WORK AND THE KEY SKILL OF  'PACING'

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Returning to Work

Returning to work after or with an illness can be challenging. Persisting symptoms such as fatigue, brain fog, shortness of breath, fatigue, impaired concentration and anxiety can all make return to work more difficult.  The longer you are off sick, the harder it can be to go back to work.  If you do not feel fit enough to return to work the following steps may make a return to work feel more manageable. 

a) Talk to your GP  

When you first develop the profound fatigue, your GP will run a range of tests to exclude other conditions and give you a diagnosis. Your GP can also discuss with you how your symptoms will impact on your work and how your work may affect your symptoms. He/she may advise that you can do parts of your job or return to work part time.  Your GP can give you a fit note if your health affects your fitness to work.     

b) Talk to your manager 

Before you go back to work, it may be helpful to have a discussion with your line manager and if necessary, you or your line manager can suggest an occupation health referral.  You can discuss your proposed return to work plan with your line manager. In this meeting, it is helpful to focus on how any difficulties you have can be managed.  Where reasonably practicable, your Department can implement reasonable adjustments to help individuals. Some examples are changes to the work environment, providing equipment or flexible working arrangements. For more details see the links page. At the end of this meeting, it can be helpful to document the agreed plan as this helps everyone remember what was agreed. 

Disability Risk Assessment

A disability risk assessment can be completed for those with long term health conditions and disabilities to ensure suitable arrangements are in place to support the individual to be able to work safely.  The risk assessment form should be completed with the individual and line manager. 

Disability Adjustments

The person making a request for adjustments will often know exactly what they need to help them do their job well, but sometimes, especially if their medical condition or disability is new, like Long Covid, they need help to identify what adjustments will help them. In this case, an occupational health referral can be useful.

There are many ways managers can change the working environment to avoid discriminating against colleagues with disabilities. Managers can make adjustments that really help but it's always best to start by simply asking the employee what they feel they need. For example, managers could:

• make physical changes to the workplace, e.g. supply special visual and desk equipment, suitable chairs (home working adjustments will need to be taken into consideration too)

• change working patterns, e.g. agree reduced or flexible working or home working hours to avoid peak congestion, to accommodate medical appointments, allow additional micro rest breaks, avoidance of travel in extreme heat or cold

• arrange tailored training as changed responsibilities or work patterns can raise new problems and specialised training can help overcome these,

• allow additional time for completion of duties (which may also be reflected in an individual's adjusted objectives and annual performance appraisal),

• encourage where appropriate recordings for meetings, captions or a transcript

• reallocating tasks to other members of staff

• changing assessment procedures to make sure colleagues with disabilities are not put at unfair disadvantage, e.g. someone with Long Covid or ME may need longer to complete a timed written test or exam

• ask your H&S team for a list of possible adjustments.

Setting Adjusted Objectives

Line managers of employees with Long Covid or ME should take fully consider reasonable adjustments when setting objectives.  Objectives can be adjusted for the purposes of assessing performance at an annual appraisal i.e. by setting modified objectives for someone with Long Covid or ME in the early stages that enables them to reasonably meet them while pacing. Any changes to circumstances should also be noted when reviewing objectives throughout the year and when evaluating performance, at the end of year.

The Severity Scale

This severity scale (below) was developed for ME. It may equally be used to describe the range of severity in Long Covid. Patients find it useful to identify where they are on a scale of 1-10 (where 10 is fully fit).

There are four levels of severity in this scale. A useful way of discussing how someone feels is to use a 1-10 scale where 10 = fully fit and 1 = confined to bed completely dependent on others.

• People with milder ME can care for themselves and do some light domestic tasks (sometimes needing support) but they may have difficulties with some kinds of mobility. Most are still working but to accomplish this they have probably stopped all or most of their leisure and social pursuits and they may already have workplace adjustments. They may work reduced hours or would prefer to. They will use their weekends to cope with the working week. ‘Mild’ is only a description of their physical mobility not of how they feel internally, since people at ‘8’ still always feel ill (due to ‘malaise’) and have a minimal quality of life due to the added effort of working. If they reach ‘9’ in work, they have a sense of real wellbeing and a good quality of life.

• People with moderate ME have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped full-time work and need significant rest periods, often resting in the afternoon for 1 or 2 hours. They may manage part-time work which is not physically strenuous or from home Their sleep at night is generally poor quality and disturbed.  They may have greatly reduced social activities and probably always feel ill (7-8 on scale). They feel they have a minimal quality of life though they may be able to pursue some less demanding hobbies or interests.

• People with severe ME are unable to do many activities for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have severe and prolonged after-effects, if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound. They feel deeply ill. (4-6 on scale). Their quality of life is minimal.

• People with very severe ME are in bed all day and dependent on care. They need help with personal hygiene and eating and are very sensitive to sensory stimuli. Some people may not be able to swallow. They feel very deeply ill. (1-3 on scale).  Their quality of life is minimal.

In the workplace, line managers are likely to be dealing with part-and fulltime workers in the first two categories above (Milder and Moderate). Some of those employees may have more severe symptoms in some areas, such as brain fog, high sensitivity to light or sound.  Even in the Mild and Moderate  categories, the effects of fatigue, malaise and cognitive symptoms is limiting. Work has to be strictly paced making living a wider normal life very challenging.   People in these categories are always at risk of falling into the severe category if they drastically overdo it.  In terms of activity and recovery, even someone who has reached “9” through successful management will continue to moderate/monitor their exercise, sleep, diet and stress levels.

Case Study

Ann feels she had Moderate Long Covid (7-8 on the severity scale) because she was working at home part-time. She needed to sleep every afternoon for two hours. She now feels she has Milder Long Covid (8-9 on the severity scale) and can return to fulltime work but she needs at least twenty minutes rest, in the afternoon.  She tells her line manager who encourages her back to the office travelling off peak for one day a week, at first. She suggests she goes into a quiet room and takes a short rest to help re-energise herself in the early afternoon.  Together, they reassess this trial, in a month’s time.

The ‘social model’ of disability should be applied to all cases of ME and Long Covid to see whether the environment is proving the barrier such as building inaccessibility or the design of activities with insufficient mini-breaks are built in.

Managing Post Exertional Malaise (PEM)

PEM is like a mini relapse, a return to a more severe physical and mental fatigue which requires total rest, to possibly recover faster. The worse PEM is, the longer the rest will need to take. Sometimes it can lead to a major relapse which takes months to get better (or is possibly permanent). Some people can manage PEM in a ‘give and take’/ trade-off way to do special things that they want to do, in their professional and private lives.  

Case study

Tony has ME but wants to go on an important external visit. He knows in advance that he will get PEM. Thus, he schedules his work on the day afterwards to help him recover from the physical and mental effort of the external visit.  He discusses this with his manager in advance and lighter work is agreed for the day following the external visit, so that he can recover working at home from PEM.

PEM is triggered by over-exerting either or both the brain and the body, using >100% of the available, diminished energy supply.  The brain as well as the body feels ‘wiped out’ during PEM and even thinking, speaking, standing and sitting up becomes either impossible or very draining. Any recovery requires lying down (see the Alexander Constructive Rest Position below). 

Judging how much energy one can use needs to follow the safe golden rule “Only do 70% of what you think you can do”. This requires constantly monitoring and time-consuming forward planning.  One mistake can result in someone permanently becoming much worse, unable to work at all.

Scheduling ‘constructive rest’ and micro breaks

Micro breaks during the day are known as ‘constructive rest’.  The most effective way of speeding up recovery/recharging after PEM is The Alexander Constructive Rest Position’.  The Alexander Constructive Rest Position may speed up recovery from the more major bouts of PEM, too.  

If someone has to attend an event away from home involving hours of travel, offering them an overnight stay in a hotel local to the event, will give them a chance to pace themselves and take necessary constructive rest.

Case Study

Barry finds that sitting in a chair to rest in a quiet room is less effective at restoring his depleted energy levels than lying flat on the floor in the Alexander Constructive Rest Position which takes just 10 mins to make him feel better.  His line manager explores the building and finds a small little used room where it is possible to lie down safely. He checks with H&S and tells Barry to use it when he feels he needs to do constructive rest.

Managing Postural Orthostatic Intolerance Syndrome (PoTS)

PoTS can accompany ME and reportedly can also accompany Long Covid. Postural Tachycardia Syndrome (PoTS) is an abnormal increase in heart rate that occurs after sitting up or standing. Some typical symptoms include fast heart rate, dizziness and fainting. Some people have mild symptoms, while others find the condition affects their quality of life. PoTS often improves gradually over time and there are some medicines and self-care measures that can help.  See the annex on PoTS.

The cause is related to the effect on standing with gravity pulling some blood down to the stomach area, hands and feet. Blood vessels quickly narrow and heart rate increases slightly to maintain blood flow to the heart and brain, to prevent blood pressure dropping. This is all done normally, without needing to think about it, by the autonomic nervous system.

In PoTS, the autonomic nervous system does not work properly and there is a drop in blood supply to the heart and brain on standing so the heart races to compensate. PoTS can develop suddenly, or it can begin gradually. Symptoms can be delayed by a few minutes and lying down may relieve some of its symptoms.

Typical symptoms of PoTS include:

• dizziness, light headedness

• fainting

• brain fog and issues with thinking, memory and concentration

• heart palpitations (tachycardia) – the heart may feel it is it beating fast, skipping beats, thumping and/or fluttering

• shaking and sweating

• weakness and fatigue (tiredness)

• poor sleep

• chest pain

• feeling sick

• shortness of breath.

Some people notice that feeling hot, eating, strenuous exercise or menstruating can make their symptoms worse. Management involves fully understanding the symptoms and mitigating them through practical means where possible.

Case Study

Amy has ME with underlying Postural Orthostatic Tachycardia Syndrome (PoTS) and if she cannot find a seat on her train when commuting, she must alight from the train to sit down.  Her manager allows her to travel off peak, working on the train, so that she always gets a seat.  If this cannot be found, he encourages her to speak to a guard so that she can get a seat which is allocated for someone who cannot stand for long, but she finds this hard to do because she fears others will not see or believe her PoTS.  This is because she has received critical comments in the past from passengers who do not understand invisible disabilities. She decides to trial the blue “Please offer me a seat badge”.

Managing cognitive (brain and nervous) symptoms

ME and Long Covid are not neuro-diverse conditions but they directly affect the neurological and autonomic nervous systems. There is evidence of reduced blood flow to the brain as well as to the peripheries and micro clots. These illnesses do not affect the quality of cognition but the speed at which mental and physical tasks can be carried out as well as, probably, the capacity to undertake such tasks within a certain timeframe, without risking relapse. Concentration and focus may be affected, too.  This is why anyone affected may be wise to request more time to complete tasks (e.g. projects and exams, if they are able to sit them). 

Managers must not assume that the quality of outputs from those with these conditions are reduced by these conditions. In fact, they may be high quality. People affected are not less able or capable than before, but maintaining the quality of their outputs takes much more mental effort and involves risk to their health. Experience shows that those with these conditions will often conscientiously compensate by putting in more effort and time which is costly for them and their wider quality/enjoyment of life.  This tendency, too, should be moderated. 

People with ME and Long Covid are invisibly working far harder to do the same tasks they used to do with less effort. 

The increased mental effort required for information processing and the draining and costly added effort to sustain concentration is fundamental to understanding and successfully managing/pacing these conditions. 

In a job that is heavily focused on information processing, shortcuts and adjustments, including using technology, will help.  Good management involves building in regular mini-breaks/micro and constructive rest periods for the brain. Mini cognitive breaks such as every 15 minutes can involve

• stopping thinking for a minute

• looking away from the screen, ideally at restful greenery and nature

• exercising the hands and eyes

• standing up

• listening to soothing music

• flipping through holiday pictures/websites (creates instant relaxation)

• daydreaming looking out of the window, for a minute or two every hour

• lying down in the Alexander Constructive Rest Position which some patients with ME have found helps both the body and the brain recuperate faster.    

There may be a more productive period in the day which suits the harder cognitive tasks, if the patient  can notice at what times of the day their brain works optimally. They can then use those periods more efficiently.  Keeping a diary of symptoms in relation to effort and foods may be helpful, although the fluctuations often seem unhelpfully random.

With improvement, thinking speeds up, memory recovers and ‘brain fog’ lifts. There appears to be no long-term damage to the brain, at least in ME and possibly in Long Covid, too. The brain can ‘re-network’ during recovery which, as in a stroke, takes a considerable time. So cognitive impairment does not seem to be permanent despite reduced blood flow in the brain.  

Management techniques may include:

• asking the question “How can I pace my brain and its outputs today so that my brain does not exceed the 70% golden rule?”. 

• smarter working, i.e. higher efficiency with the limited and paced energy available alongside prioritisation of two or three key objectives/tasks each day