ME and Work A5 Booklet v8

8/4/2019 ME and Work A5 Booklet v8

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Transorming the world o M.E.

M.E. and workMyalgic Encephalomyelitis or Encephalopathy (M.E.)is also diagnosed as Chronic Fatigue Syndrome (CFS)or Post Viral Fatigue Syndrome (PVFS).


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ForewordHaving a long term illness, or caring or

someone with M.E., oten aects your work and, potentially, your income.

It can be tough. You will need to makecompromises and your priorities are likely tochange. It is important to consider your limitsand be realistic about your health and/orabilities.

Some people with M.E. will not be able to workat all and will have to rely on savings, welarebenets, insurance or private income.

Some will be well enough to do an hour or twoo voluntary work, at home or in the community,at times which accommodate the fuctuations o

their illness.Some people with mild to moderate M.E. areable to work part-time or even ull time as theymove into recovery.

This booklet is or people with M.E. who are inwork or considering employment. It has beenproduced with help rom people with M.E.,

Nikie Catchpool, Joint Speciality Lead andOccupational Therapist, Bath and WiltshireCFS/M.E. Service and Emma Ie and IsabelRegan, employment specialists at Allen & OveryLLP.

Cover photo: www.istockphoto.com


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ContentsWho are we? 4

You, M.E. and work

Legal context 6

Equality Act 2010 6

NHS Plus guidelines 7

CIPD guidance 8

Rights o carers 8

Reasonable adjustments 9

I you have a job 13

I working isnt working 20

I you are looking or work 22

I you lose your job 26

Money matters (in or out o work) 27

Appendix 1: How other employers help their sta 30

Appendix 2: Basic guide to pacing 35

Useul contacts 37


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Who are we?Action or M.E. is the UKs leading charity or people with M.E. and their carers.

We provide inormation and support to people aected by M.E. and theircarers and campaign or more research, better treatments and better servicesor them.

As well as booklets, actsheets and online inormation, we also run twohelplines or people with M.E.: a condential support line (open to all) and awelare rights advice line (or Supporting Members o Action or M.E.).

Call 0845 123 2380 or opening times or to nd out more about becoming aMember.

Or go to www.actionorme.org.uk

You, M.E. and workM.E. is dened as a neurological illness by the World Health Organisation. It is

thought that around 250,000 men, women and children in the UK have M.E.,although it is most common in women aged 25-50. In the working population,as many as 1 in 250 may have M.E.

Symptoms can include persistent exhaustion (atigue), pain, sleep disturbance,fu-like symptoms such as headache, sore throat, painul lymph nodes,dizziness and/or nausea and problems with memory and concentration. Levelso severity range rom mild and unctioning to housebound or bedbound.

As M.E. is a fuctuating illness, symptoms can also vary day-to-day. This canmake it dicult to maintain a consistent level o working, which can berustrating and challenging or you and or an employer.


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This booklet outlines the legal rights o people who may qualiy as disabledunder the Equality Act 2010 and the support which may be available to helpyou stay in work, i you lose your job and when you are well enough to return towork.

Understanding M.E. and the treatments available to help you manage yoursymptoms is important. More inormation is available in our booklets, All aboutM.E. and Pacing for people with M.E. Another o our booklets, An employersguide to M.E., may also help your manager. To order your copies, call 0845 1232380 or download them ree rom our website www.actionorme.org.uk

Managing your symptoms

There are no wonder drugs or treatments that can cure M.E. but there are many

approaches open to you and your doctor that can make a dierence to howyou eel and give you back control over your situation.

It is important to establish a relationship with your doctor so that you candiscuss all the management approaches available and problem solve anyissues together.

I let untreated, symptoms such as pain, sleep diculties and mood problemscan take over your lie and get in the way o recovery. Your doctor and otherhealthcare proessionals can help to treat these symptoms by prescribing

medication and suggesting changes in your liestyle.

Some areas have specialist NHS clinics which oer atigue management.Strategies that may be used include activity/energy management (pacing),graded activity/exercise therapy (GAT/GET) and cognitive behaviour therapy(CBT). These therapies should be supervised by practitioners trained inCFS/M.E.

PacingLearning to successully manage activity and rest is oten reerred to as pacing.Pacing is an energy management technique which involves:

taking short, regular rest periods throughout the day

identiying activities which use energy (physical, mental or emotional)

establishing a sustainable baseline or each activity

once the baseline is established, increasing that activity by no more than10%, until a new sustainable baseline is achieved.

A short introduction to pacing is given in Appendix 2 on p 35.


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Legal contextYour employers legal responsibilities to you as an employee with M.E. include

the standard obligations under your contract o employment plus theadditional responsibilities they may have towards you as a person with along-term fuctuating condition i you qualiy as disabled under the EqualityAct 2010.

Please note: This booklet and the inormation given on our website are oeredas a general guide and do not constitute an authoritative description o the law,nor should they replace proessional legal advice.

Equality Act 2010The Equality Act 2010 has incorporated and built upon the DisabilityDiscrimination Act 1995 and nine other pieces o equality legislation.

It covers the same groups that were protected previously on the grounds odisability, age, gender reassignment, race, religion or belie, sex, sexualorientation, marriage/civil partnership and pregnancy/maternity but itchanges and extends the responsibilities o employers in some respects.

The Equality Act 2010 denes disability as: a physical or mental impairmentthat has a substantial and long-term adverse eect on the ability o anemployee to carry out normal day-to-day activities. Substantial means morethan minor or trivial. Impairment may cover, or example, long-term medicalconditions and fuctuating or progressive conditions.

M.E. is a long-term fuctuating condition which in most cases has a substantialand long-term adverse eect on the ability o an employee to carry out normalday-to-day activities.

What does this mean or you?

The Advisory, Conciliation and Arbitration Service (ACAS) says the Act:

puts a duty on employers to make reasonable adjustments* to help staovercome disadvantage resulting rom an impairment. (*Find out moreabout reasonable adjustments on p 9).

states that it is discrimination to treat a disabled person unavourablybecause o something connected with their disability

makes indirect discrimination applicable to disabled people eg. a jobapplicant or employee could claim that a particular rule or requirement anemployer has in place disadvantages people with the same disability


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makes it unlawul, except in certain circumstances, or employers to askabout a job candidates health beore oering them work.

The Act brings in new protection or disabled employees, described by ACASas, the concept o discrimination arising rom disability, i a disabled person is

treated unavourably because o something arising in consequence o theirdisability.

Disabled people are also protected rom discrimination by perception and withregards to rules or policies that apply to everyone but which disadvantage aperson with a disability.

Employers are potentially liable or harassment o disabled sta by people theydont employ. The carers o a disabled person are also now protected romdiscrimination by association.

Employees can now complain about behaviour they nd oensive even i it isnot directed at them.

They can also claim victimisation i they are treated badly because they havemade or supported a complaint or grievance under the Act.

NHS Plus guidelines

In addition to guidelines or GPs and other healthcare proessionals involved in

diagnosis and symptom management (see below) the NHS has producedguidelines or employers and employees.

NHS Plus published Occupational aspects of the management of chronicfatigue syndrome: a national guideline and Occupational aspects of chronicfatigue syndrome/myalgic encephalomyelitis: evidence-based guidance foremployers, in October 2006.

Their leafet or employers says: Most people with CFS/M.E. are likely to allunder the remit o the Disability Discrimination Act 1995 now contained inthe Equality Act 2010 where there is a requirement to make reasonableadjustments. These may include measures such as: changing locations o work,working rom home, modiying work hours, reducing workloads, reducingphysical tasks, making provision or a wheelchair, fexibility in working patterns.

NB. Links to NHS Plus guidelines, the National Institute or Health and ClinicalExcellence (NICE) clinical guideline and NHS Scotlands Good PracticeStatement or healthcare proessionals may be ound on our website,www.actionorme.org.uk


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CIPD guidance

In 2010 the Chartered Institute o Personnel and Development (CIPD) joinedorces with the British Occupational Health Research Foundation, Health andSaety Executive and Healthy Working Lives to produce guidance on Manager

support for return to work following long term sickness absence.

It tells managers that the necessary skills and behaviours include: staying intouch regularly with the individual while they are o sick; reassuring them thattheir job is sae; preventing them rom rushing back to work beore they areready; providing a phased return to work; helping them adjust to the workplaceat a gradual pace; asking the individuals permission to keep the team inormedon their condition; encouraging colleagues to support the individualsrehabilitation; holding regular meetings to discuss the individuals condition

and the possible impact on their work.

Rights o carers

Carers have a legal right to take (unpaid) time o or dependants (there areexceptions or some jobs).

The Work and Families Act 2006, Employment Rights Act 1996 and Equality Act2010 support carers rights to:

request fexible working time o in emergencies

parental leave.

A request or fexible work may involve a change in hours, time or place owork, including working rom home.

Sta have a right to take a reasonable amount o time o work to deal withcertain unexpected or sudden emergencies and make any necessary longer

term arrangements. In the case o a dependant with M.E. this could apply ithe person with M.E. has a relapse, needs to be accompanied to a medicalappointment, or i usual care arrangements break down eg. someone wholooks ater the sick person ails to turn up as arranged.

Parents o young or disabled children are entitled by law to a period o unpaidparental leave. Parents with long-term sick or disabled children are entitled bylaw to request fexible working arrangements in some circumstances. Althoughthere is no automatic right to fexible working, an employer has a duty to giveserious consideration to such a request.

Sources o help or carers may be ound in the amily and riends section o ourwebsite, www.actionorme.org.uk and in our booklet or carers, which is ree todownload or available or a small charge rom 0845 123 2380.


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Reasonable adjustmentsUnder the Equality Act 2010 (see p 6), i you have a physical or mental

impairment that has a substantial and long-term adverse eect on the ability tocarry out normal day-to-day activities including a long-term fuctuatingcondition you may be regarded as disabled under the Act.

I this applies to you then, as under the Disability Discrimination Act, youremployer should make reasonable adjustments to the workplace and toworking practices, so that you (as a disabled employee or job applicant) are notat a disadvantage.

Adjustments might include:

fexible hours and time keeping

changes to your workload

changes to your working environment

regular review meetings

support rom an occupational health proessional.

These are described in more detail on pp 10-12. Talk to your employer soonerrather than later. The earlier such adjustments are made, the easier it could be

or you to mange work alongside your symptoms and the better your chanceso staying in work.

Access to Work Programme

Advice and nancial help may be available through the Access to WorkProgramme. Access to Work provides practical advice and nancial support tohelp overcome the barriers to work experienced by people who have long termhealth problems. The programme is fexible to try and meet the needs o thedisabled person and their job.

Potential changes to physical eatures, eg. making premises wheelchairaccessible or providing practical aids and equipment to help you do your job,may be unded through the Access to Work Programme.

Contact the Disability Employment Adviser at your local Jobcentre Plus oceor go to www.direct.gov.uk or advice in England, Scotland or Wales or go toNI Direct (www.delni.gov.uk) or Northern Ireland.


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Flexible hours and time keeping

How can you make the most o your available energy, without setting yourselback by doing too much? Would it help to:

change your working hours to avoid rush-hour travel

work fexi or reduced hours

work rom home i possible

have a xed shit, i you do shit-work

take longer or more requent breaks away rom your desk/computer/workstation

attend medical appointments during working hours i required.

Speak to your boss to see what can be arranged.

Please note: it is very important to nd out rom the start i there would be anychanges to your pay or benets i your role changes or your workload isreduced.

Changes to your contract or the way you work may cause resentment amongstother sta unless they understand why it is happening. How much you tell themis down to you (see p 14). Your employer could help by including reasonable

adjustments or long-term health conditions and disability in the organisationssickness policy.

Workload

You need to incorporate work into your pacing programme (see p 35).

NHS Plus occupational guidance on CFS/M.E. lists modiying work hours,reducing workloads, reducing physical tasks among the reasonable

adjustments an employer might be expected to make or a person with M.E.,as well as changing the location o work, working rom home and oeringfexibility in working patterns.

Discuss your workload with your manager. Re-assigning tasks to anothermember o sta on a temporary or permanent basis can ease the pressure onyou and may help to reduce your need or time o. This may lead to adiscussion about who else needs to know about your situation.

Again, make sure you know i there will be any adjustments to your pay or

benets i your workload is reduced.


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Changing the working environment

Small modications to the working environment can make a big dierence.

Examples might include:

providing you with a a quiet area where you can rest without being disturbed

permission to use an allocated parking space near to the entrance o thebuilding

altering the type o lighting or the location o your workstation i you are lightor noise sensitive

giving as much notice as possible o any disruption to your workingenvironment or routine.

The Access to Work programme can provide help with adapting premises toaccommodate a wheelchair (i required) or provision o other practical aids andequipment (see p 9).

I you would like to raise awareness about M.E. in your workplace, display ourawareness-raising posters and leafets. They are available ree rom ourMembership Coordinator on 0845 123 2380.

Review meetingsRegular perormance reviews provide an opportunity or both you and youremployer to discuss whether your workload and hours are sustainable.

I you can manage it, participation in sta meetings in person or by phone isa valuable way o keeping up-to-date, involved and part o the team.

This is particularly important i you are working reduced hours.

I you have cognitive problems, nd out i it is possible or you to get a

summary o meetings. Receiving written as well as verbal instructions may alsobe helpul.

Is there any inormation you must have, that you may miss i your hours arereduced or you are o sick? Can someone ensure that you get it?

It is important to get decisions made about your role and income in writing.

Keep a brie, dated record o any discussions about changes to your job,support oered, review meetings and return to work.


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Occupational therapy and work advice

Occupational therapists (OTs) advise employers (managers and humanresources), work with occupational health and assist employees who have anillness or disability.

The Health and Saety Executive website (see p 37) has a useul page whichexplains the role o OTs in:

risk assessment and risk monitoring

retention programmes and absence management

return to work programmes

workplace modications.

They also explain how to contact an OT through Jobcentre Plus, your localauthority social services department and other means. Another source oroccupational therapy is via a specialist NHS CFS/M.E. clinic.

The College o Occupational Therapists has an online directory o independentpractitioners at www.cotss-ip.org.uk

For general advice rom an OT, see opposite.


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I you have a jobWhen you have been diagnosed with a chronic illness, you may eel worried or

unsure about telling people at work (see p 14).It is important to know where you stand legally (p 6) and whether your employeris willing to make reasonable adjustments (p 9).

Incorporating work into your pacing programme (see p 35) can be a challenge.I you can, get the help o an Occupational Therapist (OT) who understandsM.E.

Other actors to consider include:

maintaining good communications with colleagues (see p 15)

what happens i you have to take time o sick (p 16)

what to do i youre bullied (see p 19).

This section looks at some o these issues.

In work? An OTs advice

The ollowing text rom Specialist Occupational Therapist Bev Knops, has beenextracted rom Pacing v work: the impossible dilemma?, published in Action orM.E.s membership magazine InterAction, Summer 2010:

Many o our clients consider either a temporary or permanent reduction inworking hours which will minimise the risk o overexertion. This may leaveenough energy to participate in other activities or at least avoid collapse onreturning home ater work.

Obviously employees are concerned about a reduction in pay; however, it is

possible to negotiate part-time hours with ull pay temporarily, anyway.Regular rest breaks are so useul. Negotiation with employers or more requentrest breaks, and timing these according to their own needs rather than apre-determined schedule, may be possible.

Where to take good quality rest breaks in a busy, noisy work environment?I have worked with people who successully rest in toilets and stairwells.Personally I would preer to retreat to my car. Use o an iPod or similar can blockout background noise, and can also be used to listen to relaxation recordings

during a break.


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Being able to say no to additional work tasks, particularly when you eelpressurised to prove you can continue to work eectively, is dicult. However,we have ound that this ability, plus other communication skills are particularlybenecial in sustaining work and working relationships.

Good communication with employers, and in particular line managers, isessential. It may be helpul to organise a meeting with your employer to discusshow you are currently coping and what changes may enable you to sustainwork. This seems to bring greater understanding than ocusing on barriers, orassuming that employers should know how to help. Remember you still havevaluable work skills dont be araid to discuss those, too.

Pacing in the work place can be a huge challenge but the structure androutine o work can also support pacing. I have several clients who can pacebeautiully at work during the week but it all goes to pot at the weekends.

Disclosing your illness

You may think o yoursel as ill rather than disabled but having a long-termfuctuating illness which adversely aects daily lie may be regarded as adisability under the Equality Act 2010 (p 6).

The Equality Act 2010 aims to protect people who have a disability romdiscrimination (both direct and indirect) in the workplace. Potential employers

are not allowed to ask health-related questions, except in speciccircumstances.

Disclosing a disability lets employers know they need to make reasonableadjustments to the recruitment process or to support a disabled person inwork. Disabled people and their employers are entitled to apply or help romthe government through Access to Work. They are also entitled to apply ordisability benets.

You dont have to disclose a health problem or disability to an employer, unlessit could cause health and saety problems eg. i your M.E. causes cognitiveproblems, there would be an issue i you couldnt concentrate and your saetyor someone elses might be at risk as a result.

You may be worried in case disclosing your M.E. will put you at a disadvantage,label or stigmatise you, especially i bullying is a problem at work. Or you maybe concerned about what will happen to the inormation you will provide.

I you tell your boss or employer about your illness, you can ask them to treat

the inormation as condential.


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Confdentiality

The Data Protection Act says employers must ensure condential andappropriate handling o sensitive personal data, which includes inormationabout a persons health.

This means that inormation about your M.E. should not be shared with anyother person, inside or outside the organisation, without your prior, expressedconsent.

Some colleagues may need to know about any adjustments to hours, workpractices or environment that are agreed. However, they do not need to knowthe precise medical reason why, unless you want them to.

Maintaining good communicationsWhether or not you disclose your M.E. at work, maintaining communicationswith your employer and workmates is important in terms o proessionalism andgood will.

People are not interested in the daily ups and downs o someone elses illnessbut your line manager does need to understand the fuctuating nature andimpact o your symptoms. Giving them a link to the employers section o ourwebsite, www.actionorme.org.uk, or a copy o our leafet on M.E. and workor

our Guide for employers may help.

Some people will need to know i there are going to be changes to your hours,duties or place o work and i there will be a practical implication or them.

It may be unnecessary, or it may be diplomatic, to inorm others.

You may need help to do your job or to make sure you dont miss out on keymeetings and documentation.


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I you are o sick

People with M.E. oten eel under pressure to continue working when they rstbecome ill or when their symptoms worsen.

Unortunately, trying to push on through this illness can be counter-productive, potentially causing longer sickness absences and slowing recovery.

I you are o sick with M.E., you may eel too ill to think about anything else butyou must meet your contractual obligations.

You must tell your employer straight away i you are too ill to go to work.

How and when you must tell them is usually described in your contract or stahandbook. (In turn, your employer has a duty to record sickness absence eg. orsick pay purposes).

Many organisations require a phone call directly rom the sick person, i theyare not coming in to work. They may not accept an email or text rom you or acall rom another person.

I you are ill or up to 5-7 days, you can usually complete a orm on your return(sel-certication), so you can get sick pay. Ater this time, you will usually haveto get a t note rom your GP.

I you do not meet your contractual obligations about contacting work and

getting a t note rom your GP when required, sick pay may be reused and youmay ace disciplinary action.


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Fit note

The t note (or Statement o Fitness or Work) was introduced in place o thedoctors sick note on 6 April 2010.

The main changes mean your GP will be able to say i they think you are not tor work or may be t or work taking account o the ollowing advice withtick boxes or:

a phased return to work

altered hours

amended duties

workplace adaptations.

Your doctor may make suggestions about the types o support your employercould provide to help you back to work.

Your employer isnt obliged to do what the doctor suggests but i they dont,they should act as i you are not t or work.

The t note allows your GP to comment on the unctional eects o your illness.

Long-term sickness

When an employee is genuinely experiencing diculties in carrying out theirjob because o a long-term fuctuating health problem, this as a capability anda disability issue not a disciplinary matter or poor conduct.

I you are o work long term, your employer should keep in regular contact,discuss options or returning to work, arrange return to work interviews anddiscuss a getting back to work programme with you.

Your employer should make reasonable adjustments (p 9) and support a

phased return to work, to help you to continue in work.I you decide to reduce your hours or change your role, make sure you knowwhat i any impact this will have on your income.

Supporting Members o Action or M.E. may wish to call our Welare RightsLine or advice on benets in work. Go to www.actionorme.org.uk or tel0845 123 2380 or opening times.


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M.E.-appropriate phased return to work

Returning to work ater a period o illness with M.E. requires a much moregradual approach than most other phased returns.

It is important that work and travel to/rom work is incorporated into yourpacing programme.

A return to previous hours within eight weeks, as happens with some otherillnesses, is unlikely even eight months may be ambitious!

A gradual but sustainable return is recommended.

Short but manageable regular periods o work are most productive eg. 2 x 1 or2 hours o fexible work a week, some rom home, or several weeks, until youcan increase your activity level by 10% and sustain it over time.

It is a good idea to discuss a structured but fexible plan with your employer, sothat both o you understand and agree the process.

It is important to expect some fexibility in these plans, making allowances orsetbacks or relapses and bearing in mind that you may eel obliged to overdoit in an eort to prove all is normal again!

NHS Plus occupational health guidelines say that in developing a return to workplan, the ollowing should be considered:

building up work, or work related skills, at home at rst

starting with shortened hours and gradually building them up

starting with a reduced workload and gradually increasing it

ensuring that regular breaks are taken

ensuring that the individual has a regular review with an occupational healthproessional.

Reasonable adjustments (see p 9) or periods o fexible working (possibly romhome) can also help to ensure a smooth transition.

Whatever the terms o your return to work, make sure you know what paymentarrangements will apply and or how long.


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Bullying at work

Some working environments are supportive, others are not. The Equality andHuman Rights Commission says people with a disability or long-term illness areover twice as likely to report bullying or harassment in the workplace.

ACAS says: Bullying and harassment means any unwanted behaviour thatmakes someone eel intimidated or degraded or humiliated or oended. It isnot necessarily always obvious or apparent to others, so it can happen in theworkplace without an employers awareness.

Bullying or harassment can be between two individuals or it may involvegroups o people. It might be obvious or it might be insidious. It may bepersistent or an isolated incident. It can also occur in written communications,by phone, email not just ace-to-ace actions.

The Equality Act 2010 denes harassment as unwanted conduct related to arelevant protected characteristic [ie. age, disability, gender reassignment,marriage and civil partnership, pregnancy and maternity, race, religion or belie,sex and sexual orientation] which has the purpose or eect o violating anindividuals dignity or creating an intimidating, hostile, degrading, humiliatingor oensive environment or that individual.

Bullying or harassment is never acceptable and, i you have an illness like M.E.,the stress can make your symptoms worse. I you are being bullied, tellsomeone you trust even i you are unsure, embarrassed, araid youre justbeing over-sensitive, worried about victimisation or reluctant to get someonein trouble.

Your sta handbook may have a policy on bullying, which tells you who tospeak to. It may be your line manager or, i they are the problem, their manageror your personnel/HR department, sta representative or union representative.

ACAS operates a ree helpline on employment-related issues, 8am-8pm,

Monday-Friday and 9am-1pm Saturday. Tel 08457 47 47 47. Their leafet onbullying can be downloaded rom their website, www.acas.org.uk. It oersadvice on what to do i you are thinking about conronting the bully, making aormal complaint and i necessary, taking legal action.

For a listening ear out-o-hours, contact the Samaritans (www.samaritans.org)on 08457 90 90 90.


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I working isnt workingI it becomes apparent that your health is not getting any better or that your

employer is unwilling or unable to support you, you need to take stock.There are a number o steps to consider, depending on how arcommunications have broken down:

keep a record o any discussions, meetings, emails, letters or othercommunications and actions you take to try to remedy the situation

open other channels o communication

seek advice

invoke your organisations grievance procedure

try mediation

take legal action.

Communication

I your manager is unsupportive, is there someone else you can talk to to try to

improve matters?Your managers manager, Personnel/HR, an employee representative or tradeunion ocial, i you have one?

Advice

Do any o the ollowing have any advice?

Your union, i you have one

The Disability Employment Adviser at your local Jobcentre Plus

An employment adviser at your local Citizens Advice Bureau

ACAS, the advisory, conciliation and arbitration services helpline on08457 474747 or, i you are in Northern Ireland, the Labour Relations Agency(LRA) see p 37.


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Grievance procedure

I speaking to your manager and others doesnt work, you may wish to considerinvoking your companys standard grievance procedure. This is usuallydescribed in the sta handbook. Keeping a record, as described opposite, may

be useul here.

You may be required to have raised the issue in this way i you later take legalaction against your employer.

Mediation

Will your employer agree to try mediation through ACAS or the LRA (see p 37)to try to reach an amicable solution?

These organisations have specialists who will try to help you and your employerto sort out the problem.

Legal action

I your employer has ailed to meet the requirements o the Equality Act 2010and you do not reach an agreement through ACAS or the LRA, you could takeyour employer to an employment tribunal and claim disability discrimination.

Employment tribunals are independent judicial bodies which consider disputesabout employment rights (including dismissal, redundancy and discrimination)between employers and employees.

The Employment Tribunals Service says you have grounds to go to tribunal iyou have suered a detriment, discrimination including indirect discrimination,and discrimination based on association or perception, harassment orvictimisation and/or dismissal on grounds o disability or ailure o employer tomake reasonable adjustments.

However, going to an employment tribunal is not an easy option and wesuggest that you rst seek advice rom the ACAS helpline, 08457 47 47 47,Citizens Advice and/or your union i you are a member o one.

It is important to get experienced advice as soon as possible as a claim to anemployment tribunal must be made within three months o dismissal or the acto discrimination complained o.


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I you are looking or workPart-time work, fexible hours, the opportunity or rest breaks and the option o

working rom home can all help you to manage M.E. and work within yourpacing programme but nding a job which allows you to manage yoursymptoms and/or nding an employer who is able and willing to supportsomeone with a complex fuctuating condition is not always easy.

In most cases employers are not allowed to ask job applicants about theirhealth (see pp 23-23). The Equality Act 2010 (p 6) aims to prevent employersrom discriminating on the grounds o long-term ill health or disability and tomake reasonable adjustments (p 9) to support people in work.

Some people reresh their skills by doing a course at their local college or tryvolunteering rst.

Jobseekers

Your local paper, Jobcentre and online job sites including the Directgovjobseekers database are starting points.

Directgovs Next Step site oers practical advice on building your cv,

application orms, covering letters and interview techniques.I you do decide to disclose your M.E., your local Jobcentre should be able toput you in touch with a Disability Employment Adviser (DEA).

DEAs oer help and advice to unemployed people who have a disability aboutthe range o specialist support available, eg. training, job search and reerral toa work programme.

Work programmesThe Access to Work programme (p 9) provides nancial support and advice toemployees and employers.

Work Choice is intended or people with complex disabilities whose needscannot be met through other schemes. It was previously reerred to as theSpecialist Disability Employment Programme. Everyone who has been onEmployment and Support Allowance will be guaranteed a place on WorkChoice i they are still unemployed ater two years.

As part o its welare reorms, the Government is replacing various workschemes or claimants o JobSeekers Allowance and Employment and SupportAllowance with a single Work Programme (WP).


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Participants must undertake activities specied by their adviser. When we askedthe Department or Work and Pensions or clarication about such activities(June 2011), a member o the Work Programme Communication Team told us:We are not being prescriptive in how the WP is delivered and thereore cannotspeciy what the WP will look like.

The situation may become clearer as WP becomes established. Please checkour website, www.actionorme.org.uk, government website www.direct.gov.ukor ask your Jobcentre Plus or up-to-date inormation.

Organisations which can help

As well as JobCentre Plus, there are some charities and specialist agencieswhich help people with disabilities back into work.

Shaw Trust is a national charity which supports disabled and disadvantagedpeople to prepare or work, nd jobs and live more independently.

Remploy provides employment services and employment to peopleexperiencing complex barriers to work

Your local Disability Inormation and Advice Line service (DIAL) may know oother organisations which oer help in your area.

Contact details may be ound on p 37.

Applying or jobs

Applying or a job is a challenge, whoever you are. A good application takestime and thought and most people are nervous in an interview situation.

Advice is available on websites like Directgov, Jobsite and (or graduates)Prospects (see p 37).

Or ask at your local Jobcentre Plus.

Employers and health-related questions

In most cases, employers are not allowed to ask job applicants about theirhealth or any disability, including questions about previous sickness absence,until the person has been oered a job. This includes conditional job oers oran oer o employment or when a job becomes available.


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There are exceptions i asking about your health is necessary to help youremployer:

decide whether you can carry out an essential unction o the post

identiy reasonable adjustments to the selection process

monitor diversity

take positive action to assist disabled people.

You can complain to the Equality and Human Rights Commission i you think anemployer is asking questions unlawully.

I you are disabled and you are asked health-related questions during therecruitment process and are not then oered the job, you can bring a claim odiscrimination against the employer. The burden o proo that no discriminationtook place will all on them.

Oers o employment

Any oer o employment can be conditional as long as the conditions arestated in the letter.

I there is a probationary period or a medical examination, this must apply to allprospective employees not only those who have an existing medical condition.


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Volunteering

Volunteers oten have more fexibility over the hours they work. I you receivecertain welare benets, doing a certain amount o unpaid work should notaect your claim (but check with the disability adviser at your Jobcentre).

A commitment o just one or two hours a week may provide you with anopportunity to:

do something useul, which brings a sense o achievement

manage your energy and symptoms within your pacing programme

build up your activity levels gradually over time

develop or reresh your skills and experience

build your cv

improve your job prospects

improve your condence

meet new people, in person, by phone or online.

It helps i you volunteer or something which you are interested in, which drawson your natural interests and abilities.

Further inormation and a searchable directory o local volunteer centres maybe ound online at Do-it.org.uk


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I you lose your jobI your employer has acted airly and made reasonable adjustments (see p 9)

and it is just not easible or you to continue to work or them, your employermay dismiss you on grounds o capability (ie. because you are no longercapable o doing the job you are contracted to do).

I this happens, or seems likely to happen, speak to an experienced adviser,such as ACAS, the Labour Relations Agency (N Ireland) or your local CitizensAdvice Bureau, as soon as possible.

They can advise you about whether your employer has acted reasonably andtell you about welare benets.

I you are advised that your employer has not acted airly and made reasonableadjustments, you may have grounds to take your employer to an employmenttribunal or disability discrimination.

I you give up your job because your employer has put you under unreasonablepressure, you may have grounds or constructive dismissal. It is essential to getexperienced advice rom one o the agencies listed above right away, becauseany claim you wish to make to an employment tribunal must be made withinthree months o the date o your dismissal.

Coping with job loss

Losing your job is oten stressul. It can aect not only your income but yoursel-condence, daily routine, sense o purpose, even your social lie.

Feeling angry, hurt, rejected and/or anxious is entirely natural. You may evennd yoursel grieving or what was.

I you eel like this, dont try to bottle things up. Tell amily and riends. Reachout or support.

I you are urious at your ormer employer, get it out o your system by writingdown everything you wish you could say to them (but dont post it! You neverknow when something written in anger may come back to haunt you).

Give yoursel time to come to terms with what has happened. Right now, thismight seem like the end o the world but you will get through it. Are there evensome advantages to being out o the particular situation you were in?

I you are eeling low, contact the Samaritans (www.samaritans.org) anytime on08457 90 90 90.


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Money matters(in or out o work)Having a long-term fuctuating illness can aect your income.

I you work, changes to your hours or role may aect your pay. I so, it isimportant to discuss this with your manager and make sure you understandexactly what you will be paid.

You should also nd out about:

statutory and/or contractual sick pay (below)

welare benets (p 28)

ill-health insurance and ill-health retirement (p 29).

Action or M.E. Members may call our Welare Rights Line or advice on welarebenets. Go to www.actionorme.org.uk or tel 0845 123 2380 or opening times.

I you are entitled to sick pay, it is vital that you are ully aware o what paymentsyou will receive i you are o sick and when any entitlement ends.

Statutory Sick Pay (SSP)

You may be entitled to Statutory Sick Pay (SSP), as long as you have beenearning at least the lower earnings limit. Your employer has a duty to keepsickness records or this purpose.

SSP is paid by the employer or up to 28 weeks in any period o sickness lastingor our or more days. It is primarily the employers responsibility and thescheme is operated by HM Revenue & Customs (HMRC).

You may be entitled to certain welare benets whilst on SSP.

I you are still sick at the start o the 23rd week o entitlement to SSP youremployer will need to complete and send orm SSP1 to you.

I your employer stops paying your SSP or any other reason they will also needto complete and send you this orm. This will allow you to claim state benetseg. Employment and Support Allowance (ESA).


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Contractual sick pay

Depending on the terms o the employment contract your employer operates,you may be entitled to Contractual Sick Pay in addition to SSP, or when SSP isnot payable, eg. ater 28 weeks o sickness.

You may also be entitled to make an application or welare benets orpayment under any permanent health insurance schemes that you have eitherprivately or through an employer.

Welare benefts

Employees may be entitled to benets whilst on Statutory Sick Pay. ThePermitted Work rules allow people on some sickness benets to earn a certain

amount beore their benet is aected.The welare system is undergoing extensive reorm but current (June 2011)means tested benets include Income Support, income-related Employmentand Support Allowance (ESA), Housing Benet and Council Tax Benet.

You may also be eligible or Disability Living Allowance (DLA), which theGovernment plans to replace with a Personal Independence Payment by 2013.DLA is not means tested and could be payable while you are in or out o work.It is designed to help with the extra costs that arise rom being disabled.

You may also continue to qualiy or Working Tax Credit whilst o work sick orup to a period o 28 weeks. Working-age benets will be replaced by UniversalCredit rom 2013.

I you are absent rom work through sickness you may also be eligible or ESA.

As you recover, a return to work may aect your benets. It is important that youknow and understand changes to your income, both rom your employer androm the state.

Further inormation about state benets is available on our website,www.actionorme.org.uk and at www.direct.gov.uk

Action or M.E. Members can also call our Welare Rights helpline. Go towww.actionorme.org.uk or tel 0845 123 2380 or opening times.

Debt problems

I you have debt problems call the National Debtlines condential service on

0808 808 4000, 9am-9pm Monday-Friday, 9.30am-1pm Saturday.www.nationaldebtline.co.uk


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Ill-health insurance

Some people with M.E. have insurance or a pension scheme which pays anincome i they are unable to work because o long-term illness.

Check your policies, personal and company-run, to nd out your options.

Permanent health or income protection insurance

Permanent health insurance (PHI) or income protection insurance pays a xedincome i you are unable to work long-term because o accident or ill health.

I you make a successul claim, you remain o sick but in employment, receivingan income rom the insurance or a set period or until you return to work orretire (depending on your policy).

You may not be able to make a claim or an illness you already have or havehad beore and some illnesses may be exempt rom some policies.

Citizens Advice and the Money Advice Service warn that you will not receiveyour ull income rom PHI, i your claim is successul, and you will have to waitsome time beore payments start.

Ill-health retirement

Alternatively or in addition to PHI, your employer may have a pension schemethat allows you to retire early due to ill health and claim your pension early.

I you want to retire, qualiy under the criteria in your policy and your claim issuccessul, the amount you receive will usually be less than the ull pension youwould have got at retirement age and you may not necessarily receive a lumpsum.

Potential problemsClaiming permanent health insurance or an ill-health retirement pension is notalways easy, as people have told us.

Citizens Advice has a section on how to resolve insurance problems on itswebsite.

The Pensions Advisory Service (TPAS) provides ree inormation, advice andguidance on pension schemes. Their helpline number is 0845 601 2923.

I you receive state benets an occupational pension or permanent healthinsurance payments can aect any benets you receive, such as contribution-based Employment and Support Allowance.


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Appendix 1: How someemployers help their staThis chapter includes some accounts by a variety o employees with M.E.ollowed on pp 32-34 by a more detailed case study eaturing an employee andmanager at Deloitte.

I you are an employer who has supported someone with M.E., or an employeewho has benetted rom such support, please tell us so that we can highlightthis good practice in our communications.

Either contact us via our website www.actionorme.org.uk or call ourCommunications Ocer on 0117 930 1322.

Sarahs story

I was very lucky that the occupational health sta in my place o work werevery helpul and understanding, as was my line manager.

I wasnt put under any pressure to return to work and in act my managerthought it might be better or me to take some more time o to ensure I was

absolutely ready to come back but work had been such a big part o my liethat I was nding it dicult and demoralising being o sick or so long, and Iwas very motivated to go back.

Occupational health and my manager liaised with me to create a phasedreturn plan, and I went back to work starting at three hours a day, our days aweek.

Sally

I am one o the lucky ones. My employer has been completely supportive andunderstanding. Without that I would not have made the recovery that I have soar.

I receive incapacity benet and an insurance payment rom my rms disabilitypolicy, which has enabled me to very gradually, over the last two years, work alittle or them unpaid, fexibly, in order to slowly enable me to return to work.

For the rst year I worked a ew hours rom home each week, and this has builtup over time.


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Suzanne

I have been able to work throughout my illness to various degrees thanks tomy employer letting me work out the schedule that is best or me.

They told me when I rst became ill that I needed to do whatever was

necessary to get well. Ive been given complete reedom to work out how manyhours I can work, which changes as my illness changes.

The nature o my job has also changed as my illness has progressed. At myworse, I ound dealing with people outside my team dicult and my internalrole was expanded because I ound this easier.

They allowed me to experiment with various ways o fexible working. For awhile, I worked at home or a ew hours each day beore going into the oce.However, Ive ound that it is best i I work or our days in the oce and oneday in the middle o the week at home.

Having somewhere to lie down at work as been very important and space hasalways been made available or me to do this.

Even during the worse stages o my illness, my employer has always made meeel that I was still a valuable member o the team. I have ound the supportrom management and my work mates to be extremely valuable therapy.

MichelleWhen I got ill I was lucky enough to be working or a multi-national oilcompany. Being a valued member o the team meant that they invested timeand money into helping me obtain a diagnosis and sent me to see two expertsin the eld.

The company doctor was extremely supportive and did a good job oexplaining my condition to my immediate supervisors. As a result, they tried tohelp me return to ull-time employment by reducing my working hours and

giving me low stress items to work on.

A receptionists story

I was lucky to be working or a GP practice when I become ill six years ago. Ihad to take six months o initially. I then started back on a come in when youare able and stay or as long as you can manage basis. This usually worked outat 1-2 hours in the beginning, with relapses, then building over the next sixmonths to 4-5 hours daily.

I soon realised that I would have to cut back permanently. I now work 20 hoursover our days. (This employee asked to remain anonymous)


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Case study: Joanna and Deloitte

Joanna writes: I joined Deloitte in April 2007 and worked in their Banking &Securities Audit department until the onset o my illness in June 2008. I had sixmonths o work and began my return to the same role on a phased basis in

January 2009.I built up my hours slowly and was almost back up to ve-day weeks when Isuccumbed to a nasty case o shingles in March 2009, the result being anothertwo months o work.

I have since returned to ull time hours and have, with the ull support andencouragement o the rm, moved to a dierent role which is oce-based withmore predictable hours.

The key or me has been gradual increase and tailoring as opposed to rigidschedules.

I remember being slightly aronted by the occupational health consultantssuggestion that I begin with 2 hours per day, 2 days per week when I had beenully expecting and planning my triumphant return. However by the end o myrst week I was utterly wiped out and extremely grateul that the consultant hadhad the oresight to squash my rather over-ambitious plan o action.

Deloitte has been antastic I dont really know where to begin.

Initially, they arranged or me to visit an external occupational healthconsultant who wrote a series o reports detailing my illness, recovery/prognosis and adjustments that would need to be made once I returned towork. These were taken very seriously by the HR team who kept in regularcontact with me during my absence and ensured all recommendations wereimplemented upon my return.

I still see consultants rom the practice on a regular basis and Deloitte nowhave an occupational health nurse on site at their London campus.

When I began my return to work, I was placed under the wing o Louise Clark,a Senior Manager within my department, who has consistently tried tounderstand and support me in any way she can, both proessionally andpersonally. She has been my champion and the driving orce which has kept meon track.

Louise is also my workability mentor a scheme set up by the WorkabilityNetwork, one o Deloittes diversity initiatives aiming to support employeeswith disability issues and their managers.

The network has also run an Understanding M.E. evening workshop (led byAction or M.E. trustee, Tony Golding) and established a rest room acility oremployees who need brie periods o rest.


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The eect o having a supportive employer should never be underestimated it is simply vital.

During recovery, the pressure people with M.E. place on themselves is badenough without added pressures o a must get back to work at any cost

mentality rom their boss.Being allowed the time and space to recover has been a git. In my darkestdays, I elt that my uture had been taken rom me and that planning wouldonly lead to disappointment. However, now Im back on my road to recovery, Iam able to think at least in the medium term.

I have been working ull time or the last eight months with minimal disruption,and have ound that the same level o support and understanding has beenextended to me in my new department as I was lucky enough to have been

given in my previous role.

More and more I get the eeling that not only do Deloitte have enlightenedpolicies and procedures in place, but that a supportive and understandingculture permeates throughout.

I would like to say thank you to Deloitte. The help and support I have beengiven have enabled me to retain my sel-worth and dignity which would havebeen crushing to lose at such a dicult juncture.

I wish that we lived in a world where all people with M.E. could be oeredsimilar opportunities, but I believe with enlightened employers such as Deloitteleading the way we have a hope o setting an example or other rms toollow.


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Deloittes perspective

Val Stevenson, Human Resources Director, says: Deloitte has a commitment toour diversity, respect and inclusion agenda we support our employees whohave long-term health conditions and help them achieve their work related

goals. We pride ourselves on being an open and fexible employer and we arekeen to provide an inclusive workplace where our employees eel comortablediscussing any issues they may have.

We have a dedicated occupational health advisor who assists in rehabilitatingindividuals who have been on long-term sick leave back to work. In the Londonoce, we have an onsite health suite that provides a private medical practiceand other health related services. Within the health suite we have a rest roomor employees who have medical conditions or disabilities that require them totake periods o rest during their working day.

We have fexible working policies and the technology in place or ouremployees to work rom home. As part o the rehabilitation process weencourage our people to use this to enable them to have a gradual return towork.

Jo is an active member o our Workability network, a network or people withdisabilities and medical conditions. She is a great role model to all ouremployees.

(Reproduced rom an article in our membership magazine, InterAction,updated April 2010).


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Appendix 2:Basic guide to pacingPeople with M.E. nd that their energy levels vary rom day to day and it can beeasy to do too much when having a better day. Unortunately this can lead to asetback the next day or the day ater, creating the vicious cycle o boom andbust. Pacing organises your day into sustainable activity and regular rest toavoid this damaging pattern.

Think o your available energy as being like a mobile phone battery. I youcompletely drain the battery you have to wait or it to recharge beore you can

use the phone again. I you use some o the battery and make regular top ups,then your phone will always be ready or use. Managing your energy throughplanned periods o activity and rest will mean you are more likely to be able todo the activities you want to do.

Pacing is highly individual and varies rom person to person. However, there arekey areas that orm the basis o successul pacing:

Understand what activity means or you

Activity doesnt just mean physical tasks; it also means tasks that involve mentalexertion or social interaction. This includes not only work or domestic tasks butpastimes that you may think o as relaxing, such as talking to riends, reading,watching television or listening to music. It also includes hidden mental activitylike emotion and worry. This is much harder to measure and predict, yet ormany people it is the biggest drain on energy.

Pacing needs to be applied to all these activities and your day should include abalanced mix o dierent sorts o activity.

Rest and relaxation

Short, regular rest periods are essential to recharge your batteries. For yourmind and body to benet, you need to be ully relaxed and properly restingyour brain. True rest is needed, and this can be dicult or people who usuallyrelax through active pastimes. Gentle music or relaxation tapes and CDs can behelpul.


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Finding a baseline

Beore you can start to plan a pacing programme you need to know how muchactivity you can comortably manage on a daily basis, without causing anincrease in symptoms. This is called your baseline. Baselines sometimes need

to start at very low levels and should be manageable, even i youre not havingsuch a good day. To help you become aware o highs and lows o activity(boom and bust) keep a simple diary o your current activities, and how theymake you eel.

Remember that working to your baseline does not mean that you have torestrict your lie to that level orever, but you do need a stable oundation romwhich you can begin to build.

Planning and goal settingPlanning your time is essential. You need to prioritise activities and tasks toinclude those that you have to do, but also those that you enjoy. Once youhave established a steady routine you can very gradually, in small steps, buildup your activity. This process should take weeks rather than days and you needto approach a goal step by step. Its important to develop awareness o howyour body is coping, to sense i you are pushing yoursel too hard, or i youhave become wary o moving orward.

To nd out more about pacing and how to put it into practice, we stronglyadvise you to download a copy o our booklet Pacing: a guide for people withM.E. ree rom www.actionorme.org.uk or order a copy or a small charge on0845 123 2380.


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Useul contacts

Disability Inormation and Advice Line services (DIALs)

01302 310 123

Text Phone 01302 310 123 (use voice announcer)

www.dialuk.ino

Shaw Trust

01225 716300

Minicom 08457 697288

www.shaw-trust.org.uk

Remploy (agency)

0845 601 5878

www.remploy.co.uk

Prospects (graduate careers advice)

www.prospects.ac.uk

ACAS

Helpline 08457 47 47 47

www.acas.org.uk

Labour Relations Agency (the Agency) Northern Ireland

028 9032 1442

www.lra.org.uk

Directgov

www.direct.gov.uk

Jobsite

www.jobsite.co.uk

Citizens Advice

www.citizensadvice.org.uk


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National Debtline

0808 808 4000

www.nationaldebtline.co.uk

Money Advice Service0300 500 5000

Typetalk 18001 0300 500 5000

www.moneyadviceservice.org.uk

The Pensions Advisory Service (TPAS)

0845 601 2923

www.pensionsadvisoryservice.org.uk

Health and Saety Executive (HSE)

0845 345 0055

www.hse.gov.uk


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www.actionorme.org.uk


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PO Box 2778BristolBS1 9DJ

T 0845 123 2380E [email protected]

Registered addressThird Floor Canningord House38 Victoria Street Bristol BS1 6BY

Registered charity in England and Wales no. 1036419

Registered in Scotland no. SC040452

Company limited by guarantee, registered in Englandno. 2906840

Action or M.E. 2011

ME and Work A5 Booklet v8

Documents

Transcript of ME and Work A5 Booklet v8