Mesothelioma information centre
Mesothelioma (pronounced mee-so-thee-lee-oma) is a cancer of the mesothelium. The mesothelium is a thin membrane that lines the chest and abdomen and surrounds the organs in these areas. The lining around the lungs is called the pleura and in the abdomen it is known as the peritoneum.
Mesotheliomas are uncommon cancers, although they are becoming more frequent. Currently, about 1800 people in the UK are diagnosed with mesothelioma each year.
Mesothelioma of the lining of the lungs (pleural mesothelioma) is much more common than mesothelioma in the peritoneum. For every person with peritoneal mesothelioma there will be about 12 people who have pleural mesothelioma.
- Pleural mesothelioma
- Peritoneal mesothelioma
Pleural mesothelioma
The pleura has two layers: the inner (visceral) layer, which is next to the lung; and the outer (parietal) layer, which lines the chest wall. The two layers of the pleura are usually in contact and slide over each other as we breathe. The membranes produce fluid, which allows them to slide over each other easily.
When a mesothelioma develops in the pleura (pleural mesothelioma), the delicate membranes thicken and may press inwards on the lung. Fluid may also collect between the two layers of the pleura: this is known as a pleural effusion.
Peritoneal mesothelioma
The lining of the abdomen is known as the peritoneum. It also has two layers: the inner (visceral) layer, which is next to the abdominal organs; and the outer (parietal) layer, which lines the abdominal wall.
If the mesothelioma is in the peritoneum it is called peritoneal mesothelioma and causes thickening of the membranes surrounding the abdominal organs and a collection of fluid in the abdomen. The collection of fluid is called ascites and causes swelling of the abdomen.
Causes of mesothelioma
Up to 9 out of 10 cases of mesothelioma are caused by exposure to asbestos. Asbestos is a natural mineral, mined from rock found in many countries. It is made up of tiny fibres that are as strong as steel but can be woven like cotton and are highly resistant to heat and chemicals.
Before the 1980s, asbestos was imported to the UK in large quantities. It was used in construction, ship-building and in household appliances. When asbestos is disturbed or damaged, it releases tiny fibres that can be breathed into the lungs and cause inflammation, a build-up of scar tissue (fibrosis) and sometimes cancer.
During the 1960s the first definite link between mesothelioma and asbestos was made. Asbestos is now known to be the most common cause of the disease.
Asbestos was very widely used in insulation materials, such as amosite insulation board, and building materials, including asbestos cement. Asbestos fibres are very fine and if they are breathed in they can make their way into the smallest airways of the lung, so they cannot be breathed or coughed out. Once the fibres are in the lungs the body’s defence mechanism tries to break them down and remove them, which leads to inflammation in the lung tissue.
The asbestos fibres can also penetrate through the lung tissue to settle in the pleura (the membrane around the lung). Over many years they can cause mesothelioma or other lung diseases to develop.
The asbestos fibres can also be swallowed, and some of the fibres can stick in the digestive system. They can then move into the membrane that lines the abdomen (the peritoneum), where they cause inflammation.
The people likely to have been exposed to asbestos include:
- construction workers
- plumbers
- electricians
- boilermakers
- shipbuilders
- demolition workers
- people who lived near to asbestos factories
- people who worked in places where asbestos was present.
Family members of people who worked with asbestos and brought the dust home on their clothes have sometimes developed mesothelioma.
There are three types of asbestos: blue, brown and white. Blue and brown asbestos, are most commonly linked with mesothelioma. They are now very rarely used and cannot be imported into the UK. Originally, white asbestos was not thought to be dangerous but recent studies have now shown that it is also harmful.
Mesothelioma does not usually develop until 10–60 years after exposure to asbestos and for this reason it is often difficult to discover the exact cause.
In the 1980s, imports of blue and brown asbestos into the UK were stopped and in 1999 the importation and use of all asbestos was banned. However, as mesothelioma develops so slowly, it is estimated that by 2015 approximately 3000 people will be diagnosed with mesothelioma each year. The number of people who develop mesothelioma will then start to reduce each year.
Occasionally, mesothelioma develops in people who have never been exposed to asbestos. The other causes of the disease are not fully understood, but in rare cases the development of mesothelioma has been linked to exposure to radiation.
Currently a research study is taking place to try to find out more about the causes of mesothelioma. It is called the National Study of Occupation and Lung Diseases. Your doctor may invite you to take part in the study, and if you agree you will be asked to fill in a short questionnaire and have a telephone discussion for about an hour with a researcher.
Research has not found any evidence that smoking increases a person’s risk of developing mesothelioma. It is also thought that exposure to other building materials such as fibreglass does not increase the risk.
Mesothelioma is not contagious and cannot be passed on to other people. It is not caused by inherited faulty genes and so family members do not have an increased risk of developing it, unless they have been in contact with asbestos.
Symptoms of mesothelioma
Mesothelioma often starts as many tiny lumps (nodules) in the pleura, which may not show up on scans or x-rays until they are quite large. The main symptoms of pleural mesothelioma are pain in the chest and breathlessness. Some people also notice that their voice becomes hoarse and they have a cough that does not go away.
Peritoneal mesothelioma often causes swelling and pain in the abdomen.
General symptoms
Both types of mesothelioma can cause other general symptoms, such as loss of appetite, sweating (especially at night), weight loss and tiredness. As many of these symptoms can also be caused by other illnesses, your doctor will need to do a series of tests before a diagnosis can be made.
How mesothelioma is diagnosed
Most people begin by seeing their GP when they have symptoms. Your GP will examine you and may arrange for you to have some tests or x-rays. You may be referred to hospital for these tests and for specialist advice and treatment.
At the hospital the doctor will take your medical history and occupational history before doing a physical examination.
- Chest x-ray
- CT scan (computerised tomography scan)
- Pleural or peritoneal aspiration
- Biopsy
Chest x-ray
A chest x-ray will be taken to check for any abnormalities in your lungs, such as thickening of the pleura or fluid around the lungs.
The following tests may also be used to diagnose mesothelioma and your doctor may arrange for you to have one or more of them at the hospital.
CT scan (computerised tomography scan)
A CT scan takes a series of x-rays, which builds up a three-dimensional picture of the inside of the body. The scan is painless but takes from 10 to 30 minutes. CT scans use a small amount of radiation, which will be very unlikely to harm you and will not harm anyone you come into contact with. You will be asked not to eat or drink for at least four hours before the scan.
CT scans of the chest and of the abdomen will show the size and position of the mesothelioma and whether it has spread to other parts of the body.
You may be given a drink or injection of a dye that allows particular areas of your body to be seen more clearly. For a few minutes, this may make you feel hot all over. If you are allergic to iodine, or have asthma, you could have a more serious reaction to the injection, so it is important to let your doctor know beforehand.
The CT scan is painless but it will mean lying still for about 10–30 minutes. You will probably be able to go home as soon as the scan is over.
There are other much more common causes of thickening of the pleura and peritoneum, and fluid around the lungs or in the abdomen, so the chest x-rays and scans alone cannot make the diagnosis.
Pleural or peritoneal aspiration
If there is fluid in your chest or abdomen the doctor can take a sample by using a local anaesthetic and passing a needle through the skin into the fluid. Some of the fluid is then drawn off into a syringe and can be analysed in the laboratory to look for mesothelioma cells.
Taking fluid from between the pleura is known as a pleural aspiration and taking fluid from the abdomen is known as drainage of ascites (or peritoneal aspiration).
Biopsy
Your doctor will usually need to take a sample of tissue from the thickened pleura or peritoneum. A local anaesthetic is used to numb the area and a special type of needle is passed through the skin into the tumour. The needle has a tip that can cut out a sample of the tumour. The doctor may use ultrasound or a CT scanner to position the needle accurately. An ultrasound uses sound waves to build up a picture of the organs in a part of the body. A small device is passed over the skin to show the doctor where the tumour is and guide the needle into the right place.
Sometimes the doctor will want to look at the area of the pleura or the peritoneum directly to get a sample of tissue from the right area. This is done by using a thin flexible tube with a light and camera at the end. The tube (endoscope) can be passed through the skin of the chest, where it is called thoracoscopy, or the abdomen, where it is called laparoscopy. The procedure is done under a general anaesthetic by a surgeon. You will usually be able to go home the same day.
Analysing the biopsy in the laboratory is the only way your doctor can make the diagnosis of mesothelioma. Sometimes, even after taking a biopsy, the doctors may not be sure of the diagnosis, because mesothelioma can be very difficult to distinguish from other illnesses. In this situation, the biopsy samples may be sent to other laboratories to confirm the diagnosis, some of your tests may need to be repeated or you may be referred to another hospital for a second opinion.
It will probably take several days for the results of your tests to be ready and a follow-up appointment will be arranged for you before you go home. Obviously, this waiting period will be an anxious time for you and it may help to talk things over with a close friend or relative. You may want to ring Cancerbackup's Cancer Support Service to ask any questions you may have.
Staging of mesothelioma
The stage of a cancer is a term used to describe its size and whether it has spread beyond its original site. Knowing the extent of the cancer helps the doctors to decide on the most appropriate treatment.
There are several staging systems for pleural mesothelioma. A commonly used system is described below:
Localised malignant mesothelioma
Stage 1 The cancer cells are found in the pleura near the lung and heart or in the diaphragm or the lung.
Advanced malignant mesothelioma
Stage 2 The cancer has spread beyond the pleura to lymph nodes in the chest.
Stage 3 The cancer has spread into the chest wall, the centre of the chest, the heart, through the diaphragm, or abdominal lining, and in some cases into nearby lymph nodes.
Stage 4 The cancer has spread to distant organs or tissues.
A staging system has not yet been established for peritoneal mesothelioma
Treatment of mesothelioma
The treatment for mesothelioma depends on whether it is only in one place or has spread. Currently, there is no cure for mesothelioma, unless it can be removed by an operation. Unfortunately, when mesothelioma is diagnosed, it has usually already spread beyond the point where it could be removed by an operation.
The usual treatment for mesothelioma in this situation is called active symptom control.
- Multidisciplinary team
- Benefits and disadvantages of treatment
- Giving your consent
Multidisciplinary team
If your tests show that you have mesothelioma, you will be looked after by a multidisciplinary team. This is a team of staff who specialise in treating lung cancer and mesothelioma and in giving information and support. It will normally include:
- surgeons who are experienced in chest surgery
- specialist nurses who give information and support
- oncologists – doctors who have experience in mesothelioma treatment using chemotherapy and radiotherapy
- symptom control specialists
- radiologists who help to analyse x-rays
- pathologists who advise on the type and extent of the cancer.
Other staff will also be available to help you if necessary, such as:
- physiotherapists
- counsellors and psychologists
- social workers.
Benefits and disadvantages of treatment
Many people are frightened at the idea of having cancer treatments, particularly because of the side effects that can occur. Some people ask what would happen if they did not have any treatment.
Although cancer treatments can cause side effects, these can usually be controlled with medicines.
Treatment can be given for different reasons and the potential benefits will vary depending upon the individual situation. In people with early-stage mesothelioma, surgery, radiotherapy and chemotherapy may be given with the aim of curing the cancer.
However, in most people with mesothelioma, the cancer is at a more advanced stage and any treatment given is with the aim of controlling it, which for some people may lead to an improvement in symptoms and a better quality of life. However, for some people in this situation the treatment will have no effect upon the cancer and they will get the side effects of the treatment without any of the benefit.
When a cure is not possible and aim of treatment is to control the cancer for a period of time, it may be difficult to decide whether to go ahead with treatment. Making decisions in these circumstances is always difficult, and you may need to discuss your treatment and symptom control in detail with your doctor.
Giving your consent
Before you have any treatment, your doctor will explain the aims of the treatment to you. They will usually ask you to sign a form saying that you give your permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent, and before you are asked to sign the form you should have been given full information about:
- the type and extent of the treatment you are advised to have
- the advantages and disadvantages of the treatment
- any possible other treatments that may be available
- any significant risks or side effects of the treatment.
If you do not understand what you have been told, let the staff know straight away so that they can explain again. Some cancer treatments are complex, so it is not unusual for people to need repeated explanations.
It is often a good idea to have a friend or relative with you when the treatment is explained, to help you remember the discussion more fully. You may also find it useful to write down a list of questions before you go to your appointment.
Patients often feel that the hospital staff are too busy to answer their questions, but it is important for you to be aware of how the treatment is likely to affect you. The staff should be willing to make time for you to ask questions.
You can always ask for more time to decide about the treatment if you feel that you can’t make a decision when it is first explained to you.
You are also free to choose not to have the treatment. The staff can explain what may happen if you do not have it. It is essential to tell a doctor, or the nurse in charge, so that they can record your decision in your medical notes. You do not have to give a reason for not wanting to have treatment, but it can be helpful to let the staff know your concerns so that they can give you the best advice.
Treating mesothelioma with active symptom control
This means that if you have any symptoms, these are treated with appropriate medicines such as steroids, drugs to improve appetite, painkillers, or drugs that reduce breathlessness.
Radiotherapy may be used to reduce symptoms if necessary. Chemotherapy may also sometimes be used to shrink the mesothelioma and control symptoms.
There are a number of ways to help relieve symptoms caused by the mesothelioma. Pleural mesothelioma commonly causes breathlessness or difficulty with breathing.
Breathlessness can sometimes be caused by a build-up of fluid around the lungs (pleural effusion). Your doctor may be able to drain this fluid under a local anaesthetic and you will find that your breathing becomes easier. It may be necessary to have the fluid removed on a regular basis.
Talc, or a particular chemical powder, may be put into the pleural space through a tube. This procedure is called pleurodesis and causes inflammation of the pleural membranes, which then stick together to prevent the fluid from building up again. This can be done through keyhole surgery and is then called video assisted thorascopic surgery (VATS).
Fluid in the abdomen (ascites) can also be removed using a needle inserted under local anaesthetic.
You may be given medicines to help your breathing and also to control pain. If at any time you feel that your medicines are not working, let your doctor know as soon as possible so that the dose can be altered or the medicines changed.
If you have any symptoms that are not easily controlled, you can be quickly referred to a relevant specialist such as a pain relief service, physiotherapist or symptom control team. The aim of this type of treatment is to keep you as free as possible of symptoms and to give you the best possible quality of life.
Other helpful remedies include relaxation techniques and physiotherapy, and your GP or a local cancer self-help group can give you more details about these.
You may also find it helpful to look at the sections on controlling cancer pain, controlling the symptoms of cancer and cancer and complementary therapies.
Your doctor will discuss the different approaches to treatment, and you may need time to consider the options. You can then talk it over with family or friends before you make any firm decisions. If you would rather talk to someone outside your situation, you may find it helpful to speak to one of the nurses in Cancerbackup’s Cancer Support Service.
Treating mesothelioma with surgery
In the uncommon situation where the cancer is only in one area of the pleura (localised), surgery can be used to treat mesothelioma. It may involve removing part, or all, of the pleura and the lung tissue close to it. This is known as pleurectomy/decortication.
Sometimes the pleura, diaphragm and the whole lung on the affected side are removed as well as the tumour. This operation is known as extra-pleural pneumonectomy.
Currently it is not clear whether surgery can give better control of symptoms or can help people to live for longer than just using active symptom control. A research trial is being carried out to see whether extra-pleural pneumonectomy can give a better quality and length of life for people with localised pleural mesothelioma. The research trial is called the MARS trial. You may be invited to take part if your doctor thinks that surgery could possibly be helpful for you.
It is not usually possible to surgically remove abdominal (peritoneal) mesothelioma. If surgery is possible, it is carried out by surgeons with specialist expertise in treating mesothelioma. However, the operation is not likely to cure the mesothelioma.
It is important that you discuss any operation fully with your doctor beforehand so that you understand what it involves. Remember, no operation or procedure will be done without your consent. Surgery may sometimes be combined with radiotherapy or chemotherapy.
- After your operation
- Drips and drains
- Pain
- Going home
After your operation
It can take many weeks to recover fully from a lung operation, although some people recover more quickly than others. There are things you can do to help speed up your recovery. After your operation you will be encouraged to start moving about as soon as possible. Even if you have to stay in bed it is important to keep up regular leg movements. A physiotherapist will visit you on the ward to help you with breathing exercises.
Drips and drains
A drip (intravenous infusion) will be used to give you fluids for a couple of days, until you are able to eat and drink normally again. You will also have drainage tubes in your wound. These are usually removed about two to seven days after your operation depending on your recovery. X-rays will be taken regularly to make sure your lung is working properly.
Pain
It is quite normal to have some pain or discomfort after your operation. This can usually be controlled by painkilling drugs. Let your doctor or one of the nurses know if you have any pain so they can treat it as soon as possible. Mild discomfort or pain in your chest can last for several weeks and you will be given some painkilling tablets to take home with you.
Going home
You will probably be ready to go home about five to ten days after your operation. If you think you might have problems when you go home – for example, if you live alone or have several flights of stairs to climb – let one of the nurses or the hospital social worker know when you are admitted to the ward, so that help can be arranged.
When you go home, it is important to exercise gently, to build up your strength and fitness. It is a good idea to check with your doctor or physiotherapist which kind of exercise would be suitable for you. Walking and swimming are suitable for most people after surgery to the lung area. Talk to your doctor or physiotherapist if you would like more information.
Treating mesothelioma with radiotherapy
Radiotherapy treats cancer by using high-energy x-rays to destroy the cancer cells while doing as little harm as possible to normal cells. As a treatment for mesothelioma, radiotherapy is usually given to help relieve symptoms such as pain and breathlessness, but it is sometimes given as part of treatment to try to cure the mesothelioma.
Often, only one treatment or a few treatments are needed, but occasionally a course of treatment is given over two weeks or so.
Radiotherapy can reduce the size of a mesothelioma and so can reduce pain and discomfort, or breathlessness.
Radiotherapy may also be given to the chest wall at the place where a biopsy has been done or a drainage tube has been inserted. In this situation, the radiotherapy prevents the tumour from growing out through the scar. Only one dose is given and the planning discussed below is not needed.
You may be given radiotherapy as an initial form of treatment or as a follow up after surgery.
- Planning the radiotherapy
- Treatment sessions
- Side effects
Planning the radiotherapy
To make sure that you get maximum benefit from your radiotherapy, it has to be carefully planned. On your first visit to the radiotherapy department you will be asked to lie under a large machine called a simulator, which takes x-rays of the area to be treated. Sometimes a CT scanner can be used for the same purpose. Your treatment will be planned and supervised by a clinical oncologist (a doctor who is a specialist in radiotherapy treatment).
Treatment sessions
Before each session of radiotherapy the radiographer will position you carefully on the couch, either sitting or lying, and will make sure you are comfortable. During your treatment, which only takes a few minutes, you will be left alone in the room but you will be able to talk to the radiographer, who will be watching you carefully from the next room. Radiotherapy is not painful but you do have to stay still for a few minutes while your treatment is being given.
Side effects
Radiotherapy can cause general side effects such as feeling sick (nausea), being sick (vomiting) and tiredness. It can also make you temporarily more breathless and can cause flu-like symptoms for a few days, or chest pain. These side effects can be mild or more troublesome, depending on the strength of the radiotherapy dose and the length of your treatment. Your radiotherapist will be able to advise you what to expect.
Nausea can usually be effectively treated by anti-sickness drugs (called anti-emetics), which your doctor can prescribe.
If you don’t feel like eating, you can replace meals with nutritious, high-calorie drinks that are available from most chemists and can be prescribed by your GP. Our section on eating well has some helpful hints on how to eat well when you are feeling ill.
As radiotherapy can make you feel tired, try to get as much rest as you can, especially if you have to travel a long way for treatment each day.
All these side effects should disappear gradually once your course of treatment is over, but it is important to let your doctor know if they continue.
Radiotherapy does not make you radioactive and it is perfectly safe for you to be with other people, including children, throughout your treatment.
Treating mesothelioma with chemotherapy
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. They work by disrupting the growth of cancer cells.
In some people, chemotherapy may control the growth of the mesothelioma for a time, reducing symptoms and giving a better quality of life. A research trial has shown that chemotherapy may help some people with mesothelioma to live for a few months longer, but it cannot usually cure the mesothelioma. It is generally aimed at controlling symptoms.
- Individual drugs
- Side effects
Individual drugs
The drugs that can be effective in treating mesothelioma are below
- Pemetrexed (Alimta®)
- Cisplatin*
- Carboplatin*
- Mitomycin C*
- Vinorelbine (Navelbine®)*
- Raltitrexed (Tomudex®)*
- Vinblastin (Velbe®)*
* Drugs marked with an asterix are used in the treatment of mesothelioma, although they are not licencsed for in the UK for this indication
Other chemotherapy drugs may also be used as part of trials. Your doctor can discuss these with you.
Often cisplatin or carboplatin are combined with one or more of the other chemotherapy drugs. Chemotherapy may be better at controlling the symptoms of mesothelioma than using other medicines to control each symptom, such as painkillers or medicines for breathlessness. Your doctor can discuss with you the possible benefits and disadvantages of chemotherapy in your particular situation.
The effectiveness of chemotherapy in treating mesothelioma is still being researched. Several research trials are being carried out to find out how helpful different chemotherapy combinations may be, and you may be asked by your doctor to consider whether you would like to take part.
Side effects
While chemotherapy drugs are acting on the cancer cells in your body, they also temporarily reduce the number of normal cells in your blood. When the number of these cells is low, you are more likely to get an infection and you may tire easily. During chemotherapy your blood will be tested regularly and, if necessary, you will be given antibiotics to treat any infection. Blood transfusions may be given if you are anaemic.
Other side effects vary according to the chemotherapy drugs being used. They may include feeling sick (nausea), being sick (vomiting), diarrhoea and hair loss. Some drugs also make your mouth sore and may cause small mouth ulcers. Regular mouthwashes are important and the nurses will show you how to do these properly. If you don’t feel like eating, you can supplement or replace your meals with nutritious, high-calorie drinks that are available on prescription from your doctor. Medicines are also available from your doctor to help you stop feeling sick (anti-emetics). Our section on eating well may be helpful.
Although they may seem hard to bear at the time, the side effects are temporary and will disappear once your treatment is over. If you lose your hair, it will start to grow back a couple of months after the treatment has ended.
Chemotherapy affects different people in different ways. Some people are able to lead a normal life during their treatment; others find they become very tired and have to take things more slowly. Just do as much as you feel like and try not to overtire yourself.
Who can help to deal with mesothelioma?
Many people are available to help you and your family.
There are specialist lung and mesothelioma cancer nurses in most large cancer treatment hospitals. Mesothelioma UK can give you details of local specialist nurses and support groups for people affected by mesothelioma (phone 0800 169 2409).
Specialist mesothelioma nurses answer questions on treatments, cancer and support services from people in their areas. They can also organise equipment that may be needed by people with mesothelioma, such as special beds or walking aids. Asbestos Support Groups offer help and support.
Various people can offer support in the community. District nurses work closely with GPs and make regular visits to some patients and their families at home. In many areas of the country there are also Macmillan and Marie Curie nurses, who are specially trained to look after people with cancer in their own homes. Let your GP know if you are having any problems so that help can be arranged.
The hospital social worker is also often able to help in many ways, such as giving information about social services and other benefits you may be able to claim while you are ill. For example, you may be entitled to meals-on-wheels, a home help or hospital fares. The social worker may also be able to help arrange childcare during and after treatment and, if necessary, help with the cost of childminders.
Some people need more than advice and support. You may find that the impact of cancer leads to depression, feelings of helplessness and anxiety. Specialist help in coping with these emotions is available. Often it is easier to talk to someone who is not directly involved with your illness. You can ask your hospital consultant or GP to refer you to a doctor or counsellor who is an expert in the emotional problems of people with cancer and their relatives.
Our Cancer Support Service can tell you more about counselling and can let you know about services in your area. You can also contact the Cancer Counselling Trust.
Some hospitals have their own emotional support services with specially trained staff. Nurses on the ward may have training in counselling and will also be able to give advice about practical problems. Some people find great comfort in religion at this time and it may help them to talk to a local minister, hospital chaplain or other spiritual or religious advisor.
Financial help and compensation for mesothelioma
If your mesothelioma could be due to exposure to asbestos through your work, you may be able to claim compensation. This can be done in two ways: through benefits paid by the government and/or by suing your employer for the period (or periods) during which you were exposed to asbestos. Your specialist nurse, local Citizens Advice Bureau, a local Benefits Adviser or an Asbestos Diseases Support Group can tell you who to contact and help you through the benefits system.
- Benefits paid by the government
- Compensation from employers
- Other financial help and benefits
- Information on benefits and financial help
- Travel insurance
- Work issues
- Coroner's inquest
Benefits paid by the government
The main benefit payable for people with asbestos-related illnesses is Industrial Injuries Disablement Benefit.
This is paid, as a regular weekly allowance, to people who have mesothelioma and can show that they have worked in a job that exposed them to asbestos. The work may not have involved actually handling asbestos but may have been done somewhere where there was a higher than normal level of asbestos in the air.
This benefit is not paid if you were self-employed in the work that led to the asbestos exposure.
Your GP, cancer specialist or specialist nurse will be asked to send a report to the Benefits Agency (previously the Department of Social Security), stating that you have been diagnosed with mesothelioma, and you will be awarded the full rate of Industrial Injuries Disablement Benefit.
If the employer has gone out of business, you may be entitled to Pneumoconiosis Worker’s Compensation.
Before July 2002 people sometimes had to have a medical examination by doctors working for the DSS to make sure that they had mesothelioma and to assess how seriously they were disabled by it, but this is no longer the case.
You can get benefit forms by ringing the Department for Work and Pensions Benefit Enquiry Line on 0800 882200. It is advisable to do this, because if the benefit is awarded it will start from the date of the phone call. Always keep any copies of any claim forms, letters or queries you have sent to, or received from, your Benefit Agency or the Department for Work and Pensions. If you phone the Benefit Agency, record the name of the person you spoke to and what they said and make a note of the date, time and reason for your call. Have your National Insurance number available.
Claim all benefits you think you may be entitled to. Many people miss out by failing to claim.
Compensation from employers
Anyone who is diagnosed as having mesothelioma and has worked somewhere where they have been exposed to asbestos in the past should consider getting legal advice from a solicitor, to see if they can bring a civil law personal injury claim for compensation from their employer.
As mesothelioma claims are a very specialised area, when contacting solicitors it is always a good idea to ask:
- Does the solicitor specialise in asbestos cases?
- How many similar cases has the solicitor handled?
- How many of these have actually come to court?
- Is the solicitor a member of the Association of Personal Injury Lawyers (APIL)?
- How many asbestos cases has the solicitor successfully handled in the past three years?
- Will the solicitor pay for your insurance policy?
- What additional expenses may you be expected to pay, such as court costs and court fees?
- When would you be expected to pay the solicitor?
- Will they work on a no-win/no-fee basis?
- How will you be kept informed of what is happening with your claim?
- How long will the claims process take?
- How soon does the solicitor expect to start a court action?
Your union may be able to recommend an experienced solicitor. The Law Society (0870 606 2555) has a list of specialist solicitors.
In order for the claim to be successful you would have to show that:
- it is likely that your mesothelioma is due to exposure to asbestos during the course of your work. This may be difficult to prove, so the legal phrase is that 'on the balance of probabilities’ the exposure caused the condition. This means that although it cannot be certain that the mesothelioma was caused by one or more jobs it is more likely than not that it was
- your employer at the time was negligent (careless) in not keeping up the standards required by common law.
It may be possible to sue your employer for specific offences against health and safety regulations.
If a previous employer has gone out of business it may be possible to claim against the firm’s insurers.
Claims must be started within three years of the first 'date of knowledge’ of any injury due to asbestos. This does not mean three years from the time of asbestos exposure, but three years from when an asbestos-related illness was first discovered.
Sometimes, a person may think they have a claim but the previous employer has gone out of business and the employer’s insurer no longer provides cover. In these circumstances it may be possible to get compensation from the Government under the Pneumoconiosis etc Worker’s Compensation Act of 1979. If the claim is successful it provides a lump sum of cash in addition to the Industrial Injuries Disablement Benefit paid by the government.
Support when claiming compensation
Any of the asbestos support organisations can give you information about claiming compensation and can support you through the process. You can get more information about the process of making claims from the Occupational and Environmental Disease Association (OEDA) and the Association of Personal Injury Lawyers (APIL).
Costs of claiming compensation
Making a personal injury compensation claim should not cost you a lot of money. Most good solicitors offer a free initial interview, even if a home visit is needed. The solicitor should then be able to discuss the various options for funding, before any claim is started.
If you are a member of a trade union or a professional association, or you have legal expenses insurance cover, then you may not have to pay anything. If your solicitor is prepared to take your case on a 'no win/no fee’ basis then you may have to pay a one-off insurance premium (which is paid back to you if the claim is successful). The insurance cover will protect you against the risk of having to pay the other side’s costs if the claim is lost or discontinued (if court proceedings have been started).
Compensation for family members
Compensation can be claimed by relatives of people who have died of mesothelioma, to compensate them for their relative’s pain and suffering and any financial losses suffered as a result of the illness. It is helpful to get legal advice before making such a claim.
Other financial help and benefits
If you are employed and unable to work, your employer can pay you Statutory Sick Pay (SSP) for a maximum of 28 weeks.
If you are still unable to work after this period, you may be able to claim Incapacity Benefit. There are three rates of Incapacity Benefit: a short-term lower rate, a short-term higher rate, and a long-term rate.
You can claim Incapacity Benefit from the Department for Work and Pensions (DWP) if you have paid the correct level of National Insurance contributions. If you are still unable to work after one year, you can claim long-term Incapacity Benefit.
If you are self-employed you are entitled to the same benefits as long as you have been paying the correct National Insurance contributions.
People who are unemployed and unable to work cannot claim Job Seeker’s Allowance but can apply to see if they qualify for the short-term lower rate of Incapacity Benefit.
People who are not eligible for Incapacity Benefit because they have not paid the relevant National Insurance contributions can claim Income Support.
If you are ill and not able to work, remember to ask your GP for a medical certificate to cover the period of your illness. If you are in hospital, ask your doctor or nurse for a certificate to cover the time that you are an in-patient. The certificate will be necessary if you need to claim a benefit.
You may be entitled to other benefits depending on your individual circumstances and so you need to check if it is possible for you to claim. It is important to be aware that any payment of compensation from your employer or the government may affect your entitlement to certain benefits. You can get advice about this from the Citizens Advice Bureau or the Department for Work and Pensions.
The amount of any benefit is regularly increased. Up-to-date figures are available on the Department for Work and Pensions website (www.dwp.gov.uk) or at your local Benefits Agency.
You may qualify for Disability Living Allowance (if you are under 65) or for Attendance Allowance (if you are 65 or over), or for Constant Attendance Allowance or Exceptionally Severe Disablement Allowance if you are diagnosed with mesothelioma. Ask your local Benefit Agency office for claim forms. If you are claiming under 'special rules’ (a fast-track claim for people who may not live longer than six months) then your doctor needs to complete a form for either benefit. It is always impossible to tell exactly how long someone may live and many people with advanced cancer may be entitled to this benefit, so it can be helpful to check with your doctor. Payments made under special rules are now for a fixed period of three years, rather than for an indefinite period.
Claim forms for benefits can be rather daunting to fill in so you may want to ask a member of an asbestos support group, a Macmillan nurse, a lung cancer specialist nurse or a Citizens Advice Bureau to help you to complete them.
Information on benefits and financial help
The Department for Work and Pensions has two booklets (SD7 and SD1) that outline all these benefits and others to which you may be entitled. You can get a copy from your local Citizens Advice Bureau or Benefit Agency office, where staff will also be able to advise you about the benefits you can claim. Their addresses and telephone numbers are in the phone book. You can also get information from the Benefit Enquiry Line on 0800 882200 or the Department for Work and Pensions website at www.dwp.gov.uk
The social worker at the hospital can give you advice on other sources of financial help. You may also be able to claim grants and benefits from other organisations or charities. Macmillan Cancer Support gives grants to people with cancer and you can contact their information line for information on how to claim. A book that gives details of all the trusts and organisations that provide financial support is available from bookshops or local libraries. It is called A Guide to Grants or Individuals in Need.
Travel insurance
If you have cancer it can be more difficult to get travel insurance. We can have a section about travel and cancer including a list of travel insurance companies who offer insurance to people with medical conditions, including cancer.
Work issues
You may need to take time off work during your treatment and for a while afterwards. It can be hard to judge the best time to go back to work, and your decision if and when to go back is likely to depend mainly on the type of your work and whether your income is affected. It is important to do what is right for you. It can be helpful to talk to your employer about the situation – it may be possible for you to work part-time or job share.
You may wish to take early retirement on health grounds. Our section on work and cancer discusses work-related financial issues.
Coroner's inquest
When a person with mesothelioma dies, the doctor who signs the death certificate must inform the coroner. The coroner then decides if a post-mortem examination is necessary and an inquest will be held. The death certificate will not be released until after the inquest. This can be distressing at an already difficult time and you may wish to get support from your specialist nurse or one of the support organisations.
You may wish to get legal representation at an inquest if you are considering making a claim for compensation.
Research - clinical trials for mesothelioma
Cancer research trials are carried out to try to find new and better treatments for cancer. Trials that are carried out on patients are known as clinical trials.
