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Over 700,000 people of working age are living with cancer across the UK right now, and around 100,000 more are diagnosed each year. People diagnosed with cancer may have to give up their job or education, change role, or reduce their working hours as a result of their diagnosis. At a time when people need to concentrate on coping with the effects of treatment, many find themselves focusing on other issues, such as their career and their ability to provide financial support for their family.
The Scottish Executive, in its 2007 Delivery Framework for Adult Rehabilitation, defined vocational rehabilitation (VR) as ‘a process that enables people with functional, psychological, developmental, cognitive and emotional impairments or health conditions to overcome barriers to accessing, maintaining or returning to employment or other useful occupation.’
More simplistically, VR can be defined as ‘whatever helps someone with a health problem to stay at, return to, and remain in work’.
VR aims to ensure that people who have been diagnosed with diseases like cancer get the information, advice and support they need to stay in, or return to the workplace, in a way that aids rather than risks ongoing recovery. It can be argued that VR should be an integral part of a clinician’s practice, especially with the vast amount of evidence that shows good work is good for health.
The foundation of VR is that being in work helps. However, it needs to be recognised that not all types of work are good for people. ‘Good work’ can improve a person’s health, both mentally and physically, by providing them with a positive identity and social inclusion. It helps people remain financially and socially independent, and can aid recovery and rehabilitation. People living with cancer say that it’s important for them to remain in or return to work after a diagnosis.
The personal case for VR is clear, but there’s an economic case to be made too. Leading think tank Policy Exchange estimates that the cost to the economy of people with cancer dropping out of employment is up to £5.3 billion, with a quarter of survivors under the age of 50 being unable to return to work, and only 3 in 10 being able to do so after the age of 50.
Public finances are currently under pressure, and the Welfare Reform Bill seeks to reform Employment and Support Allowance by ending support after 12 months. The contribution to the wider economy of people recovering from cancer, who have a stable support network to help them return to work, is significant.
In the workplace, fewer than half of the employees surveyed by YouGov were aware that they are protected by the Equality Act 2010 from the point of diagnosis. The majority of employers surveyed were similarly unaware that cancer is classed as a disability. Poor human resource (HR) practices and lack of appropriate line management training means that nearly half of the managers surveyed had not discussed sick pay entitlement, the availability of flexible working conditions, or workplace adjustments with their employees with cancer.
Combine this overall lack of awareness by employees and employers of the common side effects of cancer, both physical (nausea, pain, fatigue, reduced mobility, bowel and bladder problems) and mental (cognitive difficulties, depression, loss of confidence, stress), and it’s easy to understand why so many people need to stop work during their treatment.
On the clinical side, occupational health doctors (contracted by employers) generally recognise that there is a problem, but often feel line managers refer employees with cancer too late for their help to be most effective. And in many cases, the person with cancer doesn’t feel they’re well-informed about the impact their diagnosis will have on their job and career.
With the rate of survivorship increasing by nearly 4% a year, this is a problem that is apparent now and will only continue to grow, with knock-on societal and economic effects.
Research by Macmillan identified the real risks a diagnosis presents to continued employment. People affected by cancer told Macmillan that they found it difficult to continue in work during and after treatment. Following the research, Macmillan and the National Cancer Survivorship Initiative (NCSI) invited proposals for piloting new approaches to VR for people newly-diagnosed with cancer.
The project consists of seven pilots trialling new models of back-to-work support services (see page vi). Each pilot is based on five key principles:
- Early intervention.
- Joining up health, social care and employment services.
- Making sure employers are involved.
- Facilitating access to specialist services for those with more significant barriers to returning to work.
- Navigating services in a way that promotes self-management.
The pilots aren’t new in terms of what they are trying to achieve, rather they build on existing local services, develop and facilitate new partnerships, fill service gaps and provide case management for patients.
The Shaw Trust’s pilot is based at Christie Hospital, Manchester. Shaw Trust is one of the largest third sector providers of employment services in the UK. Last year, it helped over 77,000 disabled and disadvantaged people on their route back to work. The pilot aims to ensure that people with cancer, through the provision of information, advice and support, have the help they need to return to the workplace and the normality this brings.
The service involves a Shaw Trust vocational adviser helping patients across three levels of support:
Level one involves everyone with a cancer diagnosis who is employed or who has the potential to be employed. Many people at this relatively early stage may not identify future difficulties or think they will have problems, which may of course be the case. But at this level, our work involves promoting positive messages about work, keeping it on the agenda and also providing information about the possible impact of a diagnosis on work. We provide information about self-management support programmes and other types of support, as well as how to get in touch with professionals for further advice.
At level two we see people who have specific questions or concerns but who, with the right information and support, will be able to resolve these issues themselves, ie self-manage. At this level, the pilot provides specialised, tailored information and support that service users are able to take forward and implement themselves. The pilot also provides signposting to other services and providers. These services provide contact through face-to-face, phone or email interaction with professionals, typically in short bursts.
Level three includes people who have complex problems that require specialist help from qualified professionals. At this level, the pilot provides specialist VR interventions. These could range from making a detailed assessment of the patient and their situation at work (eg responsibilities, level of physical activity, duration of core hours, whether there is any provision for flexible working); ergonomic assessments; liaison with employers; modifications to the work environment; and teaching strategies for managing fatigue, mobility and cognitive problems.
Early intervention works
It’s crass to say that early intervention can be the ‘silver bullet’. But accepting that a cancer diagnosis will in all likelihood affect a person’s job, and then talking about it with doctors and employers, breaks down barriers and allows support to be given from diagnosis to a return-to-work activity.
Too often, cancer services dealing with HR issues in the workplace can lack coherence or join-up with other services offered by practitioners. A patient-centred approach brings services together to help the patient and enable support to be given to employer and employee alike.
It’s all about steps
A return-to-work should be managed and supported. Consider how voluntary work activity could be used as a staging point in the journey back to work.
It’s become clear from working with people with cancer that there is a pressing need to embed new vocational learning within the region and beyond. We know that the vocational aspect of cancer rehabilitation is often missing from current support options. This causes frustration, especially when the opportunity to access such provision addresses so many of the issues found within a typical case load.
People with cancer want information about work early. Advice and support at an early stage can help people return to, or retain employment, which can aid their recovery. But they’re also often unaware of their rights as employees. Empowering our clients with information and advice helps them make informed decisions about their circumstances.
From Shaw Trust’s perspective, we’ve had to understand that employers often need support too. Our employer engagement teams work hard to meet the needs of local employers and help them work through and resolve any issues they may be facing.
Line managers often aren’t equipped with the necessary skills and knowledge to manage staff with cancer. VR services provide invaluable guidance to employers, which can help avoid stress, conflict and possibly employment tribunals.
Angela had been an office manager at a school in Greater Manchester for 23 years, when in September 2009, she was diagnosed with breast cancer. She was forced to take 18 months off work, undergoing a double mastectomy, lymph node removal and months of chemotherapy and radiotherapy.
‘I was told [by my employer] that as I wasn’t fit to return to work immediately and had been absent for 12 months, I could now be dismissed. Months of meetings with union officials and managers led nowhere. I asked about options such as working part-time, but was told there were none. I couldn’t believe that after 23 years’ service, my career could be finished through no fault of my own.
'I tried to go back on four hours a day but I got so tired. I only lasted three days. There was no compassion, no support. I still feel like I’ve got so much to offer though.’
We have worked with Angela now for nearly 12 months, initially working to increase her confidence and self-esteem, then supporting her in all her return-to-work interviews and negotiating with her employer.
After she returned to work and it didn’t work out, we have been helping her get the best result with regards to her pension/redundancy. We’re still working with her, and when she’s ready to look for work, our support will move with her.
Case study – Mohammed, 23
Mohammed was 20 when he was diagnosed with leukaemia. At the time, he was hoping to return to education after working for a couple of years. He wanted to study sociology with a view to working in social work.
Mohammed’s chemotherapy treatment takes three years – one year intense followed by two years’ maintenance. He was hoping to be finished by November 2011. He developed pancreatitis and mucositis from the chemotherapy and couldn’t eat or take painkillers. This left him bed-bound for three weeks and he had to take intravenous food supplements.
Mohammed is currently volunteering at Positive Steps in Oldham, working one day a week on a project that helps young carers aged 5–16. He wants to increase his hours as his health continues to improve.
‘I was shocked at my diagnosis and found it hard to come to terms with. I didn’t know much about leukaemia back then. When I was diagnosed with cancer all my independence was taken away – I couldn’t even make toast!
‘During my recovery, my Shaw Trust adviser helped me write my CV properly. I was concerned, as I have a big work gap on my CV and I didn’t know if I should mention that I had cancer. And I was scared I physically couldn’t work. He advised me to go back to work part-time or on a voluntary basis to ease myself in, and helped to get me my placement at Positive Steps.
‘I now feel healthy, happy and independent. I can’t believe the freedom of where I am now compared with three years ago. I’m hoping to get into helping young carers more. I didn’t know about them before and it’s nice to help them be a kid again.’
Doncaster Community Healthcare
This pilot had a strong focus on self-management programmes. Support options included work simulation environments and workplace assessments.
National Hospital for Neurology and Neurosurgery, London
This pilot focused on people with brain and spinal tumours. It builds on a VR model the hospital previously developed and tested for people with multiple sclerosis. Read more about the hospital|.
NHS Blackburn with Darwen, Lancashire
This pilot used the services established by the Condition Management Programme to provide a three-month programme with ongoing support for six months. The team worked with specialist cancer services and had oncology clinics across the county.*
NHS South of Tyne and Wear
This pilot was led by a Macmillan cancer nurse specialist and a condition management team lead. The service was open to individuals of working age diagnosed with breast, colorectal or testicular cancer. The service conducted a skills and knowledge audit of clinical nurse specialists and identified training needs in work support/VR.*
Mount Vernon Cancer
Network, Hertfordshire, Luton and South Bedfordshire This pilot developed the capacity of the VR network by mapping existing services and sources of support. The project manager identified existing levels of workforce knowledge, skills, and devised training programmes that were rolled out across the network, along with an amended holistic assessment questionnaire.
Orbitals Ltd and the Olive Tree Cancer Support Centre, Sussex
The pilot focused on engaging and upskilling employers, supported by Cadia – the Gatwick Diamond Employers Association. It provided a service in an area of high deprivation and used trained volunteers from a variety of backgrounds. The service is continuing with voluntary support.
Macmillan is also supporting the development of VR services in Wales, Scotland and Northern Ireland. For more information, email Lyn Bruce|.
* These two pilots were based on the Condition Management Programme. This government-funded programme was closed on 31 March 2011 so it was no longer feasible for the pilot sites to continue.
Please see the references| section.
Richard has worked as a case manager at Christie Hospital since June 2010. Prior to this, he worked for eight years with clients with various disabilities to help get them into work, and provided ongoing support to help them sustain their roles. He also spent 10 years working in commercial recruitment. Email Richard|.
Part two - Evidence base|
Part three - Policy |
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