The Minister for Disabled People, Mike Penning MP, today supplied detailed written answers to questions left in the air after he had attended the meeting of the All Party Parliamentary Group on ME on 3 February 2014.
These written questions and the Minister's considered replies can be read in conjunction with the Minutes of the meeting held HERE.
Responses to written questions at APPG for M.E. from Mike Penning, Minister for Disabled People
Questions by Charles Shepherd, ME Association:
In relation to the report of the Evidence Based Review of WCA, to ask whether:
a) the DWP has now considered the report on the EBR of the WCA
b) there are any plans to make further changes to the WCA following on from the EBR
c) the Minister would meet with representatives from Professor Harrington's Fluctuating Conditions Group and Mental Health Group to discuss the outcome of the EBR
a) The EBR is an important study which provides rich information about how the assessment descriptors work. The Department is considering the study findings to understand their implications and whether changes might be made to the WCA to further improve its fairness and effectiveness.
b) We will be responding to the Evidence Based Review and describing what changes might be made in light of the findings, as part of the forthcoming Government Response to the Fourth Independent Review of the WCA which is due for publication early this year. A number of recommendations from the Independent Review refer to the Evidence Based Review and we believe it is most appropriate to provide a response to the study in this way.
c) The Minister is very grateful to both groups for their contribution to the EBR and would be pleased to meet with the organisations involved.
Questions by Christine Harrison of BRAME:
Will the Minister please ensure that his department and its providers (eg Atos and Capita), formally adopts, and uses for training and reference, the International Consensus Primer on Myalgic Encephalomyelitis (ICP ME 2012), and acknowledges that:-
a) neurological ME is a very misunderstood condition by health professionals
b) this in turn leads to people receiving little, or no, specialist care, and therefore poor, or no, management of their condition
c) this often then results in people being unable to obtain medical/supportive evidence when claiming benefits – many of whom have to go to appeal at a great cost to themselves and to the DWP.
d) use of the ICPME would greatly enhance the training and education of DWP staff and health assessors, to enable more accurate assessments, to lead to the correct decision the first time.
DWP will not formally adopt the ME Primer or endorse its use by providers. However, training materials on ME have been developed and shared with stakeholders over the years. DWP will continue to work with stakeholders on these materials as opportunities arise.
Questions by Kathleen McCall, Invest in ME:
1. It is clear from many of our supporters that GPs are often known to refuse referrals for their ME patients on the grounds that there is little point in doing so as they believe there are no treatments.
This illustrates an ignorance of ME and of research into the disease (RCGP Chair Dr Clare Gerada stated at the IIMEC8 Invest in ME International ME Conference, in London in 2013, that GPs know little about ME).
This impacts the patient as well as compromises their entitlement to benefits.
Some of the clinics set up for ME and CFS specifically state: “Please note that we do not accept referrals where the sole purpose is for second opinion for pending benefits claims.” (- King’s College CFS Unit)
How are patients supposed to obtain medical evidence for their benefits applications if they are refused referrals and the few clinics set up to see these patients cannot provide appropriate support?
How are they supposed to get better if their personal physician is ignorant of the disease and refuses to facilitate the possibility of improved treatment?
This adds further stress for patients and their families and enforces again the view that ME patients are subject to systemic bias in the healthcare system and ignored by disabilities agencies. Effectively ME patients are discriminated against.
2. The failure of government policy on ME for a generation means that few patients have decent healthcare or prognosis once they have the diagnosis of ME.
This makes the impact of Atos and welfare reforms even harder than usual for ME patients as no one seems to take responsibility for this group of patients even though many acknowledge the shameful treatment these patients have received (in Norway the government officially apologised for their treatment of ME patients).
How is it possible then for Atos medical assessors to be able to give prognoses of ME patients' ability to return to work based on one interview and with no knowledge of the disease and no understanding of the effects of the disease and especially the consequences from post-exertional malaise?
It is obvious from patient experiences that ATOS are acting purely to enforce DWP policy to deny benefits – seemingly influenced by the outdated establishment bias which has been allowed to be built up by vested interests.
The role of the ministry is to improve the health and safety system, simplifying the welfare system and making sure work pays. Helping people to find and stay in work.
It is plainly obvious that these objectives are completely failing in being materialised for ME patients.
We would respectfully suggest that the minister consider the following in relation to the ministry’s objectives –
• The health and safety of patients has not been improved and continues to be so poor that severe deterioration and even deaths from ME are becoming more frequent.
• The welfare system for ME patients is a scandal – with little understanding of the disease being exhibited by DWP, or their contracted third-party organisations such as Atos, and not even healthcare practitioners.
• Making sure work pays is a meaningless concept if people are denied any hope of development of treatments or cures for this disease due to lack of proper research being funded by those charged with that responsibility (such as the MRC).
The minister, we feel, should consider the deplorable state in which successive governments have left ME patients.
An entire section of the population is discriminated against on a regular basis – something a Minister for Disability Issues really ought to consider a major priority.
If there are problems accessing GP services stakeholders should take this up with the Department of Health in the first instant as.DWP are not involved in the commissioning or oversight of general medical services.
In terms of collecting evidence to support claims, GPs often supply evidence to support claims. In cases with no evidence health professionals are able to carry out a functional assessment and provide advice to the decision maker. Health professionals have a background in clinical practice and are trained to carry out functional assessments. Fluctuating conditions and fatigue are common and all health professionals are expected to have a good understanding of the nature of these problems and their disabling effects over time, not just on the day of the assessment.
DWP does not have a policy to deny benefits to people with particular health conditions. DWP is committed to continuing to work with stakeholders to improve the experience of people with CFS/ME when they interact with DWP.
Questions by Doris Jones of the 25% Group:
Q.1a) No exemptions from WCA, no matter how sick / debilitated and for how long.
Response to 1a:
We do not exempt anyone from the WCA because although the health of some claimants can deteriorate, others may find their function improves whilst others adapt to their condition. This could be in response to changes in treatment, rehabilitation or new treatments that become available. Appropriate review ensures that an individual continues to receive the right level of support.
It should be noted, however, that clearly unnecessary face-to-face assessments are in no-ones best interests – where a decision can be made based on the available paper evidence alone it will be.
Q.b) ESA awards are time-limited and claimants can be subjected to repeated assessments at frequent intervals.
Response to b:
A time limit of one year gives the best balance between allowing people in the Work Related Activity Group to adjust to their health condition and paying contribution-based ESA for an appropriate length of time. The time limit does not apply to the most vulnerable in the Support Group nor the poorest on income-related ESA. People moving off contributory ESA as a result of the time limit will be able to apply for income-related ESA if they are eligible.
Reassessment dates chosen can be 3, 6, 12, 18 or 24 months or in the longer term depending on when it is considered most appropriate for the claimant to have their next contact with the Department. Dr Litchfield has recently published the 4th independent review and has recommended that DWP should apply any recommendations on review periods as the default; that DWP should consider a minimum period (e.g. 6 months) between a successful appeal decision and a recall notice and that people who have a very severe incapacity should be reassessed after 5 years. We are carefully considering Dr Litchfield’s recommendations before formally responding in the first quarter of this year.
Q.2) Major problems with Limited Capability for Work Questionnaire (ESA50):
Response to 2:
The ESA50 is reviewed every 6 months and was developed alongside experts and groups representing disabled people. However, with countless health conditions and illnesses and the differing ways in which people are affected by their condition, to devise one form which meets the individual needs of everyone remains a challenge. Dr Litchfield made further recommendations about the ESA50 which we are considering as part of the Government’s response.
Q.a) Reduced time limit of 4 weeks for completion insufficient
Response to a:
The time limit in which individuals have to return their ESA50 was reduced from 6 weeks to 4 weeks to speed up the process, allowing us to assess claimants more quickly. However, where a claimant does not return the ESA50 in the given timescale, they are afforded the opportunity to demonstrate good cause. If accepted, the DWP Decision Maker (DM) will not close the claim and it will continue to progress as necessary.
Q.b) Effort of completing form to deadline causes a range of problems; late submission can also cause major problems.
Response to b:
We recognise that the ESA50 may be challenging to complete for some people which is why it makes clear claimants can ask a friend, relative or representative to help, or ask someone from Jobcentre Plus. The ESA50 helps Healthcare Professionals (HCPs) to determine whether a face-to-face assessment is necessary. It also forms part of the evidence available for the DM to make a fair determination of eligibility for ESA. As mentioned earlier, if the ESA50 is returned late then claimants have the opportunity to explain why this was the case. If the DM accepts that the claimant demonstrated good cause then the claim will continue as normal.
Q.c) Many need help with completion of Questionnaire – not always able to access this.
Response to c:
Where individuals require assistance with completing their ESA50, they can ask a friend, relative or representative to help, or ask someone from Jobcentre Plus.
Q.d) Rules on completion of Questionnaire too inflexible.
Response to d:
As mentioned earlier we reduced the timeframe in which an ESA50 must be returned from 6 weeks to 4 weeks to speed up the process. However we have safeguards in place to ensure claimants are given the opportunity to demonstrate good cause.
Q.3a) Major problems in obtaining medical evidence in support of claims. GPs may not appreciate degree of debility in severe M.E.
Q.b) GPs may not know case well due to failure to make home visits (as a result, many patients have no medical monitoring or care)
Response to 3a and b:
Medical evidence provided by GP’s forms only part of the evidence which a Decision Maker considers when determining whether a claimant meets the qualifying conditions for ESA. They also consider the ESA50 and the Atos HCP report and seek more evidence if required in order to reach their decision. Whilst claimants are advised they can submit medical evidence in support of their claim if they wish, it is not a DWP requirement.
Q.c) Form ESA 113 sent by DWP to GPs not specific enough for them to give the required information.
Response to c:
The ESA 113 was designed in conjunction with GPs, the BMA and the Royal College of General Practitioners and is not meant to be condition specific but allows GPs to provide all relevant clinical information. We are working with the BMA and others to review the contents of the ESA113 to ensure it is as effective as possible at gathering factual information from GPs.
Q.4a) Major problems with face to face and remote assessments. When face to face appointments are kept by patients, often with great difficulty and significant adverse health consequences, most get wrong assessment outcome.
Response to 4a:
Whilst the WCA is carried out by a HCP, the decision to award benefit or not, is taken by a DWP Decision Maker, after having carefully considered all available evidence before them. As part of a process of continuous improvement within DWP we have been working to improve the quality of DM decisions ensuring everything is fully reasoned and justified.
Q.b) Only if a doctor explicitly testifies that a patient is unable to travel to an assessment centre will the need to attend be waived. The requirement to produce such testimony – on behalf of every housebound person of working age – represents a massive cumulative burden on the NHS
Response to b:
Where claimants are unable to attend their appointment for a WCA and a home visit is required, individuals are asked to obtain a letter from their GP confirming this. However, we recognise there is a balance to be struck between providing Atos Healthcare and DWP staff with enough information to deliver a professional service, without placing undue burdens on GPs. We are constantly reviewing whether we have got this balance right and how we can improve processes.
Q.c) Remote assessments are usually not done by a doctor, although Atos is required to do so for claimants with complex CNS findings.
Response to c:
Clear guidance is available to Atos on the use of Healthcare professionals (HCP). Where a HCP requires support this should be immediately available over the phone. Alternatively, they can ask for another HCP, such as a doctor, to take over the case if necessary.
Q.5a) Major problems with decisions / outcomes; too few decisions are correct: a fairly consistent tendency is to award claimants ESA at a level one step below that which is appropriate to their case.
Response to 5a:
We have been working with the Tribunals Service to gather more detailed feedback as to why cases are overturned on appeals. The feedback provided is being used to learn lessons and to improve our processes. The Evidence Based Review has also looked at the accuracy of the WCA and the Government will be responding to its findings soon.
Q.b) Pressure to participate in work focussed interviews is very stressful and attendance downright impossible for severely affected patients placed in the WRAG. Even though a challenge has been lodged against the WRAG decision, attendance at such interviews can only be waived on a discretionary basis.
Response to b:
There are no fixed stages or trigger points for the delivery of Flexible Interventions. However, to ensure that ESA WRAG claimants (who are subject to mandatory interventions) remain in touch with their adviser and aware of the support available to them, they must, as a minimum, have two interventions with their adviser every year.
Advisers will assess individual claimant need, the support required and availablility (based on local priorities) and set the frequency, content, duration and method of contact (e.g. at the Jobcentre, as a Home Visit or by telephone). The decision should be based on claimants circumstances and the level of support the Adviser believes the claimant will need to move in to work.
General comments: View of the 25% ME Group Advocacy Worker: “The present system simply isn’t a meaningful assessment of whether or not a person is fit to work, or can reasonably be expected to take steps to prepare for work in future.”
The findings of the Evidence Based Review were published on 12 December 2013. The overall findings suggest that the WCA performed better than the alterative assessment which was proposed by a group of disability representative organisations and that the WCA produced consistent results on the whole, and is an accurate indicator of work capability as compared with expert opinion.