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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

Two responses around XMRV: Prof Simon Wessely; Dept of Health

Posted by meagenda on November 12, 2009

Two responses around XMRV: Prof Simon Wessely; Dept of Health

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

Two users of the Whittemore Peterson Institute Facebook site have kindly given permission for the following responses to be reproduced here, on ME agenda.

Update: The response from Professor Simon Wessely following an enquiry by a member of the public has been removed since permission for publication and the terms under which Professor Wessely’s response might be republished had not been discussed.  A copy of the response was also published by me via Co-Cure together with the response from the Department of Health.  This is also being removed.

——————-

Whittemore Peterson Institute on Facebook

Heath reported on 12 November that he wrote to the Department of Health.  The DoH response was:

Thank you for your email of 28 October to the Department of Health about xenotropic murine leukemia virus-related virus and chronic fatigue syndrome/myalgic encephalopathy (CFS/ME).

The Department of Health agrees with the World Health Organization’s classification of CFS/ME as a neurological condition of unknown cause. The Department also agrees that CFS/ME is a genuine and disabling illness and can have a profound effect on those living with the condition. That is why research breakthroughs such as the one outlined in your email, are so important to developing the knowledge base.

The National Institute for Health and Clinical Excellence (NICE) clinical guidelines are updated as needed so that recommendations take into account important new evidence. However, as I hope you will appreciate, as NICE is an independent body, the time-frame for revising guidance and the evidence it uses are matters entirely for NICE. You may therefore wish to raise this issue directly with NICE’s Chief Executive, Andrew Dillon, at the following address:

NICE
MidCity Place
71 High Holborn
London WC1V 6NA

I think it also helpful to emphasise that NICE clinical guidelines are just that – guidelines for healthcare professionals use in conjunction with their clinical judgement and based on an individual assessment of each patient’s needs. The guideline recognises that there is no one form of treatment to suit every patient and it does not force patients into treatments they do not want.

The guideline emphasises a collaborative relationship between clinician and patient, that treatment and care should take into account personal needs and preferences, and that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme.

Cognitive Behavioural Therapy is a rehabilitative approach designed to modify the way patients think and behave about their illness and so improve physical symptoms. In common with other illnesses and conditions where it has been successfully used such as chronic pain, cancer, heart disease and diabetes, its use does not imply that the cause of the illness is psychological.

The Department feels that it is not helpful to differentiate between biomedical and psychosocial treatments as, based on clinical evidence that is currently available, patients are best served by a holistic approach.

You also comment on the paucity of bio-medical research. I know that many of the Department’s stakeholders see biomedical research as the key to developing new treatments and the Department appreciates the concern about a lack of biomedical research in this area.

As you may know, the main agency through which the Government supports medical and clinical research is the Medical Research Council (MRC). The MRC is wholly independent in its choice of which research to support and it does not generally earmark funds for particular topics. It maintains a rigorous decision making process and only funds research that is likely to make a significant contribution to knowledge and is a good use of taxpayers’ money. Decisions to support proposals are taken on the grounds of scientific quality and whether the research proposed would be likely to inform the knowledge base. There is certainly no bias, and the Department knows that the MRC remains committed to funding scientific research in all aspects of CFS/ME.

The Department understands that the MRC continues to attract a small number of proposals for biomedical research. The problem is that there appears to be a shortage of good and innovative ideas within the scientific community itself. This is something the Department knows that the CFS/ME community and the MRC are aware of, and the MRC have endeavoured to address this by engaging with patient groups to encourage high quality research proposals. The MRC continues to acknowledge the importance of research into CFS/ME, and it is difficult to see what more the MRC could do without lowering the quality threshold.

I hope this reply is helpful.

Yours sincerely,

Priya Bassan
Department of Health

Related information:

Source: ME Research UK

http://www.meresearch.org.uk/information/publications/casetoanswer.html

The Medical Research Council: a case to answer?

[...]

CFS/ME projects currently funded by the MRC
(Sources: MRC website; Hansard, written answers)

•Two large clinical trials of new approaches to treating CFS/ME:
          PACE (Pacing, Activity and Cognitive Behaviour Therapy: a Randomised Evaluation, £2,076,363) [Prof. PD White, Psychological Medicine, Queen Mary and Westfield College]
          FINE (Fatigue Intervention by Nurses Evaluation, £824,129) [Dr AJ Wearden, Psychological Science, Uni. of Manchester]

•A preliminary epidemiological project to test the feasibility of identifying the risk factors for persistent symptoms of fatigue and abdominal and widespread pain (£118,263) [Prof. F Creed, Psychological Medicine, University of Manchester]

•An epidemiological study to assess ethnic variations of the prevalence of a CFS-like illness, associations with potential risk factors, and coping behaviours (£162,145) [Prof. K Bhui, Cultural Psychiatry and Epidemiolgy, Queen Mary and Westfield College]

•Indirect support through a trial exploring the management of patients with persistent unexplained symptoms [Specifics unknown]

•One project was mentioned in Hansard (12th June 2008) but is not on the MRC website: General and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes (£367,000) [Dr C Clark, Centre for Psychiatry, Barts and The London School of Medicine]

 

Table. Unfunded applications to the MRC between 2002 and 2008

Time-frame   (number of applications)   CFS/ME subject area

2002 to 2005 (11 total) Neurophysiology of fatigue; Population-based/epidemiological studies (4 applications); Neurotransmitters and stress; Neuroimaging; Clinical and laboratory characterisation physiology/diagnosis); Dietary intervention — RCT; Facilitated self-help — RCT; Psychosocial and genetic factors in young people

2005 to 2006 (12 total) Pathophysiology, including studies regarding genetics/biomarkers, immunology and neuroimaging (7 applications); Population-based/epidemiological studies (3); Primary care study; Experimental medicine study

2006 to April 2007 (7 total) Cognitive outcomes in children — pathophysiology; Epidemiological studies — epidemiology; Biomarkers; Pathophysiology (2 applications); Molecular pathogenesis — pathophysiology; Molecular and genetic characterisation — pathophysiology; Neuroimaging — pathophysiology

May 2007 to June 2008 (3 total) Biomarkers — pathophysiology; Management and treatment — intervention; Management and treatment — observational study

Posted in CBT, CBT/GET, CFS Research, CFS in the media, Canadian Criteria, DoH, FINE Trial, ME Research, ME Research UK, ME in journals, MRC, NICE CFS/ME guideline, Prof Holgate, Professor Peter White, Simon Wessely, WHO (World Health Organization), XMRV, XMRV Retrovirus | Comments Off

Guardian: Bending the rules

Posted by meagenda on November 2, 2009

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

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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.

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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

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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

Benefits and Work: Charities claim it’s too late to save DLA and AA

Posted by meagenda on October 7, 2009

An update from Steve Donnison of Benefits and Work

Charities claim it’s too late to save DLA and AA

6 October 2009

CHARITIES ADMIT DEFEAT

We have received a copy of an email which a campaigner says came from the charity ASBAH (Association for Spina Bifida and Hydrocephalus) in response to his concerns about the care green paper. The email appears to admit defeat in the fight to save DLA and AA:

“…ASBAH, in line with many other larger bodies is of the view that these proposals have already gathered too much momentum to be reversed and that major changes are inevitable… it is vital within any alternative system that people retain elements within their budgets where they can exercise choice in how they spend that money. Although we have not adopted a position where we are fighting to save DLA and AA we would fight to see this element of choice protected and would resist any attempt to convert all support to ‘in kind’.”

We have emailed ASBAH to ask for confirmation that the email is genuine and to ask which other ‘larger bodies’ – presumably disability charities – have also given up the fight to save DLA and AA.

We have yet to receive a response.

MINISTER’ STATEMENT: IS DLA REALLY SAVED?

One week on and there has been absolutely no corroboration of Care Services minister Phil Hope’s off-the-cuff statement that DLA is not being considered for the axe.

As we pointed out last week, Hope’s ‘don’t worry, be happy’ exhortation contradicts previous statements made by the DWP. So, the continued failure by either the DWP or the Department of Health to make any official statement confirming that they have changed their position and that DLA is now safe can only be a cause for deep suspicion and grave concern.

In addition, no reassuring words whatsoever have been offered in relation to AA.

So, at Benefits and Work, our message continues to be ‘It’s not over yet: carry on campaigning’.

NO 10 PETITION STRUGGLING

The petition about DLA and AA seems to be grinding to a halt again, at under 12,000 signatures. As we said last week, if any agency starts a petition it’s vital that they give it maximum publicity or it ends up damaging, rather than promoting, their cause.

Do you have time to check the website of any disability charity that you have a connection with and, if there isn’t an obvious link to the No 10 petition, email them and politely ask them to publish one.

You could point out that the petition was started by the Disability Charities Consortium and that it’s important that disability charities now work together effectively to promote it. If they can’t act together on so simple a thing as getting signatures on a petition, then what exactly can they act together on and how can they claim to be representing their members’ interests?

The petition can be found at:

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

GREEN PAPER WEBSITE AMAZED

The Big Care Debate website have answered our queries about missing responses by replying that “we have received an amazing response from the public in regards to the Green Paper, on both the website and via email. We are doing our best to work our way through them, and have them online and ready to view as soon as we can.”

We know that in the past, such consultations have struggled to get responses numbering in the hundreds, let alone the thousands. So, we can certainly believe that the ‘amazing’ response by Benefits and Work campaigners has taken the Department of Health by surprise. But we do wonder how hard it can be to read and publish a few thousand posts over several months. Is the sheer volume of communications really the only problem? Rather than, say, the fact that most responses are overwhelmingly hostile to the green paper?

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

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

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

We’re concerned that there doesn’t appear to be any complaints procedure for the green paper consultation and we’re looking into this. But at the very least, if they don’t publish your response it will give more grounds for challenging the validity of the whole green paper consultation, which is after all a statutory process.

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.

Good luck,

Please feel free to forward or publish this email.

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

(c) 2009 Steve Donnison. All rights reserved.

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

Observer: Flagship mental health scheme faces cutbacks 04.10.09

Posted by meagenda on October 6, 2009

On Sunday, the Observer reported on cutbacks faced by Improving Access to Psychological Therapies (Iapt) programme which is failing to meet government tarkets:

The Observer | 4 October 2009

http://www.guardian.co.uk/society/2009/oct/04/mental-health-therapy-cbt-psychiatry

Flagship mental health scheme faces cutbacks

Only 400 therapists have been trained out of the 3,600 needed for the scheme

by Jamie Doward

“A flagship government strategy to train an army of therapists to get the nation off antidepressants and into work could be dramatically scaled back amid claims it is experiencing problems.”

The government claims the Improving Access to Psychological Therapies (Iapt) programme will treat 900,000 people and help about half of them to make a full recovery. It also aims to get 25,000 people suffering from anxiety and depression off sick pay and benefits by 2010/11.

But the Observer understands there are now concerns about whether these targets can be met.”

Read full article here

————————-

Related material

Tories would force jobless to work  |  Sunday Times  |  4 October 2009
http://www.timesonline.co.uk/tol/news/politics/article6860233.ece

Cameron to slash benefit payouts to 500,000 now deemed ‘unfit to work’  |  Times |  5 October 2009 http://www.timesonline.co.uk/tol/news/politics/article6861137.ece 

Iapt documents: http://www.iapt.nhs.uk/publications/

See also: The Elephant in the Room Series Two: More on MUPS

See also: Lords Debate on CBT

Posted in CBT, CBT/GET, DoH, Labour, MUPSS Project, MUS, NHS | Comments Off

ME Association: ‘Shaping the Future of Care’ response to Green Paper

Posted by meagenda on October 6, 2009

The ME Association has published a response to the July Green Paper ‘Shaping the Future of Care’ and invites comments on the Government’s proposals:

‘Shaping the Future of Care” – MEA response to the Green Paper

http://www.meassociation.org.uk/content/view/1020/161/

In July the Government presented a Green Paper to Parliament entitled ‘Shaping the Future of Care’. In it they set out proposals for reform of the care and support system and how the money could be found to pay for it. One proposal has set alarm bells ringing. This concerns the integration of “some elements of disability benefits, for example Attendance Allowance, to create a new offer for individuals with care and support needs”.

Attendance Allowance is a non-means tested state benefit payable to people 65 or over who have personal care or supervision needs. Entitlement is decided upon the level and frequency of the care and/or supervision that is needed. It is payable at a lower rate of £47.10 per week or a higher rate of £70.35 per week.

As this is a “Green Paper” it is not clear what the ‘new offer’ will be, but there is a strong implication that Attendance Allowance could be replaced with a different form of funding.

The report says that ‘people currently receiving the affected benefits at the time of reform would continue to receive an equivalent level of support and protection’. However, in using the words ‘disability benefits’ the Government has created fear that the proposals may extend to the care component of Disability Living Allowance. Although the Government has given an assurance that DLA is not under threat there are some in the charity world and amongst claimants who fear this could be the next step.

There are some proposals that are welcomed. These include the formation of a National Care Service that could end the “postcode lottery” of care and the commitment that everyone would receive some support from Government. However, much is left unsaid in the Green Paper and there are fears that the results of the changes outlined could have substantial consequences for those entitled to benefits.

Among The ME Association’s concerns are these:

Attendance Allowance (AA) and Disability Living Allowance (DLA) use care needs (and in the case of DLA, mobility needs) as indicators of the extent of someone’s disability. Those benefits were created to help with all costs of disability including lost earnings and higher fuel bills, leisure and housing costs. Many of those on AA/DLA do not make use of fee paying care services and so switching resources away from AA/DLA and into professional care would mean that many beneficiaries of those benefits could lose out.

In England, 1.26 million people receive social care services but 3.82 million receive AA/DLA. Could and would care services be expanded threefold to provide services to the 2. 56 million people who could loose their benefits?

Research shows that much of AA/DLA is spent on a broad range of informal care services such as paying for gardening, sharing lifts in cars and paying for someone to do shopping. These informal arrangements work well and bring with them a social network; friends are made and health is enhanced. This all supports the core principle of Individual Budgets that the care and benefit system has recently championed. Transferring AA/DLA to social services would involve extending bureaucratic control over peoples’ lives and reducing the right of the choice.

There is much anecdotal evidence about the standard of care received when provided by social services. Most people prefer to arrange their own carers and helpers, people they know and trust within their home and to whom there is often a growing affection. Helpers from social services often change and many claimants do not wish to have this constant turnover of people whom they see as “strangers” entering their home to provide them with care.

The advantages of AA and DLA are that they are paid through the social security system and underpinned by standard, national, transparent and legally enforceable criteria and can be challenged by formal appeal processes. This not the case with the “postcode lottery” of social services “rights”.

Neither AA nor DLA are currently means tested so all those with sufficient needs can claim them. This also means that it is cheap to administer. However the social services system for care is means tested so transferring AA/DLA money to that system may not only affect the right to care because of income or savings but also increase the cost of administration.

ME is not an easily understood illness. The number of successful appeals under the current benefits system testifies to that. We have concerns as to how claimants will fare under a new system that is locally administered.

WE’D LIKE TO HEAR YOUR VIEWS

The ME Association is listening to your views on the Green Paper proposals and how they may affect you. We shall be writing to the Government about our concerns before the consultation period on the proposals ends on 13 November 2009. Your input would help us to make our case. Following the consultation a White Paper setting out the plans will be presented to Parliament in 2010 but It is likely to be some time before the changes become law and the new care and support system is put into operation.

If you haven’t yet let us know what you think about the proposals, please let us have your comments by email meconnect@meassociation.org.uk  

or write to: Green Paper on Care, The ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF

For more information see:-
Government Green Paper

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_102732.pdf

Neil Riley, Chairman, The ME Association
29 September 2009

Posted in Benefits, Care, Consultations, DoH, Labour, ME Association, Welfare reform | Comments Off

Benefits and Work campaign: DLA is not under threat says minister

Posted by meagenda on September 29, 2009

Benefits and Work 100 Days campaign

An update from Benefits and Work from Steve Donnison

“DLA is not under threat . . . be very happy” says minister

Steve Donnison  |  29 September 2008

In what may represent a dramatic victory for campaigners, Care Services Minister Phil Hope yesterday told a reporter at the Labour Party conference that DLA is not under threat by the care green paper.

According to the Disability Now website, Phil Hope, when asked if he would abolish DLA after the election, replied:

“No. All the models that we have done have not included DLA. But if people were to make a case to integrate DLA into a comprehensive system, then I’m very happy to hear that case and have those arguments.

“DLA is not under threat and people can be very happy”.

For more details and our reaction, visit here

We know that some people will claim that the minister’s comments are evidence that campaigning to save DLA was unnecessary. It’s a claim, however, that can only be be made by ignoring such as the following.

1 Earlier this month the DWP press office said in relation to whether DLA would be scrapped: “It depends on what people say in the consultation. We need to see what people say when they respond.”

2 The same minister who is now saying DLA is not under threat wrote to MEP Liz Lynne just a fortnight ago stating that: “…this is a consultation exercise and no final decisions have been made about which disability benefits might be involved, or how they would be affected.”

3 The same minister also refused to rule out the possibility of DLA being axed in an interview earlier this month with Disability Now.

4 Last month CPAG claimed that it had received assurances from ‘senior sources’ at the DWP that DLA was not under threat. Just four days later CPAG revealed that it had “subsequently been contacted by the DWP who have said that no decisions have been taken as to the future of DLA whilst the consultation is ongoing.” CPAG then went off to lobby the Department of Health on the issue.

5 For almost two months national charities such as the MS Society have tried, but failed, to get clarification from the government as to whether DLA would be affected by the care green paper.

6 Just last week, David Behan, the Director General of Social Care at the Department of Health, published a blog post on the Big Care Debate website clearly trying to reduce the flood of hostile responses. He could have easily done so by saying outright that DLA would not be affected by the green paper – he didn’t.

The reality is that, if the government have now stepped back from an attack on DLA before the care consultation has even ended, it is because of the literally thousands of angry responses on the Big Care Debate website, the thousands of signatures on petitions, the torrent of angry letters to MPs, the motions before the Scottish and Welsh assemblies and the growing pressure from disability charities who were themselves under enormous pressure from outraged claimants.

It’s because the focus on the single issue of benefits is fast becoming a public relations disaster for a green paper signed by no fewer than six secretaries of state.

Above all, if there’s been a change of heart, it’s because you have fought so effectively to protect the benefits of disabled people.

Here at Benefits and Work we don’t know if the fight is yet over for DLA, but we do know for certain it’s only just begun for AA.

Good luck,

Steve Donnison

LATEST DLA AND AA THREAT ARTICLES

CPAG admits DLA is not safe
www.benefitsandwork.co.uk/news/latest-news/1104-cpag-admits-dla-is-not-safe

DLA threat website tries to stem hostile responses
www.benefitsandwork.co.uk/news/latest-news/1105-dla-threat-website-tries-to-stem-hostile-responses

Scrapping DLA is an option confirms DWP
www.benefitsandwork.co.uk/news/latest-news/1106-scrapping-dla-is-an-option-confirms-dwp

Is the Big Care Debate being nobbled?
www.benefitsandwork.co.uk/news/latest-news/1107-is-the-big-care-debate-being-nobbled

Scottish and Welsh assemblies campaign for DLA and AA
www.benefitsandwork.co.uk/news/latest-news/1108-scottish-and-welsh-assemblies-campaign-for-dla-and-aa

No 10 DLA and AA petition needs you
www.benefitsandwork.co.uk/news/latest-news/1109-no-10-dla-and-aa-petition-needs-you

“DLA is not under threat . . . be very happy” says government minister
www.benefitsandwork.co.uk/news/latest-news/1110-dla-is-not-under-threat—-be-very-happy-says-government-minister

Please feel free to forward or publish this email.

Benefits and Work Publishing Ltd
www.benefitsandwork.co.uk  

Company registration No. 5962666

(c) 2009 Steve Donnison. All rights reserved.

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

Charities concerned over changes to Mental Health Act in event of Swine Flu pandemic

Posted by meagenda on September 26, 2009

The charities, Rethink and Mind, have issued concerns over proposed changes to the Mental Health Act in the event of a Swine Flu pandemic. Download Consultation document and link to opinion from FT.com.  Consultation ends 7 October!

Pandemic Influenza and the Mental Health Act 1983 Consultation document

PDF icon l

 

Open:  DH Consultation: Pandemic Influenza and the Mental Health Act

http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_103683

Pandemic influenza and the Mental Health Act 1983: consultation on proposed changes to the Mental Health Act 1983 and its associated secondary legislation

Launch date: 10 September 2009
Closing date: 7 October 2009
Creator/s: Department of Health
Copyright holder: Crown
Gateway number: 12268

You are invited to comment on proposals for temporary amendments to the Mental Health Act 1983 which may be required in the event of the severe staff shortages that may be expected during an influenza pandemic.

You are invited to say whether you think these proposals are likely to be helpful. Please let us know if there are any significant issues which you think we should have included, or if we have included anything unnecessary.

Download consultation document (PDF, 193K)
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_103756.pdf

Responding to the consultation
Comments on the content of the consultation document should be sent by Wednesday 7 October 2009 to

Contact: Mental Health Legislation Team
Address: Department of Health
Wellington House
133-155 Waterloo Road
London SE1 8UG

Email:
pandemicandmentalhealth@dh.gsi.gov.uk

Opinion from FT.com

Swine flu sparks mental health law change  By Andrew Jack and Clive Cookson

Published: September 10 2009 19:33

…The plans could have wide-ranging implications for thousands of patients with suspected psychosis, depression and psychiatric problems who are “sectioned” against their will under the 1983 mental health act…

“To take away just about all the safeguards seems a serious step which removes the protections for patients and professionals. This is a much softer standard than we have now” Dr Tony Zigmond, Royal College of Psychiatrists

Read full article on FT.com here
——————–

Swine flu: Charities concerned over Mental Health Act plans

Community Care   “For everyone in social care”

In an editorial, on 11 September 2009, Jeremy Dunning reported:

Rethink and Mind issue warning over plans to alter sectioning safeguards in light of pandemic

Mental health charities have outlined concerns on proposed temporary changes to the detention of patients under the Mental Health Act in the event of a pandemic flu outbreak.

Rethink and Mind warned that patient safeguards could be compromised after the Department of Health yesterday issued consultative proposals to ensure Mental Health Act functions could be maintained should a flu outbreak trigger severe staff shortages.

The consultation, which is unusually short, closes on 7 October and would lead to the introduction of emergency legislation in the early autumn.

Proposed changes

The proposed amendments fall into three areas:-

  • Reducing from two to one the number of doctors required to comply with a number of actions under the act, including detention for assessment or treatment if the approved mental health professional making the application believes there would otherwise be an undesirable delay.
  • Extending or suspending time limits that apply to certain provisions – for instance suspending the requirement for a second opinion appointed doctor (SOAD) to approve giving a patient medication without consent if they have been in hospital for three months or more.
  • Allowing certain additional people to be approved to undertake some specific functions – for example some recently retired approved social workers may be temporarily approved to undertake the role of the approved mental health professional…

Read full editorial here

A brief article on Wednesday 23 September 2009, in Management in Practice reports:

Swine flu prompts changes to Mental Health Act

The government plans to rush through measures allowing people with suspected mental health issues to be quickly detained because of fears over staff shortages in any forthcoming swine flu outbreak, it has been revealed.

The temporary changes to the Mental Health Act, as laid out in an unusually short consultation lasting just one month, would mean it would only take one doctor, rather than two, to have a person sectioned and put on medication without their consent.

The measures could have a serious effect on the thousands of patients with psychiatric issues who currently live outside state care, meaning many could be detained against their will on the word of just one health professional.

With very little information on the proposed changes published, many mental health experts have warned the government that they risk side-lining an already vulnerable community and have called on it to spell-out the full raft of changes proposed in the consultation.  Source: Management in Practice

Posted in Care, Civil liberties, Consultations, DoH, Mental Health Act, Politics, Swine Flu | Comments Off