New Leaflet: Pensions – obtaining an ill-health pension, prognosis & permanency in ME/CFS

Dr Charles Shepherd, Hon. Medical Adviser, ME Association

New 7-page Leaflet from the ME Association:

Obtaining an Ill-Health Pension, Prognosis & Permanency

Extracts:

All employees have a right to ask their employer to make reasonable adjustments to ensure they are not disadvantaged at work due to a medical condition or disability.

And if these adjustments make it possible to continue working, taking early retirement is not going to be an option.

However, there are situations where adjustments are far more difficult to make – in which case taking a pension earlier than anticipated is an option that may need to be considered.

Ill health retirement – also known as being ‘medically retired’ – is when you draw your pension before the age of 55 (or the scheme’s ordinary retirement date) due to ongoing ill health or disability.

To be successful a decision will normally be based on the fact that you can no longer continue to work in your normal job, or one that seriously reduces your earning potential…

When it comes to decisions about early retirement on the grounds of permanent ill health in ME/CFS this can be a fairly straightforward process. However, for some people it soon becomes clear that all kinds of hurdles are being erected in order to delay making an early payment.

These are the key factors that are likely to affect a decision as to whether an application will be accepted (the leaflet expands on these points):

1. How does the small print in the pension policy define permanent ill-health?

2. How long has your ME/CFS persisted and how is it progressing?

3. Is the diagnosis of ME/CFS correct?

4. Has ME/CFS been properly managed?

5. Have cognitive behavioural therapy (CBT) and graded exercise therapy (GET) been attempted?

Despite the removal of GET as a recommended approach to management in the new NICE clinical guideline on ME/CFS (2020 draft edition), it will take some time for this significant change to feed through to employers and to pension providers.

CBT is still featured in the new guideline but as a tool that might be employed for learning to accept, adapt, and to cope with the understandable effects that ME/CFS can bring to a person’s mental wellbeing.

Neither GET or CBT can be regarded as curative for ME/CFS. However, some  pension providers may still want to know what efforts have been made to try and improve a person’s health and how effective any effort might have been.

The new NICE guideline will formally be published in April 2021.

It recognises that previous efforts to base causation on ‘psychosocial’ theories had little merit and that explanations for continuing ill-health are more likely to be based on an underlying disease pathology for which there is currently no effective treatment available.

The NICE clinical guideline is now very much centred on symptom relief and energy management (Pacing) – which is a safe approach that the ME Association has been championing for many years.

6. How old are you?

7. Do you have any other medical conditions?

8. Challenging adverse decisions

Prevalence, Quality of Life, and Permanent Ill-Health

This section considers what to expect from a diagnosis of ME/CFS in terms of disability, improvement, recovery, and quality of life, based on research evidence and clinical opinion.

1. Prevalence: how many people are affected by ME/CFS in the UK?

2. Prognosis: what are the chances of recovering from ME/CFS?

3. Factors believed to influence prognosis

4. Research into prognosis

5. Symptom severity: mild moderate severe and very severe

6. Quality of life: what can I expect following diagnosis?

7. Quality of life: age and illness duration

8. Quality of life: mental health

9. Permanent ill-health

In the absence of good quality research evidence on prognosis it is very difficult to provide accurate assessments on an individual basis. And while there have been studies published that examine prognosis, some of these have an inherent selection bias, as they are often based on more severe cases and in hospital environments.

There is an urgent need to carry out what are called longitudinal studies that examine the epidemiology of ME/CFS and track the progress of people with the condition over long periods of time.

Most current conclusions are based on clinical opinion and evidence collected by the Department of Social Security’s Expert Group on Chronicity and Prognosis, which produced their internal report in 1996.

Overall, there is a wide variation in both severity and duration of illness, and as already noted in the section on prognosis it appears that most people with ME/CFS will show some degree of improvement over a period of time, although this is often years rather than months.

Health and functioning rarely return to the individual’s previous level of health, and most of those who feel relatively recovered stabilise at a much lower level of functional ability than before the start of their illness.

A substantial number, possibly the majority, pursue a fluctuating course with periods of relative remission and relapse. A small but significant minority become severely and permanently disabled although progressive deterioration is fairly unusual.

The above observations all demonstrate how difficult it can be making a judgement on the likelihood of permanent ill health in someone with ME/CFS.

10. Professional opinion: Dr Charles Shepherd

11. Additional information

12. Research references

The ME Association

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