National Cancer Survivorship Initiative

Results so far

 First interim evaluation report – September 2010 identified five themes –

a)    Patients want attention to be paid to work issues at an early stage in their illness, and then revisited during the course of treatment and follow-up.

b)    Health professionals inadvertently give patients mixed messages about work.

c)    Line managers are a key point of contact between patients and employers, and do not necessarily have the knowledge and skill to manage a patient’s return to work effectively.

d)    Patients are not generally knowledgeable about their rights and responsibilities relating to employment.

e)    Specialist vocational rehabilitation services can predict and pre-empt problems that patients might not (yet) be aware of.

 Second interim evaluation report – June 2011 identified six key findings –

1. A three level model works better than the initially identified four level model. We propose adaptations to the NCSI Stratification Model to distinguish (i) service providers, (ii) service recipients and (iii) interventions at each of three levels of need and complexity.
2. It is useful to distinguish between ‘work support’ for people with cancer, and ‘vocational rehabilitation’. Everyone with a cancer diagnosis who is employed or who has the potential to be employed should receive support to remain in or return to work. A subset of people with cancer will have complex needs which are best met by a specialist vocational rehabilitation service where the intervention is provided by skilled vocational rehabilitation professionals.
3. We have identified a specific skill set required by individuals who provide specialist cancer vocational rehabilitation to people with complex employment needs. While there is some overlap with skills needed to deliver vocational rehabilitation in other health conditions, there are important elements that are highly specific to cancer.
4. Individuals providing specialist cancer vocational rehabilitation services are likely to need training to ensure that they have the requisite skills. No cancer-specific vocational rehabilitation training programme currently exists.
5. There is a very wide spectrum of individuals and organisations with an interest in the work support and vocational rehabilitation needs of people with cancer. While there is broad agreement on the overall aim of work support and vocational rehabilitation services in cancer – i.e. to enable people with cancer to remain in or return to work where that is their wish – there are differences in emphasis and in the priorities of the various stakeholders.
6. The term ‘vocational rehabilitation’ is not widely understood, and the needs and preferences of the particular audience being addressed should be considered when communicating about cancer work support and vocational rehabilitation.

 

Third interim evaluation report – November 2011 identified eight key findings –

1. In order to provide effective services, it is necessary to take account of the needs, roles and responsibilities of three intersecting groups:

• People affected by cancer.
• Health care professionals.
• Employers.

Across these groups, two distinct strands of support are required:

• Interventions at an individual level to provide tailored personalised support.
• Strategies implemented across populations to embed employment support into the cancer treatment pathway and on into survivorship.

We present a model for the delivery of work support services and vocational rehabilitation for people with cancer (Figure 1, page 5).

1. Support for people affected by cancer should be available at three levels (Figure 2, page 6):

Level 1:          All patients who are in work or have the potential to work should be asked about                         their employment and receive information and signposting.

Level 2:          People with specific concerns or worries should be provided with resources to                             support self-management.

Level 3:          The smaller subset of people who have complex needs should be referred to a                           vocational rehabilitation service for specialist support.

1. Support for employers is required at an organisational level, and also for individual employees.

• Information, resources, education and training on managing employees with cancer in the workplace should be available to organisations.
• Individual employees may need support from cancer vocational rehabilitation specialists to facilitate a successful return to work.

1. Health professionals who support patients through their diagnosis and treatment need a clear understanding of the extent (and limitations) of their role in responding to patients’ employment needs, and knowledge of the back-up and support services available.
2. There is significant regional variation in services available to provide employment support for people with cancer. A local scoping or mapping exercise undertaken prior to (or in the initial stages of) setting up cancer work support services would identify gaps and help to ensure the  integration of existing resources to minimise duplication.
3. Factors which contribute to successful service delivery of work support services for people with cancer include: (i) local service integration and networking; (ii) careful consideration of the geographical location of the service; and (iii) ensuring effective strategies for publicising the service and generating referrals.
4. There are number of processes that need to be taken into account when scoping, planning and delivering services. Understanding these often quite subtle mechanisms is crucial in ensuring that people get the right help at the right time. They include: (i) the challenges of early intervention; (ii) understanding patients’ short term needs against longer term consequences; (iii) asking the right questions; (iv) supporting interaction between people with cancer and their line managers; (v) providing proactive employment support; and (vi) the challenges of predicting fitness for return to work.
5. This phase of the evaluation has highlighted three areas that merit further investigation and development.

• Development of a template against which existing services and resources could be mapped prior to – or in the early stages of – setting up cancer work support services.
•  Development of a structured guideline, or the identification of criteria that would contribute to decisions about fitness for return to work following (or during) treatment.
• Identification of the knowledge, skills and attitudes required by front-line staff to support patients’ employment needs from diagnosis onwards.

 March 2012 saw the publication of a Preliminary Executive Summary ‘Thinking positively about work – a model of work support and vocational rehabilitation for people with cancer’ which highlights the key outputs of the VR Project to date. These are

• A new, robust model of work support interventions for people with cancer;
• A strategic framework which can support the planning and delivery   cancer work support services;
• An outline of the content of specialist vocational rehabilitation interventions for people with cancer; and
• A competency framework to underpin the delivery of specialist cancer vocational rehabilitation.

 The Preliminary Evaluation Summary highlights that “the key to enabling people with cancer to remain in or return to work is to embed work support into the patients pathway from diagnosis, through treatment and on into survivorship – or end of life care, where that is appropriate.  It cannot be relegated to an add-on service, offered only when problems arise.  Positive approaches towards work, tailored information delivered at the right times, access to specialist services, and effective liaison between patients, health professionals employers are all crucial” (Section 3, page 5)

 Final evaluation summary report ‘Thinking positively about work – a model of work support and vocational rehabilitation for people with cancer’– July 2012

 The NCSI Vocational Rehabilitation Project has delivered eight key outputs:

1. A strategic framework to underpin the planning and delivery of cancer work support services.
2. A new, robust model of the three levels of work support interventions required for people with cancer.
3. An indication of the costs associated with delivering specialist cancer vocational rehabilitation interventions.
4. A synthesis of the learning from the pilot sites’ experiences of setting up and delivering services.
5. Guidance for health professionals, employers and patients on achieving positive work outcomes.
6. An outline of the content of specialist cancer vocational rehabilitation interventions.
7. A competency framework to underpin the delivery of specialist cancer vocational rehabilitation interventions.
8. Recommendations for service delivery and an indication of areas for further investigation and research.

Additionally, the work of the pilot sites and the four interim evaluation reports have contributed to raising the profile of work support and vocational rehabilitation.

 For further information contact

Anil Garcia,

Vocational Rehabilitation Project Manager,

Tel 020 7091 2416

Last updated on March 26, 2013