(Dec 2009)

EMPLOYMENT

About this booklet

The aim of this booklet is to provide information about the situations you may encounter as a pituitary patient seeking or in employment.  You may not find that all of the information applies to you in particular, but we hope it helps you along your pituitary journey and offers you a basis for discussion with your employer or prospective employer.

Click here to download a copy of this booklet:  Employment Booklet.pdf (1.5MB)

Introduction

After diagnosis and treatment, many pituitary patients go on to lead a ‘normal’ or ‘near-normal’ lives once achieving good hormone replacement therapy.  Indeed, there are those patients who do not even need replacement medication.  However, there are others who have different experiences.

Those people with pituitary conditions who may struggle with ongoing symptoms want to continue with their employment or find work. Being able to work can be a positive experience in itself for your own self-esteem and social interaction.  Of course, in most cases, employment is a necessity for financial reasons.

However, continuing with your employment or seeking a job after diagnosis and treatment may be fraught due to you as an employee needing some flexibility, possible fatigue, pain, unpredictable symptoms and regular medical appointments and tests.

In this leaflet we consider aspects of the workplace for you as a patient and to look at ways you and your present or new employer can engage to enable understanding.

Definition of Disability (source: www.direct.gov.uk )

The Disability Discrimination Act (DDA) defines a disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities.

For the purposes of the Act:

• substantial means neither minor nor trivial
• ong-term means that the effect of the impairment has lasted or is likely to last for at least 12 months (there are special rules covering recurring or fluctuating conditions)
• normal day-to-day activities include everyday things like eating, washing, walking and going shopping
• a normal day-to-day activity must affect one of the ‘capacities’ listed in the Act which include mobility, manual dexterity, speech, hearing, seeing and memory

A Note on Disability Discrimination in the Workplace

Regardless of the fact that many pituitary patients carry on with life as ‘normal’ post-diagnosis and treatment, there are others who do not.  In more extreme cases, pituitary conditions can be considered a disability. 

If you feel you are experiencing discrimination due to your condition and if you have thoroughly followed the procedures as identified in your staff handbook, you should contact your local Citizen’s Advice Bureau (CAB), ACAS or your union (contact details are at the end of this leaflet).  You can learn more about disability at work at www.direct.gov.uk or by contacting the Department of Employment.

Employment

Finding Work

Because pituitary conditions are sometimes classed as ‘long-term/life-long illnesses’, they must be declared in the medical section of a job application or during an interview.  Failure to do so, either by giving an untrue answer or by avoiding the issue altogether, may render the applicant liable to termination of contract at best, or, at worst, to legal action.

Showing a prospective employer The Pituitary Foundation’s The Pituitary gland, Its Disorders and Hormones Explained leaflet, or other relevant leaflets from The Foundation, may help as some misconceptions exist as to the nature of the disease.  It may also help prospective employers gain a better understanding of your condition.  If prospective employers request medical information from your GP or hospital specialist, remember that you have a right to view your medical records in the surgery.

If a medical is required for employment purposes, this can be done in two ways.

1. If the examination is performed by your GP, you have the right to view the report within 21 days (there is a box to tick on the form if you wish to see the report before it is sent to prospective employers).
2. If the examination is carried out by the company doctor or an independent physician, details of the finding can be requested via your GP.

At Work

If you are employed, or find employment, you should be able to expect the same courtesy, respect and treatment as any ‘fit’ employee.  In fact, you may find that certain adjustments and allowances will be made for you.  There is no reason, however, why you should have to endure harassment or being made to feel uncomfortable by management and fellow colleagues.

You are entitled, by law, to the same sick leave, pension rights and job security as anyone else.  These are too complicated to be dealt with in detail here, but basically, what is good for the general public is good for you.

Employers also have rights. They have the right to expect that an employee will fulfil his or her part of the Contract of Employment.  If an employer pays for work to be done, that employer has the right to terminate the employment of an employee who is patently unable to do that work.

It is important to note that no one with pituitary disorders, or any other medical condition, should have to experience unpleasantness because of their condition.  If management and fellow workers are aware of the illness, it will do much to avoid suspicion and trouble in the workplace.  Education and openness can possibly prevent unpleasant treatment.  People with pituitary disorders, which are not easily understood by fellow workers, may find that work life may be difficult.  In such a case, you should make an appointment to discuss the matter in confidence with the human resources department, or your line manager, and talk about the problem openly.  If you are comfortable, it may be suggested to them that they attempt to educate your colleagues about your condition on your behalf, or you may engage with them in this process. 

The Newly Diagnosed Patient

Should I tell my employer?

It may be that your pituitary condition will have little effect on your day-to-day life.  However, if newly diagnosed, you may need a variety of tests, consultations and treatments which could mean time away from work. 

It is best to be up front and honest with your employer.  Education is important.  Turning their attention to Foundation leaflets and our website (www.pituitary.org.uk) will assist with this and also provide them with credible information about your condition.  Further, it will be an indication that, even if your condition is considered ‘rare’ and not well-known, you are a member of a community that has support and a voice.

You should make an appointment with your line manager or the human resources department and prepare by taking leaflets or print outs from The Foundation website.  Explain your condition as best you can and detail what might be expected in future for you to be away from work.  It should help a great deal if they know what to expect and you can work together on plans to keep on top of, or, if needed, adjust your workload.

This meeting and your condition should be kept in the strictest of confidence by your employers.  Only you have the right to disclose your medical information to colleagues.

What if I don’t tell my employer?

If you don’t disclose your condition to your employer, they are not obligated to provide suitable adjustment should you need it.  If you find you need adjustment in future, and you have not disclosed your condition, this could go badly for you.  It is always best to be honest and forthright and doing so will assist you if you should have concerns about your employment in the future.

How much time off am I likely to need?

Every patient is different and it depends on what tests and treatments your medical team orders.  You should ask your Endocrinologist or endocrine nurse to go through the process with you and advise on what you are likely to expect.  Ask for the worst case scenario so that you, and your employers, can anticipate any pitfalls.  We find that often patients are not aware of possible recovery times of some of the more arduous tests and treatments, such as surgery, and they may have unrealistic expectations of when they can pick up the strands of life again.  Again, every patient is different and we would suggest that you plan your recovery realistically so that both you and your employer’s expectations can be met.  

If your endocrine clinic does not provide this information to you, please contact The Foundation’s HelpLine or our Endocrine Nurse HelpLine.  We can talk to you about your individual case and give you some advice on what you may need to plan for.

I’ve had my treatment, how do I plan to return to work?

Again, all patients are different but there are some things you may need to prepare yourself for, including:

• Energy levels:  You may not have the energy you had before diagnosis and treatment. Your energy can return, or, if you need hormone replacement therapy, it may take some time for your endocrinologist to get your hormone balance right.  Inform your employers that this is happening and that you are working with your medical team to balance your levels.
• Medication timings:  Many hormone replacement therapies come in tablet form, however, there are some injections or nasal sprays and even some treatments where you must return to the clinic and have them administered by your doctor.  

It might be that you’ll need to take your pituitary medications during work hours.  If you need privacy to do this, inform your employers and ask if there is a facility available for you, i.e., an unused conference room or an office.

It might be that you’ll need some time to recover from the effects of medication administration.  This should be discussed with your endocrine team to ascertain a schedule that best fits your life.  However, if time is needed from work, again, be open with your employers who may be able to provide you with a flexi-schedule to make up work or other suitable adjustment.

• Transport of Medications:  Some of your medications may need to be refrigerated.  It is unlikely these medications need to be transported to work.  If they are, there are different options, such as cool bags, which will be useful and discreet.

The Experienced Patient

If you are finding that the normal level of productivity at work that you used to enjoy is waning due to pituitary conditions, or you have ‘pituitary days’ where you do not feel yourself, this may cause problems with employers.  In most cases, pituitary conditions are not ‘visible’ conditions.  They are also not well-known, such as diabetes, thyroid, multiple sclerosis or others.  Therefore, some employers may not understand some of the physical challenges you may be facing or other challenges such as fatigue, problems with concentration, difficulty multi-tasking or memory problems.

If your employer communicates they are concerned with your performance, in the first instance, attempt to educate them on your experience with the aid of literature from The Pituitary Foundation.  You may need to have an honest discussion about reasonable adjustments at work so your employer will be aware of your possible limitations and you will not need to endure the stress of unrealistic expectations.

Reasonable Adjustments at Work (source: www.direct.gov.uk)

Under the DDA, your employer has a duty to make ‘reasonable adjustments’ to make sure you're not put at a substantial disadvantage by employment arrangements or any physical feature of the workplace.

Examples of the sort of adjustments your employer should consider, in consultation with you, include:

• allocating some of your work to someone else
• transferring you to another post or another place of work
• making adjustments to the buildings where you work
• being flexible about your hours - allowing you to have different core working hours and to be away from the office for assessment, treatment or rehabilitation
• providing training or retraining if you cannot do your current job any longer
• providing modified equipment
• making instructions and manuals more accessible
• providing a reader or interpreter

Things to consider at work

You can play an active role in discussing these arrangements with your employer. You might also want to encourage your employer to speak to someone with expertise in providing work-related help for disabled people, such as an occupational health adviser.

Issues for you both to consider include:

• how effective will an adjustment be?
• will it mean that your disability is slightly less of a disadvantage or will it significantly reduce the disadvantage?
• is it practical?
• will it cause much disruption?
• will it help other people in the workplace?
• is it affordable?

You may want to make sure that your employer is aware of the Access to Work programme run by Jobcentre Plus. Through this programme, employers can get advice on appropriate adjustments and possibly some financial help towards the cost of the adjustments.

In many cases, if you have an understanding employer, this will solve the problem.  If it does not, your next route is to ask your endocrinologist to send a letter on your behalf.  Most endocrinologists will do this and be able to put forward your individual circumstances.  If you have trouble getting your endocrinologist to send a letter for you, The Foundation has a proforma letter for consultants which might help.  Please see our website or phone our HelpLine for details.  The Foundation cannot send you this letter, but only send it to your consultant on his or her request.  The Foundation also cannot correspond with your employer for you as we are unable to get involved in individual cases.

If this fails to achieve desired results, you may need to seek advice.  Employment relations, although not perfect, are improving all the time, therefore we suggest you do all you can to speak openly about your concerns and seek resolution.  If your approach to your line manager does not succeed, then you can take out a formal grievance.  If this is not successful and you are not heard with a sympathetic ear, or worse, get the impression that your employer is not doing anything about the situation, you should seek advice externally.  It is important to refer to your staff handbook and be certain you’ve followed the appropriate procedures thoroughly before seeking external advice.

There are a variety of sources that will help including your local Citizens Advice Bureau (CAB, their number may be found in the telephone directory and is often displayed at the local library) or ACAS (www.acas.org.uk, helpline number 08457 47 47 47).  If you belong to a Union, they may be able to work with you, provide advice and help by representing you and attending meetings with you.

The Pituitary Impact

A diagnosis of a pituitary condition may have an impact on your life in more ways than just medically.  Again, everyone is different but you may find you are experiencing a variety of emotions such as loss, grief, shock, depression as well as the need to manage life changes.  These emotions may affect your home life, your relationships and your work.  Dealing with emotional issues alongside attempting to manage your condition and changes to your life may increase your stress including your stress in the workplace.

The Pituitary Foundation has a series of well-being leaflets that offer tools to help with these issues. This includes a leaflet which focuses on relationships and has a section on how to manage and maintain relationships at work.  All of our leaflets are available to read or download on-line at our website, www.pituitary.org.uk or you can request them via our HelpLine or HelpLine e-mail (helpline@pituitary.org.uk).  It can also benefit you to talk to our HelpLine operators or Endocrine Nurse about your concerns.  Lastly, The Foundation can put you in touch with other patients, you can tell your story to those who understand and get peer support, and often excellent advice, as you travel through your pituitary journey.

Some patients’ physical appearances may alter because of their pituitary condition, i.e., weight gain, facial changes, etc.  This may cause distress if you have to deal with customers, colleagues or even ordering a new uniform.  Further, we’ve had patients report they have feelings of fear that they may be unemployable, or have problems with confidence, or experience feelings of embarrassment or shame due to their performance level decreasing.  

Often, people confuse who they are with what they do.  It is important to remember that you are you, not your job or your career.  You must give yourself permission to do what you need to do for your health and well-being.

If any of these feelings start to overwhelm you, remember there is support available through The Foundation.

Your Employer

Often, when we are experiencing a personal or medical dilemma, we forget that we are interacting with others who have their own ways of communicating or their own agendas and priorities. 

Your employment performance has an impact on your employers and colleagues.  It also has an impact on business needs.  When speaking with your employers, it is advised you are thoughtful, measured and diplomatic in your communications.  Before a meeting, take a moment to put yourself in their shoes and try to be open to what they have to say.

Often, managers become managers because they are good at technical skills, but they may not have people management skills.  If you experience difficulty, it will be hard to be patient but they may need your understanding as you need theirs.

Strategies

You may find yourself in the position of having to adopt strategies to deal with your life after diagnosis.  These could be reasonable adjustments you discuss with your employer or considerations for a life change. 

Some ideas:

Adapting strategies to discuss with your employer:

• Could you (and would your employer consider) a reduction to part-time or a move to flexi-time
  • You may want to assess if there are any benefit entitlements due to shorter hours or less wages.  Contact your local JobCentre Plus for information.
• Can you work for your employer on a retainer or in an advisory role so that you can choose your times of working?
• Can you work from home for all or part of the time?
• Could you move to a lower-key career in the same role or with the same employer?
  • This may mean less pay and that may seem frightening.  But, sometimes in the grand scheme of things, less stress and lifting off the heavy weight of expectations (you of yourself and from others) can offer you a better work/life balance and more quality-of-life which might be more important than earning more money.

Remember, it may be that you simply need to take the pressure off in the short-term.  As suggested earlier in this leaflet, if you are having problems, be certain to discuss them fully with your endocrine team.  It may simply be a matter of hormone replacement adjustment.  

Thinking strategies to consider if you need to make a life change:

• Is self-employment an option?
• If you are not able to work for a time, consider this as a ‘time out’ (forced on you of course) to think of things you never had time for before. 
  • Reconnect with family and friends, read books you’ve always wanted to read, rent the films you’ve always wanted to see, take up a hobby which has always interested you, go outside to take walks, etc.
  • Do something useful to keep socially active, your skills sharp or learn new things.  Local charities could almost always use a helping hand.  Or, you can take some time to retrain or learn new skills.
• If you are the main breadwinner, can you work with your partner to share the burden or reduce monthly expenses?  You may need to consider some other ideas such as:
  • Taking in lodgers (short-term or long-term)
  • Renting a parking/garage space
  • Looking at monthly budgets to improve cash flow
• Start a journal, not just about employment, but also your experiences, problems and feelings.

These are suggestions from other patients.  You may find your own ways to adapt or you may need to discuss your experience with someone else to find creative strategies.

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One Patient's Story

I had pituitary surgery in 1993 and was off work for 9 weeks. My boss and one of his colleagues came to visit me while I was still in hospital. They were pleasant enough and appeared concerned about how I was, but were also very keen to know how long I thought I'd be off, as they may have to consider promoting someone temporarily to cover my position.

I probably returned to work before I was ready, because I felt (subtle) pressure to go back. Shortly after my return, my job ceased to exist and I was transferred to another department. I felt cheated; I wouldn't have rushed back if I'd known!

Things were OK for a couple of years, but then I began to feel more and more tired and irritable; my memory and concentration were getting worse all the time. My boss told me, "It's your age."- I was 39! Or, worse still, "It's our age." " she was 9 years older than me!

I found that work dominated my life; I didn't have the energy to do anything when I got home, and at weekends I would just sleep. I also had Diabetes Insipidus, which was difficult to manage, as I worked in a laboratory, where eating and drinking were not allowed.

Eventually, feeling tired and irritable, I had a major row with my boss (about a work-related topic, not connected to my illness) and walked out! That was the end of my 26 year career. Fortunately, I had a sympathetic GP and I was eventually retired on health grounds.

A couple of years later, following a change in medication, I began my new life. I am now self-employed; I work part-time, from home, and quite frankly, I've found the work I was born to do! I can honestly say I've never been happier. So, don't despair; sometimes even the worst of circumstances can turn out right in the end.

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Resources

Citizens Advice Bureau (CAB)
Website: www.citizensadvice.org.uk   Or check your phonebook or libraries for local listings.

Advisory, Conciliation and Arbitration Service (ACAS)
Helpline: 08457 47 47 47
Monday - Friday  8:00 a.m. " 6:00 p.m.
Website: www.acas.org.uk

Department of Employment and Learning
Aim: to promote learning and skills, to prepare people for work and to support the economy.
028 9025 7777
E-mail: del@nics.gov.uk
Website:  www.delni.gov.uk

Department of Work and Pensions (DWP)
The DWP helps people to achieve their potential through employment, so that they are able to provide for their children and to work and save for a secure retirement.
Website:  www.dwp.gov.uk

JobCentre Plus
JobCentre Plus is a government agency supporting people of working age from welfare into work, and employers to fill their vacancies.  They are a part of the Department of Work and Pensions.
Website:  www.jobcentreplus.gov.uk
Check your phonebook for local contact information.

Directgov
The official government website for citizens.
For employment issues, find advice here on jobseeking, resolving workplace disputes, discrimination at work and trade unions.
Website: www.direct.gov.uk

©2009 The Pituitary Foundation.  This material may not be stored or reproduced in any form or by any means without the permission of the authors and The Pituitary Foundation.

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