F.a.o Sarah Lawrence - CFS/M.E and PIP

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mittens123
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by mittens123 on Wed Aug 14, 2013 8:18 pm

F.a.o Sarah Lawrence - CFS/M.E and PIP

Hi Sarah
In your experience have you heard of anyone sucessfully claiming Personal Independant Payment (PIP) due to CFS/M.E?

I have recently heard that the DWP are telling applicants that they are unlikely to receive a decision on any claim for PIP for 28 weeks?

I understand that when suffering from a fluctuating condition it is best to submit a daily diary-do you have any other suggestions please?
Thanks in advance

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Sarah Lawrence
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by Sarah Lawrence on Thu Aug 15, 2013 9:10 am

Re: F.a.o Sarah Lawrence - CFS/M.E and PIP

Thank-you for your post. As PIP is still a very new benefit we have not had any feedback on claims that people with M.E are making. As you may know PIP has replaced DLA and many people with M.E successfully claimed this (although significant numbers were not successful too or only got it on appeal).

PIP is meant to take into account fluctuating conditions and consider how an individual is over time.PIP is a points based test and your ability to manage a range of activities is assessed against descriptors.
The test is meant to take into account whether an individual can do an activity safely, to an acceptable standard, as often as they need to and in a reasonable time.

It’s really important that you explain if activities take a long time and if you need to keep resting either during the activity or afterwards. You also need to describe any symptoms that you get when carrying out an activity either at the time or afterwards and to give information about days that you may not be able to do the activity at all. Although, you may be able to do an activity such as getting dressed and undressed or prepare some food if it takes you a long time, you are in pain/discomfort or it leaves you completely exhausted, drained and experiencing a worsening in your symptoms, although technically you can do the activity, you are not be able to do reliably, repeatedly and as often as you need to.

A diary can be very helpful when making a claim if you have a fluctuating condition. It is also important to give as much detail as possible on the form and if you are able to provide any supporting letters from your G.P or consultant this may also help your claim.

Disability Rights U.K have published a very helpful guide to making a claim for PIP
It can be accessed from this link-

http://disabilityrightsuk.org/personal- ... ayment-pip

You can start a claim for PIP by calling 0800 917 2222

I hope this helps as a starting point.
Sarah Lawrence
Action for M.E. Welfare Rights Officer

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Dr Charles Shepherd
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by Dr Charles Shepherd on Thu Aug 15, 2013 9:33 am

Re: F.a.o Sarah Lawrence - CFS/M.E and PIP

I would add that feedback to the MEA is very similar'

We know that quite a few people are submitting a claim for PIP (see the July MEA website poll) but we are not receiving any feedback so far on the success/failure rate

The MEA has a new information leaflet on PIP as it applies to people with MEA

MEA website and pdf literature order form: http://www.meassociation.org.uk
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

mittens123
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Joined: Tue Aug 13, 2013 11:23 pm

by mittens123 on Thu Aug 15, 2013 11:15 am

Re: F.a.o Sarah Lawrence - CFS/M.E and PIP

Many thanks for your reply I'm very grateful. Is the M.E Association taking any steps to try to increase the knowledge of DWP Assessors about CFS/M.E or Fibromyalgia?
Thanks

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Dr Charles Shepherd
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by Dr Charles Shepherd on Thu Aug 15, 2013 11:27 am

Re: F.a.o Sarah Lawrence - CFS/M.E and PIP

Summary of the work we are doing with DWP re benefits - DLA, ESA, PIP etc:


WP BENEFITS AND WELFARE REFORM: DLA, ESA and PIP

Trustees reviewed the current MEA strategy regarding various benefit reforms that are taking place, or are due to take place.

Changeover from ICB to ESA. This process continues to cause great difficulty for many people with ME/CFS who are currently claiming ICB when they are re-assessed for ESA.

DLA and the replacement with a Personal Independence Payment (PIP)

The changeover from Disability Living Allowance (DLA) to Personal Independence Payments (PIP) has now taken place for all new claimants in two stages – depending on where you live in the UK. The first stage was in April; the second stage was in June. CS previously reported on a meeting held at the DWP to discuss the new criteria for claiming PIP – in particular the inclusion of the words reliably, repeatedly and safely in the assessment process. CS has prepared a new MEA information sheet on PIP. This was included in the Summer 2013 issue of ME Essential. The new MEA information leaflet on PIP is now available on the literature order form and trustees agreed to prepare a guide to filling in the PIP application forms. Updated information on the changeover, including the call for comment on the mobility question, is being provided on the MEA website and on MEA Facebook.

Professor Malcolm Harrington’s Independent Review of the Work Capability Assessment.

A copy of the MEA submission to this review is on the MEA website: http://www.meassociation.org.uk/?p=1639.

CS is a member of the group appointed by Professor Harrington that has reviewed the WCA descriptors that apply to people with fluctuating medical conditions. The FCG report on fluctuating conditions and the WCA, which contains some very useful information in relation to ESA applications and appeals, can be downloaded on the MEA website: http://www.meassociation.org.uk/wp-cont ... INAL-1.pdf ?

Fluctuating conditions report and ESA

As noted above, representatives from five charities – Forward ME Group, Arthritis Care, MS Society, National AIDS Trust, and Parkinson’s disease – have been working with Professor Malcolm Harrington on his independent review of the Work Capability Assessment descriptors. The group’s report on fluctuating medical conditions and the WCA descriptors was completed in April 2011 and was very well received by Professor Harrington. As a result, the charities spent the rest of 2011 with a Scrutiny Group appointed by the DWP in order to reach agreement on a final set of conclusions and recommendations, This work was completed in November 2011 and was then forwarded to Professor Harrington and the DWP so that it could be included in Professor Harrington’s report on year two of his review.

Testing the recommendations in the Fluctuating Conditions Report

Having received the FCG recommendations the DWP took their time in deciding how our revised WCA descriptors – which are also intended to assess severity and fluctuation in relation to all the tasks that are included in the WCA – could be objectively tested against the current WCA descriptors. We also proposed two new descriptors covering fatigue and pain.

At the end of June 2012, the group was called to a meeting at the DWP where we were informed that an evidence based review (EBR) of our work will now take place. This involved an intense period of further work over during the summer of 2012 in order reach agreement with the DWP on how our proposals should be objectively tested against the current descriptors.

CS reported that testing is now taking place in Manchester and Newcastle to compare the existing and proposed WCA descriptors:

* A total sample of around 1000 ESA applicants who are due to undergo a WCA with Atos Healthcare will be asked if they will participate in an additional assessment on the same day as part of the EBR. This is a purely voluntary process but we hope that people with ME/CFS will take part if invited to do so.

* Two healthcare professionals will be involved in the initial (and current WCA) assessment. Following this a second assessment will take place that will involve asking additional questions and gathering additional information that is needed for the charities version of the assessment to be completed.

* The raw data will also be passed to an Expert Panel for their assessment of fitness for work and the DWP are in the process of recruiting people to form 30 to 40 Expert Panels. Members of the Expert Panels will have backgrounds in occupational health, general practice, occupational therapy, and physiotherapy.

* Expert Panel decisions on fitness to work will be quality assured by a small number of quality assurance panels with more work related or condition specific expertise.

* Analysis of the results will take place during the late summer/autumn of 2013 with the aim of producing an interim report for discussion in mid August. An independent scrutiny group, chaired by Professor Harrington, is overseeing this work.

Benefit review seminar meetings and seminars

Key points to emerge from charity representatives during the course of previous joint discussions include:


* Overall, there is still very little noticeable change taking place to the way in which people are being dealt with by the DWP and Atos

* There is very little evidence of medical reports from claimant’s health professionals being obtained or taken notice of – even when they have been obtained

* Claimants on low incomes cannot afford to pay for medical reports – which places them at a significant disadvantage

* Those living in areas with no access to specialist referral services are also being disadvantaged when it comes to obtaining supportive medical evidence

* People are still being rushed through Atos interviews without being listened to.

* Atos reports are still being reported as factually incorrect

* The Lima computer programme used by Atos during medical examinations is more concerned with functional assessment and describing a typical day at home and not fitness for work.

* People with fluctuating medical conditions do not have ‘typical days’

* Information provided to medical examiners by Atos is in some cases out of date and inaccurate

* The CAB representative pointed out that 60% of successful ESA appeals came from claims that had originally been awarded zero points – this indicates a major flaw in the ESA decision making process

* The DWP needs to define what it means by meaningful work

* Assessments for patient groups for whom the current WCA process is acknowledged to be flawed (eg ME/CFS) should be suspended until suitable descriptors have been put in place.

ESA feedback to The MEA

Feedback to The MEA indicates that people are often finding it very difficult to obtain ESA. However, a significant proportion are being successful if they go to appeal. If anyone is applying for ESA, or is involved in the transfer from ICB to ESA, please read our updated guidance leaflet on how to fill in the complex paperwork and the fully updated 10 ‘top tips’ on ESA. It is also worth obtaining the fluctuating conditions report – this can be downloaded free from the MEA website.

CS reported that he will be submitting further evidence on how the WCA is working for people with ME/CFS to Dr Paul Litchfield, who has been appointed by the DWP to produce the 4th and 5th annual reviews, following the retirement of Professor Harrington at the end of 2012.

The decision to bring in changes to the WCA descriptors as from 28th March 2011.

Motions in the House of Lords to try to annul the Statutory Instrument that brought in the new WCA descriptors were tabled by both Lord Kirkwood of Kirkhope and the Countess of Mar. This led to a House of Lords debate on Wednesday 16th March 2011. A television recording, and Hansard transcript of the debate, can be found on the MEA website: http://www.meassociation.org.uk/ ?p=5180 During the debate, Lord Freud made a very important statement about ESA eligibility criteria in a response to an intervention from the Countess of Mar:

“It must be possible for all the descriptors to be completed reliably, repeatedly and safely, otherwise the individual is considered unable to complete the activity.’

Atos medical assessments

As part of Professor Harrington’s on-going review of DWP benefits, CS has visited an Atos assessment centre in London on to see how the much criticised LiMA computerised medical assessment system works. A summary of his visit was sent to the DWP and Professor Harrington.

ESA 50 form and ESA paperwork

The ESA50 form has been revised, taking note of some (but not all) of the recommendations put forward by the fluctuating conditions group. A copy of the new form, along with background information, can be found in the news archive for January 2013 on the MEA website.

The MEA information leaflet which explains how to fill in the complicated ESA paperwork has ben fully revised and updated – as has our leaflet covering 10 key points relating to ESA applications and appeals.

Disabled Facilities Grant

A new MEA information sheet covering the Disabled Facilities Grant has been prepared and added to the MEA literature list.

Meeting with Mark Hoban MP, Minister of State at the DWP

CS attended a meeting with DWP Minister of State Mark Hoban MP at DWP HQ on Tuesday 30th April to discuss benefit issues. This included the evidence-based review into changes that have been recommended by the fluctuating conditions group and mental health groups into the way in which the WCA assesses fitness for work.

Meeting with Dr James Bolton at DWP

CS reported on a very useful meeting with Dr James Bolton, Deputy Chief Medical Adviser at the DWP, on Friday 12 July. Various benefit matters were discussed including the ESA Amendment Regulations (and the continuing uncertainty as to the way in which people with physical conditions can also score in the mental health descriptors section), the ESA Evidence-Based Review (where we have a meeting in mid August to discuss progress/preliminary results) and the recent announcement regarding a pilot scheme to offer mandatory health advice to people in the ESA WRAG Group (where we have offered to take part in the consultation process for this pilot study).
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

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Dr Charles Shepherd
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by Dr Charles Shepherd on Thu Aug 15, 2013 11:30 am

Re: F.a.o Sarah Lawrence - CFS/M.E and PIP

Key points from meeting with Dr Paul Litchfield at DWP HQ last week.

Dr Litchfield has taken over the annual independent review of ESA WCA from Professor Malcolm Harrington

Meeting summary:

Meeting with Dr Paul Litchfield, new independent reviewer of the Work Capability Assessment | 6 August 2013
by Tony Britton on August 9, 2013
I attended a meeting at DWP HQ on Tuesday 6th August with Dr Paul Litchfield, who has taken over the work of carrying out an annual independent review of the WCA from Professor Malcolm Harrington.

Also present were DWP officials, representatives from a small number of other medical and mental health charities, and Professor David Haslam, Chairman of NICE.

Thank you to everyone who passed on information about their DWP benefit claims earlier in the week following my request for feedback that could be taken to this meeting

Dr Litchfield was very keen to hear about the problems that people are still facing with all aspects of the claim procedures and appeals as well as to what extent the findings of the first three independent reviews had improved, or not improved, the situation

The discussion covered all aspects of the complicated pathway that claimants go through when claiming and being assessed for ESA and, where necessary, having to go to appeal>

In particular there was discussion on:

1 Problems that still remain with the ESA 50 application form, whether further information should be obtained, and what other modifications are required

2 Whether the current medical assessment for ESA is too heavily weighted towards medical evidence and whether more overall emphasis needs to be placed on collecting evidence relating to psychological, mental health and social factors – in other words taking a more biopsychosocial approach to medical assessments

3 The collection of all forms of supportive evidence – medical, mental health and social – including practical difficulties in obtaining this information from doctors; collecting evidence from other sources; and whether the DWP needed to be more proactive in collecting this evidence (yes!). Whether it might be helpful for people to have a face to face interview with DWP decision makers as well.

What does the DWP mean by fit for work? CS pointed out that the Australian Social Security Act 1991 clearly defines what it means by fit for work:

At least 15 hours per week of unsupported employment, at or above the minimum wage, and the person must be able to reliably perform such work on a sustainable basis without requiring excessive leave or work absences.

CS stated that the DWP should have an equally clear public statement for benefit claim purposes.

4 Problems relating to the WCA descriptors – including the over-emphasis on assessing disability and functional impairment and the fact that there is no active attempt to capture information on the disabling effects of symptoms such as fatigue, pain, low level cognitive dysfunction, sleep disturbance, just not feeling well that are often associated with chronic ill health

5 The situation and confusion regarding the ESA Amendment Regulations that were brought in at the start of the year and which sought to clarify the way in which physical and mental health descriptors could (or could not) be used together. We have previously discussed these concerns, along with other members of the FCG, with Dr James Bolton at the DWP in July

6 The way in which information about DWP decisions – telephone calls in particular – were conveyed to claimants

7 The role of Atos – including the inadequate time given to assessments; training of medical examiners, especially in relation to the assessment of complex conditions such as ME/CFS, mental health conditions and people with learning difficulties, and to what extent DWP decision makers are still ‘rubber stamping’ Atos recommendations

8 Appeal procedures – in particular the enormous amount of money that is currently being wasted when people with perfectly genuine claims are initially scoring zero points but are then being successful at appeal. The cost could be significantly reduced by getting the decision right first time

This was a useful first meeting with Dr Litchfied where our concerns were carefully listed to and noted.

The next DWP meeting is on August 21st when members of the Fluctuating Conditions Group and Mental Health Group will be discussing the preliminary findings from the Evidence Based Review of our recommendations for changes to the WCA descriptors. The EBR is well underway and is currently due to finish in September.

Dr Charles Shepherd
Honorary Medical Adviser, The ME Association
9 August 2013.
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

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Dr Charles Shepherd
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by Dr Charles Shepherd on Thu Aug 15, 2013 11:32 am

Re: F.a.o Sarah Lawrence - CFS/M.E and PIP

I will be at DWP HQ again next week (it's almost like a second home right now!) to discuss the preliminary results from the Evidence Based Review that is comparing our recommendations for changes to the WCA descriptors with those that are currently being used
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

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