When given a diagnosis of lymphoedema, most people initially panic and worry what life will have in store for them. Many fear loss of control and independence over their daily lives and some worry
that holding down their normal job of work will prove difficult or impossible. However, like any other chronic, long-term condition, with appropriate help, advice and support, lymphoedema can be controlled and its symptoms improved thereby allowing people to live normal, healthy lives which allows them to return to work.
In the first instance, it is vital that your employer is kept in the loop about your diagnosis; raising their awareness of the condition will help them understand your individual needs and will enable them to facilitate a back to work programme for you.
So at the first opportunity, inform your employer about your newly diagnosed condition. Many people initially feel extremely self-conscious and want to hide away (put their heads in the sand!) – but by acknowledging/addressing it as soon as possible, you will become much more empowered and more easily able to deal with the situation.
The sooner your employer is involved, the sooner they can begin to plan for your return to work. Giving them verbal and written information such as the LSN fact sheets on lymphoedema (what it is and how to treat it) will be a great start. Your doctor or lymphoedema practitioner may also provide them with specific, pertinent information about your condition that may help them understand how the lymphoedema may impact on your job, so do involve them too.
More often than not, employers really want you to get back to work and will listen to your needs, engage in a positive/ understanding way, supporting and facilitating ways of how they can help. However, they will need to have an idea about how the lymphoedema affects YOU – and the job that you do. They have a responsibility to you and the other employees to ensure that the workplace is a safe environment for everyone and if your lymphoedema puts that safety at risk, then they have an obligation to try and make it safe. A full risk assessment will therefore be done to minimise/ reduce any potential problems as a result of you having lymphoedema.
After discussions with your lymphoedema practitioner and Occupational Health/Human Resources department (if appropriate), compile a list (see below for suggestions) of what needs to be addressed and arrange a one to one meeting with your employer to discuss a back to work action plan – what will help, what needs changing/adapting.
Be honest and open about your limitations, expectations, needs and requirements so that they are fully aware of what needs addressing. It’s far better to deal with it before you go back to work, than when you actually start! You will then have less to worry about when you actually do start back.
Think about:
1. How does lymphoedema affect YOU? E.g. if one or more of your limbs are swollen and heavy this may affect your posture, balance, gait and general mobility. Does this affect the job you do? What will help overcome these problems?
2. Are specific areas of the body affected? For example fingers may be swollen which may affect movement/dexterity. This may not be a problem for some, but if you are working on a computer for example, then it may. Those working with computers/keyboards etc. may find work station assessments helpful to ensure that correct posture etc. is addressed. (See resources list at the end of the article)
3. The skin on your affected limb(s) will always be vulnerable and need protecting to minimise the risk of infection (which can lead to ill health and time off work!) How will this be managed in the work place? Think about the need for:
- Washing facilities
- Prevention of trauma – protection of the limb (gloves/footwear)
- Prompt treatment for cuts/scratches (antiseptic) – aware of infection
- Antibiotics maybe necessary ASAP (are you able to keep a supply at work if recurrent infection is a problem?)
- Staff awareness and support. They cannot help and support you if they are unaware of the potential problems
4. Clothing and footwear may sometimes prove difficult – will uniforms/ protective clothing or footwear need adapting?
5. Compression garments are an essential component of your treatment plan and are worn on a daily basis to prevent oedema worsening. You may need to protect them at work
- large over gloves to cover them or larger footwear/overshoes
- provision of applicators/space etc. for easy removal and application
6. Movement is essential to stimulate drainage and should therefore be encouraged/facilitated at work as much as possible
- If the job entails sitting for long periods, getting up regularly and walking around etc. is important
- Need a balance between not enough movement and doing too much
- Try and find ways of reducing repetitive movements
- No heavy lifting/pulling/pushing if arm affected – may need to adjust this too if legs are affected
- Adjust break times (e.g. 2 x 1/2 hour instead of 1 hour lunch)
- Are there opportunities for work based gym memberships or swimming clubs? Taking a walk outside at lunch time will help if not
- Use of aids at work to facilitate movement (stress balls/ therabands/small desk static cycles) can all help (see resources guide)
- Health and Safety at work training is required to ensure that excess lifting, pushing, pulling etc. is addressed
- Use of moving foot stools can help elevate legs (but facilitate movement too); wrist supports for those with arm swelling will ensure good positioning and reduce repetitive strain injuries
7. Keeping weight within normal limits is very important – especially with a diagnosis of lymphoedema. Employers should be encouraging of healthy, well balanced diets and regular breaks. Provision of healthy snacks (fruit/veg) and fluid breaks – water fountains
– no fizzy, sugary drinks or vending machines full of chocolate!
8. On-going treatment and clinic appointments/reviews are vital in order to prevent progression/regression of the condition. Employers need to be supportive of on-going treatment, and may incorporate/ support time off/flexible working/longer breaks etc. to accommodate the appointment(s)
9. Lymphatic massage maybe part of your daily routine and essential to self-management. Can this be done at work? Are there private areas to facilitate this? Will your employer support time off/flexible-working patterns to attend appointments or support on-site domiciliary visits (if available)?
10. Psychological distress (altered body image, reaction of others, depression, anxiety, anger, resentment) is common when suffering from lymphoedema. Your employer/colleagues need to be aware of this to ensure that they are able to fully support you. Providing literature/information is helpful to raise awareness. Don’t hide your condition – try and raise awareness so that others who maybe at risk know as much about the condition as possible.
In summary, think about:
- Adjustments to the workspace/place/uniform
- Changes to working hours
- Flexible working practices (more breaks)
- Changing the way of work
- Equipment to help facilitate movement and elevation
- Phased return to work
- Adjusting performance targets
- Redistributing work
- Re-deployment if absolutely necessary.
Useful resources guide:
Some or all of the following maybe of help to you:
- NHS Choices – Advice for employees on working with a long-term medical condition (www.nhs.uk)
- LSN Information sheet – Disability and Employment
- Work base assessments can be arranged through the company’s Occupational Health department (if appropriate) or by using an independent company to perform risk assessments (e.g. www.ergo.fellowes.com). They can help with adjusting chairs, work stations and providing foot plat- forms, file sorters, document holders etc.)
- Wrist supports for those working on a computer for long periods (e.g. www.wristdonut.com)
- Ensure an appropriate risk assessment is performed to comply with company health and safety policies (e.g. moving and handling assessments to ensure your lymphoedema will not be worsened by certain tasks such as pulling, pushing, lifting etc.) www.hse.gov.uk
Should you not feel you are getting the help and support that you need from your employer, please talk to your trade union, Occupational Health department, Human Resources advisor or your local Citizens Advice Bureau for advice on what to do next. You can also get help from the disability employment advisors who you can contact through the job centre.
However, in my experience, most employers are very pro-active and value you as a member of the team, so by acknowledging each individual symptom (emotional and physical), problems related to your lymphoedema can be minimised and most people will remain a key member of the work force, which in turn enhances independence and improved quality of life.
