Financial hardship at the end of life

• Individuals and carers often fall into financial hardship as a result of a terminal diagnosis.
• The effects of financial hardship are compounded when living with a life-limiting illness, caring responsibilities, or bereavement. This is also true of the reverse.

• Financial hardship prevents people from having choice and control at the end of their lives.
• Many caregivers experiencing financial hardship encounter conflicting priorities. For example, people may have to prioritise financial tasks, rather than spend quality time with their loved one.
• At the end of life, financial hardship causes anxiety and mental ill health for people at an already difficult time.

• The high cost of care can cause people to get into debt or deliberately refuse care.
• The cost of transport is a fundamental barrier to accessing crucial services or visiting loved ones at end of life.
• The costs associated with organising a funeral take a financial and mental toll on those who are bereaved.
• The cost-of-living crisis has increased the difficulties of living with, or caring for someone with, a life-limiting illness. This is also true of experiencing a bereavement.

• Access to financial and welfare support is highly valued by people with a life-limiting illness and their families. But, it is dependent on third sector provision locally available to people.
• The stigma around financial hardship can lead patients and carers to not disclose money worries or access services.
• The complexity of navigating the welfare system can make it exhausting and overwhelming to apply for support.
• Lack of information on social security and financial support often leads people to be unaware of what they are entitled to. And when people become aware, they often have to fight to receive the support.
• People experiencing financial hardship are less likely to advocate for themselves. They often need the support of professionals who have the time, energy and knowledge to advocate on their behalf.
• There is a disparity between the financial support available to people at different stages of their condition.
• The challenges of accessing social security and financial support disproportionately affect some groups. These include people who:
  • are of working age,
  • are not eligible for fast-track support,
  • have no recourse to public funds,
  • are not digitally literate,
  • have diagnoses that don't fit condition-specific support offerings.

• Financial hardship can cause people to live out their final weeks in inappropriate and unregulated housing.
• Losing a loved one can put people under financial strain that jeopardises their housing situation.
• The 'bedroom tax' and short eviction notice periods can force people into moving house following the death of a loved one.

• People who have experienced financial hardship throughout their lives are less likely to access support from their local hospice.
• It is important to offer truly holistic care rather than a 'clinical needs first' approach. This enables hospices to meet the financial and social needs of people facing financial hardship at the end of life.
• Hospice inpatient units are of value to people who cannot stay at home for social reasons.
• The current hospice funding model causes inequitable access to financial support from hospices. 

The Department for Work and Pensions (DWP) should introduce an Essentials Guarantee. This should include a legal minimum of support in Universal Credit. It should also include an independent process to regularly recommend this level of support.

The DWP and Northern Ireland Executive should urgently reform the level of Carer’s Allowance paid and its eligibility rules, as well as means-tested social security payments relating to carers. This should include:

• An increase in the amount given to carers which adequately values and supports them to continue to provide care and to look after their own needs. 
• An increase in the earnings limit for Carer’s Allowance, which is linked to the National Living Wage. 
• Extending the period during which bereaved carers receive Carer’s Allowance from 8 weeks to 6 months. 
• Providing additional financial support to carers of the state pension age, which is not means tested. 
• Additional financial support for those caring for more than one person.

The Scottish Government should set out a clear timetable for the introduction of its planned reforms to the Carer Support Payment.  This should include: 

• Extending the period during which bereaved carers receive Carer’s Allowance from 8 weeks to 6 months. 
• An increase in the earnings limit threshold. This should be increased annually in line with inflation.  
• Additional financial support for those caring for more than one person.

The Department for Work and Pensions (DWP) should enable people of working age, with a life-limiting condition, to access their state pension. Where needed, they should be able to access the Pension Credit Element of Universal Credit.

The Department for Energy Security & Net Zero should introduce an energy social tariff. This would reduce the energy bills of vulnerable and low income households.

The DWP should: 

• Increase the number of staff providing information and advice on social security. This would ensure they can meet the demand for advice and support. 
• Provide staff with training on the needs of people with a life-limiting condition, their carers and those experiencing bereavement. 
• Fully review the social security system to reduce its complexity and increase accessibility.

The Department for Work and Pensions should extend exemption from the Under-Occupancy Charge (bedroom tax) to a year (up from 3 months) after a bereavement.

The Ministry of Housing, Communities & Local Government, Scottish Government and the Northern Ireland Executive need to introduce new regulations to create statutory minimum standards for public health funerals.

The Ministry of Housing, Communities & Local Government, Scottish Government and the Northern Ireland Executive need to legislate to require landlords in private and social rented sectors to give at least 6 months' notice for an eviction when an original tenant dies. 

Local health systems across the UK  should ensure provision of a minimum standard of welfare and social security advice for people with a long-term condition, including people with a life-limiting condition, and their carers in their area.

Local health systems across the UK should: 

• Ensure flexible, easy to access, funded transport is available. People with a life-limiting condition could access this to get to appointments or services.  
• Provide funding that family and carers can access. This would pay for fuel, public transport and parking. It would allow them to visit loved ones in inpatient units, or drive them to appointments.
• Account for travel to and from local charitable hospices when examining and planning patient transport needs across their area.

Health and care services should: 

• Ensure health and care professionals ask about money worries at key trigger points. 
• Ensure health and care professionals have details of local financial support services to which they can signpost patients.

Primary and secondary health and care services should develop close relationships, and collaborate, with local voluntary sector providers, including hospices. They must have a good understanding of the variety of services they offer.

Hospices should:

• Collaborate with organisations who support people living in financial hardship. They could also train them on the needs of people with a life-limiting condition and their loved ones.  
• Consider bidding for funding for social security advisor posts that support hospice patients.  

Hospices should improve physical access to their services. This could include outpatient clinics/services and transport support to reach people who cannot travel to them.

Hospices should:

• Ensure their first assessments and triaging of patients include questions about social security payment eligibility and money worries. 
• Ensure their referral criteria and service provision take a truly holistic approach to palliative and end of life care. This would include social, financial and emotional needs.  
• Use population and service data to understand who they are and are not supporting. 
• Fund projects and roles within the communities they need to build links with.