Equality act

[margiebell4]

Good afternoon, I hope everyone is having a reasonable day. Can anyone tell me if people with PMR are covered in the workplace by the Equality Act?

[PMRpro Ambassador]

Possibly a good place to start would be with your occupational health department if you have one and HR if not. Others have had a lot of support there. Sometimes it is difficult because it is assumed that PMR is managed well with pred - we know it doesn't always apply and managing it well isn't the same as making you fit for work. GCA is definitely covered and I believe some people have been told that PMR is also included. Hopefully they will see your post too.

[SheffieldJane]

Hi margiebell4,

If I cast my mind back to my time in Personnel. I believe that the Equalities Act that incorporates the old Disability Discrimination Act (1995) covers conditions that last 12 months or more and have a substantial effect on day to day living. I think PMR definitely fits that bill, don't you? So that places an obligation on your employer to make reasonable adjustments to comply with the law and to enable an employee with a disability to continue working. This may include adjustment to your working pattern ( hours etc.) or special equipment or furniture, or time off for medical appointments. It should also afford you more protection for instance with job security or consideration for promotion. Employers cannot use your disability as a reason to treat you unfairly. I know we now have to pay for Employment Tribunals so that will Impact negatively on right of redress. I hope some of this is relevant to your question. It's not so much the label your condition has, as the impact it has on your life.

[margiebell4 in reply to SheffieldJane]

Thank you Jane, I have been on reduced hours for over a year now, but now my team of 7 people have been told someone will have to be made redundant or all have our hours reduced. I read that people who are covered by the equality act have to be treated differently.

Thanks again that's really useful.

[Suetum in reply to margiebell4]

It is covered and in a redundancy situation if there is a selection pool which has absence as part of the criteria an adjustment for the disability must be made. The company have to consult through the process so get as much information as you can.

[SheffieldJane in reply to margiebell4]

Hi margiebell4,

Certainly not picked on because of disability. A wise employer would have to have a clear, fair, way to choose a person to be made redundant or a clear,fair criteria for reducing everyone's hours. That might mean not reducing a disabled employee's hours any further, it depends on existing case law. Sounds like it's a tough time in your workplace. I hope it works out well for you.

[Rose54]

Hi

Yes it is I had 4 months off work at the beginning and they had to make reasonable adjustments for when I returned.

They are fully aware of my condition

However if trying to claim disability benefits not good as thy say it is controlled with meds so not a problem

Rose

[lesley2015]

Hi Margibell4

I am currently going through a grievance with my work, I have resigned and am off sick, if this is not resolved I may pursue constructive dismissal, I h ave PMR/GCA

If you look up the ACAS website it discusses disabilities and the obligations the employers have, but basically they have to allow you to have the same opportunities as someone without a disability ~ work place, hours etc. They clearly have their business needs but there is protection from the disability act.

Have a little read, you may find your questions there, but any decision made by your employer should not be made because of your condition.

Hope that helps a little.

[margiebell4 in reply to lesley2015]

Thank you so much, that's really helpful. Good luck with your battle (as if we need another one!).

[lesley2015 in reply to margiebell4]

Yes, well I put in a complaint to start with but that was not taken seriously - its a large cooperate - I have colleagues with lupus, cancer, fibro so they really have to stop and listen.

GCA is definitely classed as a disability and my OH dept thought the PMR would most probably be covered under the equality act because it is long term and often unstable and also, the side effects of the steroids, although having GCA I was on a particularly high dose. It doesn't help that the condition is really not widely known or understood. (I had never heard of it)

Sometimes, someone has to speak up, not just for them self but for others also, my thoughts anyway Unfortunately, when we are unwell, as you quite rightly say, its yet another battle, but perhaps that is what they hope, we wont bother.

Best wishes

[suzy1959]

I really support you,lesley2015 in pursuing your complaint. It is a very brave person who sees it through as it is not easy at all.

I am both blessed and cursed to be self employed. This has meant that I could reduce my hours as it suits me, but there is always a financial implication. As I have not got any lower on the Pred. and am feeling worse and worse after 4.5 years, I have taken a very difficult decision to cut my work drastically and only see a couple of clients per week. I am a counsellor and have realised that the impact of hearing and trying to work with all the distress and trauma has been very stressful and what was once my passion, has now become too difficult. Luckily, my husband is very supportive and we will be able to manage on less money.

I am very interested in the impact of working on people with PMR/GCA and wondering about the impact of work on our recovery. How many people have had to retire early or resign?

[Rokerman in reply to suzy1959]

Am in the same boat Suzy, taking the decision to manage on less money isn't easy, especially if your daughter has upcoming plans for an expensive wedding......!

I have found however, that maintaining a full-time working role has been difficult from a physical point of view but also, there is problem in getting motivated on a daily basis if your hands don't co-operate in drawing and writing! Oh well, must soldier on.......

[Retailmonkey in reply to suzy1959]

When I read all of the comments in the forum I think that I am extreemly lucky. I am just approaching 72 and still work as an international retail consultant in merchandise planning. Over the last 10 years I have worked on average 3 days a week but it comes in bursts and I can spend a couple of months working every day for up to 10 hours and then have a quiet period for a few months.

in September 2015 i finished an 18 month project with Swarovski which involved a lot of European travel but I was fine. A month laterI felt terrible and started to feel all of the classic PMR symptoms. It gradually got worse until early 2016 when I struggled to get up off a chair, hadto stand for a few minutes before I could move and had aches and pains everywhere. Like all men I had put off going to the doctor but finally went to go through the problems we all seem to have in diagnosis. In May I started to suffer symptoms of GCA which again developed progressively but without a diagnosis. In July my temporal arteries started to swell and harden very significantly and a Google search led me to GCA. Booked appointment with doctor (3 weeks hence) but arteries worsened and a telephone call led to the duty doctor asking me what I thought it was, agreeing and having me in for a blood test that day and straight on to 40mg pred. 2 weeks to consultant visit and an ultra sound confirmation of GCA (I had it confirmed 8 times a week later as a guinea pig for an international training course in the use of ultra sound in GCA diagnosis)

Where does the luck come in.Just at the time of my diagnosis a new project came up in Moscow (I live in England) and the pred euphoria kicked in to make me feel I was so much better I could take it and here I am on my third two week trip to Moscow since late September working with a group of people in their twenties and thirties and keeping up with them for 9/9 hours a day.

I have been on what many would consider a very rapid reduction in pred (4 weeks at 40, then down by 5 a week to 20, 2 weeks at 20, 2.5 per week to 10 and now on my 3rd week at 10) and started on Methatraxate 4 weeks ago. I have a headache most days but liveable with, hardly move from my hotel room and the TV during the weekend between my two weeks and take sevel days to recover when I get back home but i am working, surviving the stress and feeling 10 years younger than I did a year ago.

Excuse the lengthy reply but I just wanted to say that there is another picture. I know I am only managing the situation (and realising it was management not cure was a big step forward for me) and that my luck will at some point turn and I will have a flare but for now I count my good fortune and hope my story shows that sometimes things are not so bad

[enen in reply to Retailmonkey]

Phew!! Well done to you. I am reading your story at 4.30 am as still suffering from pred sleep pattern and dread returning to work full time. Your an inspiration!

[Suetum]

As a Fellow CIPD and Founder of an employment law advice company I can confirm PMR is covered by the Equality Act.

[Brensy]

Hi had this discussion at work today basically it's not the bane of the illness it's how it affects you and also if you have had it for more than 12 months or Ims likely to last more than 12 months then it is covered, have you considered applying for personal independent payment? Again this process considers the effect that the illness has on your lifestyle and mobility. I failed the mobility component by two points but if my mobility decreases I can contact them for tea assessment (. My mobility is seriously compromised at the moment and I use s walking stick at work. ) I was award the basic rate of the living conpoben, PIP replaces DLA for adults so logically this means if you are awarded PIP then your illness should be considered as a disability due to the changes you have had to make to your lifestyle and mobility , hope this helps best wishes Brensy xx

[Rose54 in reply to Brensy]

Hi

You where extremely lucky if you where awared PIP as PMR is not recognised as a illness that will not improve with medication .

I complete many claims for PIP attend assessments and appeals and so many have had payments cease ,

Even Fibro suffers are being refused .

So well done for being awarded PIP

Rose

[Brensy]

Hi Rose I was really shocked to be awarded PIp all be it the standard rate of living allowance, due to osteoarthritis in my knees and hips and the weakness caused by the PMR I assume this is the reason I have been awarded it. Even thoUgh I am on steroids my mobility has been severely compromised I can't walk any distance without being in pain or stand for any amount of time without pain from my waist down to my ankles on both sides, and severe lower back pain I don't think it's been possible to determine whether the pain and reduced mobility is caused by PMR or OA. When I went for the PIP assessment I was advised it wasn't the actual disease you were assessed on but more how it affects your every day life. My every day living has changed drastically as has my mobility , I have had to change my job role, the shifts I work and the number of hours I work, the biggest change is in my mobility and my energy levels which are so low they are sometimes not even bearable add to this the side effects of the many meds and you have my current life in a nutshell, I sure that this is no different to what most PMR suffered are going through, it is a little known and much misunderstood disease, I was fortunate enough to be assessed by a health care professional who understood the condition and how it has restricted my life x

[PMRpro Ambassador in reply to Brensy]

Has anyone considered piriformis syndrome or myofascial pain syndrome for the cause of the pain when standing? They both lead to sciatica and spasmed low back muscles and are often found alongside PMR - they accounted for more of my problems than the PMR in fact, I couldn't walk for more than a few minutes without pain and standing was exhausting.

[Rose54 in reply to Brensy]

Hi

Yes you are correct assessment is not based on your illness but on how it effects your life.

Daily living element is awarded for care I am surprised you did not get the mobility element .

But any awared in this day and age is very welcomed

Take Care

Rose

[Brensy in reply to Rose54]

Thanks so much Rose, as you say every little helps, scary how my life has changed so much in 12 months, I guess it's the same for everyone! The only people who seem to know about this disease are the ones who actually have it! It's really difficult to explain to people what it is actually all about, thanks for your kind words Rose it means a lot xxx