Wednesday, 25 May 2022

Income Protection & CPAD Assessment

Updated 06/08/26

Art behind the MEAI blurb by unknown

Information about Income Protection with Insurance Companies & the Chronic Pain Abilities Determination (CPAD) Assessment

This guide is intended to provide general information and practical guidance. It should not be regarded as legal or medical advice. Every insurance policy and individual circumstance is different, and readers should seek independent professional advice where appropriate.

Key Messages

CPAD was not developed specifically for people with ME.

The physical and cognitive demands of CPAD may pose particular risks because of the post-exertional response in ME (PENE, also referred to as PEM).

Read your insurance policy carefully before deciding whether to attend. Check the small print too.

Obtain supporting medical evidence wherever possible.

Seek legal advice if you are unsure of your rights.

Keep copies of all correspondence.

If rehabilitation is proposed, ensure it is consistent with current ME guidance.

Understanding Functional Disability in Myalgic Encephalomyelitis (ME)

Myalgic Encephalomyelitis (ME) classified as a neurological disease by the WHO can cause profound functional disability, affecting every aspect of daily life.

For people with severe and very severe ME, even the most basic activities, such as sitting up, speaking, eating, washing, or tolerating light and sound, may trigger a significant worsening of symptoms known as post-exertional neuro-immune exhaustion (PENE), also referred to as PEM.

Many become confined to bed, requiring assistance with personal care, nutrition, hydration, communication, and mobility.

Research has consistently shown that ME can result in levels of functional impairment comparable to, or greater than, many other serious chronic illnesses.

The loss of independence, combined with the unpredictable and relapsing nature of the disease, has a profound impact on education, employment, family life, relationships, and physical wellbeing.

Recognising the extent of this disability is essential to ensuring that people with ME receive appropriate care, support, and understanding.

Income Protection Payments

Our information on Income Protection Payments provides guidance for anyone making an initial claim, or appealing the outcome of an assessment or reassessment for Income Protection (also known as Salary Protection).

Anyone can become ill or injured, but a long-term illness, disability, or accident may prevent you from working for an extended period or even permanently. To help protect against the loss of income in these circumstances, many people pay into an income protection scheme, either through their employer or by taking out a private policy.

If you develop a chronic illness or disability and are no longer able to work, your income protection policy may provide financial support following a successful claim. That is the purpose of income protection. Unfortunately, our experience shows that the claims process is not always straightforward, and some people face unnecessary challenges when making a claim or appealing a decision.

Income Protection is designed to replace a proportion of your lost earnings, typically up to 75% of your normal salary (taking account of any social welfare benefits you receive) if you are unable to work because of illness, injury, or disability. Depending on the terms of your policy, payments may continue until you are able to return to work or until retirement.

Income Protection is a form of insurance available to employees, company directors, business owners, and self-employed people.

In Ireland, Income Protection policies are commonly provided by insurance companies such as Aviva, Irish Life, Zurich, New Ireland Assurance, and Royal London Ireland.

Further Reading: Please see our guidance on making an initial Income Protection claim and appealing the outcome of an Income Protection assessment or reassessment in the Further Reading section at the bottom of this page.

CPAD Assessments

CPAD stands for Chronic Pain Abilities Determination. It is a combined physical and cognitive assessment carried out over two separate days to evaluate an individual's functional capacity for work.

The assessment is most commonly used where a person reports both physical and cognitive limitations, particularly where symptoms worsen following exertion. It is used by some insurance companies, occupational health physicians, and rehabilitation providers to assist with income protection claim assessments and return-to-work planning.

The first stage of the assessment involves taking a detailed medical and occupational history, with particular emphasis on the individual's self-reported physical and cognitive abilities, symptoms, and functional limitations. This is typically accompanied by the completion of recognised pain and fatigue scales, together with relevant disability questionnaires.

The assessment proceeds over two separate days, during which physical and cognitive performance is evaluated using a range of standardised assessment tools. These may include computerised hand-held dynamometers, inclinometers, algometers, force dynamometers, work simulation tasks based on the Methods-Time Measurement (MTM) industrial standard, and computerised neurocognitive testing.

According to Form Health (UK), an independent provider of occupational health and rehabilitation services, the CPAD assessment is:

"designed to specifically and objectively measure the work capacity of an individual suffering from chronic debilitating conditions with respect to their normal occupation, utilising an extensive combination of valid and reliable testing, the results of which are free from both examiner and individual subjectivity."

Form Health provides assessment services to the insurance, occupational health, corporate, and rehabilitation sectors, including functional capacity evaluations to inform fitness-for-work decisions and income protection assessments.

Further information: See the Form Health website for additional information about the CPAD assessment here.

What CPAD Means for People with Myalgic Encephalomyelitis (ME)

For people living with Myalgic Encephalomyelitis (ME), it is important to understand how CPAD assessments are conducted, as the assessment process itself may present significant challenges for individuals who experience post exertional neuro-immune exhaustion (PENE) also referred to as post-exertional malaise (PEM).

The following information explains some of the issues that may arise and the factors that should be considered before undergoing a CPAD assessment.

The Chronic Pain Abilities Determination (CPAD) assessment is used to help determine an individual's capacity for work. However, feedback from people living with Myalgic Encephalomyelitis (ME) suggests that CPAD may not be an appropriate assessment tool for many people with this condition, particularly those with severe or very severe ME whose functional abilities are profoundly affected.

For individuals who already experience a significantly reduced quality of life due to ME, the assessment process itself has the potential to worsen symptoms. As the outcome of a CPAD assessment may influence entitlement to income protection payments or decisions regarding return to work, the consequences can have a significant impact on both a person's health and their financial security.

People with ME consistently report that CPAD is not an appropriate tool for diagnosing ME, confirming the severity of the illness, or questioning the validity of their diagnosis. ME is a complex, multisystem disease characterised by PENE, a worsening of symptoms following physical, cognitive, emotional or sensory exertion that would not have caused a problem before the illness. This hallmark feature of ME presents particular challenges for assessments that require repeated physical or cognitive testing over one or more days.

It has become increasingly clear from the experiences shared with us that:

CPAD may not accurately reflect the functional capacity of a person living with ME.

Standardised physical and cognitive testing may fail to capture the fluctuating and delayed nature of disability experienced in ME.

Many people with ME are concerned that assessors may not have sufficient knowledge of the illness, particularly the impact of post-exertional malaise, sensory intolerance, orthostatic intolerance, and the cumulative effects of exertion.

Without an appropriate understanding of ME, there is a risk that an assessment may unintentionally worsen a person's condition or lead to conclusions that do not accurately reflect their day-to-day level of disability.

CPAD assessments are usually carried out over two separate days, often in the person's home, although an alternative venue may be arranged.

Each assessment typically lasts around two hours. For many people with ME, this level of sustained physical, cognitive and sensory activity may itself constitute a significant exertion. Because symptom deterioration in ME is often delayed by hours or days, the full impact of the assessment may not become apparent until after it has been completed.

Feedback

Some members of the ME community have told us that they felt their illness was not fully understood during work capability assessments. Some have reported that the assessment process itself triggered a significant deterioration in their health, while others believe that the conclusions reached did not accurately reflect the extent of their disability or the realities of living with ME.

One individual shared with us the experience of a person with very severe ME who relied on a wheelchair for all mobility and nevertheless was assessed as fit for work during a salary protection reassessment.

We received an email from a woman with ME whose insurance company accepted her consultant’s letter confirming she was not fit to attend an assessment. The insurer cancelled the scheduled CPAD, but then proposed therapies she would be required to undertake in order to continue receiving payments.

Other feedback to us recounts a person who had a long-awaited medical appointment clash with the date of their scheduled CPAD assessment. Despite informing the insurance broker that they could not attend the assessment on the scheduled date their salary protection payments were suddenly stopped by the insurance company for their refusal to attend the assessment.

In another case the insurance company asked for medical evidence to confirm the claimant was unfit for work after they had explained they had received medical advice not to do the assessment. They provided strong letters from two specialists stating they were not fit to work but the insurance company stated that this was insufficient evidence. The person continued to be refused a return of salary protection payments after a second set of reports with greater detail were supplied to the insurance company. It is at this point that the person sought the help of a solicitor.

Some individuals have reported that therapies suggested by insurance companies can be inappropriate or unsuitable for their condition. It is important to remember that an insurer’s role is to assess a claim, not to direct or provide medical treatment. Feedback to us shows individuals who were encouraged to undertake interventions such as CBT or GET. People with ME frequently report that these approaches are not appropriate for them and, in some cases, have led to a worsening of symptoms. More broadly, any therapy, whether physical or cognitive, that increases activity levels may pose difficulties for those with ME.

"I queried the relevance of the CPAD assessment prior to doing it and I was advised by the broker to do the test regardless of what the test actually assessed, or I’d lose my payments. Needless to say, I was assessed as being capable of work as are many with ME. Showing up for the assessment appears to mean you are capable of work. No matter how unwell and disabled you may look they will use something against you to prove you are fit for work."

- ME Patient Feedback

"When I saw Dr X as part of my assessments under a well-known Irish insurance company they gave me two glances and deemed me fit for work… without a single test, without any relevant tests, and without asking me about Myalgic Encephalomyelitis (ME). I appealed and following that failed appeal I was made to jump through further hoops by the insurance company. By that I mean I was requested to do a CPAD assessment (2-day assessment in my home), and after failing that test and appealing the outcome I was sent to yet another doctor who had me fill a very long psych questionnaire, followed by a short interview, then a cognitive test on a laptop similar to the one during the CPAD assessment…. another 'failed' assessment.

I appealed again and lost again and didn't take it any further as I was too unwell and did not have enough energy to brush my teeth, whatever about being by own agent in a fight for financial support. Needless to say, I lost income. But my health was more important. I knew a lady at the time who took the Insurance Company to the High Court and won her case. That was years ago and since then I have heard that insurers make people who continue receiving payments do therapies which are totally unsuitable for people with ME, e. g. CBT/GET."

-ME Patient Feedback

Regardless of the individual circumstances of any one case, experiences such as those shared above highlight why assessments for people with ME should be undertaken by professionals with an appropriate understanding of the condition and its unique characteristics.

Additional feedback and experiences shared by people with ME can be found later in this guide. First, we'll look at the key considerations to help you make an informed decision about a CPAD assessment.

Making an Informed Decision

If you have been asked to undergo a CPAD assessment, you may feel that you have little choice. While some people decide to attend in order to comply with the terms of their insurance policy, others may feel they are too unwell to participate safely. Before making a decision, it is important to understand both your policy obligations and the potential implications for your health and your entitlement to benefits.

Despite the significant disabilities associated with Myalgic Encephalomyelitis (ME), you may or may not have a choice about whether to undergo a CPAD assessment if it has been requested by your income protection provider or another organisation.

Some people decide to attend the assessment in order to comply with the terms and conditions of their insurance policy, even though they are concerned that the assessment itself may worsen their health. Others may feel that they are simply too unwell to participate safely and choose not to attend on medical grounds.

Before making any decision, it is important to read your insurance policy carefully. Pay particular attention to any clauses relating to medical assessments, ongoing eligibility, and your obligations as the policyholder. Failure to comply with the requirements of your policy may affect your entitlement to continue receiving payments.

Insurance policies and assessment procedures can be complex, and it is not always easy to understand your rights and responsibilities. Taking the time to review the policy wording before deciding how to proceed can help ensure that you are meeting your contractual obligations while making an informed decision about your health.

Just to advise anybody who might be in the same situation as me having been called to do a CPAD. The prudent thing to do, it would seem, is to attend the assessment and then appeal if, and when, the report recommends a return to work.

- Feedback from a person living with ME

If you believe you are too unwell to undergo a CPAD assessment, or if you need to appeal a decision following an assessment, you may wish to seek independent legal advice. A solicitor with experience in insurance law or disability-related cases may be able to advise you on your options and your legal rights.

If you choose to seek legal representation, it may be helpful to ask whether the solicitor has experience of Myalgic Encephalomyelitis (ME), including its hallmark feature, PENE (also referred to as PEM), and the challenges that people with ME may face during work capability assessments.

Feedback received suggests that some people with ME continue to experience difficulties with income protection assessments and appeals, even where they have complied fully with the requirements of their insurance policy. While every case is different, attending the assessment, if it is medically safe to do so, and complying with the policy requirements may help preserve your right to challenge the outcome through the insurer's appeals process if necessary.

If You Are Offered Rehabilitation

If your claim is successful, your insurer may require further assessments or recommend participation in a rehabilitation programme. Before agreeing to any programme, it is important to understand what it involves and whether it is appropriate for someone living with Myalgic Encephalomyelitis (ME).

People with ME should be aware that graded exercise therapy (GET) is no longer recommended for ME. The 2021 NICE Guideline on ME/CFS (NG206) advises that programmes based on fixed or incremental increases in physical activity, such as graded exercise therapy, should not be offered to people with ME.

The NICE guideline committee concluded that many people with ME reported worsening symptoms following GET, sometimes resulting in prolonged deterioration rather than improvement. It also found important methodological limitations in much of the earlier research supporting GET, including reliance on subjective outcome measures, inadequate reporting of adverse effects, and the inclusion of participants who did not always meet current diagnostic criteria for ME, particularly the requirement for post-exertional malaise.

If you are offered any rehabilitation programme following a CPAD assessment, it is reasonable to ask for full details of the proposed intervention, the evidence supporting it for people with ME, and whether it has been developed in accordance with the 2021 NICE Guideline (NG206). Any programme that encourages people with ME to push beyond their energy limits or increase activity regardless of symptom exacerbation should be approached with caution.

Summary

If you are on long-term sick leave or are no longer able to work because of the severity of your Myalgic Encephalomyelitis (ME), it is important to consider carefully whether you are medically able to participate in a two-day CPAD assessment.

For many people with ME, the physical and cognitive demands of the assessment may not be appropriate because of the risk of post-exertional malaise (PEM) and symptom exacerbation. Before making any decision, carefully review the terms and conditions of your insurance policy, as some policies require claimants to participate in assessments as a condition of continuing to receive payments.

If your policy requires you to attend a CPAD assessment, you may wish to ask in advance what knowledge, training, or experience the assessor has in assessing people with ME, particularly their understanding of post-exertional malaise (PEM) and the fluctuating nature of the illness.

Be aware that insurers may suspend or discontinue payments if a claimant does not make themselves available for an assessment. This can place people with ME in a particularly difficult position: attending an assessment may risk a deterioration in health, while declining to attend may affect their entitlement to income protection payments.

If you are too unwell to participate safely, inform your insurer as soon as possible and explain that your illness prevents you from attending. Wherever possible, obtain supporting medical evidence from your consultant or GP confirming that you are medically unfit to undergo the assessment and explaining the reasons why.

We have received reports from people with ME whose payments were stopped after they informed their insurer that they were too unwell to attend a CPAD assessment. While every case is different, many insurance policies require claimants to comply with what the insurer considers to be "reasonable requests." For this reason, it is essential to read your policy carefully, understand your obligations, and seek independent legal advice if you are unsure of your rights or responsibilities.

Our hope is that by understanding the assessment process, your policy obligations, and the potential implications for your health, you will be better equipped to make an informed decision that is right for your own circumstances.

Scientific and Legal Challenges to the Functional Capacity Evaluation.

It appears that people with ME (& people with various other conditions) in Ireland have been denied salary protection payments by insurance companies who use the CPAD assessment. Some patients have reported losing payments, some have reported award/reward of payments for a few months then reassessed, then denied payments; others receive payments following reassessment but are obliged to commit to suggested therapies unsuitable for people with ME.

Many of those patients have reported that they have been assessed by an assessor from the UK who appears not to be qualified to assess ME. The CPAD assessment they use is based on a set of tests designed to stop welfare cheats etc in the UK.

A true assessment of ME requires substantial biological testing and depends on the severity of the person with ME.

There have been scientific & legal challenges to Functional Capacity Evaluation (FCE) in testing disability in ME.

Here are links to some articles on the scientific and legal challenges to the functional capacity evaluation. These are very old but show refutation of the use of Functional Capacity Evaluation (FCE) in testing disability in ME: -

Article 1 here

Article 2 here

Article 3 here

Article 4 here

What service providers say about their use of CPAD

Service providers that use the CPAD assessment describe it as an objective and evidence-based tool for evaluating an individual's physical and cognitive capacity for work.

One provider to the insurance, corporate, occupational health, and rehabilitation sectors states that "the Financial Ombudsman Service has recognised and found in favour of the CPAD conclusions in both the UK and Ireland, and CPAD has been successfully defended in the Irish High Court." The provider also refers to an "extensive literature search, peer reviews and researched components of current methods for assessing physical and cognitive abilities" in support of the assessment methodology.

However, despite these statements, people living with Myalgic Encephalomyelitis (ME) have raised significant concerns about the suitability of CPAD for assessing their condition. The principal concern is that the assessment does not appear to take adequate account of the hallmark feature of ME, post-exertional neuro-immune exhaustion (PENE) where symptoms worsen following physical, cognitive, emotional or sensory exertion. As a result, many people with ME question whether a standardised functional capacity assessment can accurately reflect the fluctuating and delayed nature of disability associated with the illness.

ME Advocates Ireland believes that any assessment of a person with ME should be informed by current clinical knowledge of the disease, including the central role of the hallmark feature, the post-exertional response, and should be conducted in a way that does not place the individual's health at risk.

Here is a PowerPoint presentation about the CPAD from one of the service providers, Form Health (UK) who use the tool. As said previously, Form Health (UK) is a service provider to the insurance, corporate, occupational health physician and rehabilitation sectors, they are specialists in assisting individuals back to work.

A Person with ME Describes the CPAD Assessment

"The CPAD appointment letters sent to me from the insurance broker said that I could have a family member or friend in attendance. It is best to do this and to ask them to answer the door, offer a cuppa, get you a drink, do anything that you need.

Here is what happened on the days of the assessment & what was said in my report following the assessment:

1) Clinical history, questions about symptoms, work history and demands of my work role, if there are any parts of my job that I can do, barriers preventing a return to work, aggravating or alleviating factors that affect work capacity, past treatments, and current treatments and how effective they are and if there are any side effects. Also questions about my average day and what I can and can't do...I was asked about hoovering, cleaning windows, cooking, opening tight jars, using cutlery, loading/unloading a washing machine, washing up at the sink, sweeping/mopping, gardening, DIY, ironing, making/changing beds, using a PC/laptop, using the toilet, shopping, showering/bathing unaided, self-grooming, getting dressed/undressed unaided, driving, travelling as a passenger, using a telephone/mobile, child care, and hobbies.

NOTES for (1) The assessor, an assessor from the UK, watched everything I did, not just the test. In the report they commented about me sitting in a chair "without apparent difficulty", that I "conversed normally at all times", "walked around the house with a normal cadence", opened a door "without apparent difficulties", and that I showed "normal cervical flexion" whilst completing the questionnaires. They used the word "normal" in the report quite a few more times describing how I approached some of the physical tasks, for example "normal reaching out" for a questionnaire and for the testing.

The assessor also wrote in my report that I performed some tasks better "on distraction" than otherwise. Not sure what that means.

The assessor’s use of language in my report created a sense that all is fine and normal and that there are no apparent difficulties.

I know that other people with ME pushed themselves to sit at the table for too long because they looked on it as an official thing that they had to complete. It is, and they may very well reject your claim outright if you don’t agree to do the CPAD, but they rely on this and use it against people. In reality people are so uncomfortable and in pain and would be better off saying so and to ask for a break or discontinue the assessment if needed. If you need to be lying down or need to lie down in the middle of it then lie down. If you have a reclining chair or sun lounger that you normally use you could have that there and say that you can’t sit upright any longer.

People make a big effort to look presentable and try hard to do it all whilst feeling awful which is not wise as then the assessor can’t see your true lack of functional ability.

Think of it as your worst day as that is exactly what prevents you working and don't make too much of an effort to be presentable.

People with ME have lots of trouble remembering things so have all your notes in a folder and refer to them, e.g., basic medical history with dates, treatments tried, symptoms, typical day, a list of chores around the house and ability to do or not do them, a list of the duties of your job and how symptoms affected these duties. Have anything there that you think that you may need e.g., dates last worked.

When you talk about your symptoms or activities don't minimise it as people with ME often do. Tell the assessor what it's like for you e.g., everything is a struggle, and everything causes more pain and fatigue.

Describe your worst day, not your best. Also, if there is a task you can do, stress that you may not be able to do it some days but when you can you can't do it for a sustained period of time or repeatedly or reliably or efficiently or in a reasonable time frame. If you say you can do it, then they will think that you can always do it or can do it all day unless you say otherwise. Also, when answering questions about your abilities it’s better to answer for what it’s like on your worst day.

2) Questionnaires and rating scales, e.g. Impact Questionnaire, Chalder Fatigue Scale and a VAS- Visual Analogue scale, all repeated on the 2nd day of testing.

NOTES for (2) Remember to describe your worst day.

3) Physical Tests.

During this set of tests, I was asked to rate my energy level and pain level before and after each activity. The pain scale is from 0-10 with 10 being so much pain that you have to go to hospital. A patient was told that the scale was 0-10 but that 7 was going to the hospital but this was not explained in the report, so it looked like her pain never went over 6.5. If the assessor says this maybe ask for clarification and ask if 7 is going to hospital then what is 10? The Fatigue Scale is from 10-20. The assessor will also tell you to stop if you feel pain. There are a lot of activities, so you have to rate a lot of times.

The physical tests come in three parts.

The first is Methods Time Measurement Analysis which tests handling and fine finger dexterity of both hands, reaching out, reaching up, Walking, Carrying and lifting. The assessor had me walking about 2 metres from the table to the kitchen and back again. The assessor asked me to lift up their big case which I tried, …that probably went into the assessor’s report also.

The second part is Functional Activity Measurements which are done by gripping and pinching a dynamometer/metal part of a machine that is connected to the assessor’s laptop and apparently measures your effort, as well as ability. The tests are Hand Grip five position, rapid exchange grip and pinch testing.

The third test is Range of Movement testing which tested my range of spinal movements. The assessor asked me to bend forward and backward from the waist.

NOTES for (3) If any of the physical tests are painful or tiring, tell the assessor. If any are beyond your capability or will do damage, tell the assessor that too. Don't tough it out or try extra hard because it will not show your true inabilities and will leave you worse off afterwards. In the information about the CPAD it says that they also do aerobic testing which is the 6-minute walk test and/or the CAFT/ Canadian Aerobic Fitness Test. You can refuse to do tests if you are not able for them and feel that you will suffer from payback as a result of having ME.

4) Cognitive Tests.

These are all done on a laptop, the time taken to complete and the number of correct/incorrect answers are recorded. They involve symbols, numbers, and letters.

The tests are:

Visual Memory testing: immediate and delayed memory recall.

Stroop test: reaction time and information processing.

Symbol Digit Coding test: visual perception and complex attention ability.

Shifting Attention Test: ability to shift from one instruction to another.

Continuous Performance test: sustained attention and reaction time.

Overall, they took less than 30 mins (a long time to try to concentrate with ME!)

NOTES for (4) These mental activities are difficult and very tiring for people with ME. Refuse to do saying you are unable/ask for a break in the middle. One of the tests has flashing images (Symbol Digit Coding) which really hurts the eyes.

That was the testing. It may not be exactly the same for you or may not be in exactly the same order. The assessor may have flexibility in which tests they use for different people."

Problems with the CPAD Assessor's Report

Feedback from people with ME shows that assessor reports following CPAD have been exaggerated, non-objective, repetitive, and surprisingly non-factual, for example, some people with ME who did the CPAD assessment received a report which recognised some issues e.g., cognitive problems, but which falsely stated they exaggerated parts of the CPAD assessment.

The word ‘exaggerated’ has been used in some reports for example, the conclusion in some reports, as per patient feedback, stated that some test results had ‘inconsistencies and discrepancies’ and ‘the physical abilities demonstrated by X cannot represent her true abilities, and I can only conclude therefore that her actual abilities are far greater than she was willing to demonstrate over both days of CPAD testing.’

Reports given to people with ME tend to look the same.

The word "normal" in some reports is used and used quite a few times describing how the person being assessed approached some of the physical tasks, for example "normal reaching out".

The assessor’s use of language in a lot of reports creates a sense that all is fine and normal and that the individual has no apparent difficulties/disabilities.

The assessor's reports appear to highlight an assessment that is not objective and quite twisted in favour of the insurer.

“I did have some breaks in testing, and I remember that the assessor watched me in the breaks. My report said that 'her abilities to wear clothes and sit against the back of an armchair (which was observed during the breaks) are not consistent with her reported tenderness.' They also declared some of my physical tests invalid as the readings were greater or less (depending on the test) than expected. The conclusion in the report stated that some of my test results had ‘inconsistencies and discrepancies’ and ‘the physical abilities demonstrated by Ms X cannot represent her true abilities, and I can only conclude therefore that her actual abilities are far greater than she was willing to demonstrate over both days of CPAD testing’.”

- Patient Feedback

Other feedback mentions similar phrases in reports, particularly the line about ‘inconsistencies and discrepancies’. In other words, the assessor infers that people being assessed are lying. Anecdotal evidence shows that people were shocked by their reports.... they felt insulted and demeaned.

Be prepared for this. Do not trust the assessor, they are not there to make sure you will be looked after, they are working on behalf of an insurance company that want rid of you, they will twist what you say and use it against you. They use language slickly and focus on the things that you can do, some of which may seem irrelevant.

“They go on to say that there are no barriers to prevent me returning to work from a physical perspective. This testing in no way showed my physical limitations. My cognitive tests apparently did not contain ‘any evidence of symptom exaggeration’ and did show that ‘there may be cognitive barriers preventing’ a return to work. So, the testing showed up the cognitive issues but not the physical. I think that this was the same for others.

The assessor’s final comment was that ‘it should however be noted that Ms X was able to converse normally at all times’ and ‘she asked very pertinent questions’......as if this somehow calls into question my claims of being ill and my inability to work. The test that is done is 'non-medical' according to my insurance company.”

- Patient Feedback

People with Myalgic Encephalomyelitis are not just up against insurance companies, they are struggling with access to welfare, to ME-aware doctors and appropriate treatment and management, as well as having to battle chronic disabling illness and putting up with accusations of being malingerers and notions of their illness being all in the head.

Progress in research and treatment has been hampered by a number of factors, including the outdated opinions of psychiatrists and some healthcare professionals, the people who should be supporting patients are the very ones going against them.

Many patients who have undergone the CPAD assessment have described the assessment as stressful before, during and after; the assessment has exacerbated their symptoms; and some have reported a decline in their health.

Image by John Herd

Claims and Appeals

Making a Claim for Income Protection Payments

Please see our webpages about the steps involved when making a claim for Income Protection Payments. The information includes advice on what to include in a claim and how to appeal a decision made against you following your claim or reassessment. More here

Important Notes

1. If you feel you cannot attend the assessment for whatever reason then you could ask what knowledge the assessor has of Myalgic Encephalomyelitis (ME) ICD G93.3 and state that you have full confidence that the assessment is not a fair one based on knowledge of the effects of stress and activity on ME. Asking the company for their policy at the start is a good opener.

2. Get a strong letter of support from a consultant to evidence your debilitating symptoms and your inability to work as well as your inability to attend an assessment. Let your consultant know that you urgently need to see them for the purposes of getting a letter to prove you are unable to do a CPAD assessment. See more further down on how a consultant can help.

3. Along with a letter from your consultant add completed questionnaires to evidence your inability to work as well as the inability to attend an assessment. The DSQ2 Symptom & Severity & PEM Questionnaires from De Paul University are based on research, are strong evidence of your illness and the impact of attending work and/or an assessment.

See links to the two De Paul questionnaires below. Complete both questionnaires and submit those with your consultant letter, etc.: -

De Paul Symptom & Severity Questionnaire

De Paul PEM Questionnaire

4. Add this Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis paper from Denmark here

5. About GET:

Workwell Foundation’s letter re inappropriateness of GET for healthcare providers who do not realise the harms caused by GET and CBT, i.e., those who try to push GET and CBT on you or a patient in your care. Send this also as it will support why you cannot do GET and at the same time show that any activity i.e., the CPAD test is unsuitable for someone with ME.

Workwell Letter

GRADED EXERCISE THERAPY(GET) WARNING handouts explaining the dangers of GET from ME International here

NICE guideline 2021 (published as “NG206 – Diagnosis and management of ME/CFS”) under the recommendations section:

Recommendation 1.11.14 — “Do not offer people with ME/CFS:”

“any therapy based on physical activity or exercise as a cure for ME/CFS”

“generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses.”

“any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example graded exercise therapy (see box 4).”

“physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.”

Definition of GET (Box 4) The guideline defines GET as follows: “Graded exercise therapy is a term used in varying ways by different services supporting people with ME/CFS. In this guideline, graded exercise therapy is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active.”

Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE

6. Add any recent test results/reports you have had that could further evidence the debilitating nature of your illness.

Anything that you send to your insurance company you could send by registered post so that you can then track the delivery online and see who signed for it and when.

All the above is enough to evidence (1) the physiological nature of your illness; (2) why any future assessments could be harmful and would cause deterioration - therefore your ‘refusal’ to do an assessment is based on the fact that you are too ill to attend and that if you did attend it will cause harm; and (3) why you are unfit to work.

But.... please keep in mind that your policy may have wording that will catch you out if you do not attend for assessment.

Preparing for a CPAD Assessment

Take someone with you if possible.

Keep a diary of symptoms before and after.

Do not push yourself beyond your limits simply to "perform well."

Tell the assessor immediately if symptoms worsen.

Ask for breaks.

Ask for a copy of the report.

Keep a timeline of everything that happens.

Record when PEM begins after the assessment.

Keep all letters and emails.

After the Assessment

Request a copy of the CPAD report.

Compare it with what actually happened.

Ask your consultant or GP to comment if there are inaccuracies.

Keep evidence of any deterioration afterwards.

Know the appeal deadlines.

Continue documenting symptoms.

Making an Appeal

You could use a supportive consultant to support you to dispute your report following CPAD assessment

It seems that the only way to dispute the CPAD report is to get a ‘bigger hitter’ i.e., a consultant who knows more about your illness than the evaluator does, to refute his claims.

Your consultant needs to get across that they are more knowledgeable and more qualified than the CPAD evaluator. Advice from an independent insurance broker to a person with ME suggested that this may be the way to go.

The Consultant could

- compare the tender point tests and question why a functional evaluator was doing a tender point test

- talk about “substantial conflicts” between the CPAD conclusions and their professional medical opinion

- state that the patient suffers from a recognised medical condition, and that based on their extensive clinical experience, the patient is genuine and has a very active disease with a full house of manifestations

- that a series of tests and procedures has excluded other organic diseases

- that in their medical opinion X is unfit for work now and in the foreseeable future

- that the CPAD evaluator is not in a therapeutic relationship with the patient

In the Holocaust vs Friends First court case the consultant’s opinions definitely had more value than the CPAD evaluator and Holohan was awarded his income protection payments, and back pay. The judge stated that “The court prefers the tender points testing of Dr xxx and Professor xxx to that of the CPAD test”.

If you were to go down this route you could also get an occupational therapist report. They can do medico-legal reports.

Data Request (not FOI)

Please see information via link on putting in a data request if you want to see what information the Insurance company hold about you e.g. reports after any assessment:

How to access your personal data under the GDPR (citizensinformation.ie): https://www.citizensinformation.ie/en/government-in-ireland/data-protection/rights-under-general-data-protection-regulation/

Sample letter below when requesting information about you:

"I, XXX wish to make an access request under section 4 of the Data Protection Act 1988 and 2003 for a copy of any information that you keep about me on computer or in manual form in relation to my claim for Salary/income Protection. Claim number ...."

Perhaps a solicitor could do a data request on your behalf if you are unable to do it yourself.

I would suggest that you are specific in the data request letter e.g., stating the assessments you had and the names of the assessors so that they do not leave out any information on you re assessments you have already had.

It’s best to send your request by registered post so that you can track it and find out the name of who signed for it and what date and time it was delivered. If the insurer claim not to have received it you can provide them with the information you have via the registered post tracking when.

Successful Appeal following CPAD Outcome

(includes a letter with details of inaccuracies in the CPAD Report)

We received a detailed appeal letter written by a person with ME who successfully had the CPAD assessment outcome overturned in their favour, i.e. the person wrote a very strong letter to the insurance company/broker to detail the irregularities and exaggerations, among other details, in the report following their CPAD assessment.

If you would like an anonymised copy of that letter please contact us at info@meadvocatesireland.com

More Feedback about CPAD

Experiences of People Living with ME

“I had permanent health insurance as part of my job. Assessment every 6 months. Got about half my salary on it. Had it for 3 years. Then the insurance company doctor said I would not get better, and my company terminated my contract so payments ended as well as job.”

“I am in the midst of a drawn-out income protection claim process that began in April. Despite an extensive two-hour interview with a nurse, an independent medical with a doctor and a report from my consultant, confirming unfit for work due to ME, post exertional malaise (PEM) and array of fluctuating symptoms, I have now been informed that I must undergo a Chronic Pain Abilities Determination (CPAD). It will be a series of physical and cognitive tests taking 5-6 hours over the course of two days to help determine the safe abilities to perform work related activities. Although I do have muscle and joint pain, it's the LACK OF ENERGY and PEM that are restricting my return to work. I feel these tests are neither appropriate or safe and would not produce results reflective of the condition. I'm hoping my consultant will write a supporting letter to indicate this. But I'm also conscious that this could jeopardize my claim being approved. I know that others in similar circumstances echo my concerns”.

“I have heard of someone who recently (within last 6 months) had to retire as she just couldn't keep going and whatever insurance she had was refused as the illness was not recognised. I think this happened to many people. I wondered if she had been able to wait until NICE guidelines would it have made any difference. It is such disgrace; she had been paying in for nearly 20 years. Another serious harm done. I think this was to pay out %of salary until retirement age.”

“I got my reports re the CPAD back from XX via the GP and apart from being dotted with inaccuracies it states that I manipulated the test in several places, in so many words. I remember having to put pegs in pegboards - quite a stupid task- and apparently I purposely manipulated that task! Not sure how that was measured!! Crackers!!”

“The assessor did a Fibromyalgia tender point test as part of the CPAD I went through, and when I asked the assessor how they could do that as they are not a rheumatologist, they couldn't really give me an answer, but did write in my report that even though I had cognitive issues I was able to ask "pertinent questions"!! Way to turn my criticism of the CPAD around and use it to their advantage!! My Insurance Company assured me that the CPAD is a "non-medical" test, so I don't know how they are allowed to carry out a test that is normally only done by rheumatologists.”

“My report following the assessment was basically the same as everyone else that I have spoken to about it.

Mine was...

- Physical capabilities- "inconsistencies and discrepancies" and a conclusion that my "capabilities are far greater than she was willing to demonstrate"

- Cognitive capabilities-"suggest that there may be cognitive barriers from preventing Ms X from a return to her normal role on any basis.

This cognitive part seems to have been then ignored by the insurance company and it was only the occupational health doctor who said I was unfit at this time that allowed my claim to be paid.”

“My friend did badly in some tests which the report highlights as very unusual but then because she was able to follow the instructions or answer questions that contradicted it - so they concluded that she was over exaggerating. It seems to me that if you do well in the tests they maintain you are fine. If you do badly then it means you are exaggerating. I don't think it considers that you might be stressed or flustered or tired or have varying conditions. Expect to be tired after it.”

“If one succeeds at these stages one is regularly assessed and possibly therapies are suggested. One lady I remember helping was told she had to do a course of CBT to fulfil their requirements for continued payments. The therapist then reports back to the insurance company to say how that's going and can possibly suggest that the claimant is fit for work.
I've heard of various types of outcomes over the years from people. If one is willing and able to keep going through the various stages it is possible to win back payments. The thing is they don't ever leave one alone. It's a good long fight.”

“I'm not sure that having a friend / husband/partner etc present changed the outcome of a CPAD assessment unlike at an oral hearing for Social Welfare, but I'd certainly suggest a friend etc for the CPAD two-day assessment so that the claimant is doing nothing at all physical i.e., answering the door, making tea etc. In fact, if at all possible have the assessment in your own home so that you are not travelling and seen to be able to travel, unless of course it's very obvious that you are immobile and using a mobility scooter or wheelchair.”

“As I understand it, if you do not comply with the insurance company's assessments then that is the end of your claim. My poor foggy brain is having trouble remembering but I think that this is in the conditions of most policies that you sign up to.”

“I questioned the assessor as to how they factor in PEM (post exertional malaise- how ill physical or mental activity makes us) and they said that that's why there is a rest day in between. I was very bad on the 2nd day of testing but that was not apparent in the test results.”

“An important point to remember is that alongside the CPAD many people have had surveillance from private investigators and been filmed going about their day. One person was filmed entering and leaving her house and entering and leaving her mother’s house and she was accused by the insurance company of being too active. Some feedback from patients alleges that they have been questioned about Facebook photos where they are out and smiling!!”

“My Facebook and my ex-partner's Facebook were looked at, even though I thought that they were both private accounts. They found my phone number on a photo of a business card on his Facebook page and rang me suggesting that I was working. Luckily it was for a catering business that never took off as he got another job so could quickly be dismissed. This is not to make you paranoid, but it is best to know that they are looking into you and will try to deny your claim on the slimmest of grounds. All done within the parameters of their income protection plan. Not to worry too much about this but just to be aware of it.”

"I was signed off to retire on ill health grounds in 2018. The Insurance Company paid out on my policy monthly for 2 years. When they asked me to attend the CPAD, I initially agreed and had a date scheduled. About 3/4 weeks before the appointment, I received notification that I had an appointment with a consultant on the same date. I had been waiting quite a while for this appointment & had hoped that investigations might help address my fatigue issues. I spoke to my doctor who said I shouldn't do anything out of the ordinary that might impact on my assessment with the specialist, so I contacted my broker, to tell them I had this appointment and wouldn't be available for the CPAD on that date.

It was then that the Insurance Company immediately suspended payments for my refusal to attend their assessment. I responded telling them on medical advice I was told not to attend. They asked for medical evidence that I was not fit to attend/return to work. I attended my two specialists within a fortnight of each other. Both provided strong letters stating I was unable to return to work. The Insurance Company said this was insufficient evidence.

My specialist advised me strongly not to submit to an assessment by any non specialist in the field nor anyone not medically registered in this country.

A second set of reports with greater detail were supplied to the Insurance Company in December and April, to no avail. At that point I went to a solicitor. The though of going through the ombudsman and having to deal with all of this myself was too difficult."

Newspaper Article

Details of an interesting case in Northern Ireland, where the occupational therapist indicated that the claimant "would be fit to work with an appropriate rehabilitation plan".

‘Ill health forced me to stop work in 2016 and Aviva paid out under my personal health insurance policies. These payments ceased on my 60th birthday last month. I also made a claim under my employer’s policy with Unum because it pays out until the claimant’s 65th birthday. Unum refused to pay the £37,000 gross a year and offered a lump sum of £60,000 instead. I turned the lump sum down as it would have left me with a net amount of £39,000.’

Irish Times Oct 25th 2020

Welfare Supports

We are sharing some information for anyone wishing to know more about Welfare Supports available that you may be interested in applying for if you find yourself in financial difficulty as a result of ill health and cessation of work and income, or because of refusals or suspension of income protection payments. Welfare supports are easier to claim and keep in contrast to Income Protection Payments, however, it takes great patience and time to deal with the Irish application processes which are slow and arduous at the best of times but there are a variety of supports to apply for. One such support is Supplementary Welfare Allowance.

Supplementary Welfare Allowance (SWA) is a means tested payment. In a means test the Department of Social Protection examines all your sources of income. To get SWA, your income must be below a certain amount. You can contact your local community welfare officer to receive that ‘emergency money’ while you are waiting for the outcome of an application and/or appeal.

Supplementary Welfare Allowance (SWA) information here.

Local Community Welfare Services can be contacted through your local Intreo Centre or Branch Office. See list of those here to find your local centre here.

Other welfare supports detailed by us on our webpages include:

Supplementary Welfare Allowance
Illness Benefit
Invalidity Pension
Disability Allowance

And we include information about Appeals Processes.

Please see more here

Further Information

Data Request

Financial Ombudsman

Solicitor/Legal Support

Union Support

Article about CPAD

We would like to hear from you

Thanks

Data Request

Please see information via link on submittinga request if you want to see what information the Insurance company hold about you e.g. reports after any assessment:

How to access your personal data under the GDPR (citizensinformation.ie): https://www.citizensinformation.ie/en/government-in-ireland/data-protection/rights-under-general-data-protection-regulation/

Sample letter below when requesting information about you:

"I, XXX wish to make an access request under section 4 of the Data Protection Act 1988 and 2003 for a copy of any information that you keep about me on computer or in manual form in relation to my claim for Salary/income Protection. Claim number ...."

Perhaps a solicitor could do this on your behalf if it is too much to do yourself.

We would suggest that you are specific in the data request letter e.g., stating the assessments you had and the names of the assessors so that they do not leave out any information on you re assessments you have already had.

Financial Ombudsman

If you are not satisfied in any way with the outcome of your communications re the insurer with regards to not being fit for the CPAD assessment, or any other future assessment that you are unable to do, you may have recourse to the Financial Services and Pensions Ombudsman (FSPO). Details of the services provided by the FSPO here: https://www.fspo.ie/make-a-complaint/how-to-make-a-complaint-to-the-fspo/

The Ombudsman route is long and laborious but is an option for you. If the Insurance company gave you a deadline before which you had to contact the Financial Ombudsman it is likely that the Financial Ombudsmans office would explain more re the deadline..as in you may have more time than the insurance co say.

More re the Financial Ombudsman (UK) here wrt Salary Protection which gives more insight to the goings on of Insurance Companies: https://www.financial-ombudsman.org.uk/businesses/complaints-deal/insurance/medical-insurance/income-protection-insurance

I have scanned the Irish Financial Ombudsman reports online re upholding or rejecting complaints against insurance Cos. re paying income protection. It's a total headache looking at those reports and I am not up to doing more but the ones I have scanned show various outcomes re going the Financial Ombudsman routes (not all ME related though)...looks like a nightmare so a solicitor route may be easier.

Here are some of the FO reports; they are difficult to look at, one is about a rejection, the other one a complaint partially upheld. I do remember being told of a case years ago where the FO rejected a complaint (ME related) then fully upheld it later.

https://fspo.ie/complaint-outcomes/decisions/documents/2021-0092.pdf

https://fspo.ie/complaint-outcomes/decisions/documents/2021-0334.pdf

One of the above cases includes this: "The Provider advises that cover would only have been offered subject to the following exclusion:

“No income protection will be payable in the event of a claim arising directly or indirectly from chronic fatigue syndrome, myalgic encephalomyelitis, fibromyalgia, anxiety state, stress, mood disorder, depression or any other mental health or functional somatic disorder.”

I think a solicitor would argue against the above..not sure how they would do that though. One thing comes to mind...if the Insurance Companies don't include ME in their schemes then perhaps you could expain the disabilities you have that prevent you from working without naming ME; a solicitor/other would advise you.

Solicitor Support

We previously heard of someone who found an article about a lady who won her case ….court case in 2016 taken by a lady, medically retired with ME, against Zurich and that it more or less mirrored individuals with ME circumstances as reported to us. Unfortunately we don’t have further details. If anyone knows of this case please get in touch.

Previous feedback from someone we had helped in the past who went down the legal route mentions that the person sought the support of a solicitor and had a successful outcome with their appeal; unfortunately this solicitor has retired. If anyone knows of a practising solicitor who has helped/or is currently supporting someone with ME in an Income Protection Payments case please let us know of the name of the solicitor so that we can suggest them to others.

"I initiated legal proceedings last year. Having used a solicitor recommended by your research & a lady who went through a similar situation. I initially met with the solicitor in February & after some correspondence between his office and the insurance broker, I was advised to take legal action."

"Just to advise anybody who might be in the same situation as me having been called to do a CPAD. The prudent thing to do, it would seem, is to attend the CPAD Assessment & then appeal if & when the report recommends a return to work etc. This is something the solicitor I went to did not advise and as a result it compromised my position as not having fulfilled the policy conditions (income continuance/protection)."

We don't have any further details about legal support unfortunately; we seldom get updates about how individuals got on after going down the legal route/other route from those who have requested help from us, which is unfortunate. We do know from one individual that the legal route is a very long and fairly expensive process with estimated costs of 40,000 euro.

Union Support with a Legal Process

An individual in touch with us about going down a legal route with their insurance company has told us that they maintained their union membership as a retiree following retirement on ill health grounds. They said that their union were willing to fund legal costs up to negotiation and mediation. Had the individual known prior to engaging a solicitor that their union, who retained a legal firm, would have covered costs (based on the fact that their legal people thought the individual had a strong case, they would likely have gone with their union.

Article

More about insurance assessments in this article about CPAD.

We Would Like to Hear from You

To help us improve our information and better support people with ME, we would be grateful to hear about your experiences if you have undergone a CPAD assessment or have been receiving Income Protection payments.

In particular, we would welcome hearing from you if:

You have successfully retained your Income Protection (Salary Protection) payments for an extended period without being required to undergo repeated assessments by your insurance company, or if you have continued to receive payments following interval or reassessment reviews.

You have been asked to participate in a rehabilitation programme as part of your Income Protection claim. We are particularly interested in learning about the types of rehabilitation or return-to-work programmes being recommended by insurance companies and your experience of them.

Your CPAD assessment concluded that you were not fit for work because of the severity and functional impact of your ME symptoms.

We Would Also Like to Know...

Were you able to have someone with you during the assessment? If so, did this help, and was their input acknowledged by the assessor?

Did the assessment cause a worsening of your ME symptoms? If so, how long did the deterioration last, and what symptoms were affected?

Were reasonable adjustments offered or made? For example, additional rest breaks, reduced testing, adaptations for sensory sensitivities, or stopping the assessment when symptoms worsened.

Did the assessor appear to have an understanding of ME, particularly post-exertional malaise (PEM), orthostatic intolerance, cognitive dysfunction, and sensory hypersensitivity?

Did the final report accurately reflect what happened during the assessment? If not, what aspects did you feel were inaccurate or omitted?

Did you appeal the outcome? If so, what was the outcome of your appeal, and what evidence did you find most helpful?

Were you asked to undergo further medical examinations or assessments in addition to the CPAD?

Were you asked to participate in rehabilitation or return-to-work programmes? If so, what programme was recommended, and did it take account of your ME symptoms and limitations?

How often have you been reassessed by your insurer while receiving Income Protection payments?

Did your consultant, GP or other healthcare professional provide supporting evidence? If so, how influential was this in the final decision?

What advice would you give someone with ME who has just been asked to attend a CPAD assessment?

Which insurance company was involved? (e.g. Irish Life, Aviva, Zurich, Royal London, New Ireland)

Your experiences help us to build a clearer picture of how CPAD assessments and Income Protection claims affect people living with ME, enabling us to provide more informed guidance and advocacy for the ME community. Would you be willing to allow ME Advocates Ireland to anonymously use your experience to help improve guidance for others or to support future advocacy work?

Please contact ME Advocates Ireland (MEAI) by email at info@meadvocatesireland.com

Thanks

Many thanks to the people in the ME community and elsewhere who have provided much of the feedback on CPAD assessments and Salary Protection issues over the last years & to a couple of people in particular who went above & beyond with their personal feedback & advice.

Please be aware that some information in the personal feedback has been changed to protect the identity of individuals who have provided us with important information with the intention of helping others. Anonymity is assured throughout any information we share from an individual's feedback.

Please Note:

We aim to keep our information on CPAD assessments and appeals as accurate and up to date as possible, drawing on the latest available evidence together with feedback from members of the ME community. This guidance is intended to provide general information and practical support rather than individual advice. Every claim is unique, and only you can decide what is right for your own circumstances. We hope that by sharing the experiences of others and providing clear, balanced information, you will feel better informed and better equipped to make the decisions that are right for you.

About Myalgic Encephalomyelitis (ME)