I’ve had very unhelpful contact with my occupational health service. I saw 2 advisors neither of whom knew anything about lymphodema. The 1st advisor said no lifting for 3 months as if my problem would disappear! The 2nd advisor said she didn’t know anything about the condition (at least she was honest) and waved some web pages about odema at me. Luckily my boss has been more helpful and used the information I have gleaned from this forum/website to do a risk assessment. I’ve been intending to make a complaint but have found returning to work so tiring haven’t got round to it. Now I’ve been sent an evaluation letter by the occupational health company so I’m planning to respond. I work for a large county which must have thousands of women employees, by the stats there must be a significant number of these employees who have had breast cancer and a proportion who are at risk of lymphodema because of lymph node removal. Can anyone give me a rough ideas of % I can quote for those at risk of developing lymphodema after surgery. I know it is difficult as it is difficult to find blanket % for all diagnosed with BC; I want to tell Occ Health that they need to train advisors better and also not rely on managers in the work place to do risk assessments in areas they are not qualified in (my boss is a teacher having to do lifting/physical stress risk assessments!).
Sorry to rant on a bit, maybe it’s Christmas indigestion that’s making me grumpy!
Littlemrs
Hello Littlemrs
I got told that 2 out of 3 women were at risk of developing lymphodema after full anc node clearance. I have been very careful re infection etc since I had mine removed.
Hope this helps and soz your oh service are being so unhelpful
S
xx
Hi Littlemrs
Don’t worry about the rant - go for it! What a shame you are having to do battle with the general ignorance surrounding lymphoedema.
I’m going to post again when I’ve dug up my stats (and their sources, if I can find them) - it’s chaos here - expecting visitors - BUT - basically everyone who has had nodes removed, even if it is just a sentinel node is at risk, FOR EVER. The risk varies with number of nodes removed, age (the older you are, the more likely you are to get it), whether you had radiotherapy or not; diabetics and overweight people are also more susceptible. How good a lymphatic system you had to start with is also a consideration, and the elephant in the room, I suppose, how good your surgeon was - altho’ trying to assess that with so many other variables would be a nightmare and not very fair, I suspect (altho’ I would love to know if some surgeons had higher lymphoedema rates than others!).
Will post again - soon, I hope.
X to all
S
I was told it is a liftime risk if you’ve had nodes removed, and 1 in 4 people go on to develop it. Sorry you are having such a hard time with OH, hope you get sorted quickly.
Thank you for your replies. I’ve taken the christmas tree down and packed away the other decs so the letter to OH is next on my list. Back to work tomorrow so I’m trying to cross as much off my to do list as possible as I start to do some full days at work and am a bit apprehensive about being able to cope. I’m going to aim for the assertive tone in my letter with helpful pointers where the trainers should go for more info AND ask for a response to tell me what action has been taken. I’ll quote from your replies and let you know of any progress.
Wishing you all a Happy and stressfree 2009.
Hi littlemrs. I’m interested about your comments re risk assessment. I am the health and safety officer at work and I think I should write a risk assessment regarding lymphoedema. We are only a small staff (25 - primary school) but two of us have had breast cancer and I have gone on to get lymphoedema. Have you any advice about what to put in the risk assessment? Thanks
Hi ladies
Sorry to butt in. I have just returned to work ( also for a large company) with Lymphodema. I havent had an assesment should I have done. I have mentioned a few concerns as I drive for a living & said that I could no longer do long journeys as my arm just “dies on me” but this seems to have fallen of deaf ears & its more about whats good for the business.
Any Ideas
Tips
Ladies i’m feeling fired up like an evangalist (sorry, spelling?). The occ health team that i’ve been moaning about recomended a risk assessment but only because I made a fuss and had already been diagnosed with lymphodema. Stupidly i’ve made mine worse as i had to move classrooms in the holiday and tried not to lift too much but… it is very very hard having to rely on other people all the time. Any way i’ve gone back to using my sleeve as I had gone down to just a hand piece and my arm seems to be improving BUT feel very cross with myself as the condition had been improving so much the BC nurse was talking about my not having to wear compression all day, every day. Sigh!
Back to the risk assessment. My human resource lady sent a form but it wasn’t very helpful to me as it was all about work stations which isn’t a large part of my job. The head teacher and I sat down and went through a typical day with the list of things i had gleaned from this site (I made another post last autumn where I was asking for help with the list so that may help, Hatts). We then tried to identify which parts of the typical day involved lifting, repetitive etc etc and wrote down how it was to be avoided/ treated. it was helpful as i didn’t want to be in the position of having to constantly ask a colleague to lift resource boxes and them to feel put upon as many of my colleagues also suffer from back problems. The head teacher and I then had a meeting with my colleague and we went through it looking for solutions to managing the lifting problems. She was helpful and of course wanted to help but equally agreed with me that she could not get all the resources out on her own (we work in a nursery class so lots of big heavy equipment). We went as far as listing latex gloves (to cover hand piece as I’m often doing messy things), antiseptic wipes for cuts, hand cream (I graciously said i’d provide my own!). The best thing is I got a new lap top out of it. What i should have done is asked for a laptop back pack as I travel on the bus and even with a lightweight laptop and another bag all in 1 “good” hand I find it difficult to manage. It was a case of the Head teacher and I making it up as we went along as neither of us have any specialist knowledge. As i’ve now moved classrooms and am working with different colleagues i’ve asked for it to be redone and my new colleagues to be talked through it so they don’t think I’m just skiving. I expect the Head is fed up with me but I am still at the stage of a phased return and am supposed to be having weekly reviews about how I’m coping. The LEA and schoo lhave taken it all very seriously what ever they have muttered when I’ve left the room, partly because they do care about my welfare but also because of the disability act.
I still haven’t sent the grumpy letter to Occ health i’m feeling overwhelmed with work at the mo but it is on my to do list so I’ll let you know what their response is.
take care.
PS For anyone else in a school the teaching unions are usually helpful with advice on risk assessments so maybe your union would be a source of advice.
Sorry Tippy, not ignoring you. Did you have an occ health assessment before you went back or a return to work interview? If its a large company they will be anxious not to be found being negligent in view of the diasablitiy act as BC is specificaly listed in it. I wonder if your HR department can help. Am i right in thinking part of their remit is employee welfare? Do i hear a hollow laugh?! If you are in a union they can be helpful to advise or make a fuss on your behalf.
I feel with the number of women working until a later age and the % of women treated for BC, EVERY large employer must have a significant number of women (and of course men too) who are at risk. We are doing fellow women and the employers a service by bringing it to the attention of the employer. I think it is mainly lack of knowledge not a wilful disregard for personal welfare that means lymphodema risk is ignored.
Lecture over!
All very interesting. This is opening up a whole new can of worms for me. I wouldn’t have thought about risk assessing until last week when one of the office staff said that we should have one in place for me. I read your other post littlemrs. When you say that occupational health were involved, what exactly do you mean? Was that through the authority or union or something else? I wouldn’t know where to start?
Hi all
I work in a school and have had horrendous problems with O.H. I haven’t gone back to work yet and my GP is signing me off sick. I saw an OH doctor who told me that I was not under any threat of developing lymphoedema (even though I have had all my lymph nodes removed!!!). He said that if I was going to develop lymphoedema I would have done so straight after surgery a year ago. When I pointed out to him that I had my surgey 6 months ago because I had neoadjuvant chemotherapy he said he had never heard of this!!!
Since seeing this doctor I have been diagnosed with lymphoedema. I asked my consultant to become involved as I found the whole episode very stressful and he wrote an excellent letter for me to use. The incidence of lymphoedema at the hospital where I am treated is currently 40%. Apparently peak time for lymphoedema to occur is 3 years post surgery.
Hi Cora
The OH doctor you saw is barely worthy of the name. How can they hold these jobs and still be so ignorant? And what a rotten experience for you to have to through on top of everything else
What a relief it must have been to have a consultant who supported you with an official letter. Are you expecting any progress with OH in the near future?
40% rate for lymphoedema at your hospital sounds very high - or is this a 5 year follow-up percentage or similar? It could also be that they are very good at picking it up early…
X
S
Cora, I’m sorry to hear about your problems. I didn’t see the Occ Dr just 2 different advisors. The 1st was so horrible that I felt very upset. She implied that I was being a wimp and should be back at work, when i protested that i still needed to sleep during the day (this was 1 month after finishing rads and i had been very ill through chemo) she said that maybe the school office could find me something to do instead of teaching and I would be able to have rest breaks- where would i do this and who would cover my class while i went for a lie down? Luckily the Head was helpful and the situation resolved by them requesting a second Occ health interview saying they neede more detail on how best to support me. I was given a longer phased return. I think you should make a complaint to who ever runs your Occ health dept.
Hatts, I was referred to Occ Health by the school when i had been off for about 5 months. I think this is standard policy for anyone on long term sick leave as Occ health is supposed to have a supportive role (ha ha). I’m lucky that I work for a big LEA so they out source Occ Health and the unions are quite powerful too. I have a friend who works in a nearby much smaller LEA and she had to organise her own Occ Health appt and had to organise her own phased return. I’m trying to be assertive about the hours I’m doing but it is very difficult for me to tell my boss i can’t cope. Never mind I’m lucky that i’m in a job that I enjoy and have helpful colleagues. Sometimes though I feel like the man in the macmillan advert who is watching his mates play football and the voice over says “I just want my old life back”. I’ve found the lymphodema more difficult to cope with than the cancer as I felt certain that I would recover from BC but have to come to terms with a life long condition that can’t be cured. I hate having to be careful and sensible all the time!
Hi littlemrs
I didnt have a return to work interview or anything. I was posted my rehab plan as agreed through the Employee Relations & Occ Health & my boss. At no stage have they even considered my lymphoedema. To be honest I am a little scared of mentioning anything else as they have already made me sign something to say that If i cant do my job in 12 weeks I will be made redundant & my boss is really getting me down & giving me a lot of stress.
Love
Tips
Hi littlemrs / cora
I am also a teacher, Foundation Stage 3-4 year olds so quite physical but job share so work part time.
I was referred to OH by my school and in my case they were really helpful, and set out a phased return, copies of which were sent to the head. For the entire summer term I was told to leave at 3.30 (ended up nearer 4.30 my choice ) and not to attend any evening meetings so I didn’t.
Having returned to work I had two follow up appointments with OH to see how I was doing. It does seem to be very patchy as to the support you receive doesn’t it.
Tips - You can refer yourself to OH I which may be useful
Mx.
Hi Tips
It is dreadful that you are being made to feel stressed at such a difficult time; returning to work after a diagnosis of BC and subsequent treatment.
As I work in a school I am covered by the Disability Discrimination Act 2005. I would have thought it would apply to you also.
Your company should tread very carefully as you could resign and put in a claim for constructive dismissal. Although you would probably not want to go down the Industrial Tribunal route as I suspect this could be very stressful. If you were to go off sick with stress which they had caused I don’t think your company would have a leg to stand on.
I am not an expert in this field but my husband has a large work force he is responsible for and he is involved in disciplinaries and Industrial Tribunals. When I started having problems with Occupational Health he said that he thought I would have a good case for Constructive Dismissal. The doctor I saw was horrible to me and really upset me. His sole aim was to try to force me back to work even though I am in a lot of pain from radiotherapy. I had 6 months of chemo where I lost a stone in weight as I was so sick. I then had a mastectomy and lymph node clearance and then rads. I am now on Arimidex and having hot flushes every 30 minutes so this wakes me up throughout the night leaving me constantly exhausted. The OH doctor instucted me to go to my GP to obtain prescription pain killers and anti inflammatories which he said would enable me to return back to work. He also gave me incorrect medical advice. My Consultant was suitably unimpressed with this and let it be known.
My husband made a complaint to my school and to the head of OH. We have since received an apology. I have already let OH know that I will attend any other interviews with my husband as I found the last experience so stressful.
Good luck x
Bahons 2- My Consultant tells me that we have a very active lymphoedema specialist network in our area. As soon as I had my surgery he referred me even though I did not have any symptoms of lymphoedema.
Tippy I’m so sorry to hear about your Boss. I don’t understand how making your return to work can be part of a redundanct programme. In my limited experience we had to choose redundancy criteria with out identifying which staff would be caught within the net. If you go to the DWP gov site I would think you can find info about the disability act. Your HR dept will be mindful of this and |I agree that you would have grounds for unfair dismissal. If you’ve got a union contact them! I’m not a union militant but we “little” people do need someone to act as out advocate in stressful times.