What's in the 'Your care' section?
- Your local pancreatic cancer specialist centre
- Healthcare team members
- How do I get a second opinion?
- Healthcare at home
- Homecare and social care
- Who do I contact in an emergency?
- What do I do if I have concerns about care?
- What are palliative care and supportive care?
- Thinking about your future care
There may be times when you need extra support if you are being cared for at home. Care workers can help with everyday care, including washing, dressing, or daily tasks such as cooking, cleaning or shopping.
NHS continuing healthcare
If you live in England, Wales or Northern Ireland, you may be eligible to have all your care arranged and paid for by the NHS. This is known as continuing healthcare. It covers care provided in any setting, including your own home or a care home. You may be able to get this if you are assessed as having long-term, complex health needs, which you need help to manage.
Your nurse, doctor or social worker will need to complete a checklist to see if you might be eligible. Depending on the outcome, you might have a more detailed full assessment. This can take time. If your health is getting worse quickly, you may be able to have a fast-track assessment. This would mean a care and support package can be put in place quickly. Ask the medical team if this is an option.
Several organisations provide more advice and information on NHS continuing healthcare, including:
- Carers UK
- Marie Curie
- Beacon (England)
In Scotland, this type of care is only funded by the NHS for people in hospital. It’s called Hospital Based Complex Clinical Care. Outside of hospital, you can apply for support through social services. Citizens Advice Scotland have more information on Hospital Based Complex Clinical Care.
Social services
If you don’t qualify for NHS continuing healthcare, you may be eligible for support from social services through the local authority.
Social services may provide support such as:
- care at home from care workers
- respite care or day centre care to give your family or carers a break
- equipment or adaptations to the home
- help with daily household tasks, such as laundry.
How can I access support from social services?
To get social services support, you will need to contact your local council. The GP or hospice can also help you organise this. Getting services can take time, so it’s a good idea to start the assessment process as soon as possible. There are two types of assessment they can do.
- A needs assessment is for the person with cancer. It will work out what care and support you need.
- A carers assessment will look at what support families or carers need. If you live in Scotland this may be called an Adult Carer Support Plan. In Wales, it may be called a carer’s needs assessment.
You can have the assessments done at the same time, or separately. Your family is entitled to have a carer’s assessment if they are providing regular, unpaid care. Your family can have this even if you have not had a needs assessment.
There is more information on the NHS website about care and these assessments. Carers UK also have more information on getting support from social services.
Based on the assessments, the council will decide whether you or your family member are eligible for any support. If so, they will do a financial assessment (means test) to see whether they can offer any funding.
What happens if I don’t meet the criteria for support?
If you don’t meet the criteria for support, the council should still provide advice about other support that is available. Ask if this isn’t provided. If your needs change and you need more or different care, speak to your GP or nurse.
If you do need to pay for some of your care, there are sometimes grants available from local charities. Ask social services for details of any in your area. For example, the Elizabeth Coteman Fund gives small grants to people with pancreatic cancer.
Private care
You may not be eligible for support from social services, or you may prefer to arrange and pay for support yourself.
You can arrange for paid carers through a homecare agency, or by employing a carer directly.
The social services department should be able to give you information about finding local services and care providers. The Carers UK website has lists of care organisations and reports on their services.
“Source services early and use them. It’s a very difficult disease to contend with. Everyone needs strength to deal with it and you need support to maintain this strength.”
May 2024
To be reviewed May 2027