Summaries: MEA Board of Trustees meetings 6th and 7th of September 2010 and AGM

Summaries of ME Association Board of Trustees meetings held on 6th and 7th of September 2010 and AGM (Annual General Meeting) held on 7th September

Shortlink: http://wp.me/p5foE-39l

New MEA website link for these Summaries:

http://www.meassociation.org.uk/?p=1659

Summary of MEA Board of Trustees meetings held in September 2010

This is a summary of key points to emerge from two routine meetings of The ME Association Board of Trustees.These meetings took place at our Head Office in Buckingham on Monday afternoon, September 6 and on Tuesday morning, September 7 2010. This is a summary of the Board meetings – not the official minutes.

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

Where appropriate, there is background information relating to the issue being discussed.

The final part of the summary also contains key points from the AGM held on Tuesday afternoon, results of trustee elections, and the post AGM Board of Trustees meeting.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman by telephone link.
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman

MEA Officials:

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

Apologies:

Rick Osman (RO)
Janet Thomas (JT)

FINANCES, ADMINISTRATION, PREMISES AND STAFF

ED updated trustees on the current financial situation. This was followed by a discussion on the monthly management accounts for the period up to the end of July 2010. There has been a continuing drop in some areas of income during the first seven months of 2010 when compared to the same period in 2009 – unrestricted donations and bank interest in particular. As a result, general expenditure is still running slightly ahead of unrestricted income.

Income from fundraising has shown a continuing and welcome increase over the same period in 2009. In order to cope with the increased demand on fundraising support services a new part-time post to deal with fundraising administration has been created. Applications for the new post are now being considered.

There has also been a significant increase over the past seven months in the ring-fenced funding held by the Ramsay Research Fund.

Trustees reviewed the changes in banking arrangements, aimed at improving interest received on deposit accounts, that have been carried out in the past few weeks in relation to both unrestricted general funds and restricted research money held in the Ramsay Research Fund.

Trustees held a further short discussion on some possible changes to The MEA Memorandum and Articles of Association to take account of expected new charity legislation.

Trustees passed on their best wishes to Lucy Kingham at Head Office – who is taking maternity leave in September – and finalised arrangements for a temporary member of staff to cover her absence.

MEA TRUSTEES

Trustees had intended to spend part of Monday afternoon interviewing a potential new trustee but he was unable to attend. This interview was therefore postponed to a later date.

As reported previously, Janet Thomas had to withdraw from the 2010 trustee election due to ill health but will remain as an observer. It was agreed that she has been an excellent trustee and it is hoped that she will re-apply if her health improves.

We are still able to increase the number of co-opted trustees – so we are keen to hear from anyone who would like to discuss the possibility of joining the MEA in this role. Applications are welcome from people with ME, carers, and anyone who has a skill which they feel could be of benefit to the charity. In order to proceed with an application, non- members would have to become members of the MEA.

FORWARD PLANNING

A further short discussion on the future growth of the MEA was held on Tuesday. This work includes the expansion of the services we already provide and new services that we would like to provide if/when the financial situation allows us to do so.

FUNDRAISING INITIATIVES

The MEA has to raise funds on top of membership subscriptions, which currently only provide around half of the general income that is required to fund the basic running of the charity and Head Office administration. We are also facing a situation whereby people are reducing donations to the charity sector. At the same time, demand on support and information services is increasing, especially in relation to benefit and employment information now that the welfare/benefit reforms and difficulties associated with the introduction of the ESA are taking effect. Trustees and staff therefore have to devote a significant part of their time to boosting fundraising activities in order to maintain our current level of services.

Northern Ireland fundraising for ME/CFS research. Mid Ulster Vintage Vehicles Tractor and Car Club: Sponsored trek from Moneymore to Castlerock-Limavady

TB reported on the outcome of the Mid-Ulster Vintage Vehicles Club’s 100-mile vintage tractor and car trek, which this year has raised a substantial sum for the Ramsay Research Fund. The event started in Moneymore on Saturday 23rd July and finished the following day in Castlerock-Limavady. A tremendous effort has been put in by the O’Neil family – father John, sons Ronald and Richard and daughters Jacqui and Fiona. Following a request from the organisers, TB and CS will be travelling to Northern Ireland later this month for the presentation ceremony.

More information on this important fundraising event appeared in the July issue of ME Essential magazine.

2010 London Marathon

The MEA paid for two guaranteed places in the 2010 London Marathon – so we had two runners taking part as well as several other people running who raised money for The MEA. We would welcome offers from anyone who wants to raise funds in 2011 but we are not paying for any guaranteed places next year.

Amazon Walk to raise funds for a tissue and post-mortem/brain bank:
BS reported on the return of her son Ed, following completion of his epic Amazon Walk. Ed has walked solidly for 859 days and covered around 6,000 miles. He is the first person to carry out what has been an outstanding physical and mental challenge and he will quite rightly enter the history book of hazardous expeditions.

On his return in early August Ed appeared on a number of radio and television programmes – including GMTV, BBC Breakfast Time and the BBC One Show – and his story has been given extensive coverage in the UK and international press. A full summary of media coverage can be found on the MEA website news section.Ed’s progress can still be be seen on his Amazon Walk blog >> http://www.walkingtheamazon.com 

Trustees discussed a number of ideas for possible fundraising events following his return home. One of Ed’s first talks on the Amazon expedition will be given to a meeting of the Transglobe Expedition Trust at the Royal Geographical Society in November, where he will be joined by the distinguished explorer Sir Ranulph Fiennes and Michael Palin.

Ed Stafford has a fundraising page for MEA/RRF research here. Around £8000 has been raised so far.

Vegepa for ME scheme The Vegepa for ME Scheme is proud to announce a new partnership with the ME Association’s Ramsay Research Fund to run alongside their long-standing enterprise with ME Research UK in a joint effort to improve the lives of ME sufferers. From August 2010, The Scheme, which has donated over £36,000 since it started up in 2006, will be raising money for crucial biomedical research undertaken by both of these ME charities. The Vegepa for ME Scheme, devised and run by Lynne Kersh, mother of a daughter with long-term ME, has a secure website which sells clinical-grade, patented Vegepa and its various sister products.

MEA website shopping  This facility on the MEA website home page provides a direct link to well known shops and on-line stores. Purchasing goods on-line from companies such as John Lewis, M&S, and Amazon via the MEA website is simple and we receive a commission of up to 15% from the shop at no charge whatsoever to the purchaser. Please give it a try! It only takes a few seconds to register for the service on the Easyfundraising.com website.

Mobile phone and ink cartridge returns and trolley coins MD reported on the latest financial returns from these on-going fundraising initiatives. Returns of ink jet cartridges continue to be a very successful source of income – so please keep sending them in. Trolley coins can be ordered using the pdf ORDER FORM on the MEA website: http://www.meassociation.org.uk, or the literature order form insert in the August issue of ME Essential magazine, or by phoning MEA Head Office on 01280 818964/818968. Envelopes for the return of ink cartridges and mobile phones can be ordered using the literature order form.

Christmas cards We have three cards for sale this year – details and pictures in the October issue of ME Essential magazine. A pdf order form can be downloaded the MEA website by clicking here.

Blue ribbons for ME Awareness These can be obtained using the pdf Order Form on the MEA website. Single ribbons cost £1 with a discount for bulk orders over 20.

Summer Raffle This was drawn at the end of July and the winner of the first prize kindly sent the same amount back to the MEA!

Fundraising information Fundraising leaflets are available for use at events and for approaches to sponsors and requests for donations. Free copies can be obtained by phoning MEA Head Office on 01280 818968.

PARLIAMENTARY MATTERS

APPG CS updated trustees on events that had taken place to set up a new APPG on ME following the General Election. This involved finding a new Chairman because Dr Des Turner had retired at the election, as well as finding a small group of other parliamentarians willing to take up the post of Treasurer, Secretary etc.

An inaugural meeting was held on 8 July – shortly before Parliament broke up for the long summer holidays. Those present agreed that David Amess MP would take on the role of Chairman. Other officers elected: Annette Brooke MP (Vice Chair); John Leech MP (Secretary) and Martin Vickers MP (Treasurer). A copy of the Minutes for this meeting can be found in July ME Essential magazine and on the MEA website. The current list of members of the new APPG can be found here.

A planning meeting was proposed for September but no date has yet been fixed.

Further details of the agenda, time, venue for the next full APPG will appear on the MEA website as soon as they become available. It is advisable to check with the MEA website the day before APPG meetings in case any late changes are made.

Neil Riley, Chairman of the MEA, wrote to Dr Des Turner to express our thanks for chairing the APPG and wishing him a happy retirement from Westminster.

The August MEA website poll asked people what they felt was the most important topic for the new APPG on ME to take on. Votes were as follows:

XMRV: 913
Benefits: 442
Medical Education: 274
MRC research: 100
NHS Services: 78
NICE guideline review: 74
Severely affected: 47
Children: 15
None: 7

These results have now been forwarded to David Amess, along with a summary of recent developments relating to benefits, research, NICE guidelines, Lightning Process research etc.

APPG Inquiry into NHS Services Trustees previously agreed to help fund the production of some paper copies of the report because we believe this information should be readily available to members of the public who do not have internet access. A paper copy of the final report has been added to the MEA literature list (as a free item) in ME Essential.

The report can also be downloaded from the MEA website or the APPG website: http://www.appgme.org.uk

Countess of Mar’s Group: FORWARD ME The meeting planned for Wednesday 7th July, at which the group intended to discuss a range of current issues, had to be cancelled due to the Countess of Mar being unwell. A new date has not yet been arranged for this meeting.

The Forward ME Group website >> http://www.forward-me.org.uk has information about the group and archives of minutes from past meetings, including a detailed summary of the presentation on benefit issues (ICB and ESA in particular) from Dr James Bolton, Deputy Chief Medical Adviser at the DWP, to the last meeting.:

BENEFITS

Trustees discussed the current situation regarding benefit problems, the changeover from ICB to ESA starting in October, and the Independent Review of the WCA. A copy of the MEA submission to this review can be found on the MEA website here.

NICE GUIDELINE REVIEW

CS reported on correspondence with NICE regarding the date of the proposed guideline review. A copy of our most recent reply from NICE dated 23 August can be found on the MEA website here.

RESEARCH AND RAMSAY RESEARCH FUND (RRF)

RRF: XMRV and MLV: Trustees discussed the latest XMRV research results from validation studies that have been reported in the medical journals – in particular the results from the study by Lo et al that supports a link between retroviral infection (XMRV or MVL) and ME/CFS. The MEA summary and statement on this paper can be found in the website news section here.

The role of the MEA Ramsay Research Fund in supporting UK research groups who want to try and replicate/validate the American findings, or do other relevant work on XMRV was discussed. CS reported on the various contacts and discussions he is continuing to have with virologists on how best to take this research forward in the UK – including the current initiative to retest anyone here in the UK who has sent a blood sample to the US laboratory. The MEA has issued regular website position statements on XMRV and will continue to do so. We have also written to Sir Liam Donaldson, the previous Chief Medical Officer at the Department of Health, about the XMRV research findings and the implications for blood donation and blood transfusion. We have now written to Dame Shirley Davies, the new acting CMO, about extending the blood donation ban to people who have recovered from ME/CFS. A reply from the new CMO states that the current ban will be extended to include anyone with a past history of ME/CFS as from 1 November. This will cover the whole of the UK.

CMO correspondence.

RRF: Professor Julia Newton et al, University of Newcastle CS reported that assessments have been performed on 25 subjects who have been recruited via the Northern Regional ME/CFS Clinical Service. The initial assessment procedures include testing autonomic nervous system function, muscle performance, exercise physiology and body composition (ie the amount of fat and muscle present). The next phase of the study will involve the use of magnetic resonance spectroscopy to assess the way in which their muscle is producing energy and lactic acid. Further information on this study can be found in the August 2009 issue of ME Essential magazine.

RRF funding = approximately £13,800.

Newcastle University Fatigue Research Symposium: Dr Shepherd met Professor Newton at this research meeting which was held on Thursday 10th June at the University of Newcastle. There were presentations from Professor Newton and colleagues on muscle and autonomic dysfunction research involving people with ME/CFS. The meeting focussed on muscle research and considered the role of fatigue in other medical conditions such as HIV and other infections, mitochondrial myopathies, primary biliary cirrhosis and Sjogren’s syndrome. The session on HIV and fatigue covered the important issue of muscle mitochondrial damage following antiretroviral therapy (AZT) and this is obviously going to be very relevant if it turns out that XMRV or MLV is a causative factor in ME/CFS and clinical trials involving antiretroviral therapy take place. A summary of the Newcastle meeting is available in the July issue of ME Essential magazine and on the on the MEA website here.

An abstract from a new research paper from Professor Newton’s research group, which relates to an investigation into cardiac (heart) and skeletal muscle can be found on the MEA website here:

RRF: Factors involved in the development of severe ME/CFS The results of this questionnaire based research, carried out by Dr Derek Pheby and Dr Lisa Saffron, and funded by The ME Association, have been published in an open access on-line journal. More information, including a link to the paper, can be found on the MEA website here.
There is a vast amount of useful information in this paper for anyone with severe ME/CFS, especially those who are involved in disputes over benefits, social care etc.

RRF funding = approximately £30,000.

RRF: Gene expression research Results from a study into gene expression carried out by Professor John Gow and colleagues in Glasgow, and funded by the RRF, were published in the open access scientific journal, BMC Medical Genomics.

Although RRF funding has now finished, we remain in contact with Professor Gow and colleagues in Glasgow regarding further work in this important area.

RRF funding = approximately £38,000.

RRF: Post-mortem tissue bank feasibility study CS updated trustees on phase two of the feasibility study into the setting up of an ME/CFS brain and tissue bank. This has included a focus group meeting which allowed a group of people with ME/CFS to freely express their views on the various ethical, legal and practical issues surrounding tissue and post-mortem research. Work on phase two commenced in February and is being carried out by Dr Luis Nacul and colleagues at the London School of Hygiene and Tropical Medicine. An article summarising all the various MEA post-mortem research initiatives that are taking place can be found on the research section of the MEA website. An article on phase two of this research appears in the February 2010 issue of ME Essential.

Trustees also discussed the various post-mortem research examinations, along with plans for publication, that we have been involved with. CS reported that results from four post-mortems will be presented and discussed at an international conference later in the year.

The next meeting with the researchers involved will take place on September 9th.

RRF funding = approximately £14,000.

ME Observatory Steering Group The final stages of this work are proceeding to plan with several research papers being prepared or submitted for publication. The last MEO meeting discussed the various options for continuing some of the key work being done by the MEO – the Disease Register in particular – when Lottery funding ends in September. The Disease Register now has around 500 people with well characterised ME/CFS – new cases recruited from primary care and others with chronic severe disease via the CHROME database – and it is hoped that this important work will continue and be of use to the researchers in due course.

The ME Observatory has arranged a half day Dissemination Conference that will also cover issues relating to work, welfare and DWP benefits. This event has CPD (continuing professional development) accreditation and will take place in London on Saturday afternoon, 25th September. A senior person from the DWP that deals with ESA will be giving one of the presentations at this event.

Two MEO workshops will be taking place on 28 September (in Sheffield) and 29 September (Birmingham). The next MEO Steering Group meeting will be held on September 9th.

Medical Research Council (MRC) Expert Group on ME/CFS Research Two follow up meetings relating to the two day research workshop that was held on November 19th and 20th 2009 have been held. The minutes of the last meeting, which outlines priorities identified for MRC funded research, can be found on the MRC website. Summaries of the presentations and slides used at the November workshop are available on the MRC website. Further information on the MRC Expert Group can be found on page 12 of the May issue of ME Essential and on the MEA website here.

We are now awaiting a statement from the MRC as what action they propose to take on the recommendations for research priorities that have been made by the Expert Group.

Lightning Process Trustees held a further discussion on a new research study that has been announced into the use of the Lightning Process. Costing £164,000, the feasibility study will investigate how children and adolescents could be involved in a randomised controlled trial that will assess the Lightning Process and compare it to specialist medical care. Not surprisingly, a number of concerns have been raised about the possible use of children and adolescents in this type of study and we are discussing this with our colleagues in other ME/CFS charities. As a result of these discussion the MEA and the Young ME Sufferers Trust (Tymes Trust) issued a joint statement of concern, which can be found here.

This was sent to the Department of Health with a request that it should be forwarded to the ethics committee that is dealing with the application. The DoH have refused to do so – a decision which we believe is unacceptable.

FINE AND PACE Trials Responses to publication of the results from the FINE trial have appeared on the BMJ website, including one from The MEA. Trustees discussed the way in which results from the MRC funded FINE and PACE trials are likely to affect a review of the NICE guideline on ME/CFS. Responses to the results of the FINE trial can be accessed via the MEA website here.

We understand that results from the PACE trial will be reported to the BACME conference in October.

Biochemical and Vascular aspects of paediatric CFS

Trustees briefly discussed the University of Dundee research findings relating to infection and inflammation in children with ME/CFS that had received widespread media publicity on the BBC on Tuesday morning. CS also did some BBC interviews during the day, including Radio 5 Live during their lunchtime news programme. More information on this research can be found on the MEA website.

Sleep Disorders Conference CS has been invited to attend an important clinical and research conference in London in December that will be discussing all aspects of sleep disorders.

*
The MEA is now in a position to fund new research in addition to current commitments and the funding that has been set aside to help set up a UK tissue and post-mortem bank. Information on the work of the RRF can be downloaded from the research section of the MEA website.

SCOTTISH MATTERS

ED reported on publication by the Scottish Health Department on 1 September of clinical guidance on ME/CFS for doctors in Scotland – a document that had originally been based based on the MEA purple booklet for health professionals: ME/CFS/PVFS: An Exploration of the Key Clinical Issues. Publication of the Scottish Public Health Network Needs Assessment has not yet taken place As noted in previous MEA Board meeting reports, the timescale for both projects had to be re-organised in 2009 and progress has been considerably delayed as a result.

Trustees discussed the content of the Scottish Good Practice Statement and the feedback so far from patient representatives that have been involved in their development. A preliminary MEA statement can be found on the MEA website here.

ED will be attending a meeting of the Cross Party Group committee on Wednesday 8th September and the full meeting of the CPG on Wednesday 22 September where the documents will be discussed.

MEA ANNUAL MEDICAL MEETING IN CARDIFF

Trustees finalised arrangements for our annual medical meeting. This is an open and free meeting in an ‘ME Question Time’ format that we rotate around the country. Panel members will be Jane Colby (Tymes Trust), Sue Luscombe (Dietician), Neil Riley (Chairman, MEA), Dr Charles Shepherd (Hon Medical Adviser, MEA) and Dr Nigel Speight (Hon Paediatric Adviser, MEA). This year we are co-operating with the Welsh group WAMES and holding the meeting in Cardiff on Saturday 23rd October. More information can be found on page 3 in the July issue of ME Essential magazine or on the MEA website.

If any local groups are interested in co-hosting this meeting in 2011 please let us know.

MEA LITERATURE

The latest MEA Management File on Fatigue (involving both brain and muscle) appears in the July issue of ME Essential. A new Management File on the subject of XMRV and MLVs is now being prepared for the October issue of ME Essential.

An updated leaflet on dental anaesthetics has been prepared by Dr Richard Cantillon, our dental adviser.

The MEA now has almost 70 leaflets and booklets covering all aspects of research, diagnosis and management.

The MEA Management Report contains the final analysis of data from around 3500 on-line questionnaires and 750 paper questionnaires. The overall response makes this the largest ever survey of patient and carer opinion about management issues that has ever been undertaken here in the UK, possibly in the world. The report was distributed free as part of the May issue of ME Essential. It can also be downloaded from the MEA website – where over 3,000 people have already viewed the report. Extra paper copies can be obtained from the MEA at a cost of £2.50p. This research was funded by the Ramsay Research Fund – so any profits will go to the Ramsay Research Fund.

The October 2009 version of ME/CFS/PVFS – An Exploration of the Key Clinical Issues is continuing to be well received. This 36 page booklet for both doctors and people with ME/CFS contains references to all new research and treatment developments up to October 2009, including a prominent boxed section on the XMRV research findings. The MEA medical guideline is therefore the only substantial publication of this nature covering research, clinical assessment and management to also include XMRV research. As before, The MEA is willing to make a reduction in price for bulk orders from local groups, other ME/CFS charities and PCTs.

MEA literature can be obtained using the website pdf ORDER FORM or the 8-page order form insert in the July issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.

MEA WEBSITE

Trustees discussed various matters relating to The MEA website.

The regular on-line survey feature remains very popular. Previous polls have asked about attitudes to post-mortem research (February 2009); GP skills and knowledge (March 2009); how much people have spent on services/treatments outside the NHS (May 2009), Vaccines as trigger factors (May 2010)and opinions on DWP medical assessments that have been carried out by ATOS. The current (September) question asks for opinions on how employers view ME/CFS . Results from all the previous on-line surveys can be found on the MEA website.

If anyone has any suggestions for future website polls please let us know.

ME CONNECT

Trustees reviewed the administration of telephone calls and emails received by ME Connect, our information and support service. Up to the end of July 2010 the service dealt with 1151 emails and 1727 phone calls – a total of nearly 3000 enquiries so fat this year. A recent check on telephone response times audit indicated that almost all calls were being answered either immediately or within a few minutes. However, there will always be occasions when a delay is inevitable due to the volunteer on duty having to deal with a difficult call.

ME Connect, our telephone information and support service, operates every day of the week from 10am – 12 noon; 2pm – 4pm and 7pm – 9pm. Tel: 0844 576 5326.

We are always keen to hear from anyone who would like to join ME Connect as a volunteer. If you are interested please contact the MEA via ME Connect

This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

ME ESSENTIAL MAGAZINE

TB reported on plans for the October issue of ME Essential. Any remaining copy must be with Tony by the middle of September. We are aiming for publication in the middle of October.

The Editorial Board is always happy to receive constructive comments about any aspect of the magazine.

NEW SHORT FILM ON ME : ‘ALL ABOUT ME’

This is a new short documentary film (in two parts) about Laura Fursland, a very promising young music student who developed ME following an episode of glandular fever, with complications, at the age of 18. The film deliberately concentrates on Laura’s story and how it has affected all aspects of her life – in particular how her life is now “on hold” and her plans to go to university to study music.

The medical input – covering key symptoms, possible causation, drug treatments and the losses/social isolation of living with ME at this age – is briefly inserted at various points. The film is not intended to focus on the medical and science behind ME/CFS.

This film was made by Teesside University with information being provided by the MEA.

McCarrickFilms  | 14 August 2010
(Part 1/2) A documentary about M.E sufferer Laura Fursland. A promising young music student…

McCarrickFilms | 13 August 2010
(Part 2/2) A documentary about M.E sufferer Laura Fursland. A promising young music student…

 

MEA HEAD OFFICE: VOLUNTEERS WANTED

In addition to the telephone volunteers who deal with ME Connect enquiries, we have a small number of dedicated volunteers who come into the MEA office in Buckingham on a regular basis to help with various aspects of our work. If you know of anyone who lives locally to Buckingham, and would like to come into the office and help out on a flexible basis please get in touch with Gill Briody. The MEA office is modern, on the ground floor of an out-of-town site, has disabled access, and good free car parking facilities on site.

DATE OF NEXT BOARD MEETING

Fixed for Monday and Tuesday, 15th and 16th November 2010.

AGM AND TRUSTEE ELECTION RESULTS

The Annual General Meeting of the charity took place on Tuesday 7 September at the Head Office in Buckingham.

Present

Ewan Dale
Mark Douglas
Neil Riley by telephone link
Charles Shepherd
Barbara Stafford

Tony Britton
Gill Briody

Agenda

The minutes of the previous AGM were agreed.

Neil Riley presented the Chairman’s report

Ewan Dale presented the Treasurer’s report

Auditors for the financial year ending in December 2010 were appointed

Trustee Elections

Ewan Dale: 389 votes in favour, 12 votes against
Charles Shepherd: 410 votes in favour, 2 votes against

11 abstentions
5 votes not accepted due to membership not being renewed
11 votes not accepted as received after the closing date

Both candidates were elected

A full report on the AGM will appear in the October issue of ME Essential

POST AGM BOARD MEETING

Neil Riley re-elected as Chair
Ba Stafford re-elected as Vice Chair
Ewan Dale re-elected as Treasurer
Gill Briody re-elected as Company Secretary

Summaries prepared by Dr Charles Shepherd, Trustee

Benefits reform: Media coverage BBC and Times

Benefits reform: Media coverage BBC and Times

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

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

Times  |  Rosemary Bennett, Alice Fishburn  |  2 July 2010

Sick-note reforms ‘are in danger of collapse’

http://www.thetimes.co.uk/tto/news/politics/article2585543.ece

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

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

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

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

Full article here

Times  |  2 July 2010

http://www.thetimes.co.uk/tto/news/politics/article2585558.ece

Emma Webb

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

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

Full article here

BBC News  |  28 June 2010

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

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

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

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

Read full article here

BBC News  |  Politics  |  28 June 2010

Q&A: Incapacity benefits explained

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

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

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

So what are the basics?

What are the benefits…

Read full article

BBC News |  Business  |  22 June 2010

Budget: Radical shake-up of benefits to cut spending

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

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

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

Read full article here

Budget announces DLA reform

Budget announces DLA reform

Shortlink: http://wp.me/p5foE-2V4

Update:

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

Disability allowance exists for a reason

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

There is a comment section, read full article here

 

Action for M.E.  |  22 June 2010

Budget 2010

Today’s budget announces DLA reform

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

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

http://www.hm-treasury.gov.uk/junebudget_documents.htm

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

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

E-mail our Policy Officer, Tristana Rodriguez at tristana.rodriguez@afme.org.uk or our InterAction team at interaction@afme.org.uk  with your views.

Summary ME Association Board of Trustees meetings 14, 15 June 2010

Summary of ME Association Board of Trustees meetings 14 and 15 June 2010

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

ME Association  |  17 June 2010

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

These meetings took place at our Head Office in Buckingham on Monday afternoon, June 14th and on Tuesday morning, June 15th 2010.

This is a summary of the Board meetings – not the official minutes.

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

MEA website: http://www.meassociation.org.uk

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman

MEA Officials:

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

Apologies:

Rick Osman (RO)
Janet Thomas (JT)

FINANCES, ADMINISTRATION, PREMISES AND STAFF

ED updated trustees on the current financial situation. This was followed by a discussion on the monthly management accounts for the period up to the end of April 2010. There has been a drop in some areas of income during the past few months when compared to the same period in 2009 – unrestricted donations and bank interest in particular. As a result, general expenditure is currently running slightly ahead of unrestricted income.

However, income from fundraising has shown a significant and welcome increase over the same period in 2009 and in order to cope with the increased demand on fundraising support services it was decided to create a new part-time post to deal with fundraising administration with immediate effect. Details about this new post will be placed on the MEA website when trustees have agreed the job description.

There has also been a significant increase over the past twelve months in the ring fenced funding held by the Ramsay Research Fund for research purposes.

Trustees once again reviewed the current ‘best buys’ for interest-gaining options in relation to money kept in the business and Ramsay Research Fund deposit accounts.

The new computer equipment for Head Office staff is now fully installed and working in a satisfactory manner. GB reported that a few minor problems have still to be resolved.

Trustees discussed some possible changes to The MEA Memorandum and Articles of Association to take account of expected new charity legislation.

Trustees passed on best wishes to Lucy Kingham, at Head Office, who will be taking maternity leave in October.

FORWARD PLANNING

Trustees held a further discussion on the future growth of the MEA. This work includes looking at areas of priority for expansion of the services we already provide and new services that we would like to provide if/when the financial situation allows us to do so. Continue reading

Two EDMs: Policy intentions toward Carers; Working Carers

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

EDM 246: Working Carers  Cooper, Rosie 16.06.2010

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

From Carer Watch  |  15 June 2010

http://carerwatch.com/

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

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

EDM 128

CARERS
02.06.2010

Hepburn, Stephen

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

Also:

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

EDM 246

WORKING CARERS
16.06.2010

Cooper, Rosie

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

 

Early Day Motions (EDMs)

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

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

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

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

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

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

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

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

From Steve Donnison Benefits and Work

15 June 2010

Dear Subscriber,

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

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

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

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

disabilityharassmentfi@equalityhumanrights.com

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

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

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

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

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

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

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

ESA Success….YESSSS!

Another heartfelt THANKS to B&W

DLA tribunal success

Good News

Decision changed – appeal cancelled

ESA appeal

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

Good luck,

Steve Donnison

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

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

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

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

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

From Steve Donnison Benefits and Work

14 May 2010

Dear Subscriber,

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

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

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

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

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

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

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

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

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

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

The editions cover a wide range of issues, including:

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

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

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

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

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

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

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

Good luck,

Steve Donnison

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

and from 17 May:

Apologies – we are now back online

17 May 2010

Dear Subscriber,

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

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

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

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

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

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

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

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

Beyond my wildest dreams

Good luck,

Steve Donnison

Action for M.E. Election manifesto

Action for M.E. Election manifesto

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

Note: This site operates independently of any patient organisation. The publishing of material on this site does not imply endorsement or recommendation.

Action for M.E. News

http://www.afme.org.uk/news.asp?newsid=761

Election manifesto video launch
23 February 2010

M.E. manifesto video goes live

Today Sir Peter Spencer, Chief Executive, Action for M.E., launches a video urging people with M.E. and their family and friends to use our Election Manifesto for M.E. to lobby local Parliamentary candidates.

Tristana Rodriguez tristana.rodriguez@afme.org.uk, our Policy Officer, is keen to hear from anyone who forwards the manifesto to their MP, or potential MP, and receives a response.

The manifesto has been produced in partnership with the Association of Young People with M.E. (AYME) and in consultation with people who have the illness.

Initial responses to the document have already been received from the three main political parties. Action for M.E. has written back, calling for greater commitment to the issues which matter to people with M.E.

 

Parties respond to M.E. manifesto
19 February 2010

http://www.afme.org.uk/news.asp?newsid=757

All three main political parties have answered calls by Action for M.E. and the Association of Young People with M.E. (AYME) to outline their election pledges for people with M.E.

Responses to our Election manifesto for M.E. have now been received from Labour, the Conservatives and Liberal Democrats.

Labour has focused on health and welfare, increasing Access to Work and reassessing Incapacity Benefit or Income Support claimants to move them on to Employment and Support Allowance.

The Tories lead on speeding up drugs appraisal procedures, before moving on to single health and social care assessments and the introduction of a single integrated back-to-work programme for everyone on out-of-work benefits.

The Liberal Democrats, who are still working on their election manifesto, concentrate on investing in support for children, especially in terms of education.

Commenting on the responses, Action for M.E.’s CEO, Sir Peter Spencer says:

“I would like to thank the three parties for providing their responses to the manifesto for M.E. but I am very disappointed to see that they have each failed to address many of the key issues.

“We understand that certain policies may still be in development which may explain why our manifesto priorities have not been given the explicit emphasis we would expect. Perhaps these omissions will be resolved as the party policies develop.

“To this end, we will continue to lobby at a national level, and we would urge supporters of the manifesto to do the same with their local Parliamentary candidates. We want to see the next Parliament make a genuine and powerful commitment to tackle the huge problems faced by people with M.E. and their families and to remove the inequalities which have been overlooked for far too long.”

Mary-Jane Willows, CEO of AYME, comments:

“Whilst I am pleased that the responses were made they are all sadly lacking in content and substance. They still fail to acknowledge the huge shift in awareness and services required if the needs of children and young people with M.E. are going to be fully met.

“Individuals with M.E., their carers, parents and partners now need to take the manifesto to lobby all their Parliamentary candidates who then can’t fail to realise the scale of the issues this marginalised patient population is faced with in health, education, social care, benefits and employment.

“Ignoring this significant patient population must end now and be replaced with a clear and robust strategy that will increase awareness and support across the board.”

The charities are calling on local support groups, individuals with M.E., their carers, friends and others to join us in lobbying parliamentary candidates to sign up to the pledges in our election manifesto for M.E.

For free copies of the manifesto to send to your MP or local Parliamentary candidate – plus a sample campaign letter, please contact our Policy Officer, Tristana Rodriguez tristana.rodriguez@afme.org.uk tel: 0117 9301325 or Katie James katie@ayme.org.uk, from AYME, tel: 01908 379737, stating how many copies you need.

Documents:

Video
Election Manifesto
Sample Campaign Letter

Responses from three main political parties

Labour Response
Conservative Response
Liberal Democrat Response

MEA: Summary of APPG on ME meeting 10 March 2010

ME Association: Summary of the All Party Parliamentary Group on ME (APPG on ME) meeting on 10 March 2010

Note: This is a personal summary prepared by Dr Charles Shepherd on behalf of the ME Association and not the official Minutes which will be published later.

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

MEA SUMMARY

This is a brief personal summary of the last meeting of the current APPG on ME before the general election takes place, almost certainly on 6th May.

The meeting was a friendly and harmonious occasion, which terminated in a vote of thanks to Dr Des Turner (who is retiring from parliament) and all the parliamentarians who have been involved with the current APPG.

After the election a new APPG on ME will have to be formed – provided there are sufficient parliamentarians willing to do so.

A more detailed account of this meeting will appear in the minutes and the transcript, which normally takes a few weeks to prepare, approve and publish.

VENUE

Committee Room 18 at the House of Commons.

The meeting lasted from approximately 1.30pm to 3pm.

ATTENDANCE

Parliamentarians

Dr Desmond Turner MP (Chair)
Countess of Mar

Parliamentary office representatives

Nick Osborne

Secretariat

Sir Peter Spencer (Action for ME)
Tristana Rodriguez (Action for ME)
Dr Charles Shepherd (MEA)

Organisations and individuals

Jane Colby – Tymes Trust
Jill Cooper – Warwickshire Network for ME
Christine Harrison – BRAME
Doris Jones – 25% Group
Bill Kent – reMember
Jill Pigott – Worcestershire ME Support Group
Mary Jane Willows – AYME

Ciaran Farrell
Michelle Goldberg
Augustine Ryan

Apologies to anyone whose name is missing from this list. I will include if you let me know.

AGENDA

There were two main items on the Agenda.

Firstly, a presentation from Vanessa Stanislas, CEO at the Disability Alliance, on issues surrounding disability poverty.

Secondly, publication of the final report which summarises the work and findings of the APPG Inquiry into NHS service provision for people with ME/CFS.

VANESSA STANISLAS: TACKLING DISABILITY POVERTY

VS started off by describing the work of the Disability Alliance. This is an organisation that brings together a wide variety of charities with whom they work collaboratively on issues relating to disability – state benefits and financial issues in particular.

A key part of their work at present is preparing for the general election and the need to highlight to all political parties the important issue of disability poverty.

To take this forward the DA has prepared a ‘Disability Manifesto’ titled Tackling Disability Poverty. Copies of this publication were circulated to all present and it is also available on the DA website at:

http://www.disabilityalliance.org/damanifesto.htm

VS went through some of the key facts and evidence about disability poverty that are referred to in the manifesto:

Disabled people are twice as likely to live in poverty as other citizens
29% of disabled children live in poverty in the UK.
A third of disabled adults of working age live in poverty.
50% of disabled adults of working age are not in paid work.
29% of pensioners in households with one or more disabled adults who were not in receipt of disability benefits lived in poverty.
80% of people with mental health problems and learning difficulties are not in employment.
Half of all carers subsidise the cost of the disabled person they support because of inadequate disability benefits.
And with the UK now experiencing a recession there is a real risk that the economic downturn will lead to a reduction in action to tackle poverty in those who are sick or disabled.

VS also referred to a number of very practical issues that disabled people have to face, all of which can have a significant effect on their income levels:

Perverse and complex rules that govern eligibility to DWP benefits – people do not understand the benefit system.
The resulting low take up of benefits that people may be entitled to.
Employer discrimination.

A number of recommendations are being put forward by the DA to help reduce disability poverty with the aim of eliminating disability poverty by 2025. These include:

• Measuring disability poverty as a unique form of poverty.
Excluding disability benefits from ‘income assessments’, or including the extra costs of living that disabled people experience.
Measuring disability should be deconstructed by age group.

Following her presentation there were numerous questions and points. These included:

Fuel poverty and the need to extend the extra heating allowance to sick and disabled people under pension age.

Des Turner said that the parliamentarians were pressing hard on this in relation to the discussions on Social Tariffs in the Energy Bill that is now going through parliament.

NEA link: http://www.nea.org.uk/charity-calls-for-energy-bill-to-address-injustice-of-poor-paying-more-for-fuel

Problems relating to the differences between the medical model of disability (ie how illness disables people) and the social model of disability (ie how the world sees and deals with disabled people regarding the provision of services etc).

Problems with ATOS – the agency that carries out medical examinations and assessments for DWP benefits.

http://www.atoshealthcare.com/index.php?option=com_content&task=blogsection&id=14&Itemid=288&Itemid=288 

The Countess of Mar pointed out that an ESA review was taking place and this required representation from the ME/CFS charities
Tremendous differences in the knowledge and attitude that is expressed about ME/CFS when cases are brought to tribunals. Des Turner stated that this was an important part of his workload. He supported these concerns about lack of knowledge regarding both the illness and the actual regulations.
The political debate over targeting what money there is in the benefit pot at people most in need (ie means testing more benefits). Or do the problems this could cause mean that there should still be universal benefit provision – regardless of income and capital.
Sick and disabled children.
Social Fund – where grants have now been replaced by loans. This means that people are very reluctant to replace key items that break down.
Is there enough evidence of discrimination and bad practice in the way the system works to force a judicial review?
Disability poverty as it affects carers.

APPG REPORT ON THE INQUIRY INTO NHS SERVICES

The report is now finished. Copies were circulated to all present and a link to an electronic version has been placed on the MEA website.

Open APPG on ME Press Release: March 10 APPG Inquiry Press Release

Open Final Report:

APPG on ME Final Report Inquiry into NHS Service Provision for ME/CFS March 2010

Des Turner stated that the conclusions and recommendations are exactly the same as in the preliminary report that was circulated at the last meeting in December. The text of the final report expands on the justification for them.

Copies of the report, along with an appropriate accompanying letter, will now be circulated to:

Chief Medical Officer, Sir Liam Donaldson
DWP
Primary Care Trusts (PCTs) and Strategic Health Authorities (SHAs)
Medical Royal Colleges
Other professional bodies: Royal College of Nursing
etc

Des Turner agreed that a list of PCTs who did and did not reply to the questionnaire should be made available on the APPG website. ( http://www.appgme.org.uk/inquiry/inquiry.html )

Des Turner circulated a letter he had sent to Mike O’Brien MP, Minister of State, Dept of Health, on the need for biomedical research, along with the minister’s reply.

The meeting thanked Nick Osborne for all the work he had done over the past year or so in collecting and analysing the evidence and drafting the various versions of the report.

A short discussion followed. Key points included:

Jill Pigott said training of NHS staff was vital and information about a range of ME/CFS conferences and meetings should be made available to NHS staff via the British Association for ME and CFS (BACME) and on their website.

Christine Harrison referred to the continuing problems in Norfolk in trying to re-establish a consultant led service following the retirement of Dr Terry Mitchell. She pointed out that yet another Working Group had been set up. The local patent representatives had a number of concerns about the report they have received.

Peter Spencer referred to the need to try and get the Select Committee on Health involved with the issue of NHS service provision.

Charles Shepherd pointed out that local political initiatives could help here and referred to the situation in Gloucestershire where the NHS Foundation Trust had just been heavily criticised by the county council’s health overview and scrutiny committee over lack of consultation on a proposal to cut 200 hospital beds in Cheltenham and Gloucester. As a result this proposal is now on hold. BBC link:

http://news.bbc.co.uk/1/hi/england/gloucestershire/8557590.stm

Jane Colby referred to children’s services and the need to take note of surveys of what children and young people want – as had been carried out in Essex.

Ciaran Farrell pointed out that is was very difficult for local people and local groups to make any impact on the decision making process at a local level because they often lacked the skills, knowledge and resources to do so.

Jill Pigott asked if there any good LMDTs that could be recommended to PCTs who may be interested in setting up an ME/CFS referral service.

Several people commented on the fact that the lack of direction from central government over local decisions on health issues was not helping people with ME/CFS get the services they need. The Dept of Health had to be more proactive, especially where local providers were not providing an NHS referral service.

The APPG has also issued a press release, which can be found on the MEA website. In it, Des Turner is quoted:

“Our report sets out clearly some long standing problems which are simply not being tackled by organisations that should be doing a much better job of supporting the 250,000 people in the UK with ME/CFS. We are particularly concerned by the failure of many Primary Care Trusts to fund any services for ME/CFS patients especially children and the most severely affected. We are also deeply concerned by the by the poor knowledge that many doctors have about this illness and by the failure of the DWP and its contractor ATOS to understand its adverse impact on many patients’ ability to undertake regular work.”

Press Release: March 10 APPG Inquiry Press Release

APPG LEGACY PAPER 

The final version of the APPG Legacy Paper 26.02.10 was presented and agreed. This is a document that will pass to the next APPG. The paper sets out actions and initiates that have been taken by the current APPG along with issues that remain to be addressed by the new APPG.

A few minor points were raised.

A copy of this document can be found on the MEA website.  (Here on ME agenda: APPG Legacy Paper 26.02.10 )

AOB:

STATEMENT FROM WEST MIDLANDS GROUP ME CONSORTIUM

With the time at just after 3pm, and ushers trying to clear the room for the next MPs meeting, there was no time for detailed discussion under AOB. Jill Piggott was allowed to present a written statement requesting that a representative from the CCRNC/BACME attends the next APPG meeting to discuss the nature of education and training for staff involved in providing NHS services. The MEA will place a copy of this statement on our website when we have one.

MEA WEBSITE:

http://www.meassociation.org.uk

Summary prepared by Dr Charles Shepherd, Hon Medical Adviser MEA

ENDS

PM’s response to AA and DLA Petition

1] PM’s response to AA and DLA Petition

2] Update from Benefit and Work’s Steve Donnison

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

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

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

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

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

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

Read the Government’s response

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

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

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

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

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

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

 

2] Update from Benefit and Work’s Steve Donnison

From Steve Donnison  |  Benefits and Work

DLA short form con update plus keeping ESA after losing appeal

04 February 2010

Dear Subscriber,

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

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

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

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

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

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

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

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

Good luck,

Steve Donnison

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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