Being diagnosed as terminally ill is obviously a devastating time, and there are unfortunately many practical matters you will have to think about, including financial and legal matters and whether palliative and end of life care is free.
This article explains the difference between palliative and end of life care, and introduces some of the funding options available, including the newly-extended ‘special rules’ for certain benefits.
What is palliative care?
Palliative care is holistic care and support for people who have a terminal illness. It includes end-of-life care, which is for people closer to death and can be more specialist.
Palliative care
This is care for people who have received a terminal diagnosis. You can start to receive palliative care as soon as you get the diagnosis and for as long as you need it (this may be years).
Palliative care can also be provided for a terminally ill person’s loved ones, particularly emotional support and help to manage financial and legal affairs.
End of life care
This for people who are, or are thought to be, in the last year of their life, though some people receive end-of-life care for more than a year and others less.
Palliative care aims to minimise suffering, improve quality of life and care for a person’s physical, emotional, spiritual and practical needs as they approach death. This might include:
- Pain management
- Support with tasks the person can no longer do alone, such as washing or eating
- Home adaptations for any equipment, improved accessibility and to help the person to be more comfortable
- Therapy/counselling
- Visits from religious leaders
- Support to write a will, appoint a Power of Attorney or other legal matters
Where can you get palliative care?
Palliative care be provided by hospices, care homes, nursing homes, home care providers and hospitals.
Dr Paul Perkins, Sue Ryder Chief Medical Director and Consultant in Palliative Medicine, said: “Sue Ryder hospices provide specialist care to relieve symptoms and improve quality of life for people facing potentially life threatening illnesses. It is a common myth that hospices are gloomy places. In fact, they are calm and welcoming, with a friendly atmosphere and decorated in a more homely way than a hospital.
“As part of your care, you may be referred to your local hospice as an outpatient for services such as complementary therapy or day therapy. You may also go into a hospice for a short stay – for example whilst your healthcare team works to control a new symptom or see how you react to a new medication.”
Is palliative care and end of life care free?
Palliative care can be funded by the NHS, charitable organisations or privately.
You can get palliative care free
- In an NHS hospital
- If your care home or home care is funded by the local authority or other funding, such as NHS continuing healthcare
- In a hospice or if you receive hospice care at home
Dr Perkins said: “All Sue Ryder palliative and end of life care is provided free of charge for our patients.
“Our hospices are funded by a combination of statutory (government) funding and charity fundraising income. Sue Ryder only receives around one third of the money required to run our end of life care services from the government, which means that we are reliant on the generosity of our fundraisers and income from our charity shops to raise the remaining two thirds of the money.”
When you may have to pay for palliative care
- You live in, or move into, a care home and self-fund your fees
- You self-fund your home care (and continue to receive this care or more specialist private home care when you are terminally ill)
How much your care costs depends on your needs (specialist care can be more expensive), where you live in the UK and the care home or home care provider you choose.
What funding is there for palliative care?
There is funding available to those who are terminally ill to cover or pay towards their palliative care.
If you are interested in applying for any of the funding below, speak to your GP or the doctor in charge of your treatment.
NHS continuing healthcare Fast Track Pathway
You may be eligible to have your care fully funded by the NHS through NHS continuing healthcare.
Having a terminal illness is considered a ‘primary health need’ under NHS continuing healthcare’s eligibility criteria. It is also possible that you will be ‘fast-tracked’ to ensure that you get support as quickly as possible.
Usually, you have to have an assessment to determine if you are eligible for NHS continuing healthcare. This is a two-stage process that is carried out by a multidisciplinary team.
However, if you need to be fast-tracked due to your terminal condition deteriorating rapidly, an ‘appropriate clinician’ can make the decision as to whether you are eligible.
This could be the medical professional responsible for your diagnosis or other medical professionals involved in your treatment and palliative care.
You can find out more about NHS continuing healthcare funding here.
England: Personal health budgets
If you are eligible for NHS continuing healthcare under the Fast Track Pathway, and you live in England, you can choose to have your funding as a personal health budget.
This allows you more say in the care you receive and how you choose to spend your funding. For example, if you would like your palliative care at home, you can use your personal health budget to fund this and be involved in creating your care plan.
Scotland: Hospital based complex clinical care
If you live in Scotland and your care is complex enough that you must be in a hospital or specialist unit to have it, then you may be eligible for hospital based complex clinical care (HBCCC). If you are, your care will be funded by the NHS.
You will need to be assessed to determine if you have needs that require hospital-based care on an ongoing basis. Once you start receiving HBCCC, you will be re-assessed every three months to see if you still need it. If you are not deemed eligible, you can appeal.
The hospital you receive HBCCC in must be funded entirely by the NHS. There are also seven dedicated HBCCC centres in Scotland.
Special Rules for end-of-life benefits
There are ‘special rules’ in place for receiving benefits if you are terminally ill. If you are expected to have a year or less to live, you can be fast-tracked when claiming certain benefits. You will also likely receive the full amount.
Benefits that the ‘special rules’ apply to include:
- Universal Credit
- Employment and Support Allowance (ESA)
- Attendance Allowance
- Personal Independence Payment (PIP)
- Disability Living Allowance
You may also be eligible for Adult Disability Payment (this is replacing PIP in Scotland), Disability Living Allowance for children, and Carer’s Allowance.
Disabled Facilities Grant
If you need adaptations made to your home to accommodate your health needs, you can get these installed and funded through the Disabled Facilities Grant.
This is available in England, Wales and Northern Ireland; Scotland has the Scheme of Assistance instead.
Occupational therapist and physiotherapists can also arrange simple adaptations, such as hand rails and ramps.
To see if you are eligible, you can request a free home assessment for your local authority.
