Support for cancer patients
MRC Research Fellow and General Practitioner, University of Southampton, UK
E-mail: chantal.simon{at}oxfordjournals.org
A diagnosis of cancer can be devastating for both the patient and his or her family. Cancer can arise out of the blue and often affects people who have been fit and healthy until diagnosis. It may affect young people as well as the elderly. Patients and families have support needs that may vary over time and according to the progress of their disease and treatment. Try to tailor information and advice to the individual's needs and continue to provide support throughout the patient's illness. This article is intended as a broad guide to the types of support available for cancer patients in the UK. It is not intended as a comprehensive reference and cannot include the many excellent local services available in different parts of the UK for such patients.
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The GP curriculum and support for patients with cancer |
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As a GP, it is important to attend to the full range of physical, psychological, social and spiritual needs of patients with cancer and their carers. To do this you must:
- Appreciate the social and psychological impact of cancer on the patient
- Appreciate the social and psychological impact of cancer on the patient's family, friends, dependants and employers
- Know, at least in outline, about the social benefits and services available to patients.
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Information about cancer |
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Patients often want to have more information about their cancer to enable them to better understand treatment decisions and prognostic information. Relatives may also want more information to enable them to support the patient, know what to expect in terms of treatment and prognosis, and make plans for the future.
There are several ways in which information about cancer can be obtained. Many general cancer charities, such as Cancerbackup (http://www.cancerbackup.org.uk) or Cancer Research UK (http://www.cancerhelp.org.uk), provide excellent leaflets on specific types of cancer and cancer treatment, and their websites also contain a wealth of other information. Macmillan Cancer Support also has information centres that provide help to people with cancer and their families. The locations of these centres are available on their website (http://www.macmillan.org.uk).
Cancer-specific charities such as Pancreatic Cancer UK (http://www.pancreaticcancer.org.uk) are also good sources of information. Other cancer-specific organizations are listed on the Cancer Research UK website (http://www.cancerhelp.org.uk) or the Macmillan Cancer Support website.
Cancer courses
Cancer courses are run all over the UK for patients and carers. The expert patients' scheme runs courses for patients with any long-term illness and for their carers. Details of local courses can be found on websites http://www.expertpatients.co.uk (England) or http://www.eppwales.org (Wales). Macmillan Cancer Support provides a 6-week ‘Living with cancer’ course run by tutors who have had cancer themselves. Sessions are held a week apart and participants are educated about the ways of managing symptoms and side effects of treatment, including relaxation techniques and visualization exercises. Breast Cancer Care (http://www.breastcancercare.org.uk) also offers courses for people with primary and secondary breast cancer.
Specialist nurses
Many cancer or surgical units have specialist nurses whom patients can contact directly with problems or queries. Good examples are breast care nurses, stoma care nurses and cancer support nurses. In addition some charities, such as Macmillan Cancer Support, provide specialist nurses who can be contacted for information and support.
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Helplines, support groups and online fora |
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Being told that you have cancer, or that your cancer has returned, can leave you feeling shocked, upset and very isolated. There are so many questions to be answered and so many feelings to deal with. Talking to someone else at such times may help, but close family and friends are not always available, nor the best people to talk to, as they may also be feeling shocked and upset themselves.
Helplines
Helplines are one option. Many charities provide helplines for cancer patients. These may be manned by volunteers or by trained nurses who can answer questions. Box 1 provides contact details for cancer support organizations.
| Box 1. Carer support organizations General cancer support organizations Cancer Backup—Tel: 0808 800 1234, website: http://www.cancerbackup.org.uk Macmillan Cancer Support—Tel: 0808 808 2020 (Youthline: 0808 808 0800), website: http://www.macmillan.org.uk CancerHelp UK—Tel: 0808 800 4040, website: http://www.cancerhelp.org.uk Specific cancer support organizations Breakthrough Breast Cancer—Tel: 08080 100 200, website: http://www.breakthrough.org.uk Breast Cancer Care—Tel: 0808 800 6000, website: http://www.breastcancercare.org.uk Breast Cancer Campaign website: http://www.bcc-uk.org Against Breast Cancer website: http://www.aabc.org.uk Beating Bowel Cancer—Tel: 020 8892 5256, website: http://www.bowelcancer.org Bowel Cancer UK—Tel: 020 7381 9711, website: http://www.bowelcanceruk.org.uk Mouth Cancer Foundation website: http://www.rdoc.org.uk Leukaemia Research Fund—Tel: 020 7405 0101, website: http://www.lrf.org.uk Leukaemia Care website: http://www.leukaemiacare.org Children with Leukaemia—Tel: 020 7404 0808, website: http://www.leukaemia.org.uk CLIC Sargent—Tel: 0800 197 0068, website: http://www.clicsargent.org.uk The Roy Castle Lung Cancer Foundation—Tel: 0800 358 7200, website: http://www.roycastle.org Lymphoma Association—Tel: 0808 808 5555, website: http://www.lymphoma.org.uk Oesophageal Patients’ Association website: http://www.opa.org.uk Ovacome—Tel: 020 7380 9589, website: http://www.ovacome.org.uk Pancreatic cancer UK website: http://www.pancreaticcancer.org.uk Prostate Cancer Charity—Tel: 0800 074 8383, website: http://www.prostate-cancer.org.uk Sarcoma UK website: http://www.sarcoma-uk.org British Thyroid Foundation website: http://www.btf-thyroid.org
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Support groups
Support groups are another option. Cancer patients benefit from the support they gain from talking to other people coping with the same challenges as they have to face. Carers can also benefit through contact with carers of other cancer patients via the group.
The activities in support groups can vary a great deal. Some hold meetings, produce a newsletter and have social activities, talks by invited speakers and/or offer complementary therapies. Some consist of a few people who meet regularly in someone's front room. Others are much larger and may have premises or a drop-in centre. Most groups are free, but some may charge or ask for donations to cover their expenses. Most cancer support groups cater for patients with any sort of cancer, though cancer-specific groups do exist, as do groups for cancer patients with specific problems—for example laryngectomy clubs. Access to the services of support groups varies according to where the patient lives and the groups available in that area. Details of local cancer groups can be found on the Macmillan Cancer Support website (http://www.macmillan.org.uk) and it is worth having a look to find out what groups are available in your area.
Online fora
Online fora are another option that can be helpful. They are often more convenient for patients with cancer who are still working and cannot attend support groups; they can help patients who are too ill to get out to support groups; the anonymity provided by the Internet may enable patients to ask difficult questions or questions that they think are ‘silly’; and, they allow patients from a much broader area (often internationally) to communicate with each other—this can be particularly useful for patients with rarer cancers and where there are geographical differences in policy or management.
The Cancer Forums website is a well-run site that has a general section and sections relating to different types of cancer (http://www.cancerforums.net). Other general fora are the My Wavelength website (http://www.mywavelength.com) and the Discuss Cancer website (http://www.discusscancer.org). Specific cancer support organizations may also have their own fora, for example the prostate cancer charity runs a forum for patients with prostate cancer in the UK (http://www.prostate-cancer.org.uk).
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Financial help |
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Having cancer can be expensive in many ways—the patient may need to give up work, prescriptions costs soon mount up, special diets may add to grocery costs and there may be additional childcare costs or costs of travel to hospital when treatment is needed. Further information for patients about benefits and financial help available can be obtained from the sources listed in Box 2.
| Box 2. Further information about benefits Department for Work and Pensions website: http://www.dwp.gov.uk Jobcentre plus website: http://www.jobcentreplus.gov.uk The Pensions service website: http://www.thepensionservice.gov.uk The Tax Office website: http://www.hmrc.gov.uk(Tel: 0845 300 3900) Disability and carers service website: http://www.direct.gov.uk Citizen's Advice Bureau website: http://www.adviceguide.org.uk Benefits enquiry line for sick and disabled people and their carers Tel: 0800 882 200 (Tel: 0800 220 674 in Northern Ireland)
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Most benefits are payable from the date an enquiry is made—not from the date of diagnosis. Advise patients not to delay making enquiries about benefits.
Benefits for people unable to work
Patients unable to work due to sickness or disability should be able to claim either statutory sick pay (SSP) or incapacity benefit. SSP is paid for the first 28 weeks of illness by the patient's employer. It is payable to employees aged over 16 years and under 65 years unable to work for 4 days or more as long as they are earning more than the National Insurance lower earnings limit. Patients may self-certify for the first week and after that time require a Med3 certificate from their GP or hospital doctor. Rates of SSP are changed regularly but have been £72.55 per week since April 2007; however, many employers provide more generous sick pay packages.
Self-employed patients and other patients who are unable to work, but do not qualify for SSP, may be able to claim Incapacity Benefit instead of SSP if they are unable to work. Patients are eligible for Incapacity Benefit if they are under the age of 60 years, have paid sufficient National Insurance contributions (unless the patient is aged under 20 years) and are unable to work. Certification of inability to work is done by the patient's GP or hospital doctor on form Med3 for the first 28 weeks as for SSP. As for SSP, rates are changed regularly, but the current rate of Incapacity Benefit for the first 28 weeks of incapacity is currently £61.35 per week. Incapacity Benefit can be claimed by sending form SC1 (that can be obtained from Jobcentre plus offices, hospitals or doctors surgeries) to the local benefits office or Jobcentre Plus office.
After 28 weeks incapacity, both patients claiming SSP and those claiming Incapacity Benefit must undergo a Personal Capability Assessment. Claimants are sent form IB50 to complete themselves. The patient's GP may be asked for a factual report or Med4 certificate. The patient may be called for a medical examination; however, the diagnosis of a terminal illness exempts the patient from medical examination. If a decision is reached that the patient is not capable of any work (not just his or her own job), then Incapacity Benefit is paid at the higher rate of £72.55 per week from week 29 to week 52, then at £81.35 per week from week 53 onwards.
Benefits for people with low income
Patients with low income, who are not eligible for either SSP or incapacity benefit, may be entitled to Income Support (IS). To claim, patients must be over 18 years old (16 years in some circumstances) have a low income, have less than £8000 in savings (£16,000 if living in residential care) and be doing less than 16 hours of paid work per week. The patient's partner must also be doing paid work for less than 24 hours a week. The amount received depends on individual circumstances. In England, Scotland and Wales, claims may be made by telephone (Tel: 0800 055 6688) or on form A1 from the Jobcentre Plus website (http://www.jobcentreplus.gov.uk). In Northern Ireland, a claim form can be obtained from website http://www.dsdni.gov.uk/index/ssa.htm.
People who are working and have low income may be entitled to tax credits (working and child tax credit). These are complex and depend on many factors, for example whether the claimant has children, whether the claimant has a disability and how many hours the claimant works. Tax credits are administered by HM Customs and Revenue. To apply for an application form, advise patients to contact the tax credit helpline (Tel: 0845 300 3900). Pensioners on low income may be entitled to pension credit. This can be claimed on form PC1 available in England, Wales and Scotland by calling Tel: 0800 99 124 or from the Pension Service website (http://www.thepensionservice.gov.uk). In Northern Ireland, call Tel: 0808 100 6165 or download the form from website: http://www.dsdni.gov.uk.
Other benefits that may be available for patients on low income are as follows:
- Housing benefit—for people in rented accommodation on low income and with less than £16,000 in savings—claim via the local authority
- Council tax benefit—for people on low income—claim via the local authority
- Social fund payments—crisis loans, budgeting loans (for people on low income to buy large purchases), funeral payments, cold weather payments, maternity grants and community care grants. Patients should claim via local Jobcentre plus offices. The community care grant is discussed in more detail below.
Benefits for people with illness or disability
Disability Living Allowance (DLA) and Attendance Allowance (AA) are the major benefits payable to people who have chronic illness or disability. Neither is means tested and both are payable if the patient meets the eligibility criteria regardless of income. There is no need to actually receive help to apply. Claims can be made by telephone (Tel: 0800 88 22 00), on a form that can be collected from post offices and local benefit offices, or online (at http://www.direct.gov.uk/disability in England, Wales or Scotland, and at http://www.dsdni.gov.uk/index/ssa.htm in Northern Ireland).
If a patient has a terminal illness (defined as an expectation that a patient will not live for >6 months), then claims should be made under ‘Special rules’ and the patient's GP or hospital doctor should complete form DS1500 to provide clinical information to support the patient's application. A fee can be claimed from the benefits authorities by the doctor completing the DS1500 form. Under special rules, claims are processed much faster and the highest care rate is automatically awarded.
DLA is payable to patients under the age of 65 who have had an illness or disability affecting daily activities for more than 3 months that is expected to last at least 6 months. Claims under special rules can be made immediately without waiting for 3 months. There are two components to the DLA—the mobility component and the care component. Within each of these there are several different levels of payment. These are summarized in Table 1.
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AA is payable to patients aged 65 and over who are not permanently in hospital or accommodation funded by the local authority and have had an illness or disability affecting daily activities for more than 3 months that is expected to last at least 6 months. As for DLA, claims under special rules can be made immediately without waiting for 3 months. AA can be paid at a lower or higher rate depending on the degree of incapacity of the patient. These are summarized in Table 1.
Other payments that may help people with a chronic illness or disability are as follows:
- ‘Community care grants’ are for people receiving IS or pension credit to enable the applicant or another family member to come home into the community or remain living in the community. It can also be used to pay travel costs for family members to visit the cancer patient in hospital, or to ease exceptional pressure on the applicant or another family member—a good example would be to pay for some child care to take the pressure off a patient with cancer. The minimum amount that can be claimed is £30 and there is no maximum amount. Claims should be made on form SF300 available from local benefits offices. Forms can also be downloaded from website http://www.jobcentreplus.gov.uk (England, Wales or Scotland) or http://www.dsdni.gov.uk/index/ssa.htm (Northern Ireland)
- ‘Council tax reductions’ may be made if someone living in home is substantially disabled—especially if a room (apart from a toilet) is specifically used for that person. A good example would be if a bed was brought into a downstairs room to accommodate a patient with cancer returning home. Apply in writing to the local authority
- ‘Compensation and additional benefits’ may be payable for patients with cancers, such as mesothelioma, which constitute industrial illness. Further information is available from the Citizen's Advice Bureau website: http://www.adviceguide.org.uk.
Help with health costs
Patients with cancer may be able to get help with prescription costs and the cost of purchasing a wig. They may also be able to obtain help for travel expenses for NHS treatment.
Patients are entitled to free prescriptions and NHS wigs if they:
- Have low income—there is automatic entitlement if a patient is on income support, income-based Jobseeker's Allowance or the guarantee credit of Pension Credit. If patients are getting Working Tax Credit and/or Child Tax Credit, there might be entitlement to free prescriptions, depending on income
- are under 16 years (or aged 16,17 or 18 years and in full-time education), or aged over 60 years
- hold a valid medical exemption certificate
- live in Wales, whatever their age or income
Patients can get essential travel costs paid to and from hospital for NHS treatment, if they are getting income support, income-based Jobseeker's Allowance or the guarantee credit of Pension Credit. This also applies to the costs of travel for someone to accompany the patient to hospital if the patient is unable to travel alone for medical reasons. Other patients on low income (for example those getting Working Tax Credit and/or Child Tax Credit) may also be entitled to help, depending on their precise income. Refunds of travel costs can be claimed by filling in form HC5 and giving it to the hospital. In some cases, it is possible to ask for advance payment, alternatively a crisis loan from the social fund can be used to pay for travel costs until these costs are refunded.
Value Added Tax exemption
Value Added Tax (VAT) law provides relief for people who are ‘chronically sick or disabled’. ‘Chronic’ is taken to mean lasting a long time (though the period of time is not stated) and therefore excludes injuries of a temporary nature but does include cancer in most instances. Relief is not restricted to those who claim DLA or AA. Disabled people should not incur VAT when buying items for their domestic or personal use designed to help them with their disability or when having equipment adapted so they would be able to use it. Examples of exempt items include the following:
- some medical and surgical appliances, such as wigs or braces;
- certain adjustable beds, chair lifts, hoists, lifts and sanitary devices;
- emergency alarm call systems;
- specifically designed, or adapted, vehicles, and
- other equipment and appliances designed solely for disabled persons.
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Blue badges and road tax exemption |
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Anyone over the age of 2 years can apply for a blue badge if they receive the higher rate of the mobility component of DLA, are registered blind, have significant upper limb disability (drivers only) or permanent and substantial difficulty walking. Children under 2 years may apply if they need to stay close to the car for emergency medical treatment, or bulky equipment for their use needs to be transported. In most circumstances, the disabled person does not have to be the driver. The badge should not be used if the disabled person is not in the car. Applications are made through local social services departments.
Blue badges entitle the holders to park in specified disabled spaces, free of charge or without time limit at parking metres or other places where waiting is limited, or on single yellow lines for up to 3 hours (no time limit in Scotland). A map of parking places where the blue badge scheme applies can be found at website http://www.direct.gov.uk/bluebadgemap. Further information about the scheme can be found on website http://www.dft.gov.uk.
Road tax exemption is available for people who receive the higher rate mobility component of DLA or any person who regularly drives for a disabled person. It should be received automatically.
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Carers |
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Carers are vitally important to the well being of cancer patients in the community. Most are relatives or friends of the person being cared for. There is good evidence their carer's health suffers as a result of caring—52% report treatment for a stress-related illness since becoming a carer and 51% report being physically injured as a result of caring. GPs and primary care teams are often the first point of access for any help needed and 88% of carers have seen their GP in the past 12 months. Three Quality and Outcome Framework points are available for practices that have a protocol for the identification of carers and a mechanism for the referral of carers for social services assessment.
Physical help
Record whether a patient is a carer in their notes and find out what they do for the patients that they look after. Carers performing nursing tasks may benefit from help and advice from district or community nurses if they have any practical nursing problems, or advice from specialist nurses, such as Macmillan nurses, cancer care or stoma nurses if the carer has management problems relating to the patient's condition.
Additional help at home may be required to allow the carer to concentrate on looking after the cancer patient. Social services provide home care services and this may be subsidized depending on the family income. Every carer has a right to ask for a full assessment of their needs by the social services. Many other private organizations also provide home care and cleaning services. Voluntary organizations, such as Crossroads schemes (http://www.crossroads.org.uk) may provide sitting services, or Marie Curie nurses provide additional nursing at home for cancer patients (Tel: 0800 716 146 or http://www.mariecurie.org.uk).
Additional equipment or home modifications may also be needed to enable a cancer patient to be cared for at home. Home modifications are arranged through local authorities. District nurses usually have access to any equipment needed for nursing. In addition, the Red Cross, and many local hospices, also loan commodes, wheelchairs and other equipment for patients. A letter may be required from the GP confirming the patient's condition in some instances.
Caring for someone with cancer can be tiring both physically and emotionally. Many carers benefit from having a break. Hospitals, hospices, charity organizations and local authorities provide day care to give regular breaks each week, and also respite care for a week or more at a time.
Emotional support
Caring for someone with cancer can be an emotionally draining experience. Always ask the carer how he or she is when you are visiting or see the cancer patient in the surgery—even if the carer is not your patient. Maintain good lines of communication with carers and treat them as equal members of the community support team. If the patient is happy for clinical information to be shared with the carer, record this in the patient's notes and ensure the carer, as well as the patient, is kept fully informed about the management plan. Be accessible to the carer.
In the same way as cancer patients benefit from group support, carers may also benefit from such support. In many areas, there are carer support groups that enable carers to share information, their experiences and provide mutual support for each other. If their carer has a religion, another good source of support is their local religious community.
Financial support
Carers may be entitled to carer's allowance if they are not in full-time education and earning less than £87 per week after allowable expenses, if they care for someone else who is in receipt of AA or the middle or higher rate care component of DLA, for more than 35 hours a week. Claims can be made on form DS700 (or DS700 SP if receiving state retirement pension), by telephone (Tel: 0800 055 6688) or online (http://www.direct.gov.uk/carers).
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Key points
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TOPThe GP curriculum and...Information about cancerHelplines, support groups and...Financial helpBlue badges and road...CarersReferences |
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Carers UK. Available from: http://www.carersonline.org.uk.
Citizens Advice Bureaux. Available from: http://www.adviceguide.org.uk/index/life/benefits.htm [date last accessed 9.12.2007].
Department of Works and Pensions. Available from: http://www.dwp.gov.uk/lifeevent/workage/ and http://www.dwp.gov.uk/lifeevent/discare/ [date last accessed 9.12.2007].
Disability and Carers Service. Available from: http://www.direct.gov.uk/en/DisabledPeople/index.htm and http://www.direct.gov.uk/en/CaringForSomeone/index.htm [date last accessed 9.12.2007].
Jobcentre plus. Available from: http://www.jobcentreplus.gov.uk/JCP/Customers/Disabled_People_and_Carers/index.html and http://www.jobcentreplus.gov.uk/JCP/Customers/WorkingAgeBenefits/index.html [date last accessed 9.12.2007].
Princess Royal Trust for Carers. Available from: http://www.carers.org/ [date last accessed 9.12.2007].
The Pensions Service. Available from: http://www.thepensionservice.gov.uk last accessed date 9.12.2007].
The Tax Office. Available from: http://www.hmrc.gov.uk/ [date last accessed 9.12.2007].
VAT Reliefs for Disabled People: HMRC Reference: Notice 701/7 (August 2002). Available from: http://customs.hmrc.gov.uk/channelsPortalWebApp/channelsPortalWebApp.portal?_nfpb=true&_pageLabel=pageImport_ShowContent&id=HMCE_CL_000184&propertyType=document [date last accessed 9.12.2007].
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