A study looking at advice and information to help people with cancer or recovering from cancer in their working lives (Scot-PAIS)

The study team found:

• that work was important to people with cancer
• there needs to be improvement in the process for providing the information and advice about returning to work
• the roles and responsibilities of all the key groups needs to be clearer

About this study
The study team invited people to take part. They included:

• people diagnosed with bladder cancer, kidney cancer or prostate cancer in the past 5 years
• heath and care providers who specialised in cancer  
• employers such as professionals and managers from large organisations

They interviewed 32 people:

• 12 people with cancer  
• 10 health workers and carers
• 10 employers from organisations 

They asked about:

• beliefs about work
• working after a diagnosis of cancer  
• experiences of the information, advice and support available
• anything that is being developed in these areas

Results
All the 3 groups identified 5 common subjects. These were:

• the importance of work 
• making decisions about treatment, cancer and work
• understanding the role and responsibilities of everyone involved
• education and training
• mapping and managing resources

The importance of work
For people with cancer, returning to work was a sign of recovering and returning to normal. Work also offered a source of social support. For some, money (financial) reasons also mattered. 

But for some people they didn’t want to go back to work. Because their diagnosis of cancer had pushed them to look at their lives and consider what was important to them. 

Managing difficult side effects of cancer treatment was a reason for not working. 

Other challenges included difficulty managing the need to pass urine or poo urgently. In part this was due to:

• work schedules 
• attitude of management and work colleagues
• design of toilets and accessing toilets 

Making decisions about treatment, cancer and work
Talk about work should happen when people first see their healthcare team to discuss treatment. These discussions should continue throughout the person’s cancer journey. 

Starting this discussion early and continuing it throughout the cancer journey helped people to make appropriate decisions about work and helped to prevent problems later.  

Some healthcare professionals believed that during appointments the patient should bring it up. 

They recognised that patient’s expectations should be sensible and realistic. This includes what they might be able to do.  

There was a wide variation about deciding when someone can remain in or return to work. It was uncertain whether the patient or the healthcare professional should decide. 

Treatment can affect someone’s functional abilities but this wasn’t a barrier to working. Healthcare professionals can give more information about treatment, for example how long might treatment be. 

Understanding the roles and responsibilities
Participants considered why the talk about cancer and work isn’t as common as it should be. It might be because health and care professionals might:

• place a lack of importance on work as part of the cancer journey, or
• lack the knowledge and confidence to discuss this, or
• not have enough time to do so 

They questioned whether an important part of the health professional’s role was to signpost patients to sources of support and advice about work. 

The thought was that providing this information was a part of the health professional’s role. But there needs to be a clearer understanding of who should be doing what and when. 

All 3 groups have a role and responsibility across the entire cancer journey about work. This is to provide: 

• information
• advice
• support 

A ‘map’ identifying different people and their roles in the system would be a good way to identify sources of help and support. This would add to what already exists and how to access them. 

Education and training
All parties involved needed more knowledge about work and a cancer diagnosis. All professionals should have training and education about working and a cancer diagnosis. And it should be relevant to their role. 

Communication training for healthcare professionals and employers would improve their confidence and skill when talking about work and cancer. 

Different ways of delivering the training would be:

• online
• seminars
• workshops
• presentations at conferences or meetings

Mapping and delivering the resources needed
Participants considered whether there were enough resources available about work and cancer. 

Many said that they weren’t aware:

• of the information available
• where to go for advice
• of available support  

There appeared to be too much printed information that said the same thing and wasn’t used. 

There was a need to improve what was available and also to develop new material. They favoured online resources but there was strong support for a variety of methods. 

Having it online meant it would be kept more up to date and be more accessible. Especially for those who live and work in remote rural areas. 

Information they thought was needed included:

• legal rights
• sick pay and other benefits
• different types of cancer and their treatment
• understanding the cancer journey
• about working after cancer
• adjusting back to work
• what the workplace can do
• where to access specialist support

Conclusion
This research offered a way to meet the information and advice needs of people with bladder, kidney or prostate cancer and their work needs.  

They believe this model can be:

• applied to other places in the country 
• used by people with other types of cancer and those who support them

Where this information comes from    
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (peer reviewed ) and published in a medical journal. The figures we quote above were provided by the research team who did the research. We have not analysed the data ourselves.