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Is having CML a disability?

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Hi All
In UK those who are diagnosed with any form of cancer are protected by various Disability Discrimination Acts so in the workplace it gives workers some protection especially where the employer is required by law to make suitable adjustments for the employee if requested..
Taking the issue a bit further and broader has anyone any experience of making an application for Disability Living Allowance ,Personal Independence Payment or Attendance Allowance on the basis of having a blood cancer such as CML and/or because of the side effects that might accrue from the treatment itself (a tki).
I presume there are CML patients who do experience substantial issues that affect their day to day lives substantially including extreme anxiety and mental health conditions.
I am just wondering what the perception might be of us a CML patients (with a lifelong condition) and is it viewed as a disability by medics,government agencies and others?
Thanks,
John

Hi John
i read something recently that said 71% of PIP applications for CML are successful. the following link shows this and success rates for other disabilities
https://www.benefitsandwork.co.uk/personal-independence-payment-pip/succ...
i am 10 months into a CML diagnosis and on Imatinib. results so far are positive but the fatigue does affect my life and i feel its got worse as the months have progressed, maybe the meds have a cumulative affect. My fatigue can differ day to day but its always there to some degree. If you are going to apply for PIP its crucial to remember you dont get awarded on the condition itself but on how the condition affects you. so you really need to spell out on each question what the issues are rather than assuming that the assessor will know about your condition. assume as you are writing that they know nothing about it. I suspect the 71% who get awarded it do so due to how the fatigue affects them completing daily tasks and their mobility. its also important to spell out how often you are affected so for eg "4 days a week i feel very fatigued. on these days i am unable to prepare and cook a meal (they give guidance on what this means) as i feel dizzy when i stand up. i resort to cooking microwave meals on these days which has a detrimental affect on my diet - which is very important considering as a result of CML I have a compromised immune system etc etc ". If you apply you should also spell out the after effects of doing things so for eg you may be able to walk 200 metres to the shops but this may tire you out for hours after
i am no expert in PIP claims at all so the above is just some of what i have learnt looking into it - there are some really good guidance documents out there that i suggest you check if you are going to apply

thanks
Joey

Hi Joey
Thanks for your useful response
I came across this in a document prepared by NICE and it seems that it summarises CML quite well
"CML has a substantial impact on the quality of life
Symptoms of CML include weight loss,loss of appetite ,increased spleen size,skin rash,aneamia,sweating,drowsiness,abdominal fullness,sleep disturbances,muscle soreness,muscle cramping and memory loss.CML can have a major psychological impact and the side effect of treatment by tkis have symptoms that affect everyday life in the physical and mental contexts.CML may have a considerable impact on family life education and work .The committe concluded that CML has a substantial impact on the quality of life of patients and their families and carers. "

Looking at the product information say for imatinib or indeed any tki one can list the side effects that one might experience.Not all of the above symptoms go away when one is being treated eg inflammation of the muscles(myositis)

So basically one does need to keep a diary of a typical week and for each of these elements elaborate on how ones life is affected and the extent to which one may need support in the household from a carer/family member either unpaid or paid.
In my case I would need to apply for attendance allowance because of my age category and one has to elaborate on attention that might be needed in the day and at night especially if one applies for the higher level of award
Example :side effect of long term use of imatinib for treatment leading to non diabetic peripheral neuropathy and inability to sleep due to muscle cramping and leg restlessness leading to insomnia and need to stretch and walk at intervals to relieve cramp-incidence of falling and fear of falling.
Nocturia (getting up to pee at night at regular intervals) and diverticulitis/diarrehea as result of imatinib long term use and effect on digestive system.

Some of the issues that one may experience may be due to -
long term use of a tki leading to more severe physical and mental impacts
side effects from the drug
normal ageing issues especially for those in 70s and 80s onwards eg a high proportion of over 80s suffer diverticular conditions
co conditions which for some patients would be other cancers such as breast and prostate and treatments

Often we blame cml and our tkis for conditions and discomforts but essentially we cannot be totally sure if is cml ,the drug, ageing or other comorbities and conditions or a combination of.
Thanks for your help
Regards
John

Hi John

that's really useful. It's only in the last couple of months i have started to try and get my head around the fatigue.. Seeing what you have quoted from NICE guidelines is really helpful as i have been minimising things and just trying to "crack on" which is just my mentality and having 2 young children and working full time has not been easy (although work have allowed me to work from home and drop my hours) , so seeing this in black and white helps in the process of looking at making some changes to my life/work especially as i am only 47 so nowhere near retirement. The diary is a good idea as well. I am still trying to work out how related the fatigue is to what activities i do (which to be fair now isn't much) and how it plays out eg if i did a few hours of gardening does the fatigue come straight after, or in the days after - and how much is related to the activity and how much to the condition/ TKI's, and as you say how much maybe related to other things.

I got to the point recently with the fatigue where i asked about the possibility of a bone marrow transplant but was told that the TKI's have a far better success rate and a transplant can be fraught with complications and is a last resort. I've already forgot what it feels like not to be tired, even on good days i can still feel the fatigue just under the surface. Despite all this i do feel blessed to be in a country where i can get such effective treatment for something that upto 25 years ago was more than likely a death sentence - so i am trying to take the positive

cheers

Joey

This is quite a timely post. To answer Johns question yes CML and any form of Cancer in the UK is regarded as a disability and we have certain rights when it comes to employment such as the disability discrimination act.

If you can believe it I am actually going through this with my employer after they've failed their duty of care of me since 2019.

I've been off work for 15 months because they've put me in a really disadvantaged position with my employment. I cant go into too many details for legal reasons however after speaking with BUPA occupational health employers in the UK are obligated to make "reasonable adjustments". I am in the process of returning to work if reasonable adjustments are made. I was also informed by BUPA that our illness is covered by the equality act. Failure for an employer to provide adjustments for whatever reason you describe would put them in hot water for either disability discrimination and or unfair dismissal and or constructive dismissal. Like you I am 44 and fatigue is my biggest issue, it's the kind of fatigue that's hard to explain but can only be described as a complete flat battery mentally and physically, it comes on at certain times with no reason or ryhme. I've recently raised it with the doctor is it drives me mad so I'll either have a dosage decrease or try TFR if I stay in MR4 for one more year. I am less bothered about going TFR as that brings it's own worries but id like a good balance between being on meds and a decent quality of life.

Also many may not know but we are also entitled to a medical exemption certificate from the GP which means free prescriptions. 1 bonus to having CML haha.

All the best
Al

Hi Alex,
Yes there are two strands to my original posting in that we have the employment related issues and then the consideration over claiming for PIP/Attendance Allowance(depending on age)
On dx with CML many years ago I faced a number of issues from my then employer ;basically my line manager was not at all aware of the condition of CML nor of the legislation applying thereto -fortunately I had the help of an occupational health nurse who was in the employ of the organisation who made representations to HR and explained that an employment tribunal/court would fine the company an awful lot for any proven discriminatory actions against a cancer patient.My line manager moved overseas after a few months (basically dismissed) and I took voluntary redundancy and also retirement.
The employer should refer one to an occupational health specialist as a basic duty of care.The employer may try to attempt to retire the employee on medical grounds but the financial outcome will of course depend on the type of occupational pension scheme that one is a member of-historically small employers will not be working with robust schemes and the outcome may not be very favourable leading to hardship perhaps.
In any situation of unfair dismissal or constructive dismissal ACAS are very helpful in providing advice and making efforts to liaise on behalf of the employee.In addiition there are some very good no win no fee employment lawyers who specialise in this area of potential discrimination on health grounds and constructive dismissal-private message me to get details if you wish.
Regards
John