Dr Paul Litchfield OBE OStJ FRCP FFOM
WCA Independent Review Team
2nd Floor
Caxton House
Tothill Street
London
SW1H 9NA
27 August 2013
Dear Dr Litchfield,
Progressive conditions and the WCA: a submission for the 4th independent review
On behalf of four charities that represent people with a progressive condition, namely Cystic fibrosis, Multiple sclerosis, Parkinson’s and Rheumatoid arthritis, we would like to respond to the 4th year review collectively, providing you with a dossier of case studies and statistical evidence to support our call for changes to the WCA. More information about the conditions we represent is provided in an appendix to this dossier.
We hope that the following information will demonstrate that the WCA does not effectively identify capability for work when a person is living with a condition that only gets worse over time. We also have evidence that demonstrates the points based system and WCA criteria are inconsistently applied. Our evidence demonstrates that:
• Overall 45% of people with these four progressive conditions are placed in the WRAG when newly assessed for ESA, and allocated a prognosis period for when they may have recovered enough to return to work;
• 70% of new claimants with these conditions have been reassessed two or more times on the same claim;
• 11% of these are then found to have experienced an improvement in their condition at reassessment;
• We have found no evidence that Atos HCPs or decision makers have sought additional evidence to clinically justify improvement or prognosis periods for recovery;
• There is little data yet on Incapacity Benefit claimants with these conditions but we expect from cases reported to us that their experiences can mirror those of new claimants.
We do not argue that a diagnosis of a progressive condition means that someone is unable to work, nor do we disregard the potential of new treatments and prospect of improvement. The people with the conditions we represent wish to work for as long as they are able to, especially given they face an uncertain future of needing care and support.
However, in the vast majority of cases we see applications for ESA are made when work has been given up reluctantly, as symptoms are becoming severe, debilitating and unpredictable.
For example, the ‘RA and Work’ (2010) survey, conducted by National Rheumatoid Arthritis Society, revealed that over half of those who gave up work because of their rheumatoid arthritis stopped working within one year of diagnosis, and 80% had stopped within six years.
The partial relief from medication and other treatment may also have waned as the conditions we represent have progressed.
We seek a more sensitive and accommodating approach towards those with progressive conditions. This would also be cost-effective as appeals, tribunals and reassessments are avoided while reducing the distress these decisions cause.
In summary we call for your report to recommend:
1. The end of contradictory WRAG prognosis statements which advise “a return to work could be considered in x months” if that person has a debilitating progressive condition.
2. That Atos Healthcare Professionals (HCPs) should be obliged to seek further evidence to clinically justify their recommendations on likely return to work before being able to place anyone with a progressive condition in the WRAG, whether a new claimant or those being reassessed under Incapacity Benefit.
3. If the prognosis statement selected by an Atos HCP is that someone is “unlikely to return to work” then these individuals should go into the Support Group, rather than allocated to the WRAG, as is happening at the moment.
4. Once a person with a progressive condition is in the Support Group any further assessment or review should be “light touch” and set at the longest possible clinically justified interval. Those in the Support Group can always voluntarily engage in work or work related activity, and will always be duty bound to report a change in circumstances in the event of better treatments leading to functional improvement.
5. A much more comprehensive quality assurance process of both Atos HCP recommendations and the decision making process so decisions are more consistent. This should focus on why people with a progressive condition have been assessed as improved and whether there was any supporting clinical evidence to justify why. Particular focus should be on reassessments of those on Incapacity Benefit as this cohort will have progressed in disability over many years.
6. Changing the start date for reassessment to begin on the date of appeal decision as a matter of course and allowing tribunals to take into account deterioration of someone’s condition. This would stop the “merry go round” of tribunals won only to be reassessed again shortly afterwards.
7. Finally we call for the end of time limiting of contributory ESA for those in the WRAG with a progressive condition. We have evidence that the gradual corruption from the WRAG’s original intent of support to one of increasing sanction is causing extreme hardship and stress for the people we represent.
Yours sincerely,
Ed Owen, Chief Executive, Cystic Fibrosis Trust
Ailsa Bosworth, Chief Executive, National Rheumatoid Arthritis Society (NRAS)
Patricia Gordon, Acting Chief Executive, MS Society
Steve Ford, Chief Executive, Parkinson’s UK
Dossier: does the WCA effectively identify and differentiate work capability for those witha progressive condition?
In order to establish if the WCA is operating correctly there is real merit in looking at the experiences of those with progressive conditions, since a huge amount of time, money and effort is being put into assessing people for capability to return to work, even if they are not currently able to do so at the point in time of their assessment.
Under Employment and Support Allowance (ESA) the WRAG is described by the government as the group for people who have the potential to return to work. [1] The medical report form (ESA85A) which someone will receive in the WRAG sets the timescale for reassessment based on the expected prognosis of return to work.
The prognosis is based on when someone will have recovered to the point where it is likely to be reasonable for them to look for work. [2] It will be this timescale that also triggers a review and further assessment.
How many people with these progressive conditions are in the WRAG?
Since new claims began in 2008 13640 people with these four conditions have applied for ESA.
Around 6140 people (~45%) have been placed in the WRAG, 4310 in the Support Group (~32%) and 3190 found Fit to Work (~23%) and therefore ineligible for ESA. The data is shown in the table below. [3]
The WCA is therefore concluding that the majority of those assessed for the first time (6140), who have the progressive conditions mentioned above, could return to work in a given prognosis period for recovery.
It should be noted this data above is for new claimants only, we understand that the Department is intending to publish more detailed information on Incapacity Benefit (IB) reassessments which in the future will provide IB data on these conditions.
This will be of particular merit as these claimants will have been on the benefit for some time (pre 2008), so their condition will have progressed over many years.
How long are estimated recovery times in the WRAG and how are these justified for those with progressive conditions?
We have asked the DWP for figures on how often people are reassessed for ESA with these four progressive conditions. Unfortunately the DWP has not been able to answer the parliamentary question, saying that there is no predetermined level for reassessments. [4] However, in an earlier parliamentary question it was revealed that those with Parkinson’s have an average 472 days between assessments, indicating that they are receiving either 12 or 18 month prognosis reports for recovery. [5]
For the WCA to effectively conclude someone with a progressive condition is able to return to work in these prognosis periods, then it would be expected that there would be an attempt to clinically justify that conclusion. Unfortunately, there is no evidence to show this is the case.
Claimants we speak to are not asked by the Atos HCP if they are planning future treatment with the possibility that their condition could improve, or if they could adapt in time to return to work. We know of cases where the converse has happened, and compelling medical supporting evidence is disregarded.
The evidence all points to claimants who don’t meet the descriptors for the Support Group, so must be allocated to the WRAG on the basis of the points scored, irrespective of how many points that may be, and under the computerised system given a standard prognosis period for recovery irrelevant to their condition.
“My WCA was a fictitious affair in which the supposed 'doctor' ignored the tangible medical evidence in front of her during the examination and proceeded to write a report that did not reflect the actual examination or take into account any of the medical evidence by specialists. For example my MS physio had written that I had a left drop foot & weak left leg. During the exam this was very evident however the assessor wrote ''made no attempt to lift left leg'' There were many similar inaccuracies. Since I had submitted clinical evidence from a neurologist, MS nurse, GP & neuro physio it seems that they know nothing about the character of their patients!”
A client in her late 30s with Parkinson’s placed in the WRAG following medical retirement, whose symptoms were described by her Parkinson’s nurse as very disabling, with painful dystonia, freezing, falls and stumbles with an inability to maintain grip because of cramp. The client has an extensive package of care support at home and is virtually unable to walk. At her tribunal, appealing her second inclusion in the WRAG, where the Atos Healthcare prognosis report recommended “a return to work in 18 months”, the Tribunal judge, wrote a decision notice that placed the client in the Support Group and urged the Department to not reassess the applicant.
What are the experiences of those with progressive conditions on Incapacity Benefit?
A worrying trend has been a number of reports of people on Incapacity Benefit being reassessed by paper and declared that they are “unlikely to return to work in the longer term” yet placed in the WRAG. Such statements are totally contradictory to the purpose of the WRAG.
Again these reports are evidence that the Atos HCP is awarding points which recognise the person is unable to get into the Support Group, yet the person is unlikely to be able to return to work.
A client was diagnosed with severe rheumatoid arthritis in 2008. Owing to the severity of the disease (feet, ankles, hands and shoulders were all affected) they eventually had to give up work which was in their own words ‘a tremendous blow’. During the 18-month period after diagnosis, life became ‘unbearable’ because of the chronic pain and fatigue caused by the disease. Even simple tasks, such as cutting up food, became impossible and the client was subsequently awarded Incapacity Benefit (IB) without the need to attend a physical assessment.
Following a reassessment from IB, without any face to face consultation, they were placed into the WRAG. The original ESA medical report prognosis concluded it was unlikely the client would return to work for two years and the section 'Justification of Advice' stated ‘the client is unlikely to return to work in the longer term’.
Justifiably the client thought, considering the report, they should qualify for the Support Group instead. After much back-and-forth and considerable stress and worry knowing they would only receive the benefit for a year in the WRAG, the client received a telephone call from a DWP Decision Maker stating that the original decision was wrong. After receiving the original Atos medical report and talking to the client about their condition the Decision Maker confirmed the client would be transferred on to the Support Group for three years.
How many people with progressive conditions are found to have “improved” at reassessment?
The following table shows figures relating to functional “improvement” either because the person has scored fewer points on a WRAG reassessment or moved between groups. Again the data is for new claimants only rather than Incapacity Benefit reassessments, however in total 770 people with these progressive conditions have been declared to have improved at a repeat assessment on the same claim.
The government has been challenged on these findings for those with Parkinson’s [6] and has stated:
“Claimants with Parkinson's disease may perform better at subsequent work capability assessment in some instances since, while the underlying condition is unlikely to improve, a patient's treatment could be changed or optimised with a resulting improvement in function.”
While we agree that this is a possibility for all four conditions we represent, it would be useful if this statement might be backed by a quality assurance process to check that is the case, particularly since the claimants we speak to are telling us they have not got any better. Furthermore, the reverse can often be true. For example, biologic therapies are used in the treatment of RA[7]. Unfortunately, many of these treatments can lose effectiveness over time and patients rarely use one drug for more than 2 years, meaning that periods of disease ‘flare’ are a regular occurrence as when patients transition on to new drugs the positive effects are not immediate. It is also important to note that RA drugs do not cure the disease but instead help slow progression of irreversible joint damage.
Again, we can find no evidence that assessors are seeking to clinically justify improvement at reassessment, by seeking medical reports and further evidence to substantiate their findings. The evidence all points to a “snapshot” WCA which may find a person performs better on the day, without acknowledging both the progressive and potentially fluctuating nature of the condition.
Given many people with the conditions we represent when in the WRAG are being advised to apply for the Support Group given the condition has progressed, this lottery of decision making is extremely worrying.
Advisors tell us they cannot say with certainty that someone who has become more disabled and deteriorated while in the WRAG will then be placed in the Support Group.
“I had a medical in October 2009 and received 0 points. Along with the citizens advice bureau I appealed the decision. We went to a tribunal on the 23rd of July 2010 and they reversed the decision. They put me in the Work Related Activity Group. Then I had a medical in February 2011 and yet again I was awarded 0 points and my benefit has been stopped. This is only seven months from my appeal being successful. I find this absolutely deplorable as my condition has certainly not improved in that time. Since then I have had new symptoms of my MS and a relapse and continual chest infections.”
A client already in the WRAG with Parkinson’s made an application to the Support Group with support from his advisor. He was awarded 0 points after his face to face assessment with Atos Healthcare. On the basis of this medical report he has now had a DLA application refused. Our advisor explains the extent of this client’s disability which had been clearly explained in the application: “He has broken his hip from a fall, with pain and impaired movement on top of precarious mobility due to Parkinson’s. He has a pronounced tremor, problems with memory, concentration, movement, initiating movement, a shuffling gait, balance, speech, eating and drinking and is constantly fatigued. He experiences regular episodes of freezing and requires support with all aspects of personal care and constant supervision both during the day and at night when going to the toilet due to his unsafe mobilising and movement.”
How many people with these progressive conditions have been reassessed?
The following information shows that 7330 of those with the progressive conditions referenced in this report have had two or more WCAs on the same claim. This is about 70% of the overall number who have submitted a new claim for ESA since October 2008.
Of these we have already identified above that 770 have been found to have “improved” on reassessment, which is 11% of the total figure.
While for those in the WRAG a reassessment may be necessary and appropriate if someone has deteriorated and could be eligible for the Support Group, even those in the Support Group will face a reassessment at a set date, which can be every three years from entry into the group or much sooner. According to a parliamentary answer [8], the rationale of reassessing those in the Support Group for those with progressive conditions is as follows:
“This is because, even for claimants who are unlikely to see an improvement in their health and who are unlikely to sufficiently adapt to their condition, it is important that we do not write them off completely.”
However everyone in the Support Group can choose to engage in voluntary work, training, or work itself. For the government to imply this is the Group which “writes people off” is misleading. Moreover, the “merry go round” of assessments based on prognosis periods, coupled with the long waits for appeals, mean it is often the case that a person will win an appeal only to be invited to another assessment shortly afterwards. This is because the tribunal is bound to make a ruling based on the evidence at the time of the original decision. Yet the government has said it has no plans to amend the WCA reassessment date to align with the date of the tribunal’s decision in every case.
“I attended a tribunal exactly one year to the day after I first applied for ESA. The tribunal took approximately 25 mins and the panel had no hesitation in putting me into the Support Group. Here we are a little over 7 months later and I am being reviewed. Does the DWP think I’ve got better - I have secondary progressive MS. Surely their money can be better utilised?”
A client with many health problems including Parkinson’s, who had to appeal to a tribunal, and was finally placed in the Support Group for ESA but with a review date of 12 months time, so she has recently received another questionnaire to complete. To make matters worse, as she is unable to write due to her Parkinson’s she could not get an advisor’s appointment in the three weeks to get it back and DWP refused a one week extension, so her ESA payments have ended until a good reason decision takes place.
Difference between the WRAG and Support Group
On the basis that the WRAG is correctly identifying those with a real prospect of recovery and who could do something about their situation, the following sanctions have been introduced:
• After one year the person’s contributory ESA is means tested. The person will need to rely on savings or a working partner if they aren’t eligible for income related ESA.
• Those in the WRAG who are not in receipt of DLA are subject to the benefit cap
• Those on income related ESA WRAG with up to and including a 12 month prognosis are now being mandated onto the work programme and can be subject to voluntary work experience and mandatory work placements (the latter of which is open to sanctions).
• Those in the WRAG will have considerably less income when Universal Credit is introduced than those in the Support Group.
• The WRAG (not the Support Group) has limited uprating of the benefit to 1% between 2013 and 2016.
Of all these the end of contributory WRAG after a year is perhaps the most cruel to those with a condition from which they will never recover. Bearing in mind that onset is often in working age and after many years in work, the fact that years of contributions are disregarded is particularly galling as well as financially crippling. For some the end of their benefit came on the day the new legislation was enacted in April 2012 as the provision was retrospective. The provision also acts cumulatively, registering all time in the WRAG, even if the person has spent periods of time in the Support Group.
As can be seen from the evidence above there is no guarantee that after a certain period of time someone will be found eligible for the Support Group and there are now cases of people going without payment since April 2012 when the cut off was first introduced.
A client with rheumatoid arthritis was placed in the WRAG after a reassessment from Incapacity Benefit. The ESA medical report prognosis concluded it was unlikely the client would to return to work for two years, yet their contribution ESA was limited to one year, discounting their previous 35 years of continuous employment.
The client also did not appeal at first because a Department for Work and Pensions (DWP) official at the time incorrectly said they would lose part of their benefit if they went through with this action.
Moreover if the person accepts they will engage with the system as they have been told they should be moving back to work, they find there is little support on offer or the Jobcentre plus advisor is themselves highly critical of the decision.
“In my view of all the officials encountered in the ESA process, they are usually the most realistic practitioners in the system” – Advice worker, Parkinson’s UK
“In January I was called back to the Jobcentre. I saw the same personal advisor that I had seen in 2010. As I limped up to her she said, “What are you doing here? You should be in the Support Group.” She told me that I must appeal against being put in the WRAG as I was still in time.”
Conclusion
Clearly the WCA fails to make any allowances for those with a progressive condition. Those that cannot meet the descriptors for the Support Group are put in the limbo of the WRAG with a standard computerised prognosis “recovery” period that bears no relation to the reality of their condition.
They are being driven to attempt the Support Group after being financially crippled from losing WRAG payments after a year, only to face a lottery of decision making which can relate to how the person’s function is on the day they are tested. Even those in the Support Group are not safe from the persistent worry of a re-test.
For some, after years on Incapacity Benefit, they are not even seen before a conclusion that function has improved is concluded, or even more contradictory, that the assessor agrees they are in all likelihood unable to return to work but still only reach the points for allocation into the WRAG rather than Support Group.
Underlining all of this is a failure by Atos and decision makers to seek out evidence and clinically justify those conclusions. It is only when that person reaches the Jobcentre Plus that there is an acknowledgement they are in an impossible position.
With the cost of appeals running at £37 million in 2012, and the cost of unnecessary assessments and reassessments unknown due to restrictions on commercial data from Atos, it is clear there needs to be a better way of assessing those with progressive conditions that is both economically as well as morally justified.
Description of conditions
• Cystic fibrosis
There are nearly 10,000 people with cystic fibrosis living in the UK. Cystic fibrosis is a progressive, life-shortening inherited disease caused by a faulty gene. The lungs and digestive system become clogged with mucus, making breathing and digestion something which requires daily intervention with treatment and medications.
New treatments and better clinical care are helping people with cystic fibrosis live longer, but the irreparable decline in lung function caused by cystic fibrosis means those with the condition will struggle on a daily basis, with moving around being a particular issue.
Only half of those currently living with cystic fibrosis will live beyond 41 years of age. The condition continues to take the lives of younger adults, teenagers and children.
• Multiple sclerosis
Multiple sclerosis (MS) is one of the most common disabling neurological conditions affecting young adults. Around 100,000 people in the UK have MS. For most people, MS is characterised by relapses followed by periods of remission while for others it follows a progressive pattern.
The causes of MS are unknown, there is no cure and the treatments that are available are effective in only certain cases and for some of the time. MS symptoms include loss of mobility, pain, fatigue, visual impairment, numbness, loss of balance, depression and cognitive problems.
MS can lead to severe and permanent disability.
• Parkinson’s
Parkinson’s affects 127,000 people in the UK, and onset commonly occurs aged 50 or over, although one in 20 people are aged under 40.
Although Parkinson’s can be well-managed with medication and treatment, the condition is progressive. Everyone with Parkinson’s is different but symptoms include sudden freezing, tremor, muscle rigidity and slowness of movement, or less visible issues such as pain, fatigue and anxiety. Fluctuations can mean people have better days, or better hours. Treatment can also cause side effects and fluctuation. Everyone with Parkinson’s is individual and so statements on “average” progression are unhelpful.
However as the condition progresses the majority of people with Parkinson’s in work report that work does become more difficult for them. A small scale study found that respondents with Parkinson’s worked for an average of 4.7 years after diagnosis, with another study putting mean retirement age at 55.8 years compared to the then UK average of 62 years.
• Rheumatoid arthritis (RA)
RA is a chronic, progressive and disabling auto-immune disease affecting 580,000 people in England – which suggests that over 690,000 adults in the UK live with the condition. It is a disease in which the immune system attacks the tissue within the joint, leaving it painful and inflamed. If the disease is left untreated, the joint can lose its shape and alignment, and can eventually become unstable and ultimately, destroyed.
It is a painful condition, and can lead to disability, although every person’s disease is different. It is a progressive disease, but this varies significantly between individuals. It can progress very rapidly, or more slowly, but ultimately causing damage to cartilage and bone around the joints. Any joint may be affected but it is commonly the hands, feet and wrists. Some people have very little damage to their joints, and about one person in 20 has severe damage in several joints.
RA is a systemic disease which means that it can affect the whole body and other organs such as the lungs, heart and eyes, although this is not the case for everyone with RA.
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1
DWP impact assessment regarding the time limiting provisions of the WRAG, 20 April 2011
http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf states “It was never intended that ESA for those in the Work Related Activity Group (WRAG) should be paid for an unlimited period to people who, by definition, are expected to move towards the workplace with help and support’
2
Work and Pensions Select Committee Employment Support Allowance and the Work Capability Assessment.
DWP’s evidence to committee on 21 November 2012. Dr Bill Gunnyeon, Chief Medical Officer stated: “Prognosis, as you know, is a difficult thing anyway. It is always an assessment of when you think, all things being equal, someone will have recovered to the point where it is likely to be reasonable for them to look for work.”
3
Source above: DWP Work Capability Assessments outcomes: Medical condition breakdown after the effect of appeals. September 2012. Found on ad hoc analysis page https://www.gov.uk/government/publications/work-capability-assessments--4
and records all new claims from October 2008 to November 2011
and records all new claims from October 2008 to November 2011
4
Answered 5 July 2013. Jessica Morden MP: To ask the Secretary of State for Work and Pensions how often people with (a) rheumatoid arthritis, (b) cystic fibrosis and (c) multiple sclerosis were reassessed for employment and support allowance. Mr Hoban: Claimants with these health conditions do not have pre-determined intervals for reassessment.
5
Answered 17 January 2013. Sheila Gilmore MP: To ask the Secretary of State for Work and Pensions how often on average people with (a) Parkinson's and (b) all progressive conditions are reassessed for their eligibility for employment and support allowance. Mr Hoban: For all new employment and support allowance (ESA) claims with Parkinson's disease recorded as the main health condition where there was an initial work capability assessment (WCA) and a first repeat WCA, the average duration between the decision-maker's decision at the initial WCA and the first repeat WCA was 472 days.
6
Answered15 January 2013 Stephen Timms MP. To ask the Secretary of State for Work and Pensions how many people with (a) Parkinson's disease and (b) other progressive conditions placed in the Work Related Activity Group of employment and support allowance have been reassessed; and how many such people were found fit to work following that reassessment.
7
University of Maryland Medical Center, ‘Rheumatoid arthritis’: http://umm.edu/health/medical/reports/articles/rheumatoid-arthritis#ixzz2bO56FqkF
8
19 December 2013 Stephen Timms MP: To ask the Secretary of State for Work and Pensions what assessment he has made of whether an applicant for employment and support allowance who has been placed in the support group and diagnosed with a progressive disease can be excused from any further work capability assessment.[134523]
Mr Hoban: Everyone who claims employment and support allowance (ESA) will undergo periodic work capability assessments (WCAs) to ascertain whether they still meet the conditions for the benefit. This is because entitlement to ESA is based on an individual's functional ability rather than the condition itself. Individuals with lifetime impairments may be able to adapt to those conditions and take up some work. So it is important we can provide them with the right support to get back to work when it is appropriate. A claimant for whom a return to work is considered unlikely within two years will be reassessed after two years. This is because, even for claimants who are unlikely to see an improvement in their health and who are unlikely to sufficiently adapt to their condition, it is important that we do not write them off completely.
SOURCE: MS SOCIETY UK
