A positive work-life for the terminally ill Last updated: March 2019 Contact: [email protected] 1
A POSITIVE WORK-LIFE FOR THE TERMINALLY ILL
This guidance focuses on how branch and trade union reps as well as employers
need to consider the specific needs of workers diagnosed with terminal illness in
their negotiations over sickness absence policies, disability leave, time off for
medical appointments
and ill health retirements.
It briefly explains the
protection available to
workers and highlights
the TUC initiative – the
Dying to Work charter –
that all employers should
be encouraged to sign.
It is sadly inevitable that
some of our members
will be diagnosed with a
serious illness during
their working life. For
some the illness may be
terminal, particularly as
more and more of us
have to work to a much
older age.
All staff suffering with a
long-term illness deserve
sensitive treatment in the
workplace, in line with
the requirements of
employment, health and
safety and equality law.
A positive work-life for the terminally ill Last updated: March 2019 Contact: [email protected] 2
Yet employers rarely consider the specific needs of employees with terminal
illnesses.
For many people, a diagnosis of terminal illness does not mean immediately having
to give up on normal activities.
Work is an important part of all our lives and an individual‟s opportunity to continue
contributing within the workplace and socialising with work colleagues, may be a
positive part of coming to terms with the diagnosis, and enjoying their remaining life
to its full. It also crucially helps provide financial security for themselves and their
loved ones.
UNISON recognises that all our members and their dependants may need advice
and support when life gets tough. We aim to help provide it through our welfare
charity, There for You.
Employers too should be encouraged to treat the terminally ill within their workforce
with compassion.
A positive work-life for the terminally ill Last updated: March 2019 Contact: [email protected] 3
Protection under the Equality Act
Three potentially progressive and life-threatening conditions - Cancer, HIV and
Multiple Sclerosis - are regarded as disabilities from the point of diagnosis. However
it is likely that other long-term and terminal illnesses will also qualify as disabilities
under the Equality Act. Under the Act a disabled employee has a physical or mental
impairment that has an adverse effect on their daily activities, and the effect is
substantial and long term.
Disabled employees have the right not to be treated less favourably in the workplace
based on their condition. Importantly employers also have a duty to consider
reasonable adjustments to help disabled employees stay at work.
A health and wellbeing approach
Employers have a duty of care to all their staff. As part of this there should ideally
be a proactive health and wellbeing approach to work and the working environment.
Staff members should be able to be open about their health issues and encouraged
to take proper care of themselves.
Line managers in particular should be appropriately trained to sensitively and
empathetically handle communications about health and wellbeing. Then employees
may be more willing to be open about a diagnosis of a serious illness. This can lead
to discussions on workload and work adjustments well in advance of any problems.
Good communications are important in order to get the appropriate support and
protection at work for our members.
However it should always be up to the individual whether they want to share their
diagnosis with other staff at their workplace, and confidentiality should be respected
by managers if requested. If it is to be shared, the impact on other staff will need to
be considered carefully. These workplace conversations should not only be
sensitively handled but presented in a non-dramatic, positive and straightforward
manner as agreed as appropriate with the affected employee.
It may be helpful to have an alternative, appropriately trained person within the
workplace such as an identified HR officer that an employee can turn to when initially
diagnosed should they find talking to their line manager difficult.
Trade union and branch reps may also be the first point of contact for members with
a concern about the impact of such a diagnosis on work and their future and their
family‟s future. It is key that they ensure members are fully aware of their
employment rights, including sick pay, time off and any access to occupational
health services.
A positive work-life for the terminally ill Last updated: March 2019 Contact: [email protected] 4
Sickness absence policies and fit notes
When an employee is off sick for seven calendar days or more, their GP will provide
them with a „fit note‟ if they consider their fitness for work is impaired. As
Government guidance for employers explains, there is a recognition that employers
may have to make changes in order to help the employee back to work. It points out
that “often, a few simple and / or low-cost changes can help someone with a health
condition come back to work earlier. Access to Work can help employees with a
disability or health condition. This includes paying towards equipment or support.”
The Government also recommends that discussions take place with the employee,
involving trade union reps, HR and occupational health as appropriate, on what
changes are required in the workplace or to the work role. These changes may be:
“A phased return to work: a gradual increase in work duties or hours
Altered hours: changing their work times or total hours
Amended duties: changing their work duties
Workplace adaptations: changing aspects of the workplace.”
As well as the necessary changes that should be made, negotiations with employers
are also likely to focus on the sickness absence policy itself, in particular the need for
flexibility in its operation, as well as showing a clear differentiation between sickness
and disability related absence. It is also important as part of any sensitive treatment
of employees with terminal illness that managers are responsive where they can to
the particular needs of the employee, and not just stick to arbitrary trigger points or a
time-limited availability of contractual sick pay.
Example clause for your sickness absence policy:
[Name of employer] is committed to supporting terminally ill employees with dignity,
respect and compassion. Where a worker has been diagnosed with a terminal
illness, managers will need to be particularly sensitive.
An employee with a terminal diagnosis will not be dismissed because of their
condition. Each case must be assessed and progressed on an individual basis
ensuring that the employee‟s personal wishes (wherever possible), and relevant
financial implications are considered including any death in service benefits, ill health
retirement or termination of employment with a lump sum payment. . HR Advice
should be sought as a number of options are available for the employee and must be
fully researched before a decision is made.
It is recognised that some employees may wish to remain in work as long as
possible and if appropriate, reasonable adjustments will be considered to support the
employee in this decision.
A positive work-life for the terminally ill Last updated: March 2019 Contact: [email protected] 5
The roles of the safety rep and the equality rep
Trade union safety reps have an important role to play in supporting individuals
through sickness absence management processes and helping to improve and
develop agreements that focus on employee rehabilitation and healthy workplaces.
Safety reps have the legal right to be consulted on health and safety issues in the
workplace, and this includes sickness absence. The Health and Safety Executive
(HSE) suggests that union safety reps work with the employer by:
Helping to identify measures to improve worker health and prevent it being
made worse by work.
Suggesting that their employer develops workplace plans and policies on
sickness absence management.
Helping to keep workers who are on sick leave in touch with work.
Helping their employer to plan adjustments that will enable workers to return
to work.
Supporting workers to help them to return to work.
Helping to promote understanding of impairments, health conditions and
disability in the workplace.
All these workplace issues are of course of great importance to all workers including
those diagnosed with a terminal illness.
Workplace equality reps and branch equality co-ordinators can also play a key role
as they can provide support on equality and discrimination issues that may affect
disabled workers who may include those diagnosed with a terminal illness. This
support should involve talking to members to ensure that they are being treated
fairly, as well as to managers to ensure they are implementing the organisation‟s
equality policies, and that these policies comply with equality law (see page 3
above).
Carers‟ policies
At the same time, branch and workplace reps may also want to negotiate a carers‟
policy for their workplace including the provision of paid carers‟ leave. This would
then lead to recognising the important role individuals play in caring for loved ones
including those with terminal illnesses.
Further details on bargaining on the rights for carers, focusing on workers
with a responsibility for caring for adults, along with a model carer‟s policy,
can be found in the bargaining support guide, „Bargaining on Carers‟ Policies‟
www.unison.org.uk/content/uploads/2018/06/Carers-policies-guide.pdf
Putting the case to employers
A positive work-life for the terminally ill Last updated: March 2019 Contact: [email protected] 6
Not only are there strong legal and moral cases for employers to treat employees
with a terminal illness sensitively, there is a business case as well:
Costs of dealing with long-term sickness absence and recruitment can be
minimised by encouraging and supporting staff to stay in work with a terminal
diagnosis and to plan for when they are ready to leave work
Potential legal costs and discrimination awards are avoided
Managers are able to support their teams more effectively, and help create trust
and loyalty in the employees
The employer will benefit from being seen as a caring employer, improving its
reputation not only for potential recruitment but also with clients and the general
public.
When it‟s time to stop working
Branch and workplace reps need to check that the employer is also suitably
prepared for when the employee needs to stop working.
Ideally managers should be able to signpost affected employees to advisers on
benefits and financial options available, as well as support and advice from an
employee assistance programme and occupational health service.
It may also be appropriate to discuss early ill-health retirement and any pension
provision with the employee so that they can plan appropriately. There may be other
benefits available that should be highlighted such as critical illness cover and death-
in-service benefit.
A good employer will also signpost the employee to agencies that will provide advice
on personal affairs such as writing a will and making a lasting power of attorney.
Ultimately when the employee does die, conveying the sad news to work colleagues
and friends will need to be handled delicately, recognising the need for staff to
grieve.
Additionally, there may be other practical issues to consider such as sending
condolences to family members and commemorating the person who has passed
away.
These issues cannot be ignored and the trade union has a responsibility to ensure
that the employer seriously considers them.
A positive work-life for the terminally ill Last updated: March 2019 Contact: [email protected] 7
Dying to Work charter
One way to tackle this sensitive issue would be to introduce the employer to the
Dying to Work (www.dyingtowork.co.uk) charter.
The campaign says that: “union negotiators should seek agreement that their
employer will:
Review sick pay and sickness absence procedures and include a specific
statement that they will not dismiss any person with a terminal diagnosis because
of their condition.
Ensure that that they have an Employee Assistance Programme that has the
capacity and competency to provide support to any person with a terminal illness,
including access to counselling and financial advice.
Provide training to line managers and all HR staff on dealing with terminal illness,
including how to discuss future plans with any worker who has a diagnosis of a
terminal illness, and on what adaptations to work arrangements that may be
necessary.
Adopt the Dying to Work Charter and notify all employees that they have made
the commitments contained in it.”
Signing up to the charter commits employers to provide security of work, peace of
mind and the right to choose the best course of action in employment for workers
with terminal illnesses.
A positive work-life for the terminally ill Last updated: March 2019 Contact: [email protected] 8
The campaign presses for “additional employment protection for terminally ill
workers who need greater protection from heartless employers who utilise a
loophole in the law to dismiss the dying due to their illness. Every person
battling terminal conditions deserves the choice of how to spend their final
months.”
Their website highlights Jacci Woodcock‟s story: “Union member Jacci‟s job had only
been saved when her union threatened to publicly expose the firm. She said „I was
actually astounded about what HR asked. It was all about capability, capability,
capability - no concern for me as their employee and no apparent care that I was
dying‟.”
Signing up to the voluntary charter could be recognised as part of an organisation‟s
equality and diversity policy, whereby it treats everyone with dignity and respect.
Full details of the employers who have already signed up to the charter can be
found at www.dyingtowork.co.uk/whos-signed/
It includes the Black Country Partnership NHS Foundation Trust, the Mid and West
Wales Fire and Rescue Service, Stockton-on-Tees Borough Council, Leicestershire
Police Service, South Lanarkshire Council, University of Kent, Severn Trent Water
and many more workplaces where UNISON is recognised and branches have been
active in encouraging employers to sign the Dying to Work charter.
“We support the TUC‟s Dying to Work campaign so that all employees battling
terminal illness have adequate employment protection and have their death-in-
service benefits protected for the loved ones they leave behind.”
UNISON Hartlepool Local Government Branch Secretary, Edwin Jeffries
“Learning you have a terminal illness is devastating enough but it‟s even
worse for a worker and their loved ones if they get a P45 along with their
doctor‟s note. We‟re glad Colchester Council has taken this step to treat their
staff with dignity and respect as they go through the trauma of terminal
illness.”
UNISON Colchester Borough Council Branch Secretary, Georgia Norton
A positive work-life for the terminally ill Last updated: March 2019 Contact: [email protected] 9
Further information
UNISON
„Making sickness absence policies work better for us‟
https://www.unison.org.uk/content/uploads/2014/11/On-line-Catalogue226602.pdf
Available from the online catalogue, stock number 2594
„Disability and health and safety‟
https://www.unison.org.uk/content/uploads/2016/12/24124-1.pdf
Available from the online catalogue, stock number 3068
„Proving disability and reasonable adjustments‟
www.unison.org.uk/content/uploads/2019/02/25362.pdf
„Disability leave bargaining guide and model policy‟
www.unison.org.uk/content/uploads/2018/10/Disability-Leave-Bargaining-Guide-and-
Model-Policy.docx
There for You
Members experiencing financial and emotional difficulties can contact UNISON‟s
welfare charity, There for You, which provides a confidential advice and support
service for members and their dependants.
www.unison.org.uk/get-help/services-support/there-for-you
The Dying to Work campaign
www.dyingtowork.co.uk
including Nottinghamshire County Council‟s „Guidance for Line Managers on
Supporting Employees Diagnosed with a Terminal Illness‟
www.dyingtowork.co.uk/wp-content/uploads/2018/10/Guidance-for-Line-Managers-
on-Supporting-Employees-Diagnosed-with-a-Terminal-Illness.pdf
Acas
Conditions automatically treated as a disability - The Equality Act and Cancer, MS
and HIV www.acas.org.uk/index.aspx?articleid=5847
Managing staff absence – long-term illness
www.acas.org.uk/index.aspx?articleid=4203
Managing bereavement in the workplace
www.acas.org.uk/index.aspx?articleid=4977
Government guidance for GPs, employers, hospital doctors and occupational
health practitioners on using fit notes (statements of fitness for work).
www.gov.uk/government/collections/fit-note
Macmillan cancer support
Work and cancer – information for employers and employees
www.macmillan.org.uk/about-us/what-we-do/how-we-work/work-and-cancer
Supporting employees at the end of life
www.macmillan.org.uk/information-and-support/organising/work-and-cancer/if-youre-
an-employer/bereavement.html#160603
„A guide for employers: supporting employees affected by cancer‟
www.macmillan.org.uk/documents/getinvolved/campaigns/workingthroughcancer/wo
rkingthroughcancer2010/workingthroughcancer2010.pdf
Contact your regional education teams and / or LAOS to find out what training and
resources are available to assist you with negotiating with your employer or
promoting the issues in this guide with your members https://learning.unison.org.uk/
Further model agreements and guides are available from the bargaining support unit
www.unison.org.uk/ bargaining-guides.
Bargaining checklist
Does all training or induction for managers, staff and trade union representatives
on sickness absence include a consideration of sensitively and compassionately
treating employees diagnosed with a terminal illness?
Does the workplace sickness absence policy or agreement include reference to
sensitively dealing with employees with a terminal illness?
Is there a specific statement included saying that the employer will not dismiss
any person with a terminal diagnosis because of their condition?
Is there also a discretionary option for the period of time that contractual sick pay
is paid to be extended, particularly for those with a terminal illness?
Does the workplace sickness absence policy or agreement include guidance for
both staff and managers? Or signpost to guidance elsewhere?
Does this guidance include reference to:
Training for line managers
The role of occupational health, HR and the trade union representatives
Making reasonable adjustments / changes to workplace and duties
Flexible working
Paid time off during treatment
Flexibility and discretion over attendance management procedures
Disability and sickness leave and pay available
Ill health retirement
Death in service benefits if available
Support available for employees including financial assistance and advice?
Is all long-term illness and time off for treatment handled flexibly and sensitively
so that workers are able to continue to work, and not forced to go through
distressing capability procedures?
Is there a disability leave policy?
Are reasonable adjustments fully considered?
Is there a workplace culture where workers are able to be open about ill-health
issues and supported when taking time off for treatment?
Has your workplace signed up to the Dying to Work charter?
Does your workplace also have a carer‟s policy in place, ideally providing paid
carer‟s leave?
