Caring for someone with a terminal illness

Seeking help with care

Caring for someone who is dying can present people with huge emotional and physical challenges. Getting the appropriate support at the right time is particularly important when facing the end of life. Experiences of the process of seeking help varied enormously among the people we interviewed. Some carers found they received help as and when they needed it without having to ask, whereas others felt they were left to struggle and fought hard to try to obtain the help they desperately needed.


Factors that affect the availability of help and support include entitlement to state benefits (see below), the number of care agencies in each locality, the condition-specific needs of the patient and carer and their personal attributes. An independent review of social care in the UK, published in 2011, found that there is little consistency and clarity in the amount of healthcare and residential help that people are entitled to; the current funding system was described as ‘confusing, unfair and unsustainable’. Money spent on care may vary between local authorities, which means access to care may depend on where people live. Some people were very aware of the amount and quality of help they received and how this compared with others and their own expectations. Keith felt he and his wife had received good care at home whereas he had relatives living elsewhere who had experienced poorer care.

Free care at home is available to people on lower incomes who have limited savings. However, people who did not fall into this category often struggled to afford care and felt disgruntled that they did not have this same access to care.

In the UK there are no clear guidelines on how carers can access help, and there is often a lack of communication and continuity between care agencies. Voluntary organisations and charities also provide support to patients and carers but people are not always aware of these. As a result many people we spoke to were confused about what help might be available to them and how to access it. Some people only found out by chance about certain kinds of help that were available. For instance, Savita was sleep deprived through attending to her husband at night and only found out that night time help was available from a remark made by a nurse, and Anne had been unaware that her husband could attend a hospice daycentre until chatting with a neighbour who was a hospice volunteer (see ‘Finding information’).

Health care professionals can provide information and advice to carers and may be involved in referring people to care agencies or coordinating the care provided by several agencies. The quality of care provided by individual healthcare professionals and the standard of communication between agencies sometimes helped or hindered people’s access to care. Una was happy that her husband’s doctor made sure they had access to all the services they needed. She said, “He hit all the buttons that the co-ordinator said you must hit. He linked with the community physio, with the hospice, with the speech and language therapist, and so suddenly we had all of these things happening. It was amazing.”
Carers often found that when they sought help outside normal working hours, such as weekends and bank holidays, they came across difficulties. For instance, Maggie’s husband’s transfer from the hospital to the hospice was delayed because it was the weekend. Some carers were reluctant to contact emergency services for fear that end of life care in hospital might be poor and their friend or relative might die there against their wishes.

Sometimes carers were forced to seek help when they themselves became ill and could not perform their usual duties. Roger (Interview 32) needed a hernia repair and was not able to lift his wife, so the practice nurse helped him find respite care for her in a hospice. A social worker arranged for Jacqui’s husband to be cared for whilst she was in hospital after having complications from a routine procedure. Another way of coping with this kind of emergency is to use the Carers Emergency Services available via many Local Authorities. This service allows carers to register a contingency plan in case they are unexpectedly unavailable to provide care, such as due to an accident. None of the people we interviewed discussed this service, which suggests that many people may not be aware of it.

Whether knowingly or unknowingly, carers’ and patients’ personal attributes may affect the way in which they seek help and their access to care. Carers who had a background in healthcare or had previously cared for other family members were often more familiar with the healthcare system and believed this knowledge gave them an advantage when seeking help. Sue and her sister had both worked in social care, which Sue believed helped them in accessing help for their father when they needed it.

Some people preferred to take on all caring responsibilities rather than seek help from other agencies or even friends. This may be because they had previous healthcare experience and did not trust the quality of care from others or they felt it was easier to care themselves than organise support. Jane wanted to keep care for her husband within the family and it took a long time for her to ask for help from friends.

Some carers said that the person they were caring for had been resistant to having help from outside agencies. This could make it very difficult for their friend or relative to get support, and mean that they were left with all the care responsibilities. Lynne asked a Macmillan nurse to make an unplanned visit to her mum because during planned visits her mum put on makeup and tried to come across as less ill than she was. Having help with personal care was particularly difficult for some people to accept. David (Interview 08) thought it was obvious his father needed personal care at home but both his father, and his mother as the main carer, were resistant to this. His father eventually ended up in hospital.

For further advice and tips on seeking help see ‘Finding information’, 'Financial issues' and ‘Messages to other carers’.

There are a number of benefits that people can apply for that can help with the cost of providing personal services:

Personal Independence Payment (PIP) is a benefit for people of working age (16-65) with disabilities (or those that are terminally ill) who need help with daily living activities or help getting around, or both. It has replaced Disability Living Allowance (DLA) for anyone making a new claim. PIP isn't based on National Insurance contributions and isn't means-tested. You can claim it whether you're working or not.

Attendance Allowance is a tax free and isn’t means tested. It is paid to people over 65, to help with the cost of their care or supervision needs, which should have existed for six months before claiming unless you are terminally ill and then you can apply straight away (under DS 1500 special rules). Any level of Attendance Allowance can increase your entitlement to Pension Credit, Housing and Council Tax Benefits, and health benefits, etc. You can get the benefit even if you live alone with no help. As long as any help or supervision is reasonably required you could still qualify for Attendance Allowance.

Disability Living Allowance (DLA) for children is tax free and isn’t means tested. It is for people looking after children under 16 to help with the extra costs of looking after a child who needs supervision or help with their daily or nightly care needs or has mobility problems. They must have had these difficulties for at least 3 months unless they are terminally ill and then you can apply straight away.

Some people may be eligible for Carer’s Allowance. It is dependent on whether you are receiving other benefits such as State Pension but it still might be worth claiming for as it can mean extra Pension Credit or Housing Benefit. To be eligible you must:

  • Spend at least 35 hours a week caring for a disabled/terminally ill person - you don't have to live with them
  • Care for someone who receives the higher- or middle-rate care component of Disability Living Allowance, either rate of Personal Independence Payment daily living component, or any rate of Attendance Allowance 
  • Not earn more than £102 a week (after deductions)
  • Not be in full-time education.


It is worth taking advice when apply for Carer's Allowance as state benefits paid to the person you look after can sometimes be reduced.

For more information see resources.

Last reviewed September 2014.
Last updated September 2014.

 

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