Living with


British Lung Foundation
Survey of people affected by Mesothelioma 2013
Supported by the Mick Knighton Mesothelioma Research Fund

Mesothelioma is a devasting disease for patients, families and friends (please click here to read our stories).  Support and advice is available to any one diagnosed with mesothelioma from the lung cancer nurse specialist, whose role it  is to co-ordinate individualised care and to offer expert advice in all areas of mesothelioma.

Lung cancer nurses are experienced nurses who have specialised knowledge of treatments such as chemotherapy, radiotherapy and symptom management interventions.  Some nurses also specialise in breathlessness management. As well as offering advice on physical symptoms the lung cancer nurse can also advise on benefits and the legal implications of a diagnosis of mesothelioma.

Pre- diagnosis

In most hospitals lung cancer nurses can give support and advice to patients even before a diagnosis is made.  They can give information on tests and investigations that are to be carried out and can help patients and their families understand clearly the findings .Most importantly the patient can contact the nurse while waiting for results reliving some of the anxiety which is often experienced at this stage.


Receiving a diagnosis of mesothelioma can results in array of feelings and emotions ranging from shock and disbelief to anger and frustration. The Lung cancer nurse is there to support you and your family at this difficult time, providing both practical and emotional support.

For further information about symptoms please click here.


Treatment options will vary from patient to patient and every one with a diagnosis of mesothelioma should be discussed at a lung cancer multidisciplinary team meeting where individual treatment plans are discussed and where the lung cancer nurse can act as the patients advocate , ensuring that patients  opinions are also considered.    The lung cancer nurse can explain in depth the rationale behind treatments options, side effects as well as providing written information.

For further information about medical treatments please click here.

Symptom Control

Lung cancer nurses work within a multidisciplinary team which consists of doctors, Macmillan and district nurses, occupational therapists and physiotherapists.  Working in collaboration with theses other professionals and with liaison with specialist palliative care centres symptoms such as pain, breathlessness and fatigue can be managed more effectively.

Sue Longstaff Lung Cancer Specialist at Queen Elizabeth Hospital, Gateshead. Telephone 0191 4820000

Macmillan Nurses

Macmillan Nurses are part of a multidisciplinary specialist team who work to care for patients to carers who have life limiting illness and have specialist palliative care needs. The team visit patients in hospitals and residential and nursing homes. They communicate with various teams from hospitals and Centres for Cancer Treatment.

Whilst Macmillan Nurses do not provide “hands on care” their service is complimentary to the patients’ primary carers who remain the patient and family’s regular professional carers. Patients and their families can be transferred with their full consent by GPs, District Nurses, Hospital staff and other specialist teams following the assessment of their needs.

The Macmillan Clinical Nurse Specialist provides both direct and indirect patient and family care. Direct care included advice and support to the patient and families main professional carers giving advice on pain and symptom management. Coping strategies for dealing with breathlessness and rehabilitation are also provided.

Visit Macmillan’s website for more information.

Healthcare professionals

You may come into contact with a number of healthcare professionals. We’ve outlined a few people so you can have a clearer picture of who is involved in your care and some of the care options available.

Please tell your doctor if you would like them to share information about your condition with your carer of family member.  Doctors are bound by a code of conduct and will only discuss your condition with you unless you tell them otherwise.

GP and Primary Healthcare Team

The primary healthcare team is a team of healthcare professionals, including your GP, and is usually based in a health centre or surgery.

Your GP will liaise with the District Nurse, who is part of the team, regarding your care if you are being cared for at home. The GP is in charge of your medical care which includes prescribing your medications.

Specialist Palliative Care Team

Specialist palliative care teams are made up of different professionals who are experts in palliative care.  They work  with your GP and primary healthcare team by providing specialist advice and treatment so you receive the care that you need in the place of your choice.

Making decisions about your future care

People who are unwell or have a life-limiting illness often spend time thinking about how they would like to be cared for if they don’t get better. They may want to consider how they would like to be cared for and where, the treatment available to them and what their preferences are. We believe it is very important that people are given the chice to decide where they would like to be cared for at the end of their lives.

Planning care in adavance

Many people would prefer to be cared for at home or in a hospice close to where they live. Hospices across the UK such as Marie Curie give free hands-on care during the day or overnight, to people in their own homes towards the end of their lives. They  provide a safe and supportive environment for patients and families, and a range of specialist services to help them cope with their illnesses. If you have specific wishes or preferences, it is a good idea to discuss these with your carers and family and think about putting them down in writing so people have a clear understanding of the type of care and treatments you would prefer. This may make it easier for them to understand and accept your decisions. One way of making people aware of your wishes is by a process called advanced care planning.

Advance care planning

Advance care planning – sometimes referred to as a living will, advance decision, advance directive or advance statement – is about thinking ahead and talking to the people involved in your care such as your family, doctors or nurses. It is a time when you can express your views, preferences and wishes about the care you would like to receive.

Power of Attorney

You may also want to think about setting up a Power of Attorney. This allows you to choose someone to make decisions on your behalf if you become unable to do so in the future.  Planning ahead to ensure your wishes are known can be especially important if you live on your own and do not get regular support from carers or family  the legal name for each of these terms is different as is the paperwork.

If you record your wishes in writing in some way, ask for a copy to be added to your medical records or care plan. Even if you don’t have anything in writing, you can ask for your wishes to be added to your records.

If your wishes are not known, your doctor may consult your next of kin. Life partners may not be considered next of kin unless you are married or in a civil partnership. Your doctor is obliged to use their medical judgment and act in your best interests, whoever they talk to.

Making decisions in advance

You can decide what treatments you would want to refuse in specific circumstances but you cannot insist on receiving specific treatment (for instance, you cannot insist that a doctor resuscitate you if it is against their medical judgment).

You will have to state what treatments you wish to refuse and in which circumstances your refusal of treatment will apply. For instance, you might state that if you are terminally ill and expected to die within a few days, you do not want to be treated with antibiotics if you get an infection. You cannot rule out all medical treatment for any condition that might arise.

You are not expected to use medical terms. Your GP or another healthcare professional can advise you about what to include and what may be relevant in your situation. Standard forms to help you may be available from your District Nurse or GP surgery.

Do give healthcare professionals involved in your care, such as your GP, doctor or nurse a copy of any formal paperwork or tell them you have recorded your wishes in this way. Ask them to put a copy in your care plan. If you update your wishes in writing make sure everyone who needs it gets a new copy.

If your health changes significantly you may find it useful to review your existing paperwork. It is a good idea to review your paperwork on a regular basis even if there are no changes, just to make sure it still reflects your wishes.

England and Wales

You can use an Advance Decision to state your  wishes about refusing certain forms of medical treatment in certain  situations. An Advance Decision does not have to be in writing unless it  includes your wishes relating to treatment that could keep you alive, but  it is helpful if it is. An Advance Decision to refuse treatment is legally  binding if you follow some specific requirements.

  • You can use an Advance Statement to state your wishes about any other aspects of your general care and treatment,  including non-medical issues such as dietary preferences. An Advance Statement can also reflect your beliefs and values so people know what is important to you. An Advance Statement is not legally binding, but should be taken into account by your doctor and family.

Age Concern can also provide you with information on Advance Decisions, Advance Statements and Living Wills which could be useful for any age group.

If you drew up paperwork before October 2007, you are strongly advised to review it because the Mental Capacity Act is now in force and may affect it.

Nominating someone to make decisions on your behalf

You can choose a person to make decisions on your behalf if you are unable to do so in the future by setting up a:

Information about Lasting Powers of Attorney is available in the leaflet Making decisions… about your health, welfare or finances from the Office of the Public Guardian or phone 0845 330 2900 for a copy.

If you drew up an Enduring Power of Attorney in the past, please note that this would only cover financial issues, and you may wish to add to or replace it with a Personal Welfare LPA.

Scotland  An Advance Directive sets out your wishes regarding future care and treatment. It is not legally binding but your wishes would be taken into account by your family and doctors if you became unable to communicate.Nominating someone to make decisions on your behalf

You can choose a person to make decisions on your behalf if you are unable to do so in the future by setting up a:

The Office of the Public Guardian (Scotland) provides guidelines and sample power of attorney paperwork or phone: 01324 678300 to request a copy. Northern Ireland

There is currently no legislation covering advance decisions, advance statements or living wills inNorthern Ireland. However, your doctor will still act in your best interests when planning your care and treatment.

At present you can set up an Enduring Power of Attorney which relates to your financial affairs. This does not cover welfare or healthcare issues. Further information is available in the leaflet Enduring Power of Attorney: planning for the future produced by the Northern Ireland Court Service or phone 028 9023 5111 for a copy.

Making a will

Making a will ensures that your wishes will be followed after you die. If you don’t make one, your estate may go to people whom you never intended to benefit, while family, friends and organisations that you wanted to benefit will miss out.

Inheritance tax legislation means that if you don’t prepare properly more of your estate than necessary may go to the taxman. It is simple and inexpensive to have a Will drafted by a properly qualified professional. Last but not least, writing a Will offers you peace of mind.

District Nurses

The District Nurse is part of the primary healthcare team. They organise and coordinate home care and can arrange for a range of services to be provided to you if you are receiving care at home. These vary from area to area but can include Marie Curie Nurses, Macmillan Nurses, social services, sitters or prepared meals delivered to you.

The District Nurse can also provide you with information about local services such as carers’ groups, your local hospice, drop-in centres, organisations offering grants, complementary therapy practitioners, interpreting services and other relevant services and benefits.

Marie Curie Nurses

Marie Curie Cancer Care provides high quality nursing, totally free, to give people with terminal cancer and other illnesses the choice of dying at home, supported by their families. Marie Curie Nurses generally spend several hours at a time in a person’s home providing nursing care and emotional support, often overnight.


Hospices provide expert care for people with life-limiting illnesses. Many offer respite care allowing the person who is ill to stay at the hospice for a short period while the person caring for them takes a break.

Hospices also offer day services, which focus on relieving a person’s symptoms and helping them remain independent for as long as possible. In addition, some hospices have specialist nurses who can provide advice or support for people at home. Ask your GP or District Nurse whether they think a referral would help.



British Lung Foundation
© 2012 Mick Knighton Mesothelioma Research Fund Suffusion theme by Sayontan Sinha