part in the green paper consultation will publish their responses online. Perhaps you could encourage any charity with which you have a connection to do so?

If they don’t, we will be making freedom of information requests for copies of their submissions.

Aside from that, it’s now largely a question of waiting to see what is in the white paper, if it is indeed published early next year.

We don’t yet know what role – if any – Benefits and Work will have if the white paper poses a serious threat to disability benefits. We’re hoping that disability charities will show real determination and leadership in their opposition to any proposed cuts and that we will be irrelevant.

If not . . . we may be back.

HALF-PRICE MEMBERSHIP

When we began this campaign we were repeatedly accused by individuals and organisations of inventing the threat to DLA in order to make a profit. In truth, as we’ve discovered in the past, campaigning costs us money.

In fact, whilst this campaign was at its height, subscriptions to the site actually fell.

The reason is simple: most individuals and agencies subscribe to the Benefits and Work website when they have a specific benefits problem that needs a solution, not to support a cause. Campaigning takes up a huge amount of time that we would otherwise devote to producing and promoting new material that helps people solve those problems. Less new DLA, IB and ESA material means fewer new subscribers.

So, we offer no apologies whatsoever for making an offer to readers of this newsletter who perhaps haven’t got an urgent benefits problem now, but foresee the possibility arising in the next year and who would like to become part of the Benefits and Work community:

Subscribe by Paypal before 5.00pm on Friday November 20th and get a year’s subscription for £9.25 – less than half the standard price of £18.55.

To take advantage of this offer, register with the site, if you haven’t already. Then log in, click on the New subscription link on the left hand side of the page and type the following code in the coupon box:

ind6254

If you’re an existing subscriber and want to take advantage of this offer, you can extend your current membership by another year using the same code. But please drop us an email to tell us you have done so, so that we can make sure the software has added the extra year to your subscription.

Visit the Join us page to begin the process:

http://www.benefitsandwork.co.uk/join-us

PROFESSIONALS ONLY

We’re also offering a reduction to organisations who subscribe to this newsletter.

Purchase your organisational subscription by Paypal before 5.00pm this Friday 20th November and get a year’s professional membership for £60 instead of £93, using the following code:

prof3574

Existing professional subscribers can extend their current membership by a year using the same method – again please email us to let us know you have done so.

This offer applies only to Paypal payments – which can be made using any credit or debit card – we can’t accept payment by invoice for this offer.

Visit the professionals subscription page to begin the process.

http://www.benefitsandwork.co.uk/join-us/professionals

FREE NEWSLETTER

We provide a completely free email newsletter which we now publish every fortnight. It covers all the news relating to incapacity and disability benefits and will keep you up-to-date with what’s happening in relation to the National Care Service. You can sign up for it by typing your first name and email address into the boxes on this page:

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

And that’s it.

Many thanks for the literally thousands of letters, emails and phone calls offering support and information we’ve received over the last 100 days. It’s been a real privilege to hear from – and campaign with – so many people who aren’t prepared to be pushed around by politicians.

Good luck,

Steve Donnison

Benefits and Work Publishing Ltd
www.benefitsandwork.co.uk
Company registration No. 5962666

POST YOUR NEWS

Finally, remember that you can post your news in the Benefits and Work forum, if you’re a member, at:

http://www.benefitsandwork.co.uk/forum?func=showcat&catid=13

and/or in the free welfare watch forums at:

http://welfarewatch.myfineforum.org/index.php

You can also keep up with news about opposition to the green paper at the Carer Watch campaign blog:

http://carerwatch.com/cuts/

Unfortunately, we’re getting so many emails on this subject that we are unlikely to be able to respond individually. But we do appreciate hearing your news and views and we do encourage you to publish them for others to read on the forums detailed above.

Posted in Benefits, Care, Labour, Politics, Protests, Welfare reform | Comments Off

APPG on ME: Agenda meeting 2 December 2009

Posted by meagenda on November 19, 2009

APPG on ME: Agenda meeting 2 December 2009

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

 

The APPG on ME maintains a website here: http://www.appgme.org.uk

Agenda APPG for ME 2 Dec 2009

APPG agenda 02/12/2009

19 December 2009

The next meeting of the All Party Parliamentary Group (APPG) on M.E. will be held 3.15-4.45pm, Wednesday 2 December 2009 in Committee Room 15, House of Commons.

1. Welcome by the Chairman

2. APPG Report on the Inquiry into NHS Services

3. Speaker: Mike O’Brien MP, Minister of State for Health Services

4. Minutes of the last meeting

5. Matters arising

- APPG legacy paper (in preparation for the General Election)

- New research: murine leukaemia virus-related virus (XMRV)

- Accessibility of venues for future meetings

6. Welfare update

- Employment and Support Allowance

- Welfare Reform Bill

7. Any other business

8. Date of next meeting

Posted in APPG on ME, APPG on ME Agenda, AfME, Action for M.E., Benefits, CFS Clinics, CFS Clinics Inquiry, CFS Research, Care, DWP, DoH, ME Association, ME Research, ME events, ME in Parliament, NHS, NHS service provision inquiry, Welfare reform, XMRV, XMRV Retrovirus | Comments Off

Benefits and Work: Hundreds of claimants unjustly imprisoned

Posted by meagenda on November 13, 2009

Benefits and Work: Hundreds of claimants unjustly imprisoned

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

And update from Benefits and Work’s Steve Donnison  |  12 November 2009

In this newsletter we look at the shocking evidence provided by a welfare benefits expert that every year hundreds of claimants are being unjustly imprisoned because of misleading evidence provided to criminal courts by the DWP.

It’s not possible to prove whether the DWP is providing inaccurate evidence deliberately or whether it is solely through negligence. But, given the department’s desire to get as many tabloid headlines as possible about claimant fraud, many people will reach their own conclusions.

And still on the subject of potentially misleading evidence, we revisit the issue of taping your Atos benefits medical. Regular readers will know that Atos insist that if claimants want to record their examination they must agree to provide, at their own huge expense, a sound engineer and a tape machine capable of making two tapes at the same time.

We discover what happened when one of our members did exactly that.

We couldn’t leave the topic of misleading statements without revisiting the issue of DLA and the proposed National Care Service. Our suspicion that health secretary Andy Burnham’s apparent reassurance about DLA last month left claimants aged 65 and over still under threat is looking increasingly accurate. Burnham failed to answer repeated questions on the subject fired at him by MPs during a debate on the National Care Service.

What’s more, an undertaking to reveal full costings of the new service before the end of the consultation period has now been broken, leaving charities threatening to use the Freedom of Information Act.

That same consultation ends tomorrow. If you haven’t already contributed to the mauling the government’s proposals are receiving on the Big Care debate website, this is your final chance to do so.

Good luck,

Steve Donnison

More secrecy around National Care Service
http://www.benefitsandwork.co.uk/news/latest-news/1123-more-secrecy-around-national-care-service
The government has gone back on a pledge to reveal the true cost of its proposed National Care Service before the green paper consultation period ends on November 13th, prompting further suspicions about the honesty of the whole consultation process.

Burnham refuses to answer DLA questions
http://www.benefitsandwork.co.uk/news/latest-news/1122-burnham-refuses-to-answer-dla-questions
Health secretary Andy Burnham repeatedly failed to answer questions about disability living allowance for people aged 65 and over during a commons debate on the care green paper last week.

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

Hundreds of claimants unjustly imprisoned
http://www.benefitsandwork.co.uk/news/members-only-news/1134-hundreds-of-claimants-unjustly-imprisoned
Many hundreds of claimants are unjustly imprisoned every year a welfare benefits expert has told MPs . In one case he assisted with, a woman prosecuted for a £47,000 overpayment had in reality under-claimed benefits.

Getting permission to record your medical
http://www.benefitsandwork.co.uk/news/members-only-news/1133-getting-permission-to-record-your-medical
The issue of tape recording benefits medicals is one that frequently comes up in our discussion forums. Atos, the company that caries them out, insists that if you wish to do so you must provide a professional operator and a properly calibrated tape machine that records two copies of the examination at the same time. Deeply unreasonable and unaffordable as these conditions are, what happens when a claimant actually meets them?

(c) 2009 Steve Donnison. All rights reserved

Posted in A4e, Benefits, Care, Freedom of Information, Protests, Welfare reform | Comments Off

Benefits and Work: You’re not so easy to silence

Posted by meagenda on November 10, 2009

An update from Benefits and Work’s Steve Donnison

WordPress Shortlink: http://wp.me/p5foE-2lY

Steve Donnison  |  10 November 2009

www.benefitsandwork.co.uk

You’re not so easy to silence

With just a few days of consultation left now, Andy Burnham’s attempt to ‘close down…the debate and controversy over disability living allowance’ seems to have been only a partial success.

As we explained in our last newsletter, Burnham gave an assurance that DLA for people aged under 65 was not going to form part of the funding for the National Care Service. Like many others, we pointed out that this means that DLA for people aged 65 and over, as well as AA, is still under threat. We urged people not to let this cunningly worded concession succeed in silencing them.

And you certainly didn’t.

People have continued to sign the No 10 petition, which is now at number 6 on the Downing Street site with over 20,000 signatures.

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

And posts have continued to pour into the Big Care debate website which now has almost 3,400 submissions.

http://careandsupport.direct.gov.uk/greenpaper/execsum/

Many recent posts make it clear that you are aware that assurances have been give about DLA for people aged under 65, but you’re still not happy.

In addition, following our revelations in a members only article on the site at the end of last month, many recent posts have been about the fact that the government proposes to send everyone a one-off £20,000 tax bill on their 65th birthday to help cover the cost of the proposed National Care Service.

More secrecy around National Care Service
http://www.benefitsandwork.co.uk/news/latest-news/1123-more-secrecy-around-national-care-service

The tax will be means-tested, so not everyone will have to pay the full amount. But it can be recovered from your estate after you die, if you own a home or other property. And the tax also won’t cover the cost of food and accommodation if you have to go into residential care, only the care itself.

So, you still facing losing your disability benefits at age 65, you’ll still get handed a £20,000 tax bill and yet, if you do have to go into residential care for two years, the green paper estimates that you will still have to pay half of the estimated £50,000 cost from your own pocket.

MPs were also not fooled into silence by Burnham’s DLA announcement. In a debate on the proposals at the end of last month, Burnham was repeatedly questioned about whether DLA for people aged 65 and over would be used to fund the National Care Service. He repeatedly dodged answering the question.

Burnham refuses to answer DLA questions
http://www.benefitsandwork.co.uk/news/latest-news/1122-burnham-refuses-to-answer-dla-questions

Suspicions about the government’s plans have been further fuelled by its refusal to publish promised details of how the new service will be funded.

More secrecy around National Care Service
http://www.benefitsandwork.co.uk/news/latest-news/1123-more-secrecy-around-national-care-service

A coalition of charities – the Care and Support Alliance – is now set to make a Freedom of Information request to try to obtain the information.

Unfortunately, there is at least one organisation which continues to claim that DLA is now safe. . . Disability Alliance. Until the end of last week their home page still proclaimed ‘DLA no longer part of social care plans. See our press release.’

The link has now been removed from their home page, but the press release stating that “…the Disability Living Allowance (DLA) benefit will not be affected by Government plans to merge some benefits with social care funding” remains. So, Burnham may have succeeded in closing down the debate in one place at least.

For the rest of us, we still have until Friday to make our contribution to the Big Care debate and to sign the petition.

We’ll be back next Tuesday with our final email of this campaign and information about how you can stay in touch with what happens next.

Good luck,

Steve Donnison

Please feel free to forward or publish this article.

Benefits and Work Publishing Ltd
www.benefitsandwork.co.uk
Company registration No. 5962666

POST YOUR NEWS
Finally, remember that you can post your news in the Benefits and Work forum, if you’re a member, at:

http://www.benefitsandwork.co.uk/forum?func=showcat&catid=13

and/or in the free welfare watch forums at:

http://welfarewatch.myfineforum.org/index.php

You can also keep up with news about opposition to the green paper at the Carer Watch campaign blog:

http://carerwatch.com/cuts/

Unfortunately, we’re getting so many emails on this subject that we are unlikely to be able to respond individually. But we do appreciate hearing your news and views and we do encourage you to publish them for others to read on the forums detailed above.

Posted in Benefits, Care, Consultations, DWP, Protests | Comments Off

Medically Unexplained Psychologising of ME (MUPs) by Peter Kemp

Posted by meagenda on November 10, 2009

An essay by Peter Kemp orginally published on Co-Cure

WordPress Shortlink: http://wp.me/p5foE-2lq

 

Medically Unexplained Psychologising of ME (MUPs)

Permission to repost

10 October 2009

In this essay I will explore some psychic phenomena that might be relevant to psychologising of illness.

Generalisations cannot practically be made, MUPs is not just heterogeneous from a psychic viewpoint – it is likely to be individual. So I can only explore my impressions and I hope you will read my theories as falling somewhere between the Origin of Speciousness and A Tale of Two Settees.

Use of some terminology has been unavoidable but I include a few definitions and illustrations as ‘Asides’ that I hope will help make the essay accessible to PWME.

Peter Kemp

Acronyms:

PWME = Person (or People) With ME

MUPs = Medically Unexplained Psychologising of ME

 

Medically Unexplained Psychologising of ME (MUPs)

Aside 1

AN ILLUSTRATION OF ‘PROJECTION’

Jack thinks that it would be very bad to be envious; this might be something his parents taught him. He notices envy in other people and condemns them for being envious. The envy that he so often notices might be real or not, it does not matter because it is HIS envy he is seeing. He is Projecting his envy onto other people to try and hide and control it within himself.

WITHDRAWAL OF PROJECTION

Projection is an unconscious process, people are not aware when they are doing it, but if they can become aware of the true source of a problem there may be an opportunity for growth.

One day Jack says to Jill, ‘I think you are envious of Mary’s little lamb’; and Jill says, ‘actually, I love Mary so much I gave her that lamb. I think you are envious because I get on so well with Mary.’ Jack’s theories fall apart and his projection is laid bare. If he is honest and humble enough he can then discover his own envy and stop projecting it. It may help if Jill points out ‘what’s wrong with being envious anyhow? It is part of how I know what I like and what I want’.

Through this uncomfortable experience Jack stops projecting envy and finds that natural feelings of envy can help him to make decisions about what he wants in life.

———————————————

Projected Fear

PWME represent ‘ideal’ subjects for the projection of all sorts of fears, Fear of losing control, Fear of weakness, Fear of illness, Fear of physical inadequacy, and perhaps worst of all, Fear of fear. For some MUPs I suspect that subtler projections and issues arise, such as Fear of being wrong and Fear of being misunderstood. All these fears have their roots in the psyche and are most troublesome when their origins are unconscious and when strongly denied. This may result in odd behaviour that may nevertheless be easily justified, but the justifications do not reveal the true motives behind the behaviour, instead they contribute to their concealment.

To confront fear it must be acknowledged but if it originates from an intense inner conflict it might be that the ego is not ready to withstand it. In these circumstances an internal struggle is maintained to repress some aspects of a complex in order to protect the ego. Enacting these conflicts in the world is a common way of reinforcing defences and avoids addressing the conflict directly. Unfortunately, this never resolves the issue at its source and means that substitute conflicts must constantly be found. As such projecting Fear may be predisposing and initiating; and because projection is an avoidance strategy, it is likely to be a maintaining factor in MUPs.

Withdrawal of Projection

For some people in whom contact with PWME arouses issues with fear, the psyche may seize this as an opportunity for growth. If someone projects fear onto another they may sometimes be able to compare their projection with the actual person. If discrepancies are found then the projection might start to weaken, then the projector has an opportunity to challenge and eventually withdraw the projection.

For example; a person fearful of losing control might project this onto a PWME; if they then realize that the PWME is actually coping well (with what for many people is a terrifying aspect of disability), the projector may think something like; ‘I thought he was weak, but I could not cope so well with such a loss of control’. This represents a stage of withdrawal of a projection as the projector has discovered that the source of the fear is within himself. Such situations might be considered MUPs based on transient / opportunistic factors; and is I suspect, a very common occurrence. Some MUPs might be able to relate to this if they find they vacillate between impatience and respect towards a PWME. This could be a sign that projections are weakening and the source of fear might be discoverable. Read the rest of this entry »

Posted in Benefits, CBT/GET, Care, Child protection, DSM revision process, Elephant Series DSM-V, ICD revision process, ICD-11, ME in children, MSBP (FII), MUPSS Project, MUS | Comments Off

Guardian: Bending the rules

Posted by meagenda on November 2, 2009

From the Guardian’s Melissa Viney, Wednesday 28 October 2009:

WordPress Shortlink: http://wp.me/p5foE-2iI

http://www.guardian.co.uk/society/2009/oct/28/work-capability-assessment-incapacity-benefits

Bending the rules

Critics of new medical tests aimed at getting claimants off benefits and into work say they are target-driven measures that penalise genuinely ill people.

By Melissa Viney

[Photo of Anna Wood] Anna Wood, who has severe ME and is dependent on help from her home carer, was initially deemed ineligible for the new form of incapacity benefit. Photograph: Frank Baron

“Had Anna Wood realised that by bending down to pick up an object off the floor she would be deemed fit to work, perhaps the 33-year-old former academic would have thought twice. Wood, who had been forced to give up a prestigious fellowship position at Strathclyde University last year after developing severe ME, was made to perform the exercise as part of a medical test that all claimants of the new sickness benefit for ill and disabled people have to undertake….”

“…This tough medical test, called the work capability assessment (WCA), is at the heart of controversial changes to sickness benefit that were introduced last October when employment support allowance (ESA) replaced incapacity benefit (IB) for new claimants…”

Read full article here

Posted in A4e, Benefits, CFS in the media, Care, DWP, DoH, Labour, ME in the media, Welfare reform | Comments Off

Benefits and Work: DLA saved – for some

Posted by meagenda on November 2, 2009

An update from Benefits and Work’s Steve Donnison.

WordPress Shortlink:  http://wp.me/p5foE-2iz

From Steve Donnison  |  27 October 2009

DLA saved – for some

It’s a start, but nowhere near enough.

Health secretary Andy Burnham has said that he has “heard the concerns and worries about disability living allowance”. As a result, he has announced that:

“I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.”

Good news indeed . . . for some . . . for the moment.

But definitely not for the one and a half million people who depend on AA.

Nor for the for the three quarters of a million people aged 65 and over who receive DLA.

Not even for the 400,000 DLA claimants currently aged between 60 and 64, many of whom will have reached the age of 65 by the time labour’s proposed National Care Service is introduced.

Because, of course, DLA is not just paid to people under 65. You have to make your claim before you are 65, but you can then go on claiming indefinitely if your needs do not change.

Unfortunately, many organisations who should know better seem to have forgotten that – perhaps just as the government hoped.

Because Mr Burnham made no secret about why he made this announcement: he wants to shut people up. He said in his speech, given at a conference in Harrogate on 22nd October and also published on the Big Care Debate website:

“One avenue I do want to close down, however, is the debate and controversy over Disability Living Allowance.”

In that ambition, he seems to have succeeded, at least so far as some disability charities are concerned.

Immediately following Burnham’s speech, Disability Alliance sent out a press release stating that:

“ …the Disability Living Allowance (DLA) benefit will not be affected by Government plans to merge some benefits with social care funding…Andy Burnham’s announcement will reassure disabled people that DLA is safe – for now at least.”

The Disability Charities Consortium told the media:

“This represents a real victory for disabled people who felt very strongly that the DLA should be retained and made their collective voice heard on this issue. “

Macmillan Cancer Support also issued a press release saying that:

“Whilst we are pleased the Government has said Disability Living Allowance (DLA) will not be used to meet the shortfall in social care funding, we remain deeply concerned that Attendance Allowance (AA) is still under threat.”

But that isn’t what Andy Burnham said at all. He said DLA for under 65’s is not being considered.

This was echoed by Yvette Cooper, the DWP secretary of state who told a meeting of the All Party Parliamentary Group on ME on 21st October that DLA for people of ‘working age’ is not under review.

It was also made clear by Burnham that there will be no transitional protection of existing awards for current claimants. Instead, ‘an equivalent level of support’ will be provided by your local authority.

Burnham’s announcement seems to have had the desired effect, however – the ‘debate and controversy’ over DLA appears to be over as far as some disability charities are concerned. Yet, in a little over two weeks time the deadline for submissions on the green paper ends.

It’s vital that the case for saving DLA for all claimants is still made. Only now there is a real worry that not only have the disability charities relaxed, but also that Burnham will claim that because 3,000 submissions to the Big Care Debate were made before his announcement that DLA for under 65s is safe, they should mostly be discounted.

If you don’t want the government to get away with closing down ‘the debate and controversy over Disability Living Allowance’ there are things you can do.

Contact disability groups you have a connection with and warn them that they still need to respond to the green paper in relation to both DLA and AA.

Respond to the Care Green paper yourself, again if necessary, making it clear that you are aware that DLA for under 65s is not under consideration and giving your views on axing AA and DLA for people aged 65 and over.

http://careandsupport.direct.gov.uk/greenpaper/execsum/

Email: careandsupport@dh.gsi.gov.uk

Rouse people to sign the No 10 petition, which is gathering real momentum again: it now has over 19,000 signatures and is at number 8 out of over four and a half thousand petitions on the site. Not bad going for a petition that has been running for less than two months.

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

Tell your MP what you think or, better still, go and visit them and tell them face-to-face.

One final thought. The revelation that the government is considering slashing the income of 2.5 million older disabled claimants was made by Andy Burnham in a keynote speech last week.

The subject of that speech?

Outlawing ageism in the NHS.

Good luck,

Steve Donnison

Please feel free to forward or publish this article, which is also available online at: http://www.benefitsandwork.co.uk/news/latest-news/1118-dla-saved–for-some

Benefits and Work Publishing Ltd
www.benefitsandwork.co.uk
Company registration No. 5962666

POST YOUR NEWS
Finally, remember that you can post your news in the Benefits and Work forum, if you’re a member, at:

http://www.benefitsandwork.co.uk/forum?func=showcat&catid=13

and/or in the free welfare watch forums at:

http://welfarewatch.myfineforum.org/index.php

You can also keep up with news about opposition to the green paper at the Carer Watch campaign blog:

http://carerwatch.com/cuts/

Unfortunately, we’re getting so many emails on this subject that we are unlikely to be able to respond individually. But we do appreciate hearing your news and views and we do encourage you to publish them for others to read on the forums detailed above.

—————–

From Steve Donnison  | 30 October 2009

£20,000 shock birthday tax for all

A £20,000 tax bill on your 65th birthday sounds like the stuff of nightmares or political satire. But it’s one of the proposals in the care green paper which has so far received little attention as the government struggles to deal with the outcry over disability benefits cuts.

On the subject of which, people who receive the campaign newsletter will already know that the health secretary has now said DLA for the under-65s will not be used to fund the proposed new care service. But he has offered no such guarantee in relation to either AA or DLA currently paid to people aged 65 and over.

Combine a £20,000 tax bill with your DLA being stopped and 65th birthdays could become the most financially ruinous occasion of many people’s lives. Members can read the full story at:

£20,000 shock birthday tax for all
http://www.benefitsandwork.co.uk/news/members-only-news/1121-p20000-shock-birthday-tax-for-all

Of course, none of this may happen and you still have a chance to have your say about whether it should or not by visiting:

http://careandsupport.direct.gov.uk/greenpaper/execsum/

or emailing: careandsupport@dh.gsi.gov.uk

Employment and support allowance is also proving financially ruinous, not just to claimants being refused it, but possibly also to the private sector companies involved in the mandatory work-focused Pathways interviews.

We look at claims by a multinational company that delays in ESA medicals are leading to lost profits for them and to terminally ill claimants being forced to attend Pathways interviews.

The company also suggests that claimants who make real efforts to move towards employment before their medical may be losing their entitlement to ESA as a result and thus also losing the support that Pathways is supposed to provide.

Finally, in an effort to end on a slightly cheerier note, we have the news that CPAG have put an end to bullying attempts by the DWP to recover money from claimants where they have no legal right to get the money back.

It’s good to know that there’s still a little justice left out there.

Good luck,

Steve Donnison

DLA saved – for some
http://www.benefitsandwork.co.uk/news/latest-news/1118-dla-saved-for-some
Health secretary Andy Burnham has announced that: “I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.”

CPAG victory over DWP bullies
http://www.benefitsandwork.co.uk/news/latest-news/1117-cpag-victory-over-dwp-bullies
Children Poverty Action Group (CPAG) have won a court order to stop the DWP threatening legal action against claimants in order to recover money the department has no right to.

Lords warn attack on DLA and AA will be “very strongly resisted”
http://www.benefitsandwork.co.uk/news/latest-news/1116-lords-warn-attack-on-dla-and-aa-will-be-very-strongly-resisted
Disabled benefits claimants have finally found influential allies in their fight to save DLA and AA from being used to pay for the government’s planned national care service. Bizarrely, one of these allies may even be David Freud, now the shadow work and pensions minister.

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

Claimants who try lose benefits
http://www.benefitsandwork.co.uk/news/members-only-news/1119-claimants-who-try-lose-benefits
A private sector provider alleges that claimants risk losing their employment and support allowance (ESA) as a result of diligently taking part in the Pathways to Work programme. They also claim that delays in medical assessments are causing ‘confusion and distress to claimants’, with some terminally ill people being forced to attend work-focused interviews, and are hitting the private sector’s profits.

£20,000 shock birthday tax for all
http://www.benefitsandwork.co.uk/news/members-only-news/1121-p20000-shock-birthday-tax-for-all
It’s your 65th birthday. A pile of cards drop through the letterbox. There’s also two brown envelopes…

Posted in A4e, Benefits, Care, Consultations, DWP, DoH, Politics, Protests, Welfare reform | Comments Off

Future of DLA: Health Secretary Andy Burnham speech, Benefits and Work updates

Posted by meagenda on October 27, 2009

Update: New update from Benefits and Work added since this post was published see: DLA saved – for some” at end of post.

DLA: Health Secretary Andy Burnham speech, Benefits and Work updates

WordPress Shortlink: http://wp.me/p5foE-2et

Guardian  |  Rachel Williams  |  Thursday 22 October 2009

http://www.guardian.co.uk/society/2009/oct/22/social-care-nhs-disability-allowance

Health secretary Andy Burnham: ‘Nobody receiving disability benefits will lose out’.

The health secretary, Andy Burnham, will today rule out a controversial plan to scrap disability benefit paid to 2.5 million younger people.

In a major speech on the future of social care, he will say he has decided not to use disability living allowance (DLA) to fund the new national care service.

But the abandonment of the idea, which would have saved £6bn, raises further questions about how the government will meet the spiralling bill for social care. Last night the Tories claimed there was a £4.6bn “black hole” in Labour’s flagship health plans… Read full article here

—————–

Benefits and Work  www.benefitsandwork.co.uk

From Steve Donnison  |  22 October 2009

A champion emerges as minister admits DLA threat

The last two weeks have finally removed any uncertainty about whether DLA is under threat, but they have also brought real cause for optimism.

Lord McKenzie of Luton, the parliamentary under secretary of state for work and pensions, was asked last week in a House of Lords debate which disability benefits the government are ‘considering integrating into the wider social care budget in England’.

Lord McKenzie replied:

“At this stage, we do not want to rule out any options and so are considering all disability benefits.”

Even when care minister Phil Hope’s claim that DLA is ‘not under threat’ was referred to and Lord McKenzie was specifically asked to rule out the using DLA as a source of funding for social care, his response was “no particular benefit is ruled out of consideration.”

So, whilst we can’t say why Phil Hope made his ‘be very happy’ statement, we can now say with certainty that it does not reflect the government’s stated policy. For more, see:

Senior minister confirms DLA is under threat

http://www.benefitsandwork.co.uk/news/latest-news/1115-senior-minister-confirms-dla-is-under-threat

But that same Lord’s debate also brought a real ray of hope in the form of a champion prepared to fight for DLA and AA.

Lord Ashley of Stoke warned the minister that “any attempt by the Government to withdraw these benefits, or any benefits at all, will be very strongly resisted by disabled people, by their organisations and by many Members of both Houses of Parliament.”

Lords warn attack on DLA and AA will be “very strongly resisted”

http://www.benefitsandwork.co.uk/news/latest-news/1116-lords-warn-attack-on-dla-and-aa-will-be-very-strongly-resisted

Lord Ashley – former MP Jack Ashley – is a formidable campaigner, with victories dating right back to the thalidomide campaign of the 1970s. It will not have brought any joy to ministers’ hearts to see Jack Ashley, and a number of other noble Lords, lining up against them. And it’s a tribute to the efforts of Benefits and Work campaigners that this issue has gone from being almost entirely unacknowledged – or dismissed as scaremongering – to being debated in the House of Lords in less than three months.

Elsewhere, the No 10 petition has perked up again, now reaching over 17,000 signatures. As few as another 1,000 signatures should see it getting into the top 10 petitions before the care consultation ends on November 13th. Do you know people who haven’t signed yet? Try and encourage them along to:

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

Meanwhile, the Big Care debate website continues to be swamped by people protesting about the threat to disability benefits. From a feeble 130 posts when we began this campaign, there are now 2,219 responses on the Executive Summary page and 606 on Having Your Say. The total is far higher than that achieved by any similar government consultation and the responses are overwhelmingly hostile.

If you haven’t yet sent a response, please do so by visiting this link:

http://careandsupport.direct.gov.uk/greenpaper/execsum/

Or emailing: careandsupport@dh.gsi.gov.uk

We’d like to close this newsletter with an email from one of our campaigners which we think is an inspiring example of spontaneous campaigning:

“Today I was in the Blackburn Shopping Centre on my Shopmobility scooter when I saw Mr. Jack Straw doing his shopping. It was too good an opportunity not to speak with him, so after a few swift manoeuvres I asked for one minute of his time. I told him that I had worked for the past 32 years in the NHS and had now been diagnosed with RA [rheumatoid arthritis] hence the scooter and that I have just been awarded DLA and what a difference it has and will make to myself and indeed others and to please not take it away…. He said “he wouldn’t” and gave me his card to write to him and of course I will follow it up with a letter.”

We’re not suggesting that gangs of claimants on Shopmobility scooters should roam our town centres hunting for MPs spending their expenses – pleasing though that image is – but if you’re able to, why not make an appointment to see your MP at their regular surgery and put your views across in person?

With an election looming, the fact that people are prepared to actually visit them in their offices will make a real impression, particularly on MPs with slender majorities.

Good luck,

Steve Donnison

Please feel free to forward or publish this email.

Benefits and Work Publishing Ltd
www.benefitsandwork.co.uk
Company registration No. 5962666

POST YOUR NEWS

Finally, remember that you can post your news in the Benefits and Work forum, if you’re a member, at:

http://www.benefitsandwork.co.uk/forum?func=showcat&catid=13

and/or in the free welfare watch forums at:

http://welfarewatch.myfineforum.org/index.php

You can also keep up with news about opposition to the green paper at the Carer Watch campaign blog:

http://carerwatch.com/cuts/

Unfortunately, we’re getting so many emails on this subject that we are unlikely to be able to respond individually. But we do appreciate hearing your news and views and we do encourage you to publish them for others to read on the forums detailed above.

—————–

Benefits and Work  www.benefitsandwork.co.uk

From Steve Donnison  |  14 October 2009

Your chances of getting ESA – the secret’s out

14.10.09

Dear Subscriber,

We finally have statistics which tell us what proportion of claimants get an award of ESA and what proportion who don’t get an award subsequently win on appeal. We also know how many people are getting into the support group.

Overall, the figures are not good – but they’re also not as bad as many in the media and the welfare to work industry had been claiming. They aren’t even as bad as the DWP is now trying to make them out to be, as they crow about “stopping more people getting trapped on long-term sickness benefit”.

Read more about the real figures – the ones not mentioned in the dwp press release – in our members area article.

On the subject of bad figures, how would you feel about a £35,000 tax bill? That’s what one disabled claimant has been landed with after changing the employment status of her personal carers. We asked our resident barrister Holiday Whitehead what, if anything, this claimant did wrong.

Her response got us thinking that if you employ personal carers you may well have all sorts of employment issues you’d like an answer to. So, why not drop us an email at info@benefitsandwork.co.uk and we’ll publish (anonymously) a selection of your queries along with Holiday’s answers.

And, just to lighten the mood a little, we have some very happy emails from people who – with a bit of help from Benefits and Work – have won awards of benefits for themselves, their children or other family members.

Finally, a gentle reminder: if you haven’t signed the DLA/AA petition on the number 10 website please do pop along and do so at:

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

There are over 15,000 signatures on it now, but more are still needed if it’s to strike fear into the hearts of vote hungry MPs. For those of you who also subscribe to the No More Benefits Cuts newsletter, there’ll be another one out next Tuesday.

Good luck,

Steve Donnison

£35,000 tax bill – could it happen to you?

http://www.benefitsandwork.co.uk/news/latest-news/1112-p35000-tax-bill-for-disabled-claimant

Last month a disabled grandmother received a tax bill for £35,000 for unpaid employers’ tax and national insurance in respect of her full-time carers.

I haven’t stopped grinning since

http://www.benefitsandwork.co.uk/news/latest-news/1113-i-havent-stopped-grinning-since

Awards of DLA for themselves and for relatives, successful appeals . . . more good news from our members.

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

Your chances of getting ESA – the secret’s out
http://www.benefitsandwork.co.uk/news/members-only-news/1111-your-chances-of-getting-esa–the-secrets-out

The DWP have released statistics showing how many people have successfully claimed ESA. However, the figures may not be as bad as the DWP are trying to make them appear.

(c) 2009 Steve Donnison. All rights reserved.

—————–

Benefits and Work  www.benefitsandwork.co.uk

From Steve Donnison  |  27 October 2009

DLA saved – for some

It’s a start, but nowhere near enough.

Health secretary Andy Burnham has said that he has ‘heard the concerns and worries about disability living allowance’. As a result, he has announced that:

“I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.”

Good news indeed . . . for some . . . for the moment.

But definitely not for the one and a half million people who depend on AA.

Nor for the for the three quarters of a million people aged 65 and over who receive DLA.

Not even for the 400,000 DLA claimants currently aged between 60 and 64, many of whom will have reached the age of 65 by the time labour’s proposed National Care Service is introduced.

Because, of course, DLA is not just paid to people under 65. You have to make your claim before you are 65, but you can then go on claiming indefinitely if your needs do not change.

Unfortunately, many organisations who should know better seem to have forgotten that – perhaps just as the government hoped.

Because Mr Burnham made no secret about why he made this announcement: he wants to shut people up. He said in his speech, given at a conference in Harrogate on 22nd October and also published on the Big Care Debate website:

“One avenue I do want to close down, however, is the debate and controversy over Disability Living Allowance.”

In that ambition, he seems to have succeeded, at least so far as some disability charities are concerned.

Immediately following Burnham’s speech, Disability Alliance sent out a press release stating that:

“. . . the Disability Living Allowance (DLA) benefit will not be affected by Government plans to merge some benefits with social care funding . . . Andy Burnham’s announcement will reassure disabled people that DLA is safe – for now at least.”

The Disability Charities Consortium told the media:

“This represents a real victory for disabled people who felt very strongly that the DLA should be retained and made their collective voice heard on this issue. “

Macmillan Cancer Support also issued a press release saying that:

“Whilst we are pleased the Government has said Disability Living Allowance (DLA) will not be used to meet the shortfall in social care funding, we remain deeply concerned that Attendance Allowance (AA) is still under threat.”

But that isn’t what Andy Burnham said at all. He said DLA for under 65’s is not being considered.

This was echoed by Yvette Cooper, the DWP secretary of state who told a meeting of the All Party Parliamentary Group on ME on 21st October that DLA for people of ‘working age’ is not under review.

It was also made clear by Burnham that there will be no transitional protection of existing awards for current claimants. Instead, ‘an equivalent level of support’ will be provided by your local authority.

Burnham’s announcement seems to have had the desired effect, however – the ‘debate and controversy’ over DLA appears to be over as far as some disability charities are concerned. Yet, in a little over two weeks time the deadline for submissions on the green paper ends.

It’s vital that the case for saving DLA for all claimants is still made. Only now there is a real worry that not only have the disability charities relaxed, but also that Burnham will claim that because 3,000 submissions to the Big Care Debate were made before his announcement that DLA for under 65s is safe, they should mostly be discounted.

If you don’t want the government to get away with closing down ‘the debate and controversy over Disability Living Allowance’ there are things you can do.

Contact disability groups you have a connection with and warn them that they still need to respond to the green paper in relation to both DLA and AA.

Respond to the Care Green paper yourself, again if necessary, making it clear that you are aware that DLA for under 65s is not under consideration and giving your views on axing AA and DLA for people aged 65 and over.

http://careandsupport.direct.gov.uk/greenpaper/execsum/

Email: careandsupport@dh.gsi.gov.uk

Rouse people to sign the No 10 petition, which is gathering real momentum again: it now has over 19,000 signatures and is at number 8 out of over four and a half thousand petitions on the site. Not bad going for a petition that has been running for less than two months.

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

Tell your MP what you think or, better still, go and visit them and tell them face-to-face.

One final thought. The revelation that the government is considering slashing the income of 2.5 million older disabled claimants was made by Andy Burnham in a keynote speech last week.

The subject of that speech?

Outlawing ageism in the NHS.

Good luck,

Steve Donnison

Please feel free to forward or publish this article, which is also available online at: http://www.benefitsandwork.co.uk/news/latest-news/1118-dla-saved–for-some

Benefits and Work Publishing Ltd
www.benefitsandwork.co.uk
Company registration No. 5962666

POST YOUR NEWS
Finally, remember that you can post your news in the Benefits and Work forum, if you’re a member, at:

http://www.benefitsandwork.co.uk/forum?func=showcat&catid=13

and/or in the free welfare watch forums at:

http://welfarewatch.myfineforum.org/index.php

You can also keep up with news about opposition to the green paper at the Carer Watch campaign blog:

http://carerwatch.com/cuts/

(c) 2009 Steve Donnison. All rights reserved.

Posted in Benefits, Care, DoH, Protests, Welfare reform | Comments Off

MEA summary of meeting of APPG on ME (21 October 2009) and APPG Legacy paper

Posted by meagenda on October 23, 2009

http://www.meassociation.org.uk/content/view/1053/161/

1] MEA summary of meeting of APPG on ME (21 October 2009)

(Note this is a brief personal summary published by Dr Charles Shepherd on behalf of the ME Association and not the official meeting Minutes.  The Minutes and possibly a verbatim transcript will be issued at a later date by the  secretariat on behalf of Dr Des Turner, Chair, APPG on ME.)

2] APPG on ME launches legacy paper consultation

WordPress Shortlink: http://wp.me/p5foE-2cK

MEA summary of meeting of APPG on ME (21 October 2009)

This is a very brief summary of key points from the APPG meeting held on Wednesday 21 October in Committee Room 21 at the House of Commons.

The meeting was Chaired by Dr Des Turner MP.

Among parliamentarians present were the Countess of Mar, Russell Brown MP, Andrew Stunell MP, Bill Wiggin MP, and Tony Wright MP..

Representatives from charities and other organisations included those from AfME, BRAME, Kent and Sussex Alternative Group for ME, The MEA, reMember, RiME, Sussex and Kent ME Society, WMMEG and the 25% Group. There were also several members of public present.

A more detailed account of the meeting will appear in the Minutes, which will be posted on the APPG website when they have been through the drafting process and agreed.

PRESENTATION FROM THE RT HON YVETTE COOPER MP, SECRETARY OF STATE FOR WORK AND PENSIONS (DWP)

The main item was a presentation from the Rt Hon Yvette Cooper MP, Secretary of State for Work and Pensions, on benefit issues. Yvette was accompanied by Dr James Bolton, Deputy Chief Medical Adviser at the DWP.

Yvette explained that she had a strong personal interest in ME having suffered from it for a period starting in 1993 before entering parliament. During this time she was very ill for a period of roughly two years and completely off work for a year. This was followed by a period of recovery with more variable health over another two years. She has now made a full recovery and manages to combine being an MP, Minister and bringing up three children! During her early days in parliament she was actively involved with the APPG when it was chaired by Tony Wright MP. However, she did not feel it was appropriate to make general assumptions about ME/CFS based on her own experience.

Yvette briefly outlined the aims behind changes to the care, welfare and benefit systems that are now taking place –in particular the introduction of Employment and Support Allowance (ESA) to replace Incapacity Benefit and the role of the Work Capability Assessment (WCA) in deciding eligibility for ESA. Following on from her personal experience with ME she fully understood the concerns being expressed about assessing the fluctuating nature of ME/CFS and the need for a flexible approach regarding any possible return to work. She believed that the new WCA for ESA claimants took these problems into account. However, she was very willing to look at the problems that were raised during the meeting.

Yvette answered a series of questions from the Chair, who also read out written questions that had been submitted in advance of the meeting, along with questions from those attending the meeting. Yvette had only intended to be there for around 20 minutes but managed to stay for about an hour.

Questions relating to all the common and very familiar problems facing people with ME/CFS were discussed. In particular:

The role of the new Work Capability Assessment for ESA claimants – especially in relation to people being unable to sustain physical/mental activity and the post-exertional symptomatology experienced by people with ME/CFS. In response, Yvette pointed out that this assessment should not depend on a precise diagnosis but on what a claimant could and could not do from the point of view of physical and mental function.

The type of information and training on ME/CFS that is given to DWP decision makers and examining doctors. In response, Yvette maintained that adequate training in relation to specific illnesses such as ME/CFS was part of the DWP programme.

Difficulties in accessing assessment centres. In response, she noted these concerns, agreed that the centres must be accessible to people with disabilities, and said she is very keen to hear of specific examples.

The way in which a patient’s own GPs and specialist were progressively being removed from the opinion gathering process and replaced by doctors who knew nothing about the patient’s social and medical background. In response she noted these concerns but did not indicate that there would be any shift in the DWP position.

Providing real help for people who can and want to return to work on a flexible and/or part time basis. In response, she agreed that this was vital – citing her own experience of a gradual and flexible return to work after having quite severe ME.

Reviewing the permitted work rules – which can be very unhelpful in the case of ME/CFS. These concerns were sympathetically noted.

Des Turner raised the specific issue of problems with tribunals and the knowledge about ME/CFS of those who sat on the panels making these decisions. Examples of very unsatisfactory procedures at tribunals were mentioned by several of those present. In response, Yvette managed to somewhat duck the issue by explaining that the tribunals are classed as being ‘independent’ and their administration comes under the Ministry of Justice. This is clearly going to remain an important issue on the parliamentary agenda.

Tony Wright MP made the point that something was clearly wrong with the benefit assessment system when so many people with ME/CFS were failing on their first application but then being successful on appeal.

Charles Shepherd questioned the DWP auditing and monitoring of the success/failure rate of applications for ESA from people with specific illnesses, including ME/CFS. In response, Dr Bolton explained that no figures are available.

With regard to DLA and the government Green Paper, Yvette was asked about the mixed messages coming from ministers on the future of DLA. In reply, she acknowledged the concerns being expressed and made it clear that DLA for people of working age was not under review. She stated that a government statement on DLA would be made on Wednesday 22 October by the Rt Hon Andy Burnham.

At the end of this presentation. Charles Shepherd asked Dr James Bolton if he would be willing to meet with ME/CFS charity representatives to discuss these concerns in more detail and he agreed to do so. This meeting is now being followed up through the Forward ME group.

OTHER MATTERS

APPG INQUIRY INTO NHS SERVICES IN ENGLAND Des Turner explained that the report was now being written with the intention of having it ready for presentation to the APPG at the next meeting in early December. A Minister from the Department of Health will be invited to attend this meeting to respond to the report.

APPG LEGACY PAPER Des Turner explained that the APPG would have to be reformed after the general election – which will have to take place before June 2010. And with him standing down as an MP we would need to find a new Chair in 2010. To coincide with the winding up of the APPG, a Legacy Paper is being prepared which outlines the key areas of work and actions that have been taken by the APPG during the current parliament, as well as future actions. The APPG is keen to receive input on this from people with ME/CFS and a copy of the current draft will be posted on the APPG website. Comments on this draft must be received by the Secretariat by 19 November – so that further discussion on a further draft can take place at the December meeting.

STATEMENT BY WMMEG (West Midlands ME Groups Consortium): Jill Cooper read out a further statement relating to issues about patient representation, transparency and the suitability of the education and training programme provided by the ME/CFS Clinical and Research Network and Collaborative (CCRNC) This was followed by a very lively discussion on the current state of NHS services for people with ME/CFS.

XMRV: A rather informal discussion on various aspects of the new viral research findings took place.

Date of next meeting: Provisionally fixed for Wednesday 2 December

APPG website: www.appgme.org.uk

——————

http://www.meassociation.org.uk/content/view/1052/161/

APPG on ME launches legacy paper consultation

A consultation on the Legacy Paper for the All Party Parliamentary Group (APPG) on M.E. was launched yesterday (October 22).

The current Chair of the APPG, Dr Des Turner, intends to stand down at the next General Election, due sometime before 3 June 2010.

Comments on the draft APPG legacy paper should be sent to the Secretariat tristana.rodriguez@afme.org.uk  

This email address is being protected from spam bots, you need Javascript enabled to view it no later than 19 November 2009.

The Countess of Mar, who is Secretary of the Group, thanked people with M.E. and Action for M.E. for the work done so far in producing the draft.

The main speaker at the meeting was the Rt Hon Yvette Cooper MP, Secretary of State for Work and Pensions, who described her own personal experience of M.E. and answered a number of questions. In particular, she reassured people with M.E. that it was not the Government’s intention to change working-age Disability Living Allowance under current care reform proposals.

Other topics on the agenda included an update on the APPG Inquiry into NHS services, which is expected to produce a report before the next meeting of the APPG, which will take place on Wednesday 2 December 2009. A Minister from the Department of Health would be invited to attend.

In addition to the Chair, Dr Turner and the Secretary, the Countess of Mar, the meeting was attended by Vice Chairs Andrew Stunell MP and Tony Wright MP (Vice Chairs), plus Bill Wiggin MP and Russell Brown MP.

Minutes and a transcript of the meeting will be produced in due course.

Download Draft Legacy Paper in PDF

Posted in APPG on ME, APPG on ME Minutes, AfME, Action for M.E., Benefits, CFS Clinics, CFS Clinics Inquiry, CFS Research, Care, Consultations, Countess of Mar, ME Research, ME in Parliament, Welfare reform, XMRV | Comments Off

Next APPG on ME: Wednesday, 21 October 2009

Posted by meagenda on October 12, 2009

All Parliamentary Party Group on ME   http://www.appgme.org.uk/index.html

The next meeting of the APPG on ME is scheduled for

 

1.30-3pm, Wednesday 21 October 2009

Committee Room 20, House of Commons

 

AGENDA

1. Welcome by the Chairman

2. Speaker (TBC. The Rt Hon Yvette Cooper MP, Secretary of State for Work and Pensions, has been invited.)

3. Minutes of the last meeting – available here

4. Matters arising

- APPG Inquiry into NHS Services

- Future Chairmanship

- Future Work of the APPG

- APPG legacy paper (in preparation for the General Election)

5. Green Paper, Shaping the Future of Care Together

6. Welfare update

- Employment and Support Allowance

- Welfare Reform Bill

7. Any other business

8. Date of next meeting

Note: Legacy Paper

One of the items on the agenda is the drafting of a legacy paper, outlining areas of work for the APPG, in the event of a change of officials following the General Election. The Chair, Dr Des Turner, has already indicated his intention to stand down.

Members of the APPG and people with M.E. are invited to put forward three or four bullet point suggestions for the key issues and objectives for the APPG, following the General Election. Please e-mail your ideas to the Secretariat, who will produce a draft consensus document from the results. Submissions received by 5pm 19 October will be considered for inclusion in a draft legacy paper to be tabled 21 October. Later submissions should be received no later than 20 November, to be considered for inclusion in the second draft.

Issued on behalf of: Des Turner MP, 179 Preston Road, Brighton BN1 6AG. Tel: 01273-330610.

Email: turnerd@parliament.uk

By: Heather Walker, for the Secretariat (Action for M.E. and the ME Association)

Ed: All enquiries in connection with this meeting to APPG on ME Chair, Dr Des Turner, or to APPG on ME secretariat

 

Minutes of previous APPG on ME Meetings

The APPG on ME website now has PDF copies of Minutes of APPG meetings going back to 31 January 2001 collated at:  http://www.appgme.org.uk/minutes/mintues.html

Clarification regarding membership of the APPG on 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 on ME.

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

In the case of Associate Parliamentary groups, applications for membership may be accepted 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 on 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 on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG on 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.”

The APPG on ME group’s current office holders and the twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed at the link, below.

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi389.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” AfME 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).”

AfME and the MEA have alternated the task of minute taking 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 are open 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 individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

So none of the five national registered membership ME patient organisations listed above are members of the APPG on ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, provide the secretariat function.

ME Research UK : a research organisation and a 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.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are sometimes listed as attendees in the minutes of meetings; their contributions to these meetings are minuted.

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:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

Posted in APPG on ME, APPG on ME Agenda, APPG on ME Minutes, AfME, Action for M.E., Benefits, CFS Clinics Inquiry, Care, ME in Parliament, NHS service provision inquiry, Welfare reform | Comments Off