Telling your employer

I have a dilemma that many of you have had at some point in life with PD and that is when or if you should tell your employer you have this awful disease.

Its unpredicatability as to when it mainfests itself and when it goes unnoticed is hard to explain to those looking in from the outside so you try and hide it as best you can. At least that is what I have tried to do. However now I am reaching the point where I can't hide it any longer but dreading the consequences of finding myself going on 60 with little chance of getting another job. And it is doubly worse when you have no partner to give you any support.

I would welcome any shared experience.
Hi Mikeyd
I informed my line manager who told my 3 office colleagues (with my consent) about my diagnosis of Parkinsons. I was off work at the time as I was devastated with getting the news via a letter in the post. However, my work has been very supportive and have passed some of my stressful duties onto others (who understand and are happy to help)

You cannot lose your job if you inform your employer of your PD as it would be discrimination and I have had my work station assessed by the Occupational health dept who ordered me a new chair, a stand for raising my computer screen and a roller mouse which have all helped greatly.

I would say that its time to let your employer know as they've probably noticed a change in you but dont want to say to you!
Good luck
hiya ,ihate to say this,and thought quite abit about if to rite this or not,i dont wont to put others off.but also got thinkin i was treated soooo rong and i dont wont others to be treated this bad . 11 years ago when i was dx,ihad been workin in a infant shcool,i had got a tremoer ,thought nothin of it ,put it down to bein a shy nervous person,but then i started droppin things,readin to the children became alot harder to concentrate,in general things were goin rong for me,as time went on staffstarted goin on at me to go to gps on and on they went till,i gave gp told me i needed to see a neuro,to cut along story short,i eventually got told pd,i told headmisstress,but had said i had asked for 2nd opion,she held back from tellin the governers.but when 2nd dx came governers called me to ameetin ,and it wa s decided i had to leave,aparently mothers had been complayin about me as well cus i was makin so many mistakes durin my job.ileft.but got told few weeks later i could of appealed,it was rong the way i was treated,but by then i was in such a mess in the head cus of dx and no job,i could not think straight,it messed my life up,and it was just all rong
Hi Mikeyd

I was diagnosed with PD in March this year. I was shocked but as soon as I got home from the hospital I spoke to my boss and told her my diagnosis. She came to my house and we talked it through, she made me an appointment with occupational health who explained how my needs would be met to help me to continue with my job.
My boss has promised to make whatever adaptations I need as and when that happens.

Last week I was promoted ! I am now going to be managing a team of 3 other people working with children with special needs.(lots more money too)My boss said I deserved it because my work was excellent.

I cannot fault my employer (I work for my local authority early years department)they have been amazing, so supportive and I am so glad I was open and honest with them right from the start

Good luck, my advice is to be honest you never know what good things may still happen for you. Life is not over just because you have PD
Hi MikeyD you must be a relative. I am other half to PwP and an Employment Law Consultant. As a PwP you are disabled under the Equality Act and therefore your employer must make reasonable adjustment to accommodate you at work. If you are a member of a union get them involved as early as possible. If not contact Citizens Advice who can be very good. You don't say what you do or how big an organisation you work for which is very important. What is reasonable for a big company may not be for a small one. Do not worry they cannot take action against you legally without exploring all the options and discussing them with you. Please keep all letters and take notes in meetings. If your writing is suffering get a small digital recorder for meetings always explaining that you need it as yor "disability" prevents you from taking contemperanous verbatim notes

If you need any more please come back with any questions you may have.
Forgot to say you do not have to tell an employer what is wrong. It is up to him to find out. That's the law but to be practical you lose nothing by telling him and if he takes action based on PD you can sue him in an Employment Tribunal

Please come back if you need more.
I feel for you Mikey , in your dilemma. Caroline, I'm pleased you've had such a positive experience.
I know we're supposed to be positive and upbeat , but I've decided to tell it how it is for me. In fact , what I report may shock and depress you.
I work in an N.H.S. hospital, and carry out a clinical procedure. I do not tell people about my condition -- apart from a few close colleagues and my immediate boss , no-one else knows. I'm sorry to say that I would fear for my job if the head of the department knew. My immediate boss, regularly assesses me for competence and she has advised me to keep quiet while my performance is up to standard.
I know you cannot be sacked for having a disability, but I know they would try to use other reasons. For instance , the way we have our leave decided has now changed , and several people, myself included are fighting these new rules which we think are unfair. There are also health issues to do with new equipment installed which is inadequate and is causing some people to suffer back problems. I am also getting involved with that.
The Head of the Departement, in an effort to reduce his budget, tries frequently to make some people feel they have no choice but to resign.
I find it incredibly disappointing that in a hospital of all places , you'd think the bosses would be supportive, and we could be open regarding our circumstances. Not so.
I am amazed at the ignorance of these people, and ultimately their prejudices.
I am really sorry to paint such a bleak picture , but feel i must say it as it is for me.
I manage fine at present. My main symptom of fatigue is easily hidden, and I am so grateful for the medication which allows me to continue.
I've become quite an accomplished actress , when I need to be!
Hi I know this is going to differ from person to person my experience has been ok but not without it's difficulties.Telling was less of an issue as I had developed an obvious tremor. Like most people I was pretty stunned by dx and took awhile to sort my head out.

On the whole my employers (a local authority) have been reasonably receptive but often pretty clueless and have needed to be prodded and cajoled into things, which can be wearing!

But a colleague told me about access to work which you can self refer to via national number and local job centre plus, they will assess your job and the issues you face and write a report to your employers stating the aids/adaptations you need to do your job and they pay 50% of the cost. In my case this meant computer equipment which was easier to operate/voice activated typing (not without issues) electronic diary, specialist desk, chair and more clerical support.

From the beginning 4yrs ago my colleagues have been supportive.I have also been advising that we(me and employer) should have a jointly agreed plan to manage my health at work which everyone agreed was a good idea the first meeting to agree the details of this is tomorrow! This only happening now because I had period of illness and the return to work note was conditional and included the plan.

It was only recognised at this time that I take a lot of medications, they needed emergency contacts and workload needed managing to optimise my usefulness to them whilst maintaining my health, my PD nurse has also been supportive of this process, we look like we are getting there now :grin:

It's been a journey but I still have skills and want to remain working for as long as possible, so despite all I have no regrets. Good luck whatever your decision :grin:
Hi,I have had little choice in telling my employer(NHS)as my symptoms were so obvious before I as put on sick leave by my GP.My line manager is being supportive because that is what the policy says she has to be,she is following the sickness monitoring procedure and I am in no doubt she will use it if allowed to terminate my employment,but as I am a Senior Manager in the organisation I know how it all works and I willnot go down without a fight.

My advice is only say when you have to,I would expect my staff who work for me to advice me when it becomes a problem for them rather than when it was a problem for me as their boss.

Good Luck and remember we didnot ask for this so why should we be penalised for this illness

Denise 1964 :sunglasses: