The information in this section was compiled by Healthtalkonline 

Community Care

Social services

'Social services' is a local government department responsible for the non-medical welfare of people in need. 

Social services departments can arrange needs assessments for people with terminal illness and should provide services under community care provisions.  

Needs assessment

Needs assessment is the process by which Social Services and health professionals assess the services that a person should be provided with under local community care provisions. 

Carers' needs assessment

When Social Services have arranged to make an assessment of your needs as a carer it means that you will be visited at home by a social worker (or a care manager). You should think in advance of how being a carer has affected you and your life.  

It may be helpful to make a list of the things in your life that have changed before the visit so that you are well prepared. You might think in advance about whether or not you can still go out and do chores; are you getting enough sleep at night or are you disturbed (if so how often and for how long); do you have any time to yourself; are you worried that you may have to give up work at some stage; whether your health been affected; how easy is it for you to get away and have a break?

The results of this assessment will be recorded in a care plan and you can ask to have your own copy of this. It is a written copy of your needs as a carer and will detail what support is necessary to help you continue to cope as a carer.

Home Care

If you need practical care to help you continue to live at home the first place to start is social services who can tell you what you are eligible for under 'community care'. This may result in a visit to your home by a social worker or you may have your case referred to your primary health care team for further investigation.  

Alternatively if you are willing to pay for some care, some social service departments keep a list of private carers you can contact yourself. The United Kingdom Home Care Association (UKHCA) can also give advice about private agencies that supply home care ( tel. 020 8288 1551).

If you do qualify for home care through social services it will be arranged for part of a day and paid for on an hourly basis.  Home care can be provided by social services, voluntary organisations and private agencies and will often be a mixture of all three.  

The charity Crossroads runs a Care Attendants Scheme (tel: 0845 450 0350), and also other voluntary groups may be able to help with shopping etc., your local CAB or local library should have lists.  

Some voluntary groups may also be able to help with chores such as shopping, fetching prescriptions. They may also have people willing to visit on a regular basis and just sit with you. Your local Citizen's Advice Bureau or library should know about what is available locally.  
 
If you need special equipment, such as a wheelchair or a commode, you should ask your district nurse or GP about what is available. Often voluntary organisations like the Red Cross can lend equipment to people at little or no charge.

Services to enable you to stay at home ('Community care')

It is generally thought that people should be helped to remain in their own homes for as long as possible if that is their wish. However the amount of community care services provided by local health authorities and social serviced differs is different areas. 

The extent to which people are expected to pay for community care services also varies from place to place. It is common for charges to be made for some services, depending on the recipient's income and savings. There can also be waiting lists for some services. 

Services provided at home- ie under 'community care' are:

-home helps

-continence advice and special laundry services

-meals at home [also called meals on wheels]

- advice on aids to increase safety in the home and appropriate equipment

-home care

-different types of nursing care

-physiotherapy to help with mobility

-podiatry

-speech and language therapy

-day centres

-respite care

Last reviewed May 2010.

Last updated May 2010.

The information in this section was compiled by Healthtalkonline

Nursing Care

District or community nurses

When someone is ill and living at home their medical care is the responsibility of their primary care team which includes general practitioners, practice nurses, district nurses and health visitors.  

District Nurses work collaboratively with other health care professionals, social services, statutory, voluntary and private agencies in the assessment of needs and the provision of care. They liase and can refer to other agencies as appropriate. As well as a 'core' daytime service, district nurses provide an 'out-of-Hours' service which includes evening and night nursing care. 

There are many specialist nurses within the District Nursing Service who offer expertise in wound management, palliative care and rehabilitation.

Anyone who has just come home from hospital and is trying to cope with illness at home is entitled to see a district nurse and can contact them directly by phoning their own medical practice.  

Marie Curie nurses

The Marie Curie Nursing Service complements the District Nursing Service by offering one-to-one specialised nursing that may be needed when someone has a terminal illness. 

Marie Curie nurses work in most parts of the country and can provide a limited amount of day or night care in the home. 

The usual demand is for night nursing, so that the carer can get some rest. The services of Marie Curie nurses are free of charge and are usually arranged through the district nurse.

Macmillan nurses

Macmillan nurses specialise in managing pain and symptom control and also provide emotional support to people and their families. They do not usually provide daily nursing care but can visit you regularly to check on your symptoms and give advice. In some cases they can help you or your carer to administer your medication. 

The Macmillan nursing service is free and you can contact them through your GP or through their information line: 0808 808 0000.

District Nurse Assessment

If someone has a terminal illness, a district nurse may carry out a formal assessment of the person's nursing and related needs in consultation with them and their family. This results in a district nurse assessment which establishes how much support the nurse and the family feel is needed if they are to continue to care for someone with a terminal illness at home.  

The assessment should include details about how the kind of help that should be provided, by whom and at what times of day/night. District nurses may decide when and if Marie Curie nursing or care is appropriate and also whether the family would benefit from Macmillan nursing.  

A district nurse will review how each person is being cared for at various intervals and will decide whether more or less care and help is required. A district nurse can also arrange with social services to have special equipment supplied such as wheelchairs, handrails, bath aids etc.  

Last reviewed May 2010.

Last updated May 2010.

The information in this section was compiled by Healthtalkonline

Do you have to ask for nursing care at home and help from social services or should you expect your GP to apply for it on your behalf? 

It is a good idea to make sure your GP understands what you need in the way of nursing and also that you want to live at home for as long as possible. 

GPs should be able to tell you what is available in your area and what help you can expect to receive through your local primary care team.  

GPs should put you in touch with a district nurse, but you can always contact the district nursing service yourself and ask for help (your local GP practice will have the name and phone number of your district nurse). District nurses and GPs should also know whether Macmillan and Marie Curie nurses are available in your area.

If you need other kinds of help apart from nursing, you should contact Social Services yourself and ask for a Community Care Assessment.  

A social worker will visit you at home and discuss your needs with you so that an individual Care Plan can be made for you.  (This plan is a written statement of your needs and you should ask for your own copy of it.)  

After meeting you, the social worker may decide to talk to members of your primary care team to check on what kind of nursing help has been provided for you so that they can supplement that care with home help.  

Try to be as clear as you can about your needs for help with personal services, such as bathing and showering, and how many times you would expect to receive this kind of help.  

You can also contact voluntary organisations like Crossroads yourself to find out if there are local volunteers in your area who may be prepared to visit you, take you out for a couple of hours or help you with shopping and other household chores. Local churches may also offer help.  

Last reviewed May 2010.

The information in this section was compiled by Healthtalkonline

Palliative Care

Palliative care is a specialist method and approach to caring provided by a healthcare team for those who are not going to get better. Palliative care is offered in most cases to those whose underlying illness cannot be cured and its purpose is to relieve symptoms of illness that are caused pain or discomfort and to improve the quality of life.  

Palliative care should be available early in the course of the illness and should be used alongside other therapies that are intended to prolong life, such as chemotherapy or radiation therapy.  

Palliative care is not the practice of euthanasia.

A definition of palliative care produced by the World Health Organisation in 2002 states that palliative care should:

- provide relief from pain and other distressing symptoms

- affirm life and regards dying as a normal process

- intend neither to hasten or postpone death

- integrate the psychological and spiritual aspects of patient care

- offer a support system to help the family cope during the patient's illness and in their own bereavement

- use a team approach to address the needs of patients and their families, including bereavement counselling, if indicated

- enhance quality of life, and may also positively influence the course of illness

Last reviewed May 2010.

The information in this section was compiled by Healthtalkonline

Hospice

A hospice offers expert palliative care from a team of professionals - doctors, nurses and social workers, among others. They work with GPs and hospital staff. The hospice staff are experienced not only in symptom control, but also in giving emotional support to patients and their families.
 
People sometimes think that you only go to a hospice to die. Some people do go there to die, but many others go for a short stay, and then return home once their symptoms are under control.
 
Hospices can also admit someone for a short time so that his/her carer can have a break. The person themselves may need a break from home and family too - and most hospices offer day care for this purpose and some may offer activities such as art therapy on a regular or short-term basis.

Hospices usually have nurses who do home visits. They can advise you about symptom control and about how best to look after your relative. People are usually referred to a hospice by a hospital doctor or a GP. Most hospices also offer bereavement support for the relatives of a patient who has died.

Non-cancer patients and hospice care

It is NHS policy that everyone with a life-threatening illness should have access to the appropriate palliative care services. Yet for many reasons, mainly historical, most people admitted as hospice in-patients in the UK have had a diagnosis of cancer. 

In the past hospice funding has come from cancer charities, and less is known about the palliative care needs of non-cancer patients and less is also known about how long people with other life threatening illnesses are likely to live. 

Depending on what illness you have you could try contacting the relevant charity or support group and ask them for advice about getting hospice care (e.g. British Heart Foundation, Motor Neurone Disease Association, Parkinson's Disease Society).  

It is always a good idea to talk to your GP/your hospital consultant and also your local hospice and tell them what you think you need.  

Many NHS Trusts have established Patients' Advice and Liaison Service or PALS which have replaced Community Health Councils. PALS aims to listen to patients' concerns, viewpoints and suggestions and should be prepared to give advice about local NHS services and make enquiries on your behalf.  

To find out about your local PALS contact your Primary Care Trust by looking on their website or phone your local CAB office if you can't find them in the phone book.  

If all else fails and you decide to make a formal complaint about the lack of services PALS can help you to contact The Independent Complaints and Advocacy Service (ICAS) set up by the Department of Health.



Last reviewed May 2010.

The information in this section was compiled by Healthtalkonline

Is hospice care available free to everyone whatever their financial circumstances?

Yes, hospice care is free of charge to patients and their families. Most of the hospice care in the UK is provided in units run by charities such as Macmillan; the NHS contributes about 30% of their funding and running costs.

Last reviewed May 2010.

The information in this section was compiled by Healthtalkonline

Can you ask your GP to arrange for you to have hospice care?

Yes you can ask, and most people with a terminal illness will be referred for hospice care by their own GP or other member of the primary care team.  

Your healthcare team will try to weigh up a number of things in your case: for example, whether you have become physically incapacitated and would benefit from receiving advice and treatment (including regular monitoring of symptom control) in a hospice setting; whether you would benefit emotionally from the kind of group support and companionship that hospices can offer; whether you would find it helpful to have counselling and other kinds of therapies that may be available in your local hospice.  

Your primary care team may well also consider whether your family circumstances would allow you  to continue to be supported and cared for at home.  

Last reviewed May 2010.

The information in this section was compiled by Healthtalkonline

Who decides how much hospice care you can receive?

Ideally the decision should be jointly made by you and the hospice staff. In practice though it is often members of the hospice staff who decide how much care you receive, though they will do their best to meet your needs.  

Inevitably the amount of care you are offered through your local hospice will depend on what is available at that particular time and also what kind of services they offer. 

Some offer day-care, some offer particular activities (e.g. music and art therapy, relaxation classes) at particular times. Hospices do not all have the same resources or expertise.  

Some hospices/palliative care units may have a written policy about what kind of care services they provide and also outline the types of illness they can work with. 

A recent survey found that day-care units are open 6 days a week and that their services are mainly for adult cancer patients though others with progressive life-limiting diseases such as motor neurone disease or HIV/AIDs may be catered for.  

Other groups of patients, for instance those with advanced heart failure or progressive neurological diseases may find that they cannot be considered for hospice care, but this issue is beginning to be addressed.

Last reviewed May 2010.

The information in this section was compiled by Healthtalkonline

Planning ahead - wills and other arrangements

Making a will

There are many practical arrangements that can be made towards the end of life that can help people put their affairs in order. Some people find that as they approach death they want to make sure that there are no legal or financial burdens for the people closest to them.

If someone dies without making a will their property will be divided up under legal rules which do not take account of a person's circumstances.

For example, when two people live together but are not married, unless there is a will, the surviving partner will not inherit anything, and the estate (including the house they had jointly lived in) would go to the dead partner's next of kin. 

This situation can cause enormous distress and possibly lengthy (and expensive) legal proceedings, at a time when people are already upset.

Ask the Citizens Advice Bureau for advice, or contact a solicitor. The Consumers Association also offers a will service via their website.  

Age UK (Aged Concern and Help the Aged have merged) have a number of forms that can be downloaded (PDF) from their website.

You can find a solicitor by asking a friend for a recommendation or by contacting theLaw Society. Get quotes from a few solicitors before deciding which is best for you. Sometimes they will make home visits

Macmillan Cancer Support has a guide to making a will and leaving a lifeline. It helps you prepare as much as possible before going to see a solicitor.

Make sure your spouse/partner/family know where important documents are kept, such as

- the deeds of the house 

- the will 

- passport 

- driving licence 

- birth, marriage and divorce certificates 

- details of bank or building society accounts 

- insurance premiums and pension policies 

- car insurance 

- tax and national insurance numbers.

You might also want to list the names and phone numbers of various people who would need to be told after the death -- executors of the will, bank manager, employer, landlord, solicitor, accountant, and doctor.

'Living wills'

A 'living will' is an umbrella term often used rather vaguely in general conversation. 

Though many people think that they can write a 'living will' leaving instructions about how they want to end their lives when the time comes, this is not how it works in practice. 

Because of the confusion about the meaning of the term 'living will', it has been replaced by another term - advance directive - which carries more specific meanings and is more accurate.  

Advance directive

If you want to refuse certain kinds of medical treatment at some time in the future, and at a time when you are no longer able to communicate your wishes effectively (for example if you develop dementia, or become confused in old age or because of a particular illness) you should write an 'advance directive' (see the guidelines listed below). 

In other words an advance directive is a document you should draw up when you are mentally capable on the basis that it will only be used once you have lost mental capacity to participate in the decision-making process about your medical treatment.  

It is important to know the following facts about advance directives:

1.  Advance directives cannot be used to insist that a particular medical treatment is given and can only be about refusing certain forms of treatment. 

2.  Advance directives cannot authorise doctors to do anything unlawful, such as practise euthanasia or act against their clinical judgments. 

3.  Advance directives cannot include the refusal of 'basic care' such as the maintenance of your bodily cleanliness, the alleviation of severe pain and the provision of direct oral nutrition and hydration.  

If you decide to write an advance directive, it is a good idea to make at least 3 copies - one for your solicitor, one for your doctor and the third copy to be kept with your personal papers (it is also a good idea to talk to your partner/spouse/family about the things you have said in your advance directive and also tell them where you are going to keep it).

Advance directives should be updated every 2 or 3 years and should be kept safe. Families and all relevant medical professionals need to be aware of their existence and should always have the latest version. 

Guidelines for drawing up an advance directive

To be valid advance directives must meet the following criteria:

- the person must have been over 18 years old when he/she signed the document

- s/he must have been mentally competent and not suffering from any mental distress at the time the directive was drawn up

- s/he must not have been influenced or harassed by anyone else when preparing the advance directive

- s/he must appear to have been fully informed about the treatment options and their implications when the directive was made

- s/he must not have modified the advance directive verbally or in writing since it was signed and dated.

- the advance directive must be signed and dated by at least one witness over the age of 18 and this person should not be a spouse, partner, relative or anyone who stands to benefit from your ordinary will.

- advance directives must be made available to medical staff at the time treatment decisions have to be made.

Standard blank versions of advance directive forms are available from several organisations including the Alzheimer's Society, Age Concern and Mind.  

Another part of what people have referred to loosely in the past as a 'living will' is now called an advance statement. Though some people use the term advance statement interchangeably with that of advance directive they are NOT the same.

Advance statement

An advance statement can be a written document, a witnessed oral statement, a signed printed card, a smart card or a note of a discussion recorded in your medical records. As the law stands at present, an advance statement is not legally binding. 

An advance statement is a general statement of someone's wishes and views, and allows him/her to express preferences and indicate what kinds of medical treatment s/he would or would not like to be carried out in the event of future incapacity.  

An advance statement can be used to draw attention to someone's religious beliefs or philosophy so that those providing you with care can make more sensitive and informed decisions about your treatment.  

Advance statements can also be used to nominate someone who you would like to be consulted at the point at which a decision has to be made.

Useful books include - Advance Statements about Medical Treatment: Code of Practice with Explanatory Notes. Report of the British Medical Association, published by BMJ, 1995. ISBN 07279 0914 2.  

Donating organs 

If you decide you want to leave your body for medical research you can contact The Licensed Tutor of Anatomy at your local medical school. Once s/he has been contacted you should be sent an information booklet telling you who you should notify about your decision. For more details on organ donation see Human Tissue Authority.

Bodies donated for medical research are often used for anatomical dissection and for the training medical students and organs may be used in transplant surgery. Bodies donated are usually preserved and used over three years or so, after which the cremated remains can be returned to relatives. 

There is a National NHS Donor Register and patients can get on this either by using Form OD 12R available at most GP's surgeries, or by applying to go directly on to the register when registering with a GP, or by applying directly to the NHS Organ Donor Register tel:0300 123 23 23. 

Anyone can be a donor and specific organs can be donated. The recipients for donation are chosen on the grounds of need and blood group and if necessary by tissue characteristic. There is a waiting list for organ transplantation because the demand far exceeds the supply.


Funerals

Because death and dying are such emotional subjects that cause extremely painful feelings, it is understandable that many people try to avoid thinking about them. 

Some people are superstitious about death and are worried that even thinking or talking about it will make it happen. 

There are others who feel that talking about death and preparing themselves and their families can help them get prepared and help to control and minimise fear.  

Some with a terminal illness want to organise their own funerals in advance and chose what prayers, readings and music they would like. Many also wish to chose in advance whether they wish to be buried or cremated or whether they would prefer to leave their bodies to medical research.  

Organisation that can help you with making decisions about funerals include the Natural Death Centre and British Humanist Association.

Useful books on the subject include Funerals: a guide - prayers, hymns and readings by James Bentley et al, published by Hodder and Stoughton in 1994, or Funerals without God - a practical guide to non-religious funerals published by the British Humanist Association in 1995.

Euthanasia

Euthanasia is used by many to mean 'mercy killing' but the word (from Greek) literally means 'good death' or death without suffering.  

There are many definitions of euthanasia, such as 'a deliberate intervention undertaken with the express intention of ending a life to relieve intractable suffering'.

Euthanasia is not allowing nature to take its course or the stopping of treatment when the burdens outweigh the benefits. 

Euthanasia does not mean palliative care, nor is it part of palliative care or hospice treatment. 

As the law stands at present, you cannot request euthanasia through your advance directive (see section Advance directives and Thoughts on suicide and euthanasia).

For more information and discussion about euthanasia see:

NHS choices

BBC

Dignity in dying

Last reviewed May 2010.

Last updated May 2010.