Please provide your feedback for this research looking at lupus and employment - People living with moderate/severe lupus (in work and not)

[Paul_Howard]

This post is for the discussion of one of the next important questions in the research of lupus and employment. For more background about this, please read the post here - healthunlocked.com/lupusuk/...

We have not quite decided on our approach to this – there is a limit to how much we can achieve in one grant, but we are considering doing detailed interviews with

•People aged 20-30 years old, either in work or not able to work to understand their experiences, including the impact of lupus on education and working life, or if not in work what stopped them working, what help have they had, how they see future etc.

•People aged 30-40 years, as above though less emphasis on education, though perhaps changes they have made in employment because of lupus

•People aged 40- 50 years, as above – trying to find people both in work and out of work, including some who have never worked, and some who have retired on medical grounds.

•People aged 50-60 – both in work and out of work with some of the same questions, though this will be the age group that includes the group of women pensioners who are getting their pensions up to 7 years later than they were expecting and now have ill-health

Employment includes both self-employment and employment and we will try to get a spread of both. Some people may be doing less than 16 hours a week and on ESA or other benefit.

Please share your feedback in the comments below or if you would prefer not to post a comment below, you can email your feedback to [e-mail]

[whisperit]

Not sure what feedback you are looking for, but for me ( a 50-something year old male with a systemic AI disorder but not lupus), several issues were important around employment. I was employed by the NHS in a half time job, but also worked as a freelance in two other jobs. For me, some key points were:

1. the attitude of my NHS employer and ensuring that everyone was "onside" whilst I applied for ill health retirement - I had to do some work to ensure this

2. trying to maintain some freelance work - but this failed as I was too unwell to stick to even minimal contract schedules

3. Subsequently, I have chosen to avoid the DWP not because I am not eligible or because I do not need the support, but because the process is so stressful. I guess the govt is delighted, but it shouldn't be!

x

[Milliecox in reply to whisperit]

Thank you whisperit - this is very helpful - what do you think of the research suggested - is there anything else you would like to add, any questions that you think need adding e..g questions about colleagues' attitudes?

Thank you

Sara (potential researcher could not register under my names)

[Heatheric]

I am a woman aged 63 - retired now with NHS pension (but not state pension until age 66). I would suggest some questions around the area of reasonable adjustments to work to enable people to continue in employment. I was able to work from home 2 days a week to minimise travelling (I had 1.5 hour drive each way), also table lamps were provided for each of 6 desks in our office so the overhead lights could be kept off. Incidentally, this was welcomed by my colleagues as well as the room was much cooler!

[Milliecox in reply to Heatheric]

Thank you really helpful - do you mean what sort of reasonable adjustments would help someone with fluctuating illness - this will be one of our questions - it is interesting how adjustments are often welcomed by everyone else.

Thank you

Sara

[Melba1]

Hi, I am female, age 43 and happy to participate in your study. I work 50% hours in health research.

I am extremely fortunate in that I have a very flexible job so can work from home (from bed sometimes when the lupus is bad!). Sometimes I have periods where I am too unwell to do all my hours in a week/ month but have an understanding with my boss/colleagues that I then use my 50% off time in good weeks to make up the hours. I keep a note and over a year I manage to average the amount of hours I’m paid for.

I would think questions to maybe focus on could include:

Communicating about the disease to management/ colleagues

Encouraging flexibility in working and helping people diagnosed into the right sort of jobs that won’t exacerbate their disease

Why people who clearly aren’t well enough to work have to jump through so many unnecessary and stressful hoops to get any financial support! Surely once a chronic disease is diagnosed this could happen more automatically rather than the very unwell person having to make themselves more unwell fighting or not having the energy to do so.

Impact of lupus not just on the physical capability/ energy to work but also the cognitive ability. I certainly do not have my pre-lupus cognitive ability and this drops even further when in a neurolupus flare so I accept my career prospects are much reduced. Personally I don’t care too much as my priority is my children and feeling I’m doing something useful but if I’d had lupus when I was younger I think that cognitive impairment could have a huge impact on self esteem and confidence to work?

Good luck with the study!

[Milliecox in reply to Melba1]

Thank you very much for this helpful comments Melba 1 - we will certainly take this into account when we apply for the grant.

If you think of anything else do chip in

Sara

[sarahroly]

I'm 52 years old, married and have a 10 year old son. I work full time and find it extremely difficult. my house isn't the tidiest as after a full day's work I really don't have the energy for housework or anything else for that matter. My specialist would like me to give up work but I know I would never get any assistance or benefits as my SLE doesn't affect me the same every day as its a fluctuating illness.

Work really don't know what to do with me and runs an "attendance management programme" which means every time you are absent you get called in for a meeting, adding additional stress to an already stressful condition. I myself have already had 2 contractual meetings which really pees me off as I declared my condition when I applied for this job and they even sent me for not one but two medicals to ensure they were happy to employ me. I've worked for the company for 8 years now and get even more stressed every time I have a flare coz I don't know what they will do next.

As if it's not bad enough having this chronic disease For the rest of our lives!!!

Hope the study goes well and you can make a change, even if it's only a small one.

Sarah x

[Milliecox in reply to sarahroly]

Thank you Sarah - sounds very difficult and the problems you are outline are ones that we are hearing from many people who do not feel they have been heard and that their problems have been underestimated.

We think (we would actually say we know!) the there are very difficult problems with lupus and employment and that it is particularly difficult as it is a life long condition.

We haven't go the money for the study yet and are posing these questions to see if people with LUPUS think the application can be improved and also if people with lupus are keen on the idea of the study. .

From what you say it sounds as if you think it would be useful; thank you for taking the time to write this and describe the specific difficulties of working with a diseases like lupus, fluctuating disease is especially tough

Do keep looking

Thank you

Sara .

[fabwheelie]

Hi Paul_Howard I'd be happy to participate. I had to retire from my career when diagnosed aged 37 (I'm now in my 50's) I've had to accept that I can't work. I'm actually considered "mild and stable" with my Lupus but the fatigue and how much I need to pace myself just to function / keep myself and my home going means there is no way I can be in employment. Hence it's not just "moderate / severe " Lupus that affects ability to work, as "mild" is often just used as a "medical differentation" to indicate not needing severe medications, or not having organ involvement ... the "mild lupus" label often has no bearing on fatigue and pain symptoms / the ability to be employed

I encounterd difficulty accepting my limitations, giving up a career I loved, and often had to fight the concept that I was young (hence would be entitled to the "ill- health pension for many years / had to "prove" the permanace of how my symptoms would be likely to affect me). Plus I had to fight the "some people with Lupus can work" concept ... many of us have had to medically retire, or can only work under very special circumstances/ flexibilty / understanding employer

I also get fed up of having to keep being assessed by Government as to whether I'm entiled to benefits ... Why can't medical retirement be seen as genuine not being able to work ? ( I can get ESA (previously Incapacity Benefit), but I've had several assesments, (including having to go to an appeal) and could get another ESA assessment at any time. Also I don't qualify for DLA / PIP as I do manage to care for myself so I'm not cosidered "disabled enough" / don't fit any of the critera that would give me a "score of the points needed" to get PIP, as the fatigue and need to pace doesn't seem to carry "enough weight"

[driven in reply to fabwheelie]

Completely agree that the whole lupus spectrum should be covered. I can only work because my job is so flexible but I have lived for thirty years with so called mild lupus. I have had antI ds DNA levels in 70s range but luckily...till now...no known organ involvement and I resist steroids as far as possible....have had to have some periods on them. I don't believe we should think of mild lupus or severe lupus and reify this distinction. They are the same condition with the same underlying symptoms but you can be lucky or very unlucky with what flares do to you and onice damaged, organs don't all repair. The medics react best to the more serious symptoms and organ damage....quite rightly....but it leaves a lot of people to struggle with chronic and life changing symptoms that they feel even the medics don't properly understand or care about...its just 'mild' and there is not much they can do so to them our issues are not an issue. Have you thought of using this site to do research? There is some very interesting social science analysis of Web based fora. I am sure you have seen the kind of thing. I slso think there may be particular value in focusing on older people who can reflect back on the impact SLE has had on work/life/career..... Also in policy/impact terms the voices of older people may be listened to more as whatever benefits come out of changes to policy these won't actually be of much help to them....so they won't be able to be seen as self interested complainers. So I think you fifty plus participants are essential.

[Jill41]

I'm currently leaving my present job as as soon as I was officially diagnosed they tryed to get rid of me on capability they lost obviously they had /have no understanding of lupus at all and for where I worked that's disgraceful I'm leaving very pissed off my face just didn't fit to receive any help ,my new employers have already stated any changes I need they will do if I'm not well they will accommodate and swap shifts cover etc so as for my old employers good riddance

[Milliecox in reply to Jill41]

THankyou for putting up your story -it sounds as if you are somewhere more supportive now.

Do you think the research can be improved

Best wishes

Sara

[Tripitaka]

Hi Sarah, I am currently off work and applying for early retirement due to ill health (50 years young). I love my lecturing post but the working environment just isn't conducive to optimal health. The main challenge being lights in classrooms/meeting rooms. I have light sensitivity and I teach in many different classrooms/venues. Work did eventually put a 'film' on my office window but I think it is important for employers to make reasonable adjustments 'in a timely manner'. For example I returned to work on a phased return and it took my employers at least 3 months to make the adjustments (which I think hindered my health progress) ....I managed to stay another 7 months in work but 3 of them was before the adjustments were made. This I think has contributed to another 'flare' of which I am currently off and now applying for ill heatlh as I don't think I can sustain my job long term. Also the process of applying for ill health needs to be improved to minimise stress - lack of cumunication from HR, a clear pathway of what to expect and when.

Hope this is helpful in some way to shaping the questions for you application for funding.

TTxx

[Milliecox in reply to Tripitaka]

Thank you Tripitaka This is helpful and very sorry that you are now having to leave your job - it is particularly useful point that you have to move from room to room and therefore cannot guarantee the environment in which you work.

This is point no-one else has made - the length of time it took to make reasonable adjustments is sadly all too common and one we will ensure it included too.

Thank you very much

Sara

[driven]

I think it is really important to do this and I would like to volunteer to be a participant. The research team might consider interviews by skype to cut down on costs. I would be happy to pass on my email to them.

[driven]

Ps. I think family situation must be included. When only so much resource available....energy etc....family context makes a huge difference to ability to work. With SLE what you prioritise is critical as only first priority may be possible to realise. Juggling kids and work or demanding partner or parents and work maybe untenable. It is for me. Work dominates everything. Then partner and animals. Friends very neglected. Too tired for a social life.

[driven]

Finally I think the researchers should ask about how recent changes in work have affected the way people with SLE are treated. Increased managerialism may erode the autonomy and flexibility that so many people with SLE need to work. The introduction of more pressure, cuts in resources, labour intensification and the discourse of benefit cheats and malingering may all be relevant. I think that's enough from me for now but happy to help anytime.

[FlowerdownAnnC]

Hi - I would happily take part in this research study. I am coming up to 53 & was given the lupus label the day before my 33rd Birthday. At that time I was extremely ill, excruciating pain in so many joints, fatigue that was all consuming, I had pericarditis, pluerutic pain the list is endless.

I didn’t tolerate azathiaprine & became neutropenic requiring a long spell in hospital. I was away from work for almost a year. At that time I was told my diagnosis meant I would never work again, certainly not full time & certainly not in my health care role.

My manager at that time was very understanding & once I was able to think about work agreed I could reduce my full time hours to very part time - working 3 days per fortnight split into a few hours over 6 days. ( I clearly recall the battle that was & would come home & sleep the remainder of those days)

I do so understand the battles people with lupus have to just get by. I am lucky as over the last 20 years I have been able to apply for posts that are more suited to my condition & the lupus “monster “ has stayed in its cupboard with the drug regime keeping it locked in. ( not symptom free but with a lot of lifestyle management I’ve coped)

Like I say I am lucky & I am thankful every day that after those difficult early years I am able to work. However not without some sacrifice. In this battle had to side step the career I loved and lost my marriage in all of this - devastating!

I can remember the daily agony & effort that EVERYTHING took. I am very much of the opinion that people with lupus shouldn’t have to fight for support to keep themselves afloat both in terms of employment & support in the form of benefits. I have such empathy with those ongoing battles... I’m lucky I can go to work but I am aware that that’s because my lupus monster is held in its cupboard.

Good luck with funding for the research.

[suky6]

Recent diagnosis for me, has meant a change of workplace. I work in retail and the hardest part is being on my feet so changed jobs from 3x8.5 hrs a day to 5x5hrs a day but unfortunately my symptoms have not been relieved, if anything the physical aspect of working is taking its toll. I won't say anything to my manager as I fear having a label attached to me and comments made regarding people off sick has made myself very aware of the instability of my job if I have to go off sick. I am trying to stay in the workplace as long as I can for my mental health but I know at some point I will have to reduce my hours or stop working which I can't afford to do, I still have children at home. I have 6 more years to work to entitle me to a full state pension and at the moment am using that as my goal. I don't think employers really understand about disability in the workplace if you can't do your job efficiently then you are seen as a liability and the attitude is not of inclusion of how they can assist you to stay in your job but more I wish they would leave so we can get more able bodied person to replace them. I hope this is the sort of information you are looking for, if any other information is required then I will try and answer any questions.

[AgedCrone]

I know this study is about Employment & Lupus, but please don't forget AI diseases affect people+65 too......we are old-not dead- & often still have to work to survive. (thankfully I don't need to work, so I'm not mentioning this for personal reasons)

A lot of this group are in dire straights both financially & health wise. Most people with a State Retirement Pension are not eligible for any Benefits altho many still have financial responsibilities. These days 65 year olds often have very elderly parents to care for as well as helping out their children with grandchildren...... Really stressful with Lupus if you still have to work. In fact this applies to any AI disease, which is often not visible & even GPs treat this group as malingerers, not someone seriously ill who needs support.