Peer Support Factsheet

Progressive Illnesses

This guidance from MSS’ Peer Support Service looks at the implications of being
diagnosed with a progressive illness.

Early onset Parkinson’s – a group member’s experience.

Peer Support Group member Garth kindly agreed to answer questions on living and working with
Parkinson’s and how Member Support Services have assisted him in planning.

How long ago did you receive your diagnosis of Parkinson’s and how soon and prominent
were you concerns relating to your employment?

4 years ago – about 30 seconds after diagnosis!

Can you recall your earliest concerns relating to employment and income?

I have a mortgage to pay; can I work for 1 more year? This is going to be messy; I haven’t
changed/achieved anything in my nursing career yet!

What initial routes did you take to discover more about the effect your illness would have
on your ability to work?

Discussion with neurological nurses, Parkinson’s forum, I have nursed patients with PD so know
the consequences of the disease.

Is sustaining employment an important element of maintaining independence for you?

Vital I keep working: for self esteem, socialisation, If I stop work is it the beginning of the end?;I
need to make my mark in life!!

You have mentioned that personally it is important to you to be prepared as early on as

possible and to have knowledge of the options available to you. can you tell me what your
plan before contacting MSS was?

Discuss with consultant and neurological nurses, got advice from union.

How was your careers appointment with Cathy approached and what outcomes assisted
you with planning for the future?

Enabled me to focus on areas that I had thought of and some I hadn’t. Given a few
options/contacts to start thinking about to help me have a career after I can no longer do clinical
work.

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How was your welfare appointment with Ian approached and what outcomes assisted you
with planning for the future?

Gave me a guide to my future, Ian has dealt with PD before. Ian told me what to be aware of as
part of my contract and my legal rights.

Has your contact with MSS left you feeling better equipped to deal with the future?

Yes – the more I know the more empowered I am. It’s great to know there is support available.

Has your overall plan changed or been enhanced?

Enhanced. Added a bit of clarity and knowledge about disability rights. I’m fully aware though that
due to increasing disability and changes in the NHS I need to be flexible.

Was there any advice that stood out as something you wouldn’t have considered or weren’t
aware of?

Advise on the possibility that early retirement may happen one day, also disability rights in the
workplace.

What are your next steps? Do you think you will contact MSS again?

Next steps to continue in nursing as long as possible. Keep talking to my doctor, my specialist
nurses and try and keep talking to my employer (who don’t engage in my health at present). I will
use MSS again!

Will you enlist the support of your regional office and are you confident about discussion
with your employer as and when these arise?

Dread talking to my employer!! I know their agenda is to protect their work – but I am protecting
me – we need to work together. Occupation health have told me the next step will be a referral
from my manager. Although a few changes have been made at my work, it is a shame that
employers don’t take a more active role in advice and support. – They have invested money and
time in me and with a little support they will get a great deal from me. A secondment outside the
NHS has already been suggested outside of my speciality – Although this may have been useful, it
makes one feel a little pushed out. I have declined – they need me where I am!

Any further thoughts?

The future scares me: my health and how I can financially support myself. The more you know
about your disease and your rights at work the better equipped you are. Employers need to be
more aware and communicate more – it makes good business sense. I want to work. A colleague
rang in sick and the manager taking the call said, ”So and so is sick, she’s let us down” This type
of attitude does not help how I feel, knowing I will be off work one day. I try not to let my job down,
but know my body will let me down!

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Ian King from MSS Welfare Rights & Guidance on managing the impact of a
progressive illness at work
A progressive illness is a disease or health condition that gets worse over time, resulting in a
general decline in health or function. Unlike a relapsing and remitting disorder, there are not many
periods of relief from a progressive disorder. Depending on the diagnosis, a progressive disorder
may move quickly or slowly.

Examples include Alzheimer’s disease, Parkinson’s disease, Multiple Sclerosis and Rheumatoid
Arthritis.

Disability is defined by the Equality Act 2010 as a physical or mental impairment that has a
substantial and long-term adverse effect on a person’s ability to carry out normal day to day
activities. ‘Substantial’ means more than minor or trivial. ‘Impairment’ covers, for example, long-
term medical conditions such as asthma and diabetes and fluctuating or progressive conditions
such as Parkinson’s disease or motor neurone disease. A mental impairment includes mental
health conditions such as bipolar or depression.

Progressive conditions are subject to the special provisions of the Equality Act 2010. These
provisions provide that a person with a progressive condition is to be regarded as having an
impairment which has a substantial adverse effect on his or her ability to carry out normal day-to-
day activities before it does so. A person who has a progressive condition, will be treated as
having an impairment which has a substantial adverse effect from the moment any impairment
resulting from that condition first has some adverse effect on his or her ability to carry out normal
day-to-day activities, provided that in the future the adverse effect is likely to become substantial.
Medical prognosis of the likely impact of the condition will be the normal route to establishing
protection under this provision. The effect need not be continuous and need not be substantial.

The Act provides for a person with one of the progressive conditions of cancer, HIV and multiple
sclerosis to be a disabled person from the point at which they have that condition, so effectively
from diagnosis.

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A person with a progressive condition which has no effect on day-to-day activities because it is
successfully treated (for example by surgery) may still be covered by the Act where the effects of
that treatment give rise to a further impairment which does have an effect on normal day-to-day
activities. For example, treatment for the condition may result in an impairment which has some
effect on normal day-to-day activities and the effects of that impairment are likely to become
substantial in the future.

The Equality Act legislates that employers must make ‘reasonable adjustments’ in the workplace
to prevent employees from being treated less favourably than others, for a reason related to their
disability or progressive condition.

Sickness Absence

Employers should have in place a sickness absence policy which managers should be
encouraged to use. The purpose of the sickness absence policy is to provide a way to manage
the absence of employees who are or have been absent due to illness, which may include a
progressive illness.

If you are off sick as a result of your progressive illness then you will in most cases be subject to a
structured absence management review process. There may be a number of implications for you
linked to your sickness absence, particularly if it is likely to be long-term or you are not expected to
be able to return to fulfil the duties of your substantive post due to your illness. You may need to
take advice about the impact of your absence upon your financial situation, entitlement to welfare
benefits, advice about your employment options and retirement on the grounds of ill health.

You can find more information about what you should expect of your employer in managing
sickness absence and information about sick pay here:

http://www.rcn.org.uk/support/rcn_direct_online_advice/a-z2/sickness

If a manager has a particular concern about Health and Safety matters in relation to an employee
who has a progressive illness, they may consult the Health and Safety officer who can provide
advice and assessments of the work environment and any risk.

A manager may refer an individual to an Occupational Health service if they would like advice on
how to manage an employee with a progressive illness. A human resources department may also
refer individuals as appropriate, and if they are being reviewed under the terms of the sickness

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absence policy, to seek professional advice on when an employee may be able to return to work
and any reasonable adjustments that should be made.

Individuals are often able to self-refer to occupational health for advice and guidance about a
condition they have.

Managers may encourage an employee with a progressive illness to disclose their illness within
the boundaries of confidentiality i.e. personal information will only be shared with those who need
to know it. Managers should adopt a disability management approach and consider proactive
support such as reasonable adjustments and early intervention.

By supporting employees with progressive illness appropriately, employers can minimise the
potential costs of long-term absence, staff turnover and loss of skills. They can encourage
productivity, job retention, workability and quality of life. For example, the cost of resources of any
reasonable adjustments may be far less in reality than that of recruiting and training a new
employee.

If you are affected by a progressive illness you should consider the impact that this is having or is
likely to have upon your life including your ability to fulfil the duties of your job role. When
considering disclosure, you should consider the support that may be available to you from your
employer. Your illness and its effects may not be obvious to your manager or colleagues;
therefore if your performance is affected in the workplace, they may not be aware of the reasons
for this.

As an employee with a progressive illness you have a responsibility under the Management of
Health and Safety at Work Regulations 1999 to inform your employer of any shortcoming in health
and safety arrangements.

You will also be required to take responsibility for self-management of a progressive illness whilst
at work. You should consider whether you require any additional support both in and out of work.
You may wish to talk to supportive colleagues about how your condition affects you or how you
are feeling about it. You may also wish to seek support from friends and family outside of work or
consider some counselling support to help you cope with your illness and its effect on your work
and personal life.

http://www.rcn.org.uk/support/services/counselling

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Redeployment

If your condition begins to affect you to such an extent that you are no longer able to discharge the
duties of your job then you may need to consider alternative roles that are more suitable given any
functional restrictions or impairment that you have arising from your condition. You can find
information about redeployment and what this means here:

Ill Health Retirement

Should you need to exit employment altogether as a result of your progressive illness and you are
a member of your employer’s occupational pension scheme, you may be able to retire early on the
grounds of ill health. Different schemes have different rules but generally a person has to
demonstrate that they have a health condition that is deemed to be permanent and will affect them
until their normal pension age of the scheme they are in. Members of the NHS Pension Scheme
can find more information in the Ill health retirement guide available ere:

http://www.rcn.org.uk/support/rcn_direct_online_advice/factsheets_and_guides

If you are not a member of the NHS Pension Scheme but a member of a different occupational
pension scheme, you should seek guidance from the scheme provider regarding the conditions of
entitlement for ill health retirement from their scheme.

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How MSS Careers Service can help – by adviser Cathy Taylor

Coming to terms with the affect of illness a career can take time - especially if it means no longer
being a 'hands on' nurse. Feelings experienced are similar to those of bereavement, including the
stages of:

Denial- 'this can't be happening';

Anger- 'why me'?;
Bargaining - 'let me stay in this job';
Depression - feeling low and unable to act, but acknowledging the new reality;
Acceptance - 'my career will change'.

Often people affected by loss or trauma report moving in and out of the above stages at different
times. Acknowledging these feelings is an important first step to making career decisions. MSS,
through its counselling and career services can support members through this process. We aim to
help nurses to find a career pathway which is a better fit for their physical abilities. This may mean
a change of hours, role or employer. Alternatives may include, among others, a move into
research, policy, quality, education or advice and guidance roles

Helping members to find a pathway that is true to their values – what is important to them - is one
focus of the service. Values can change over time and as a result of illness. We offer exercises to
help members to re appraise their priorities and find a career pathway that is a better fit for their
circumstances. We also help members to reflect on their strengths, attributes and skills so that
they can confidently present these to employers - at a discussion about reasonable adjustments,
re deployment or when applying for jobs. We also help nurses to look at their interests - what they
enjoy doing - and how to incorporate these into all aspects of their life, including both paid and
unpaid activities.

To make an appointment contact us using the details at the end of this factsheet.

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If you are diagnosed with a progressive illness, the RCN can help.
Contact RCN Direct so that they can make sure your regional office are aware of your condition
and ensure that you involve your regional office when you have meetings with your employers as
they can provide advice and support. Don’t go to meetings alone.

RCN Direct 0345 772 6100

Call Member Support Services to access careers and welfare advice like Garth. You may also
wish to arrange counselling sessions. If you have restrictions on your passport, call our
Immigration Advice Service to find out how you and your dependents could be affected by your
change in circumstance.

By joining Peer Support you can connect with other members in similar circumstances to you to
share experiences and support. You will also receive our quarterly newsletter and invites to
regional events.

All Member Support Services are confidential.

Further Resources

Parkinson’s UK http://www.parkinsons.org.uk/default.aspx

Alzheimer’s Society http://www.alzheimers.org.uk/

Multiple System Atrophy Trust http://www.msatrust.org.uk/

Multiple Sclerosis Society http://www.mssociety.org.uk/what-is-ms

Dementia UK http://www.dementiauk.org

The Peer Support Service is part of the RCN’s Member Support Services.
For more information, please contact RCN Direct:

0345 772 6100

web.enquiries@rcn.org.uk

If you would like to join the group, the consent form is available here:

https://www.rcn.org.uk/support/rcn_direct_online_advice/a-z2/peer-support

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