I am facing a big dilemma at work. I’m in my early fifties, have had ME for nearly seven years, and have managed to gradually return to part-time work. I normally enjoy my work but I’ve had real problems trying to obtain some reasonable modifications to the duties I perform. The occupational health department has been supportive but my employer has not been helpful. So I am now really struggling and considering whether I should consider taking early retirement on the grounds of permanent ill health. Is there any guidance you can offer on taking early retirement based on what I assume must be a situation that many other people with ME have to face at some point.
As you correctly point out, 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 really 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 on-going sickness 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. Most pension schemes have their own criteria as to what conditions would entitle you to draw your pension early and how they define permanent ill health or disability. So you will probably need to:
- Establish that you are permanently incapable of continuing to do your current job – whether this is due to a physical or mental condition.
- Demonstrate that there are no treatments available that could enable your return to work before normal pension age. This could apply to your current role or any alternative employment. Pension schemes will also consider whether you are working full- or part-time, and may suggest part-time working as a solution.
Apply while you are in pensionable employment for maximum benefits. This is not essential, but is recommended. Not surprisingly, some pension schemes are now placing much greater emphasis on rehabilitation and reasonable adjustments to enable an employee to return to work. So if an employer is able to facilitate a return to work, the application will be less likely to succeed. However, if an employer offers a different role or fewer hours, you may still be able to apply for ill-health retirement from your original position.
When it comes to decisions about early retirement on the grounds of permanent ill health in ME/CFS, the following key factors should be taken into consideration:
- Your current age and the age at which you would normally retire.
- The type of work you normally do.
- The state of your health and disability relating to ME/CFS.
- Any other significant and/or chronic health problems you have.
- The course of your illness so far – in other words, is it improving, static or deteriorating?
- Whether all reasonable steps have been taken to confirm the diagnosis.
- Whether your illness has been managed in an effective and appropriate manner.
- The likely prognosis and whether your ill health and disability is going to be permanent or lifelong.
The final point is often the most important deciding factor. In other words, is it now likely that your ill health is permanent? And will you never be able to return to work? On this crucial issue of permanency, it’s important to obtain a copy of the small print in any regulations which state how the pension provider defines permanent ill health.
As a rough guideline, my personal view is that an application should normally be given serious consideration if someone has been ill with ME/CFS for around 4 years, has not been able to return to work, is not making any significant progress, and has tried all appropriate forms of management. But there will be exceptions – for example, someone who is nearing retirement age, and/ or has other medical problems in addition to ME/CFS.
As to what else should be done, it will definitely help your case if you can supply a good medical report that deals with the above points. You will probably have to pay for this to be done privately, preferably by a doctor who understands ME/ CFS, if your professional body or trade union will not help.
1. If a pension provider is insisting that you have to have a course of CBT and/or GET before considering your application for early retirement and/or an occupational pension, you will probably need to go through the process of discussing this with your doctor – unless you can produce a good medical report which states that these two forms of treatment have (a) already been tried and failed or (b) are not going to be helpful and, in the case of GET, could make your condition worse.
- You can also refer to the 2015 ME Association report on CBT, GET and Pacing.
The 2021 NICE Clinical Guideline ME/CFS states that:
- GET should no longer be recommended as a treatment for ME/CFS on the grounds that there is no sound evidence from clinical trials to demonstrate effectiveness and there is substantial and consistent patient evidence of harm.
- CBT should no longer be used as a treatment for ME/CFS – although it may be of some help for people who are having difficulty with the mental distress that ME/CFS can cause.
2. We have four ME Association booklets that cover issues relating to employment, the 2010 Equality Act, and early retirement on the grounds of permanent ill-health:
- Employment Issues & ME/CFS.
- Obtaining an ill-health pension.
- Prognosis, permanency, and quality of life.
- Disability Classification and Illness Severity Definitions.
If your application is refused you could consider taking legal advice from a solicitor with expertise in this area, or going to the Pensions Ombudsman if you feel that you have a strong case.
- The ME Association has produced a free summary of the 2021 NICE Clinical Guideline for ME/CFS. We recommend that people with ME/CFS familarise themselves with the content and discuss relevant recommendations with their GP, ME/CFS Specialist Service, and social care service providers (if applicable).
Medical Matters is for information purposes only. The answers provided by Dr Shepherd and the ME Association’s other expert advisers should not be construed as medical advice. We recommend that any information you deem relevant is discussed with your GP as soon as possible. It is important to obtain advice from a GP who is in charge of your clinical care, who knows you well, and who can consider other likely causes for symptoms. Seek personalised medical advice whenever a new symptom arises, or an existing symptom worsens. Don't assume that new or worsened symptoms are a result of having ME/CFS.