NCSI Work & FinanceVocational Rehabilitation

Maureen DowlingNCSI Work & Finance Project Sponsor

NCSI Work and Finance ProjectsAims • To ensure that people with

cancer are given the information, advice and support they need to return to work

• To look at how to alleviate financial hardship among people with cancer and to ensure they are given the information and advice they need about financial issues

Work and cancer: the scale of the problem

The problem• 109,000 people of working age

are diagnosed with cancer in the UK each year

• Over 700,000 people of working age in the UK have had a cancer diagnosis

Work and cancer: the scale of the problem

The solutions• We have reviewed the

evidence and identified the gaps

• We still do not know enough about the size and scale of the problem

• Macmillan has commissioned a large scale population study on work and cancer in 2010

Finance and cancer: the scale of the problem

• Research by the think tank Policy Exchange estimates productivity losses from cancer survivors being unable to undertake paid or unpaid work equated to £5.49 billion in 2008

• Economic modelling commissioned by Macmillan has also shown that if just half of breast cancer survivors who initially return to work but then leave were helped to stay in work, the economy could save £30 million every year.

Finance and cancer: the scale of the problem

• Savings would come from things like decreased benefits paid to patients, and an increase in income tax paid to the government

• Macmillan believes the economic benefit could run into millions more if all cancer patients who are able were helped to stay in work.

Problems for working age people with cancer

• Physical impact– e.g. 65% of cancer survivors say that they have to

deal with fatigue following treatment• Emotional impact

– e.g. 44% of cancer survivors told us that they had become depressed at some point during their illness

• Practical impact– e.g. taking time off for appointments, access to toilets

What is the problem?

During treatment• Most cancer patients

cannot work during treatment – early intervention is not necessarily appropriate

• Research shows that cancer patients want to work as it signifies a return to normality

End of treatment• Cancer patients are

returning to work with no medical or rehabilitation advice

• Clinicians are not advising patients about the likely impact on their ability to work

Back in work• Employers do not

know how to support staff with cancer and are not aware of their DDA duties

• Once back in work, survivors struggle to deal with the long-term effects, e.g. fatigue, depression

Work hardshipThe problem• 36% of cancer survivors who

were in work when diagnosed had to give up work completely as a result of their diagnosis.

• A further 21% had to change their roles

• Many also say their working life has deteriorated.

Work hardship

The solution• many people could remain in

or return to work if they received the advice, information or rehabilitation support they need

Financial hardshipThe problem• 92% of people with cancer

have suffered loss of income and/or higher costs

• Among under 55s, the average fall in income was 50%

• 77% of cancer patients receive no information about welfare benefits

Financial hardship

The solutions• Ensure information

prescriptions support people with financial needs

• Test tools to aid assessment of financial need and signposting to advice services

• Test the Benefits Made Clear online tool in NHS settings

Information and advice about work

The problem• Less than 50% of patients

are advised by cancer doctors about impact of treatment on their work

• Patients aren’t routinely offered information about returning to work by the NHS

Information and advice about workThe solutions• We are working with the

Cancer Action Team to ensure that information prescriptions help people returning to work

• We will be developing and testing tools to aid more effective assessment and signposting from the point of diagnosis

Employer support is variable

The problem• Only 50% of patients are

offered flexible working arrangements

• 80% of employers are unaware that cancer is covered by the DDA

Employer support is variableThe solutions• We have published an

expert workshop report on getting the message out to employers

• We have published a ‘Self-employment and cancer’ booklet

• We have produced a learning programme for trade union reps with the TUC

Vocational Rehabilitation

Definition

‘whatever helps someone with a health problem to stay at, return to or remain in work’

Vocational rehabilitation gap

Who will help me return to work?

OH limited to large

employers

NHS rehab focused on

hospital discharge

Cancer services

focused on treatment

DWP programmes focused on

benefit recipients

Vocational rehabilitation

The solutions• We have developed a vocational

rehabilitation model for cancer• We are running 7 vocational

rehabilitation pilots in 2010• We will be developing a learning

resource for Occupational Health Practitioners

Process

The NCSI Work and Finance Project Board commissioned a working group to review the provision of vocational rehabilitation for people affected by cancer, and to develop a vocational rehabilitation service model that could be piloted. The group reviewed the policy context and the existing research literature, and held a consultation workshop with people affected by cancer.It also looked at existing good practice.The outcome of their work was a Vocational Rehabilitation Strategy.

Vocational Rehabilitation StrategyThe Vocational Rehabilitation Strategy identified five principles key to improving vocational rehabilitation services for people affected by cancer. These are:

• Early intervention to provide information and support, to encourage self-management, and begin the conversation about remaining at or returning to work

• A partnership approach between key services such as health, social care and employment services

• Involvement of employers

VR strategy cont’d

• Access to specialist services that can resolve the significant barriers to work such as physical limitations, psychological distress, and loss of self esteem and confidence

• Navigation of services in a way that supports self-management and helps instil confidence in rehabilitation services amongst users

VR modelOn the basis of this review a 4 tiered model of vocational rehabilitation was proposed.The four levels are:

• Level 1 – information and support provided through electronic and printed mediums

• Level 2 – one-on-one support and signposting through telephone helplines and digital medium

• Level 3 – self management programmes accessed during or after treatment

• Level 4 – specialist vocational rehabilitation services

Vocational rehabilitation model

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Case

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• Specialist rehabilitation (OT, physiotherapist, psychological support, etc)

• Self management programmes

•Signposting•Help lines

•Face to face

• Early information and support

•For employers, professionals and

patients

EMPLOYERS

VALUES

Pilot sites remit

• Provide access to information and advice on returning to work for employees, employers, and health and social care professionals

• Signpost people to appropriate services and support • Provide access to self-management programmes to help

people with cancer better manage treatment side-effects such as pain and fatigue

• Provide specialist services such as physiotherapy and counselling for people with higher or ongoing needs.

The Shaw Trust with the Christie Hospital: Manchester

The Shaw Trust, a vocational rehabilitation charity, is working in partnership with the Christie NHS Foundation Trust, a specialist cancer hospital, to extend the Christie’s current rehabilitation service to incorporate vocational rehabilitation.

Working closely with the existing occupational therapy and physiotherapy services, a Shaw Trust employment specialist provides written and on-line resources (at level 1) through to expert individualised assessment of work-related problems with full support for patients seeking to remain in or to return to work (at level 4).

Doncaster Community Healthcare: Doncaster

This service is based at St John’s Information and Support Centre, which is co-located with St John’s Hospice in Doncaster. A Case Manager (an occupational therapist), physiotherapist, occupational therapist, complementary therapist and support worker have been recruited to work closely with the Information Facilitator, DIAL and counselling services.They will provide self-management group programmes, specialist fatigue, exercise and breathlessness management group programmes, physiotherapy, individualised and workplace assessments and support.

National Hospital for Neurology and Neurosurgery (NHNN): London

The NHNN is building on an existing vocational rehabilitation service provided for people with multiple sclerosis, and extending this to patients with brain tumours.

It is led and provided by occupational therapy and neuropsychology staff.

Assessment and interventions are delivered on an out-patient and in-patient basis, and consider mood, cognition and functional abilities in relation to work. Work specific interventions include facilitating graded return to work and symptom management.

NHS Blackburn with Darwen: Lancashire

The Lancashire Condition Management Programme (CMP) is well established and works in close partnership with the four NHS regions in the county, as well as with the 19 Jobcentre Plus offices and a network of providers of employment support. This pilot site uses components of the existing Condition Management Programme (CMP) to provide an enhanced VR service for people with cancer, and facilitates their access to the range of resources and services available across the county as well as providing specialist individualised employment support to people with cancer. The service is provided by two experienced CMP specialists, one nurse and one physiotherapist.

NHS South of Tyne and Wear: Gateshead

Similar to the pilot site in Blackburn with Darwen, the service based at NHS South of Tyne and Wear has its roots in a well-established Condition Management Programme, and is delivered by professionals (with nursing, social work and occupational therapy backgrounds) who are experienced CMP service providers.

It builds on the strong voluntary and third sector links established through CMP, offering a range of information and support services for people with cancer, as well as an outreach programme to health care professionals to raise awareness of patients’ employment-related needs.

Mount Vernon Cancer Network: Hertfordshire

This pilot site will operate across the Mount Vernon Cancer Network, which includes Hertfordshire, South Bedfordshire, and parts of Buckinghamshire, Berkshire and London. It is led by a project manager/vocational rehabilitation champion, working closely with a variety of other professionals across the Network. The role of the champion is to raise awareness of issues around cancer and employment with front line health professionals, draw on existing return to work support services, and improve referral pathways to specialist psychological and rehabilitation services. This pilot is identifying existing levels of workforce knowledge and skills, and mapping the vocational rehabilitation available in the Network in order to support further development of VR across the Cancer Network workforce.

Orbitals and the Olive Tree Information Centre: Crawley and the Gatwick

Diamond

This pilot site is a partnership between the Olive Tree Cancer Support Centre based at Crawley Hospital, and Orbitals Ltd, a private consultancy specialising in career development and coaching.

In addition to information, signposting and one-to-one coaching, the pilot has a strong focus on engaging and upskilling employers, supported by CADIA, the Gatwick Diamond Employers Association.

Evaluation

The National Hospital for Neurology and Neurosurgery has been commissioned to carry out the evaluation of the project through the pilots.

Their past experience of establishing and evaluating a vocational rehabilitation model for MS patients will assist them enormously.

They intend to use a realistic evaluation approach, which will include interviews, focus groups, questionnaires, and case studies. The use of a control group will also allow them to assess the health economic arguments for the vocational rehabilitation model.

EvaluationThe evaluation aims to investigate the benefits and costs of vocational rehabilitation for people with cancer. The specific questions addressed are:

• What are the outcomes of the vocational rehabilitation programmes, and how are these achieved?

• What are the service-users’ views of the vocational rehabilitation service received, in terms of both experience and outcome, and how does this compare with service providers’ perspectives?

• What is the cost of service delivery, and what is the cost utility?

The evaluators will assess the pilots on whether their approaches are:

Effective: Do they support people with cancer to remain in or return to work if they so choose?Personalised: Services must be focused on, and tailored to meet, the needs and goals of individual patients.Sustainable: We need clear evidence on the cost effectiveness of the model, to provide evidence for why NHS commissioners, local authorities and government agencies should fund the model long-term.Scaleable: We want to identify a version of the model that is capable of being rolled out nationally.

Early messages• 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.

• Health professionals inadvertently give patients mixed messages about work.

• 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.

Early messages• Patients are not generally knowledgeable about their

rights and responsibilities with regard to employment.

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

And it’s already having an impact:Gillian’s story

• Gillian is a science teacher in her 50’s, diagnosed with breast cancer.

• Off work since her diagnosis and surgery, Gillian’s medication had made her lethargic and nauseous, and she had a lot of back pain. She had also lost confidence in her ability to manage a physically and mentally demanding job, and did not feel able to return when her sick note was due to expire.

• Gillian accessed the Blackburn and Darwen Vocational Rehabilitation pilot, where the case-manager helped her with short term goal setting and one-to-one work rebuilding her confidence.

• The case-manager also accompanied Gillian to a meeting with her employer, and helped secure agreement to a phased return to work, a comfortable chair to replace a stool to alleviate back pain, and classroom assistance.

• Gillian will continue to meet with the Vocational Rehabilitation case-manager, but now feels confident she will be able to return to work shortly when her sick note expires

For more information

www.ncsi.org.uk/vocational-rehabilitation