Palliative Care Advice

What is Palliative Care

In England, Wales and Northern Ireland, Hospice UK (formally NCPC) acts as an umbrella organisation for all those who are involved in providing, commissioning and using palliative care and hospice services. The Councils definition of palliative care as a part of supportive care is as follows:

Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.

Supportive care is designed to help patients and their families to deal with their condition from pre-diagnosis through to cure or chronic illness and finally death and bereavement. While palliative care historically focused on cancer, it now covers a wide range of life-limiting illnesses.

Palliative care is typically available in care settings, such as a hospital, or in the community - in a hospice, care home or the patients own home, for example.

Palliative Care In hospital

Specialist medical staff in hospital are responsible for drawing up support plans for each patient needing palliative care. Staff may include physiotherapists, dieticians, social workers, doctors and nursing specialists. Their input may be the beginning of a plan, which extends into the community if it's decided the patient can go home.

Palliative Care In the community

Specialist palliative services are available to people living in care homes, in their own homes or in hospices.

For example, a patient may begin their care in hospital, go home and receive support at home (including day visits to a hospice or day centre) then become a resident in a care home or hospice. Respite care is also available in hospices to provide a breathing space for carers.

What services can you ask for?

Palliative services available include:

• Medical and nursing care
• Pain and symptom control
• Physiotherapy
• Complementary therapies
• Spiritual and emotional support
• Practical and financial advice
• Bereavement care for families and friends
• Equipment to help mobility
• Incontinence aids

Whether you are the patient or the carer make sure that you tell the medical and social services staff what you need. Having the right support will make all the difference at a difficult and emotional time.

Financial Support for People with Chronic and Terminal Illnesses

As mentioned in the section on Who is eligible for NHS Continuing Healthcare?, funding arrangements are complicated and, although NHS Continuing Healthcare is provided free of charge to eligabile adults, other types of care such as social care or community support may b e funded by different organisations such as local authorities or private providers. This can make if confusing for families and carers trying to secure the care their loves ones need.

The Independent Age website is a source of unbiased information and offers a range of free leaflets you can download from their website, including Continuing Healthcare Should the NHS be paying for your care?

Live-in Care

If your family or friends are not able to provide support on a daily basis because of commitments or living away, you may decide to employ suitable people to live in your home and take care of you.

This decision has to be an individual one. Before you or your family decides to make these arrangements, check what you may lose in free services available to you in your Clinical Commissioning Group or local authority area.

There are many agencies now providing such services and working in co-ordination with the NHS. Unless you or your family have direct knowledge of a particular one, make sure that you only use a recognised agency where all staff have experience, CRB (criminal records) clearance, and that you fully understand the fees charged by the agency.

Health and Care Act 2022

The Health and Care Act 2022 aims to make it easier for health and care organisations to deliver joined-up care for people who rely on multiple services, improving health and wellbeing. It strengthens Integrated Care Systems (ICSs), clarifies accountability, and encourages partnership working across the NHS, local authorities, and voluntary organisations.

An easy to read guide can be found at www.england.nhs.uk/wpcontent/ uploads/2022/07/Easyread- Working-with

Health and Social Care Act 2012

The Health and Social Care Act became law and came into effect on 1st April 2013.

It introduced significant reforms to the NHS, including changes to commissioning, public health responsibilities, and regulation of services.

Factsheets about the provisions of the act can be found on the Gov.uk website at www.gov.uk/ government/publications/healthand- social-care-act-2012-factsheets