Returning to work: Cancer and vocational rehabilitation.rehabilitation and employment professionals...

Report of a scoping study for Macmillan Cancer Support

February 2008

Returning to work:

Cancer and vocational rehabilitation.

The Future of Cancer Care

Executive summary 1

1. About this report 5

2. Returning to work when living with cancer: cross cutting issues 7

3. Services and support provided via the NHS 11

4. Services and support provided via Jobcentre Plus 19

5. Services and support provided viaemployers/occupational health services 24

6. Suggestions for improving rehabilitation provision 31

7. Recommendations and next steps 33

Appendix 1: List of interviewees 36

This is a Macmillan Cancer Support report written by Kristina Staley, freelance Policy Analyst.

Contents

Executive summary

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Key findings

There are few services available to support people with cancer in returning to work. There are many gaps in existingservices as well as problems with access to the services that are available:

• Although more working age cancer patients are surviving thedisease their vocational rehabilitation needs are not high onanyone’s agenda. There is poor awareness amongst health,rehabilitation and employment professionals about the long-term work-limiting effects of cancer. This inevitably impedeseffective return to work planning.

• NHS rehabilitation professionals, such as occupationaltherapists (OTs), have a narrow focus on hospital dischargeand do not have the capacity to provide vocationalrehabilitation. Other health professionals (eg cancer nursespecialists and GPs) have neither the capacity nor theoccupational health skills to support people returning to work.

• Jobcentre Plus services are mainly focused on helping peopleon incapacity benefits get back into work, and there is lessavailable for people who want to remain with their currentemployer. It is not known how well these services meet theneeds of people with cancer or how easily people with cancerare able to access these services. More research is needed.

• Occupational health (OH) services are only available topeople who work for large organisations with an in-houseOH department or for employers who are prepared to buy inthis service. There is currently little OH provision for peoplewho work for small and medium-sized employers (SMEs).

Executive Summary

Executive summary

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Introduction

1. This report summarises the findings from ascoping exercise that aimed to find out aboutthe current provision of vocationalrehabilitation services for people with cancer.It also sets out some of the steps needed toimprove provision in this key area.

2. The results are based on short telephoneinterviews with 14 professionals providingcancer care and/or vocational rehabilitation.

General overview

3. Supporting people with cancer in returning towork is becoming a much more importantissue because so many more people aresurviving cancer treatment. The numbers areexpected to increase in future.

4. Planning a return to work for people withcancer is not high on anyone’s agenda.There is a general lack of awareness of theneed for vocational rehabilitation anduncertainty about who should be providingthis service.

5. There is also a general lack of awareness ofthe long-term effects of cancer treatment.This information is essential for allstakeholders – people with cancer, healthprofessionals and employers – to plan asuccessful return to work.

6. The vocational rehabilitation needs of peoplewith cancer vary enormously depending ontheir individual circumstances. Meeting theseneeds requires different types of service. Thiscould include a multi-tiered model of supportproviding both basic and specialist advice.

7. The evidence suggests that it is helpful forpeople to start thinking about a return towork right from the beginning of their cancerjourney. This shapes people’s attitudes andbeliefs, and is crucial for successfulrehabilitation. Encouraging healthprofessionals and people with cancer todiscuss returning to work much earlier wouldrequire a change in NHS culture.

Services and support provided via the NHS

8. There is a general lack of rehabilitationservices in the UK as a result of long-termunder-investment.

9. OTs could provide vocational rehabilitation topeople with cancer, but most services arealready stretched to capacity. OTs are focusedon managing hospital discharge in order tomeet Government targets, or supportingpeople who are very ill, either during theircancer treatment or at the end of life.

10. Clinical nurse specialists provide generaladvice and support to help people withcancer manage the practical aspects of theirlives, including work. However they focus onsupporting people during treatment. They donot receive training or guidance on providingvocational rehabilitation.

11. GPs have been focused on sicknesscertification. They have neither the capacitynor occupational health skills to advise orsupport people with cancer who want toreturn to work.

Executive summary

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Services and supportprovided via Jobcentre Plus

12. Jobcentre Plus provides a wide range ofgeneral services to help people find work.The Pathways to Work programme is targetedat recipients of incapacity benefits to helpthem get back to work, but there is little onoffer to help people who become sick ordisabled to remain with their currentemployer.

13. It is not known how well Jobcentre Plusservices meet the needs of people with cancer or how many people with cancermake use of them.

Services and supportprovided via employers/occupational health services

14. Access to OH services are very limited andmainly confined to larger employers with in-house occupational health departments oremployers who can afford to buy-in these services.

15. Many small to medium sized enterprises(SMEs), cannot afford these services.Government schemes to address this shortfallhave not been successful to date, thoughfurther investment in advice and supportservices was announced at the end of 2007.

Suggestions on how toimprove vocationalrehabilitation for people with cancer

16. Interviewees were asked for their views onhow to improve vocational rehabilitation forcancer patients. Key suggestions included:

• Raising awareness amongst health andemployment professionals about therehabilitation needs of people with cancer.

• Developing new standards of cancer careand integrating vocational rehabilitationinto health and social care assessments.

• Investing in OT services to increase capacityand raise awareness of their potential tofulfil this role.

• Using existing best practice evidence todevelop and pilot new models of vocationalrehabilitation for cancer patients.

• Developing tools and practical guidance for employers and people with cancer to work together to manage a successfulreturn to work.

Executive summary

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Recommendations

17. Cancer specific occupational health tools andresources should be developed for healthprofessionals, employers and patients.

18. The Department of Health should work withMacmillan to explore how healthprofessionals can best support people inreturning to work after cancer.

19. Stronger links need to be made betweenJobcentre Plus and the NHS so that healthprofessionals are better able to signpostpatients to Department for Work andPensions (DWP) employment services.Information and referral triggers foremployment and rehabilitation should bebuilt into care pathways.

20. The lack of capacity in both vocationalrehabilitation and occupational healthservices must be urgently addressed. TheGovernment should explore ways ofimproving access to rehabilitation services forSMEs and consider whether this is bestachieved through a substantial investment inNHS rehabilitation services or whether othermodels for funding/ provision should be developed.

21. There is a need to develop and test effectivemodels for supporting people with cancer toreturn to work. Rehabilitation pilots couldhelp to determine:

• whether there is an optimal point ofintervention for people with cancer

• whether a cancer occupational healthspecialism should be developed

• whether the right NHS levers and incentivesare in place to deliver better return to work services

• whether a multi-tiered model of support isneeded with generalists (GPs, nurses)providing basic occupational health adviceand rehabilitation professionals deliveringmore specialist support.

22. Additional research is needed to collate bestpractice, review the international evidenceand look at rehabilitation provision in thedevolved health administrations in Scotland,Wales and Northern Ireland.

23. Further research is required to look at theexperiences and needs of people with cancerusing Jobcentre Plus employment services todetermine whether their specific needs arebeing met.

1. About this report

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1.1 Each year around 90,000 people of workingage are diagnosed with cancer1 and thenumbers surviving cancer are increasing. Ten year cancer survival rates have doubledin the last 30 years, with 46% of peoplediagnosed with the disease surviving for 10years or more. Returning to work hasemerged as a major challenge.

1.2 The issue of cancer ‘survivorship’ has alsocome to the fore in Department of Healthpolicy. The recently published Cancer ReformStrategy included a commitment to establisha new National Cancer Survivorship Initiativein partnership with Macmillan and othercancer charities. ‘Back to work support’ willbe a key component of this initiative. TheStrategy also recommended that‘Commissioners should make sure thatinformation for people who work and havecancer is made available to patients as soonas they are diagnosed. Advice on returning towork should be available for all patients ofworking age’.2

1.3 Getting sick and disabled people back towork has been a growing Governmentconcern in Britain for the last 15 years. InOctober 2005 the Government published across-departmental strategy aimed atimproving the health and well-being ofworking age people3. The most recent welfare

reform green paper also emphasised theneed to manage sickness absence and helpsick and disabled people get back intoemployment. Information and support arerecognised as crucial: ‘Most people whoclaim incapacity benefits expect and hope toreturn to work. The key to supporting theseaspirations is to provide tailored, flexiblesupport and information early […].’4

1.4 Recent research conducted by Macmillanrevealed that cancer patients face a range ofproblems getting back to work, but that theevidence base on what return to workinterventions are most effective is extremelyweak.5 An alarming finding was that manycancer patients are returning to work withoutany medical or rehabilitation advice orsupport. This scoping exercise was thereforecommissioned to identify:

• the points during the patient journey wheninformation, advice and services relating tovocational rehabilitation6 are provided topeople with cancer, as well as who providesthis service and how it is provided.

• how the system could be improved toensure that the right information andsupport is provided at the time whenpeople need it.


1 Department of Health, Cancer Reform Strategy, December 2007, p802 Department of Health, Cancer Reform Strategy, December 2007, pp80-813 Department for Work and Pensions, Department of Health, Health and Safety Executive, Health, work and well-being – caring for our future, October 2005.

4 Department of Work and Pensions, In work, better off, July 2007, p115 Macmillan Cancer Support, The Road to Recovery, 20076 Vocational rehabilitation refers to the wide range of services and support that enable a person with disabilities to gain employment or return to work, from counselling through to computer training.


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1.5 The focus of this scoping exercise has beenthe provision of vocational rehabilitationservices – via the NHS, Jobcentre Plus oremployers. This does not include applying forbenefits, taking early retirement orunderstanding employment rights under theDisability Discrimination Act. From the patientperspective the two main issues are:

• getting the information needed to make adecision about when to return to work

• getting the appropriate support to be able to find a new job or stay with acurrent employer.

1.6 The findings in this report are based on shorttelephone interviews with 14 professionalsproviding cancer care and/or vocationalrehabilitation. A list of the interviewees canbe found in Appendix 1.

1.7 This scoping exercise has focused on servicesin England and more work needs to be doneto explore whether the issues are the samefor all four nations.

1.8 The report is structured as follows:

Section 2: Returning to work when living with cancer: cross-cutting issuesSection 3: Services and support provided via the NHS Section 4: Services and support provided via Jobcentre PlusSection 5: Services and support provided viaemployers/occupational health7

Section 6: Suggestions for improvingrehabilitation provision Section 7: Recommendations and next steps

7 Occupational health services ensure safety in the workplace and provide health services for the workers. This includes providing support to a person to help them return to work.

2. Returning to work when living withcancer: cross cutting issues

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Vocational rehabilitation is becoming increasingly important for people with cancer

2.1 Supporting people with cancer in returning towork is becoming a much more importantissue because so many more people aresurviving cancer treatment. Every intervieweecommented on the growing importance ofthis issue, valued research being done in this area and supported Macmillan in taking a lead.

Issues specific to vocational rehabilitationfor people with cancer

2.2 The issues that people with cancer face when returning to work may be similar tothose experienced by people with otherhealth conditions (eg stigma, lack ofunderstanding by work colleagues, lowconfidence) and many of the health concernsmay be the same (fatigue, depression,cognitive problems).

‘When you look at the actual issues involvedin returning to work, they are very, verysimilar in everybody, whether you have canceror mental health problems.’ Shaw Trust Manager

2.3 However, there are areas specific to cancerrehabilitation, where knowledge of the cancerjourney is essential to developing a successfulreturn to work plan. These include:

• understanding the trajectory of the illnessand therefore knowing when is the besttime to intervene

• knowing when and how people with cancerget access to rehab services

• understanding how particular symptomshave arisen (eg as a side effect ofchemotherapy) and the likely length of their duration

• knowing the risk of late side effects ofdifferent cancer treatments eg late radiationdamage, or nerve damage caused by somechemotherapy drugs.

2.4 Many professionals who could play a key rolein supporting people with cancer back towork lack this knowledge and understanding (see below).

Meeting the vocational rehabilitation needs of people with cancer

2.5 The vocational rehabilitation needs of peoplewith cancer vary enormously depending onindividual circumstances. Factors that arelikely to have an influence include:

• the type of cancer and treatment

• response to treatment and experience ofside effects

• how long people stay off work

• the type of work they do

• whether a person with cancer wants to orcan return to the same employer orwhether they want or need to change jobs

• levels of confidence and ability to cope

• level of support from friends and family.

2. Returning to work when living with cancer: cross cutting issues


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2.6 Therefore the type of service required by eachindividual will be very different. Some peoplemight simply want some information to holda pre-return-to-work conversation with theircurrent manager. Others might needconsiderably more support to overcome anypsychological barriers; while others mayrequire more practical support eg training tobe able to apply for a new kind of job.

2.7 This means that, as one intervieweecommented ‘No one size fits all’. It may benecessary to develop a range of servicesprovided by different professionals. This could include a multi-tiered model of support with:

(a) GP practice staff, cancer doctors andclinical nurse specialists providing generalinformation/advice

(b) rehabilitation specialists ie occupationalhealth physicians and specialist nurses(occupational health professionals – OHPs)and occupational therapists (OTs), providinga more comprehensive service.

2.8 An important role for nurse specialists and/or GPs may then be in helping a persondecide whether they are ready to startvocational rehabilitation and what kind ofsupport they need:

‘The question is whether the person withcancer is up for doing it. A nurse can help theperson make a decision based on a simpleassessment: How long can you sit for? Howlong can you concentrate for? How far canyou walk? How long can you stand for?’Consultant in rehabilitation medicine

‘At what point do you put patients into rehab?Is it immediately post treatment, as soon asthey are fit enough to do it?’Network Allied Health Professional (AHP) Lead

‘The big issue is when is the right interventiontime? Because that would differ so much forso many people. So there is never a singleright time – it has to be on an individualbasis. But early intervention is of paramountimportance.’ Shaw Trust Manager

Information and understanding aboutcancer survival need to be improved

2.9 There is a general lack of awareness of thelong term side effects of cancer treatmentand a lack of detailed knowledge as to whatthese side effects are. This is an issue for allstakeholders: heath professionals, peoplewith cancer and employers.

‘GPs would value specific information aboutthe long term effects. It would be good to beable to advise on the more general things.’ GP

‘It would be good to find if there’s anevidence base - any epidemiological studiesof long term effects of cancer treatment. It’snot coming out in the OH literature…Thisinformation is very important from an OHperspective – are treating clinicians familiarwith this data?’Occupational health professional (OHP)


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‘People see that you’ve had diagnosis, surgeryand chemotherapy and six months down theline they think you should be better… there’san expectation that you should go back intowork and carry on as you did previously,when things may not be the same for yearsafter. So people with cancer need help tohave a conversation that says “Yes I am betterbut I am still feeling the effects ofchemotherapy” or we need to be involved inthose conversations.’OT

‘A lot of this is about education of HR – sothey know how cancer is treated and what toexpect during the treatment and in the longterm – how long might someone feel fatiguedafter chemotherapy?’ OHP

2.10 All professionals need a better understandingof the long term effects of cancer treatment, ifthey are to support people more effectively:

‘There is a book Fitness for Work that brieflycovers the normal treatment pattern andexpected return-to-work dates for a widerange of illnesses including cancer – it’s notwidely used outside of occupationalmedicine… I’m not sure it really covers all ofthe issues … so I’m not sure that OHPs havegot all the information they need to make athorough evaluation.’ OHP

‘As much medical information as possible is ofvalue, because you need to be able to be veryclear as to what is realistic and very oftenpeople need answers, “Why is it I’m still tirednine months down the line afterchemotherapy?”… People need a goodunderstanding of why they’re feeling like theyare in order to work constructively with thestrength they’ve got.’ OT

2.11 People with cancer also need moreinformation about managing both the shortterm and long term side effects of treatmentand to know what’s ‘normal’ in the context of work.

‘Often people go through various phases oftreatment which may take a lot of time andthey are often stressed by the process… thisdelays their return to work and leaves peoplein limbo… is it reasonable to take time off fortreatment or should they be back in work? Arethey being a bit lazy? Some clear guidancemight be quite helpful, essentially permissiongiving for what is generally consideredappropriate… people often don’t have abenchmark to compare themselves against.’


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Support needs to be offered from thebeginning of the cancer journey

2.12 The evidence suggests that it is helpful forpeople to start thinking about a return towork right from the beginning of their cancerjourney. This shapes people’s attitudes andbeliefs, and is crucial for successfulrehabilitation. Encouraging healthprofessionals and people with cancer todiscuss returning to work much earlier wouldrequire a change in NHS culture.

‘The thing about the NHS, it’s an organisationbased on labels and illness not on function. Itshould be more about what people can doand what can help them to do a bit more. Soall the people involved in cancer care needsome very good clear comms messages aboutreturn to work being about a return to normallife – some very basic information to start the conversation.’ OHP

‘The first thing is to think about employment –it helps if cancer doctors are thinking about it,as this will be communicated to the GP and other members of the Multi DisciplinaryTeam (MDT).’Consultant in RM

‘Asking people about their employment formspart of my first assessment of what peopleneed. But not everyone (amongst the patients)thinks to mention this.’ CNS

‘Someone who has got the trust of the patientneeds to say… there’s a reasonableexpectation that you’ll be able to go to workat the end of all this and we’ll provide thesupport you require during your treatment.’OHP

2.13 This would have a big impact on thelikelihood of successful rehabilitation.

‘People’s views on things are set very early –after the shock of diagnosis. This influencestheir expectation of their future work life. Forthose people who actually end up notreturning to work, my personal view is thatthe issues revolve around the psychologicalimpact of the diagnosis and their vision of thefuture…. It would be worth exploring whetherthat tallies with the medical advice [they were given].’ OHP

‘It’s essential to get people to keep returningto work in their mind to make it successful.’OT

3. Services and support provided via the NHS

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Overview

There has been long termunderinvestment in rehabilitation services in the UK

3.1 Many interviewees commented on thegeneral lack of rehabilitation services in theUK. This reflects long term under investmentand contrasts with other countries whererehabilitation has been taken more seriously.

‘Rehab specialists are pretty thinly spread.We’ve got one for our area that really looks at people post spinal injury – but itmaybe that his expertise would be moregenerally applicable.’ GP

‘Cancer rehab has been taken more seriouslyin Europe for many years…’Consultant in RM

3.2 Although there has been massive investmentin cancer services in recent years, little hasbeen invested in rehabilitation. Most of thefunding has been targeted elsewhere.

‘Rehab locally feels quite thin on the ground.I’m sure we’re not the only network to saythat. One of the reasons is that a lot of theNHS targets are stacked at the front-end ofthe patient’s journey, like hard targets forwaiting times – of course they are important – but the problem is the whole focus then ison the hard targets because they are themust-do’s. What gets left behind is therehab… So what we’ve got is more patientsgoing through the system but with about thesame level of rehab, so it’s spread thinner.’ Network AHP Lead

3.3 Specialist rehabilitation services also appearto be getting cut back.

‘Some people may need the help of anoccupational psychologist. But these teamsare being reduced massively, when actuallythey may be needed even more.’Network AHP Lead

The provision of rehabilitation servicesfor people with cancer is severely limited

3.4 Rehabilitation for people with cancer tends tobe provided by OTs or clinical nursespecialists, usually as part of a team. The OTscan be members of specialist teams (cancerMulti Disciplinary Teams (MDT) or PalliativeCare Teams) or generalists based in rehabteams in the community.

There are a few areas where it is workingwell, often with Macmillan’s support, butoverall provision seems to be patchy andunder-resourced.

‘Only some areas have cancer focused rehabteams. Where these don’t exist, people withcancer would be referred to communitytherapists, who have a very, very mixedworkload. For example with a communityphysio, out of 100 patients, only three or fourmay have diagnosis of cancer… Communitytherapist teams do have generalistknowledge, which is sometimes OK, but notalways sufficient.’ Network AHP Lead



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3.5 Vocational rehabilitation currently seems tobe a very minor part of the general service.None of the health professionals interviewedhad experienced much demand for supportin returning to work. On average they hadseen only two or three cases in the previousyear. In the case of OTs, this seems to be dueto a lack of referrals by other healthprofessionals, due to low levels of awarenessof the need for vocational rehab. In the caseof the GP, this seems to be due to the factthat the majority of his cancer patients arebeyond working age.

‘It’s very rare to address return to work issues– we saw maybe three people in the last year.’OT

‘We have one or two working age people ayear going back to work – most of our cancerpatients are over 65.’ GP

3.6 Even though helping people with cancerreturn to work had so far been a very smallpart of what people did, they were allconfident they could provide this serviceshould the need arise. The major concernwas whether they would have the capacity todeliver this service in addition to their current workload.

‘The general oncology teams include physios,OTs, speech and language therapists anddietetics. Sometimes the focus is on palliativecare but they could have a role in workrehab, if there was capacity to do it.’Network AHP Lead

‘We have a very high caseload just managingthe palliative care cases. So if we got morereferrals for vocational rehab, we may nothave the capacity – we might not be able tomeet the demand.’ OT

‘We are a small team and don’t know if wehave capacity to provide [vocationalrehabilitation]. We have not promotedourselves as we may not be able to cope with the demand.’ OT

3.7 Some people expressed concern that currentlypeople with cancer are poorly served by theNHS after their cancer treatment has finished.It seems that only the most proactive patientsare able to get the follow-up care they need.

‘Once they [cancer patients] are signed offfrom active treatment, they feel dumped. Theyhave no where to go as they don’t have thelabel of cancer anymore. That’s a lonelyplace to be… A lot of people fall through thegaps. It seems people don’t know where toturn to for follow-up care and advice – theywould need to be very proactive to find it.’ OT

‘We did help one person with an assessmentin their workplace, as he was using awheelchair and finding it hard to manoeuvre.But he had to ask for the help he needed. Hewas a senior manager so he had theconfidence to do that… the services areavailable for people who are used to pushingfor what they want. There may be many morepeople who don’t have that confidence orknow who to go to.’OT


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Health professionals are generallyunaware of the need for vocationalrehabilitation

3.8 Many people commented that currentlycancer doctors rarely discuss returning towork with their patients. Similarly OTs andrehabilitation doctors rarely consider therelevance of their services for cancer patients.

3.9 Returning to work is not always a formal partof clinical assessments for cancer patients.The NICE guidance on Improving Supportiveand Palliative Care for Adults with Cancerstates that ‘work and leisure activities’ shouldbe assessed routinely for rehabilitation.However, this is not happening in practice.

‘Health and social care professionals aren’tthinking to refer people for rehab for return to work.’ OT

3.10 It seems that assumptions are also beingmade about people’s ability to cope withreturning to work.

‘Work rehab doesn’t have a high profile – if you’re well enough to go back to work geton with it.’ OT

‘With younger patients, people [healthprofessionals] perceive they are more able toget over their chemotherapy and just expectthem to get on with it and return to work whenthey feel like it. There is a big gap there still interms of therapy to assist them in that process.’OT

‘We underestimate how much people’sconfidence is knocked by cancer.’ OT

3.11 A few of the interviewees were concerned thatsome health professionals may assume thatpeople with cancer are simply not going toreturn to work.

‘At a generalist level [amongst OTs] there is abelief that people with cancer can’t improve.’Network AHP Lead

‘The views of some GPs might be overlypessimistic. They may assume that a diagnosisof cancer should lead to retirement.’ OHP

There are gaps in health professionals’knowledge and expertise

3.12 At present there are few health professionalswith the full complement of skills andknowledge to provide specialist support topeople with cancer returning to work. Cancer specialists are not familiar with the‘world of work’:

‘Nobody is saying “Have you thought about areturn to work?” The oncologist isn’t saying itbecause it’s not their business and theywouldn’t be able to answer the questionsanyway – because the average hospital doctorknows nothing about health and safety laws,the Disability Discrimination Act (DDA) etc.’OHP

‘The problem is clinicians don’t see work astheir role. It’s a huge deficiency in medicalundergraduate and postgraduate training, inGP training and nurse training. …They don’teven know what they don’t know.’ OHP


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‘There are no rehab doctors who arespecialising in cancer rehab... nor have I everbeen approached by cancer doctors to talkabout cancer rehab.’ Consultant in RM

3.13 At the same time not all rehabilitationspecialists are familiar with the experiences ofpeople affected by cancer:

‘Rehab teams know about disability but notthe experience of people with cancer andwhat they have been through.’OT

‘I’m not sure a generalist AHP would knowabout cancer. There isn’t anyone who knowsabout both rehab and cancer.’OT

‘Often people will say “There’s nothing I cando for cancer”, but quite often it’s becausepeople don’t understand what they can do.’Network AHP Lead

Making links with vocationalrehabilitation services outside the NHS

3.14 Making formal links with vocationalrehabilitation services outside the NHS israre, even within the area of occupationaltherapy8.

‘NHS people are not familiar with servicesoutside the NHS, since this represents the nextstage where rehab finishes and where peoplemove onto.’ Network AHP Lead

‘In our patch health and social care OTs worktogether. Social care OTs look at equipmentprovision, working with housing associationsand councils to look at housing adaptations,while we try and look more holistically andoffer care related to health… But co-ordination is not standard. We were the firstservice to offer that integration.’ OT

‘I have referred people to free computer skillscourses – but I’m not an expert on this.’ OT

3.15 Many people could see the value of makingmore formal links. This could become part ofthe rehab process itself, effectively reducingpeople’s dependence on the health service.

‘The gap is between the hospital andvocational training… you’re discharged andyou’re in that big void of “hang on a second,I’ve got all these issues and now where do Igo”…There needs to be a continuous andholistic link there between the NHS, the JobCentres and the voluntary sector. So onceyou’re taken off the clinical intervention thereis a clear vocational link as part of the exitinterview.’ Shaw Trust Manager

‘I have never worked with job centres oroccupational health departments… If youknew they were the people who could help, itwould be fantastic – but they haven’t beenpart of my thoughts up ‘til now.’ CNS

8 Occupational therapy involves treatment to restore a physically disabled person's ability to perform activities of daily living such as walking,eating, drinking, dressing, toileting and bathing. This could include helping with a return to work.


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‘Like with our lung cancer rehab group, weare trying to get patients to transfer fromhealth-based rehab into leisure services. We’retrying to get patients away from reliance onhealth services, saying “This is the rest of yourlife now. You don’t need the health service,what you need is the exercise”.’ Network AHP Lead

3.16 One interviewee also emphasised theimportance of avoiding a ‘medical model’ ofvocational rehabilitation. It is important thatrehabilitation encourages people to becomeconfident and empowered to make their owndecisions. Models of care which are based onpeople finding their own ways to managetheir symptoms (eg peer support groups) aregenerally viewed to be the most effective.

‘With a catastrophic diagnosis like cancer,people quickly get slotted into a medical model that encourages reliance on it andalmost become co-dependent… the questionis how do you reduce that co-dependencywhen people are still linked in to that modelbecause they are receiving annual checks andmay still be taking drugs.’Network AHP Lead

3.17 Wherever people receive vocationalrehabilitation, it is vital that they receive consistent advice from all theprofessionals involved:

‘It’s important to have consistency of advicebetween the three important players - theconsultant oncologist, the GP and theworkplace adviser. The patient is right in themiddle of that triangle. What would be worse than what we have now is conflictingadvice. That would create so much anxietyand difficulty.’OHP

3.18 The remainder of Section 3 will consider thespecific issues relating to rehabilitationservices provided by:(a) Occupational therapists(b) Clinical nurse specialists(c) Rehabilitation programmes(d) GP practices

(a) Occupational therapists (OTs)

Vocational rehabilitation is not a priority for OTs

3.19 Government targets in recent years havechanged the focus of OT services fromoccupational therapy to more generalrehabilitation and hospital discharge. This istrue for OTs based in acute Trusts or in the community.

‘Twenty years ago OTs were there to getpeople back to work, but that’s all beenswept up in the Government’s drive to clearhospital beds. OTs tend to focus on gettingpeople back home, but not necessarily backto work.’Consultant in RM

‘There is a massive emphasis on reducing thelength of stay and ensuring patient dischargetakes place, so therefore the majority of theOTs time is spent on discharge planning asopposed to rehab… OTs are fantastic atdischarge planning – but it’s only part of theirrole. They are not fulfilling a big rehab need.’ Network AHP Lead


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‘OTs mostly focus on getting people out ofhospital in secondary care and then keepingpeople out of hospital in the community… It’svery pressured in hospitals… they have a bitmore time to address quality of life issues outof hospital… this still isn’t as specific assupporting a return to work, it’s more aboutgeneral functioning.’ OT

3.20 Within the specialist cancer teams, thepressure on OT resources means that priorityis often given to people who are most ill,either to support them through treatment orto provide palliative care.

‘We do see people that have a diagnosis andwork with them in rehab to get over theeffects of treatment. Mostly it’s seeing peoplethrough palliative chemo and radiotherapy.’OT

‘The sum of what of we do is the preventionof people coming back into hospital - thatautomatically targets people who aren’t as well.’ OT

3.21 Access to community based OTs is often viasocial services, and again priority is given topeople thought to be in greatest need.

‘They [social care OTs] have eligibility criteriato work to and really their criteria are thatthey work with substantially and permanentlydisabled people. If someone contacts socialservices and says “I’ve had cancer”, I don’tknow whether social services would see thatas a priority for their workload. I expect thatin the majority of places work rehab is notbeing offered.’ OT

Lack of understanding of the role of OTs

3.22 It seems that other health professionals arenot aware that OTs would be able to providevocational rehabilitation.

‘Other people’s perceptions of what we do are maybe why we get few referrals forwork rehab.’OT

‘A lot of the time when we refer to OTs it’s toget patients home from hospital… I personally have never thought that the OTcould be part of rehabilitating someone to getback to work.’CNS

‘It would be a battle to get others to referpeople to us for work rehab, because wewould need to raise awareness amongst otherhealth professionals as to what they need tobe doing.’OT

OT services are under-resourced

3.23 As a consequence of long term underinvestment, there are too few OTs to meetdemands and OT services are thereforeoverstretched. This makes other healthprofessionals reluctant to make referralsexcept for the most urgent cases.

‘For a long time we only had one OT for thewhole of oncology and he was always pulledfrom pillar to post. So we always thought “Ohno, I’ve got to do another referral…They werealways overloaded”.’CNS


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(b) Clinical Nurse Specialists (CNS)

3.24 Clinical nurse specialists can provide generaladvice and support to help people withcancer manage the practical aspects of theirlives, including work. They also managereferrals to rehabilitation specialists, if theseservices are locally available.

‘If there are physical issues preventing womenfrom going back to work, then I’d sit withthem and devise a list of what their currentsymptoms are and work through that withthem and the other members of the MDT…The other aspect is the psychological aspect.We’re quite lucky in that we have adesignated clinical psychologist, so if we needto do both physical and emotional aspects –we would organise a referral.’CNS

3.25 Nurse specialists may be better placed thancancer doctors to manage this aspect of care.

‘Nurse specialists tend to do the referrals. Wecan access other team members easily… Weargue the patient’s point and we can just geton and do what’s needed.’CNS

3.26 However, it seems that work is only discussedin the context of making a decision aboutwhether to continue working throughtreatment, rather than thinking aboutreturning to work once treatment has finished.

‘Often women want to know if they cancontinue to work through treatments.’CNS

3.27 It also seems that nurse specialists are notgiven much guidance or support in providingthis service.

‘It’s very vague. There’s no guide. There’snothing out there that’s set in stone that saysthis is what you can do to help support cancerpatients – rehabilitating them to go back towork. It’s solely through previous knowledgeand experience and going through it withprevious patients… Even though everyone isunique, there’s got to be some foundation workthat you can probably apply to everybody.’CNS

‘There’s probably a lot of work that people doautomatically but nothing has beenformalised at network level or nationally thatcould be of help to health professionals orhelp patients to do it for themselves.’CNS


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(c) Rehabilitation programmes

3.28 A number of vocational rehabilitationprogrammes have been developed that haveproved successful for people with other longterm conditions such as chronic fatigue andlow back pain. These combine thepsychological and physical support that aperson needs to return to work. A similarprogramme is being developed and pilotedin the Manchester Cancer Network for peoplewith cancer.

‘A group of patients would attend sessionsthree times a week for five weeks. They’llhave a whole programme around physicalexercise, knowledge of their condition,dealing with that condition and thepsychological aspects of it, aiming to get thatpositive thinking message across… Somepeople will think the physical problems aremassive barriers, “I can’t swallow, I need todrink all the time, I can’t possibly go to backto work.” But some of those people couldthink more positively around the constructivethings they could do... The danger is if wedon’t approach that psychological side, thenhundreds of people will be worried well, notgetting back to work.’ Network AHP Lead

(d) GP practices

3.29 Up until recently the main role for GPs inrelation to work has been sicknesscertification. This has created a culture wherepeople are viewed simply as either fit or unfitfor work. However, GPs could play a moresupportive role if they had a betterunderstanding of vocational rehabilitationand easy access to sources of good advice.This would mesh well with current plans toincrease GPs’ active involvement in thefollow-up care of their cancer patients.

‘GPs don’t seem to do a lot other thansuggest when’s the right time to come off sick leave. There’s not a lot of structuredadvice available.’OT

‘Certification makes things difficult…with thecertificate we have say you’re fit or not fit forwork, which makes it difficult to advisepeople. Some clear routes to reliableinformation would be helpful… Our roleshould be signposting rather than delivering –we’re not the experts.’GP

3.30 There was some doubt as to whether GPshave capacity to take on a vocationalrehabilitation role and a suggestion thatpractice nurses would be better at providingthis service.

‘The burden on GPs gets bigger and biggerevery day with everything everybody wantsthem to do and they won’t do this additionalstuff. But they do want what’s best for thepatient and so they cannot be ignoredbecause they are so influential as the patient advocate.’OHP

‘Practice nurses are a great resource. Giventhe right skills and training they would rise tothe task. They are a hugely resourceful groupand used to helping people manage otherchronic illnesses – a lot of the skills aretransferable. But they need it demonstrated tothem that they have got the skills – they needinformation resources so they can respond tothe questions that people come up with.’ GP

4. Services and support provided via Jobcentre Plus

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Overview

4.1 Jobcentre Plus provides a wide range ofgeneral services to help people find work.These are available to everyone and includetraining courses, support from a personaladviser, information about job vacancies, CVpreparation etc.

4.2 There are also specific schemes to helppeople with a disability or illness either tostay in work or find a new job. These are:

• The Job Introduction Scheme – paysemployers a subsidy for first few weeks ormonths to encourage them to employ adisabled person.

• Access to Work – provides support todisabled people and their employers to helpovercome work related obstacles. It providesemployers with grants for example to makeadaptations to premises, purchase specialistequipment and support workers. If a personis starting a new job, it can provide up to100% of the costs of adaptations, and up to80% of the costs if they are staying withtheir existing employer.

• Work Preparation – this is an individuallytailored programme designed to helppeople with a health condition or adisability return to work following a longperiod of sickness or unemployment. Ithelps people think about appropriate typesof work, work experience, new skills andconfidence building.

• Specialist advice from a DisabilityEmployment Adviser (DEA) – thesepersonal advisers specifically help peoplewho are recently disabled, or whose disabilityor health condition has deteriorated.

• New Deal for Disabled People – this is avoluntary scheme to help disabled peoplefind work with support from an experiencedJob Broker. A Job Broker helps people findsuitable work and get appropriate trainingthrough work placements etc. They alsowork with employers to overcome some oftheir prejudice and reluctance to employdisabled people.

4.3 For people who are claiming incapacitybenefits (IB) there are additional servicesavailable through the Pathways to Work (PtW)programme. One of the goals of this schemeis to help people who have been out of workfor some time to overcome any barriers thatare preventing them from returning to work.The aim is to get people off benefits and intowork as soon as possible. At the moment PtWcovers 40% of UK, but by April 2008 it willbe extended nationally.

‘The aim is to intervene at the earliest stagewhen a person is first applying for IB to getthem thinking about returning to work – if wedon’t do that, then it may make a return muchmore difficult.’ DWP PtW Manager



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4.4 The Pathways to Work Programme involvesthe following steps:

• Eight weeks after applying for IB, peopleare asked to attend a mandatory initialinterview. The Jobcentre adviser can decideto waive or defer the interview based ondiscussions with the customer and medicalevidence provided by the customer’s GP.

‘We don’t write people off, but we do needto assess whether it’s realistic for a personto attend interviews... we would talk to theperson and see how they feel about it andplan the timing of interviews to fit withpatient’s journey eg defer interviews untilafter planned treatment.’PtW Manager

‘The idea is we want these people in theoffice in the right frame of mind at the righttime. But we may need to persuade peoplewho are apprehensive – so we try to buildrapport and encourage people to come for interview.’ PtW Manager

• A screening tool is used at the initialinterview, incorporating medical andpersonal information to assess whetherpeople are at risk of being on benefit for along time ie more than a year. If peopleare screened out, they can still access theservices if they want to. If people arescreened in, they are asked to attend fivefurther interviews at monthly intervals. Thescreening tool is not applied to customerswith more severe medical conditions.Existing IB customers can also attendinterviews on a voluntary basis.

• Over the course of the five interviews,personal advisers work with individuals todevelop a tailored support package. Thisincludes access to all the general services inaddition to the PtW specific services. These are:

– Condition Management Programmes(CMP) – these are primarily aimed atthree groups of claimants: people withmild to moderate mental healthconditions, cardio-vascular problems andmusculoskeletal problems. The purpose isto help people to better manage theircondition and to get back into frame ofmind where they can consider workingagain. The programme is deliveredlocally through PCTs.

‘CMP can help with general symptoms egpain and fatigue – providing advice onidentifying triggers and taking steps toavoid those situations. People graduallylearn what they can and cannot do andwhat sort of work they can do.’DWP PtW Manager

‘We start with a health assessment,looking holistically at the person. We askthem to talk about what’s been going onwith them which is usually complex andquite emotional and not just about their condition.’CMP Manager

– Return to Work Credit – provides £40per week for the first year to ease thetransition back into work from benefits.Customers must work 16 hours or moreand earn £15,000 p.a. or less.


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– Job Grants – for people starting work eg£100 or £250 (for customers with dependentchildren) – to help with buying clothes etc.

– In work support – this is helps people stayin work and may involve telephonesupport, mentoring or sorting out access towork. It may or may not involve employers.

Do Jobcentre Plus services meet theneeds of people with cancer?

4.5 Very little is known about the use of JobcentrePlus services by people with cancer whichmakes it difficult to assess how well theservices meet their needs. However,evaluation evidence suggests that Pathways toWork works very well for a wide range ofpeople. This is because it tackles the commonbarriers to returning to work.

‘The programme is working… We analysedconditions and found it makes no differencewith return to work rate… because thecondition on the sick certificate is not what’sstopping people from returning to work. Theyget out of condition because they’re not in thedaily routine of work. Barriers build up quickly.’ CMP Manager

4.6 It is assumed that PtW works as well forpeople with cancer as it does for people withother conditions:

‘I can’t see any reason why it wouldn’t workjust as well for people affected by cancer, ifthey are in the right frame of mind and theright situation. Quite often we find the thingsthat are holding people back are more aboutthe fear of returning to work…it tends not tobe linked to their condition.’ CMP Manager

4.7 It is not known how many people with cancermake use of the PtW Programme (or JobcentrePlus services in general). Information aboutpeople’s health condition is not recordedbeyond general categories of ‘mental healthproblems’, ‘injuries’ or ‘other health conditions’.The proportion of people claiming IB who havecancer is low (about 1.5%) which suggests thatthe numbers using PtW services will also be low.

‘People with cancer tend to be a very, verylow proportion of our customers. We’ve onlyhad a handful over last few years.’CMP Manager

4.8 It is also unclear whether the timing of theinterventions in the PtW programme isappropriate for people with cancer. A personin work is entitled to 28 weeks sick pay andmay then apply for IB. This means there maybe an interval of 36 weeks before peoplereceive any advice about returning to work.There is some concern that this is too lateand people may have already started tobecome deconditioned. Most people withcancer have a strong desire to return to workbecause it signifies a return to normality.However, there may not be a single right time to intervene as it is likely to vary fromperson to person.


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4.9 One of the interviewees had carried out apilot project to evaluate the effects of earlierintervention. They worked with a wide rangeof people who had been on statutory sick payfor three months. The patients were recruitedand assessed in their local GP surgeries. Thiswas found to be more effective for the clients,but there were difficulties with engaging the GPs:

‘The sooner you can get hold of people thebetter. The pilot proved to be successful forthe people we saw, even though they werelow numbers… By seeing people earlier wefelt we were getting a quicker, more positiveresponse. So we were being more effectiveand actually capturing people before they losttheir jobs as well… but it was difficultengaging GPs. A lot of GPs don’t registerwhether people are on benefits – they haveno record. They thought it was a difficult taskto find people.’ CMP Manager

4.10 Under the Pathways Advisory Service,Jobcentre Plus advisers have been sited in anumber of GP surgeries to offer early adviceand support. In November 2007 theGovernment announced plans to treble thenumber of advisers based in GP practices.

4.11 Overall, Jobcentre Plus services tend to focus onhelping people to get back into work or to findnew work. This means there may not always bethe right kind of support available for peoplewho want to stay with their current employer.

‘Jobcentre Plus do not generally see people inwork. Most of the services are related tobenefits and helping people who are out of work.’OHP

‘If you are on sickness benefit then we’re ableto assist. If you’re employed then there is amassive gap. We can provide a Staying inWork service which may help fill that gap.’Shaw Trust Manager

4.12 The programmes designed to help peoplestay in work tend to focus on physicaladaptations to the workplace or access towork. These may not always be relevant topeople with cancer.

‘Adjustments for people with cancer may notalways be structural. A lot are about flexibilityand working hours rather than buying a newpiece of kit.’OHP

4.13 Jobcentres are unlikely to help with planninga return to work or making changes to workpatterns, although a Disability EmploymentAdviser (DEA) might provide some help withthis. This depends on the person gettingaccess to the DEA and the DEA having agood understanding of the issues faced bypeople with cancer.


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4.14 Shaw Trust is one of the providers of theGovernment’s Work Step programme thatcan be used to help people stay in work.However, there are strict criteria as to whocan access it. It is only offered to people whoare at risk of losing their jobs because oftheir condition.

‘The Work Step criteria are strict. You can self-refer or access it through a DEA. But you haveto be at the point where your employer hassaid you are about to lose your job and theyhave done everything they can reasonably do– but that’s a horrible thing to do to someonewho has just recovered from cancer… It’s afantastic programme but that [limited access]is a weakness.’ Shaw Trust Manager

4.15 In conclusion there are still many unansweredquestions as to how well Jobcentre Plusservices meet the varying needs of peoplewith cancer. These include:

• Are all people with cancer aware thatthey are eligible for support fromJobcentre Plus? How do people withcancer who don’t claim IB become awarethat they can access Jobcentre Plusservices? How could health professionalsbe encouraged to signpost people withcancer to these services?

• What proportion of people with cancerhas access to PtW? Only those peoplesuccessfully claiming IB can access the fullrange of PtW services. What proportion ofpeople with cancer does this represent?What is the best way to reach people whohave been on IB for some time and couldgain access to PtW voluntarily?

• Can people with cancer in all parts ofthe country access the services theyneed through PtW? The services providedvia the Condition ManagementProgrammes (CMPs) vary across thecountry. DWP works with PCTs to define thebest menu of services within each locality.Are the needs of people with cancer beingmet in all parts of the UK?

• Are Jobcentre Plus staff aware of theneeds of people with cancer? Given thegeneral lack of awareness of the problemsexperienced by people with cancerfollowing treatment, do Jobcentre Plusadvisers, particularly DEAs, have sufficientunderstanding of the cancer journey toreliably advise people with cancer and plantheir return to work? Do they need cancerspecific tools, training or guidance?

5. Services and support provided viaemployers/occupational health services

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Overview

5.1 Occupational health professionals (OHPs),physicians and specialist nurses, provide thevery specialised, tailored support that canhelp individuals manage and plan asuccessful return to work, most often withtheir current employer. The specialist nursesplay a very important part in designing,delivering and managing occupational healthservices. Many of the largest occupationalhealth services in the UK are OH nurse led.They often help with rehabilitation planningand follow up, and provide support to peopleat their place of work.

5.2 Large companies and organisations typicallyhave in-house occupational health (OH)departments. These are widely viewed toprovide the best standard of OH as theyusually have sufficient budgets to provide awide spectrum of services.

‘If people work for a big firm then they haveOH schemes… people working for smallorganisations are much more likely to get apoorer deal… The NHS as an employer isworking well. Their OH service has undergonea great change and they’re very clear aboutthings like a four week phased return to work.’GP

5.3 Some companies and public sectororganisations choose to buy OH servicesfrom external providers. These can work very well:

‘Shaw Trust’s Staying in Work Service workswith the client to self assess, to work out whatbarriers there are and provide a ‘third partybroker approach’ between the client andemployer. This method has been proven towork and facilitates an amicable andsuccessful return to work wherever possible.However, the Staying in Work Service is apaid for service as funding does not exist toprovide this service.’ Shaw Trust Manager

5.4 A problem with bought-in services is thatemployers are charged per intervention which tends to set limits on what services areoffered to employees.

‘It seems reasonable to buy a one-offrehabilitation plan… but if you want toprovide on-going support to an employee andmonitor the implementation of that plan, thatinvolves lots of meetings which starts to lookexpensive… now there are six or seven billsafter a period of months. So some employersthen push OHPs to do the minimum.’OHP



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5.5 More importantly not all employers canafford to provide OH services. This isparticularly true for small to medium sizedenterprises (SMEs) who don’t have access toOH departments and may not be able toafford independent advice.

‘It’s a bit of a lottery as to what kind ofservice you get when you return to work, alldepending on who you work for and howsupportive your employer is… It’s theresponsibility of the private health insurers – if you pay into an insurance scheme in theworkplace and they are affiliated to a back-to-work service then you may be in luck. Ifyou are working in a small back street garagethat’s a one-man band – then the likelihood isyou may not be able to get the help you needto stay in work.’Shaw Trust Manager

‘Access to OH is available if you want to payfor it. It would be better if OH was an NHSspecialty that GPs could refer patients into inthe same model as cancer treatment.’OHP

The role of occupational healthprofessionals

5.6 OHPs have emphasised that supportingpeople to achieve a successful return to workis a highly skilled task requiring an in-depthunderstanding of different health conditionsand the wide variety of issues facing peoplein the workplace:

‘[OHPs] use a lot of psychologicalmotivational skills. It’s not just gathering factsfor a rehab plan, but engaging with thatperson, to give encouragement and a sourceof support. How a person is handled andspoken to both have a profound effect on theoutcome…So it’s not an NHS helpline kind ofproblem – where people can work from aflow chart – it’s highly skilled – the person hasto be credible and patient has to believe “Thisis good advice I’m getting here”.’OHP

‘The effects of an illness maybe widespread,physical and psychological. Rehabprofessionals are highly skilled at sortingthese out and helping people to prioritiseaction to make progress. They are alsotrained to go and negotiate with employers.’Consultant in RM

5.7 Some OHPs are concerned that generalisthealth professionals may not have theknowledge or training to provide this kind oftailored support and that a poorly plannedreturn to work may do more harm thangood. This is an argument for developingspecialist vocational rehabilitation servicesalongside more generalised servicesproviding basic information and advice.

‘They [other health professionals] may bebasing their practice on generalist goodintentions – but have no evidence base. Whenit comes down to the nitty-gritty of work, it’sdifficult even for a specialist to know if theyhave never been in that working environment.’OHP


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‘NHS staff are unrealistic about what businessis like. They think businesses should doeverything to make something happen withoutreflecting that if they demanded that of theirown department, then their departmentcouldn’t function. So there’s a whole issue thatthey don’t necessarily understand thedifficulties employers would face.’OHP

‘The workplace isn’t there to provideintegration and sheltered employment forpeople – the reality is it’s a competitive worldand you’ve got to fight for every bit of supportavailable for people with health problems.’OHP

‘It’s better to have a more sophisticated, wellinformed strategy than one produced by anenthusiastic amateur – and avoid a blanketapproach that just says work two days, thenthree days etc… What’s needed is small stepsthat are successful for that person, if thatperson falls back, then everyone losesconfidence and it’s even more difficult to get going again.’OHP

5.8 Similarly an OHP is better placed to providethe information that employers need to makedecisions in the workplace. In the absence ofOH services, an employer can obtain medicalinformation from the employee’s doctor, butthis may not contain the information thatemployers need.

‘The HR or line manager can write to thetreating specialist to seek a medical report –with the consent of the individual – but againit’s probable that the advice won’t be asextensive as if written by an OHP. The treatingdoctor may not have an awareness of whatinformation could help that employer and maynot have knowledge of the world of work.’OHP

5.9 A problem for OHPs is that they often feelcaught between working for the employerand the employee. The interests of theemployer will often take priority.

‘It’s often a difficult role because as a healthcare professional you want be an advocatefor the patient, but your employer may wantyou to do that in a way that takes account ofthe costs to the employer.’OHP

‘Where OH services do exist their role shouldbe to indicate to the employer what isimportant to them organisationally – so whatreasonably and practically could be put in theworkplace to overcome any restrictions andover what kind of period might that berequired – that gives the employer theinformation they need to run their business.’OHP


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5.10 This also tends to create a focus on financialissues. More attention is given to decidingwhether a person is entitled to sick pay orearly retirement on the grounds of ill-health,rather than supporting a successful return to work.

‘If the financial pressure was taken away thenmore resources would be channelled intorehab and support etc… You see that in othercountries… and it would be real rehabilitation,not just finding easy jobs for people to do.’ OHP

Meeting the needs of SMEs

5.11 The Government has made some attempt atmeeting the needs of SMEs for OH advice.These include (a) Workplace Health Connect and (b) NHS Plus

(a) Workplace Health Connect

5.12 Workplace Health Connect (WHC) providesadvice on occupational health, safety andreturn to work to SMEs in England andWales. It consists of a telephone advice linewith an associated website. Employers canalso request an on-site visit from one of theWHC specialist advisers if their region is covered.

5.13 Some of the problems recognised with this service are:

• Although it is cheap, telephone advice onlyprovides the most basic support. The realdifficulties lie in turning theinformation/advice into practical action onthe shop floor, which requires more face-to-face support and site visits.

• SMEs are so busy that they rarely have timeto seek out the sources of advice that mightbe helpful to them. More time and energyneeds to be invested in advertising suchservices to make sure they are used.

• The advice is only offered to one party iethe employer, and therefore limited in its application.

(b) NHS Plus

5.14 NHS Plus is a network of about 100 OHservices in the NHS. These can vary from apart-time GP looking after a rural hospital,through to big MDTs supporting largenumbers of people. They exist primarily tolook after the 1.3 million NHS staff inEngland, but also sell their services to otheremployers, particularly SMEs. Eachdepartment has its own menu of services, butall will offer advice on return to workstrategies and adjustments to workplaces.


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5.15 Despite recent investments by the DH, NHSPlus is still not serving a large percentage ofpopulation. This is because few OH serviceshave viewed participation in NHS Plus as abenefit. Many see it as taking resources awayfrom the services for NHS employees.

‘A lot of NHS OH departments were alreadyproviding services to the community egroutine screening. But this creates a conflictaround using public money to do privatework… also the profit was not alwaysploughed back into OH services butswallowed up in the wider budget. In effectthis meant a reduction in staff time availableto NHS staff.’ OHP

5.16 Whilst there are shortfalls in OH provision,particularly for SMEs, in November 2007 theGovernment announced it will be piloting anew £8m advice and support service forsmaller businesses.

Supporting employers so they canprovide support for their employees

5.17 Employers play a critical role in determiningthe success of any vocational rehabilitation.Their support is crucial to how well a plannedreturn to work is implemented. This isparticularly true of HR staff.

‘If an HR manager is not supportive of rehab,or thinks it’s too complicated or they believethe person is just passing time until they gooff sick again – if they have no commitmentto modifying jobs then it’s difficult to effectchange… having HR line managers on boardcreates a fertile ground for rehab to work.’OHP

‘Training and education of HR managers isimportant in moving things along – they can influence other managers andcompany policies.’OHP

5.18 Support from employers needs to start rightat the beginning of an illness and continueall the way through an employee’s time offwork. This is crucial for their return to work tobe successful.

‘There’s a tendency for employers to backoff… it gets put on the ‘too difficult pile’…hiding behind ‘it would be insensitive to seethis person who’s off sick’… but that personmay be increasingly isolated from work,becoming depressed, losing an importantelement of their normality and supportnetwork, if managers aren’t even coming outto see them even occasionally…. Theremaybe an expectation that the person withcancer won’t be returning to work and that’s counterproductive… it becomes a self-fulfilling prophecy.’OHP


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5.19 Both employers and employees need to beencouraged to plan a return to work as soonas possible. This is in the interests of allparties. The longer people with cancer stayout of work, the less likely they are to returnat all, even if their cancer isn’t the mainreason for not working. Employers alsoclearly benefit if their employees spend lesstime on sick leave. But planning an earlierreturn may require a change in attitude andapproach to work.

‘The vast majority of people with cancer whoare in work will have good reasons to stay withtheir employer – because they haveemployment rights. What people generally dois wait and wait until they are 100% fit andthen go back to work. But there are manypeople who could go back earlier to adjustedwork, rather than staying off until they arecompletely better. That’s the classic GP model.’OHP

‘A planned return to work needs a discussionwith the manager. The plan may not be veryhigh tech, for example just workingafternoons. The key message is to getemployers to think like that – that people cancome back before they are 100%, ifeverything if the workplace is adjusted.’OHP

5.20 Some employers also find it very difficult toknow how to manage cancer in theworkplace or to know how to support otheremployees in response to their colleaguebeing diagnosed. Therefore employers alsoneed more support and guidance.

‘Cancer is such an emotive subject. It needs alot of thought as to how we make thisaccessible and acceptable to people. Somepeople can’t even look people with cancer inthe eye… Sometimes we find it’s themanagers who have more problems than theperson who is coming back to work.’Shaw Trust Manager

‘The employer has to balance the needs ofindividuals and the needs of colleagues – ifyou’ve only got a small team you may not beable to cope with the demand… SMEs can’tprovide as much individual support as peopleneed or as much as they would want to. It’sthose sort of issues we need to look at as astrategy. The employers need support and weneed to raise awareness with them.’ Shaw Trust Manager


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5.21 This guidance need to meet the specificneeds of employers.

‘Guidance for employers needs to bedemedicalised and concentrate on functionnot the condition.’OHP

‘SMEs are run by people who are multitalented individuals. They are the salesman,the managing director, the accountant, theH&S officer and immensely practical andinnovative. So if they get the right guidancethey will apply it.’ OHP

5.22 Some thought also needs to be given as tohow best to disseminate any guidance. Thebest route is likely to be via the employees.

‘If you run a small business the number oftimes you need to use any guidance might beonce every ten or twenty years, so the conduitis the person with cancer. That’s how you getto them because they won’t pick up onsomething unless it’s relevant to them at that moment.’ OHP

5.23 Translating advice into action may also require additional support for all parties involved:

‘It’s not just about providing good informationand encouragement but also enabling peopleto make that change. It might be quitesophisticated – coaching the employee butalso the line manager. In good casemanagement, as seen in the US or Australia,you get that triangulation between thepatient, service provider and workplace, sothey work as a unit.’OHP

6. Suggestions for improving rehabilitation provision

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6.1 All interviewees were also asked for theirviews on what could be done to improvevocational rehabilitation services for peoplewith cancer. These are summarised below.

Raise awareness and increaseunderstanding of the needs of peoplewith cancer

6.2 Planning a return to work for people withcancer is currently not very high on anyone’sagenda. Therefore there is a lot of work to bedone simply to raise levels of awarenessamongst all stakeholders and to ensure thatthe needs of people with cancer have beenwell researched and widely disseminated.

‘We may need to educate professionals andpeople affected by cancer to influence theconversations that people are having.’OHP

‘At the moment we’ve just gone through asurge of the profile being raised on end of lifecare. Maybe it’s time to shift that emphasis…maybe we need to be more aware of workrehab issues.’OT

6.3 All health professionals would benefit fromtraining and guidance on the long-termeffects of cancer treatment, the likely impacton work and the support people need toovercome these challenges.

‘Health professionals need to be trained toraise this issue with their patients and tellthem where they can go to get support.’OT

‘You could look at developing a GP practiceeducation workshop, to be presented to PCTs,to make the case for addressing this issue…you could also develop a distance-learningpack that practices could work on in their teammeetings. It would be good to sell this trainingand education to GP practices by emphasisingthe overlap with other conditions.’GP

‘OHPs would like an evidence based guide on common cancers and standardtreatments regimes including basicinformation like: how common is nausea on this form of chemotherapy? If givensymptoms and timescales OHPs can work out occupational advice.’OHP

‘It would be useful to find out exactly where there are gaps in people’sunderstanding of issues relating to function,prognosis and duration of symptoms likefatigue with different treatment regimens, asthis would indicate where there’s a need foreducational interventions.’OHP

Make returning to work an integral part of cancer care

6.4 This could be achieved by developing newstandards of care across cancer services thatintegrate vocational rehabilitation.

‘So when services are audited against thesestandards – they will check what advice hasbeen given about work.’Consultant in RM



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6.5 It would also help to make returning to work a formal part of health and social care assessments at all stages of the cancer journey.

‘It needs to happen along when you meetpeople for the first time, to find out whetherwork is something important for them – buttheir thoughts may change – so you need torevisit it at a number of points along the way.’CNS

Raise awareness and increase the use of existing services

6.6 In order for existing OT services to providevocational rehabilitation, resources wouldneed to be invested in both increasing thecapacity of the service and raising awarenessof their enhanced role. It would also beimportant to facilitate joint working betweencancer specialists and rehab specialists.

6.7 In order for people with cancer to makebetter use of the services available viaJobcentre Plus, there needs to be strongersignposting and links between the NHS andoutside services.

Learn from examples of existing goodpractice in vocational rehabilitation

6.8 It would be helpful to gather examples ofgood practice from the UK and othercountries and to find ways to share thislearning across the cancer networks.

‘You could look at the US system for exampleand ask what is applicable here, not just totransport the services wholesale, but find outwhat principles are useful in the UK.’OHP

Develop and pilot new models ofvocational rehabilitation service to reflectdifferent types of need

6.9 This could be achieved by setting up a thinktank of a wide range of stakeholdersincluding people with cancer, to work outexactly what needs to be provided alongdifferent stages of the patient journey and tothink about how best to put these services in place.

6.10 Ideas for new models of service include:

• Establishing specialist work rehabilitationtherapists to provide an independent sourceof advice and training for other healthprofessionals, employers and people with cancer.

• Siting OH nurses in GP surgeries, with onenurse shared across a number of practices.

Produce information, tools and practical guides for employers andpeople with cancer

6.11 Ideas for different types of information andtools include:

• a checklist for patients to assess themselvesand make a decision about returning towork that they could share with theiremployers or HR department.

• guidance for employers on what’s feasibleand practical to do to support employeeswith cancer returning to work. This couldalso helpfully include advice on theemployment law duties of employers.

7. Recommendations and next steps

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Recommendations to be taken forward

7.1 Cancer-specific occupational health tools andresources should be developed for healthprofessionals, employers and patients.Macmillan could lead on the development ofthese, having already developed best practiceguidance for employers.

7.2 The Department of Health and Macmillanshould work together to explore how healthprofessionals can best support people inreturning to work after cancer.

7.3 Stronger links need to be made betweenJobcentre Plus and the NHS so that healthprofessionals are better able to signpostpatients to DWP employment services.Information and referral triggers foremployment and rehabilitation should be builtinto care pathways. Further consideration isneeded of the role information prescriptionscould play in this. Return to work advice andsupport should also be a core element ofpost-treatment plans.

7.4. The lack of capacity in both vocationalrehabilitation and occupational healthservices must be urgently addressed. TheGovernment should explore ways ofimproving access to rehabilitation services forSMEs and consider whether this is bestachieved through a substantial investment inNHS rehabilitation services or whether othermodels for both funding and providingvocational rehabilitation services should alsobe developed.

7.5 Based on the findings from this exercise, itmay be necessary to develop and pilot a number of new models of vocationalrehabilitation service to reflect different types of need. A number of issues requirefurther investigation and consideration:

• whether there is an optimal point ofintervention for people with cancer

• whether a cancer occupational healthspecialism should be developed

• what role GPs and nurses should play insupporting a return to work

• whether the right NHS levers and incentives are in place to deliver betterreturn to work services


‘Getting people back to work, that is going to become a muchbigger issue than it is now - because of cancer survivorship.That’s going to increase by 30% over the next few years, so weare going to have lots and lots of people out there who havehad cancer, and the stigma that goes with that, and the anxietyproblems. We’ve got to find an approach that looks at helpingthose people...The more people who survive; the more peopleare going to need a positive rehab experience’Network AHP Lead


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It would also be worth investigating whethera multi-tiered model of support with GP practice staff, cancer doctors, clinical nursespecialists providing general information/advice and rehabilitationspecialists (OHPs and OTs) providing specialist support, is the best way to providea comprehensive service.

7.6 Additional research may be useful tostrengthen the evidence base and informthinking on possible new models of service delivery. In particular, it is worth reviewing:

• What we can learn from existing examplesof good practice.

• The experiences of occupational health and vocational rehabilitation services inother countries.

• Rehabilitation provision in the devolvedhealth administrations in Scotland, Walesand Northern Ireland.

7.7. Further research is required to look atwhether people with cancer (particularly thosestill in employment) have adequate access toreturn to work support through JobcentrePlus. This research should also look atwhether the specific needs of people withcancer using Jobcentre Plus employmentservices are being met.

Next steps - Macmillan’s Workingthrough Cancer campaign

7.8 Macmillan’s Working through Cancercampaign aims to secure fair treatment forpeople affected by cancer in the workplace.Improving occupational health andvocational rehabilitation provision for peoplewith cancer is central to meeting this aim.This scoping study will be used as a basis forcommissioning further research, developingpolicy and devising and piloting new modelsof service provision to address gaps.

7.9 Macmillan has embarked on an ambitiousprogramme of work to tackle this agenda.Over the next five years, this includes:

• Highlighting the lack of advice and supportcurrently available to people diagnosedwith cancer and their employers.

• Carrying out an extensive programme ofresearch into the issues faced by peoplewith cancer at work.

• Developing a range of support foremployers and managers and providinginformation and advice for employees tohelp them make informed decisions abouttheir health and work.


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• Encouraging employers to adopt theprinciples of Macmillan’s best practiceguidance, and to provide feedback to helpimprove the guidance.

• Encouraging people affected by cancer in the workplace to share their experiences, good or bad, to help them improve the advice and supportcurrently available.

• Establishing an expert advisory panel,consisting of employment experts,employers and opinion formers andinfluencers from the world of business,work, health and social policy to informpolicy, service development and campaigning.

• Investing significantly in developing andpiloting new models of service provision toidentify the most effective ways to supportpeople with cancer as they remain in orreturn to work.

Kristina Staley

February 2008

Kristina Staley is a freelance Policy Analyst.After gaining her PhD from CambridgeUniversity, and working as a post-doctoralfellow in the USA, she moved into health andscience policy, working in the Public HealthDepartment at The King's Fund and SussexUniversity's Science Policy Research Unit. Shehas worked on a wide range of Macmillanprojects for over five years.

Appendix 1: List of interviewees

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Many thanks to the following people whovery generously gave their time and expertiseto help with this project.

Andrea Blaney, Macmillan OT

Charles Campion-Smith, GP & Macmillan GP advisor

Sharon Cavanagh, Macmillan TherapyTeam Manager, Occupational Therapist

Clive Cook, Pathways to Work Support Manager

Andrew Frank, Chair of the British Societyof Rehabilitation Vocational RehabilitationSpecial Interest Group in VocationalRehabilitation and Consultant inRehabilitation Medicine and Rheumatology

Derek French, Pathways to Work Project Manager at the Department for Work and Pensions

Debbie Hamilton, Condition ManagementProgramme Project Manager and Clinical Lead

Julie McKenzie, Shaw Trust Manager

Emma Sweeney, Macmillan Clinical Nurse Specialist

Jackie Turnpenney, Network AHP Lead

Stuart Whitaker, Senior Lecturer inOccupational Health and SpecialistPractitioner in Occupational Health Nursing

Nerys Williams, Consultant OccupationalPhysician and Principal OccupationalPhysician at the Department for Work and Pensions

Philip Wynn, Senior Occupational Health Physician

Appendix 1: List of interviewees

© Macmillan Cancer Support May 2008 MAC11381Macmillan Cancer Support, registered charity number 261017Isle of Man charity number 604

Macmillan Cancer Support89 Albert Embankment, London SE1 7UQTel 0800 500 800CancerLine 0808 808 2020www.macmillan.org.uk

Macmillan Cancer Support improves the lives of people affected by cancer. We provide practical, medical, emotional and financial support and push for better cancer care. One in three of us will get cancer. 1.2 million of us are living with it. We are all affected by cancer. We can all help. We are Macmillan.

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