Making the social care system work for terminally ill people: a simple solution

People applying for local authority funded social care can wait weeks to have their care needs and their financial means assessed. They can then wait even longer for their local authority to make a decision about whether they will provide social care. 

For terminally ill people and their families, the reality is that the current system is too slow. This situation is unacceptable and must change.  Delays in accessing social care can mean that people are unable to leave hospital. In some cases, they may die there while waiting for the social care package which would enable them to stay in their own home, their nursing or care home. Social care is vital for people who are terminally ill. It helps them to be where they want to be at the end of life. 

Good social care packages are also better for the health and social care system. Research from the Nuffield Trust shows that 27.8% of people with a terminal illness used local authority funded social care in the last year of life but, more importantly, that those using social care are far less likely to be admitted to hospital. Social care has an important role to play, both in keeping people out of hospital and getting them out once they end up there. 

However, the social care system needs to move much faster for people who are terminally ill. For people who are dying, and their families, time is precious. The last thing they want to be doing with that time is worrying about if and when they will qualify for local authority funded care and whether or for how long they can afford to privately pay for their care. 

Some local authorities already recognise this and they aim to fast-track people in emergency situations through the care needs and financial means assessments. However, not all local authorities do so and the reality is that there is no universal standard that determines who qualifies for fast-tracking. This is left at the discretion of the local authority, and often depends on whether they have a fast-track policy in place. 

In many ways, NHS Continuing Healthcare (CHC) is designed to address this situation. It has a specific fast-track stream for people who are terminally ill or ‘deteriorating rapidly ‘, which can mean that terminally ill people have a health and social care package put swiftly in place by the NHS. Again, however, because the guidance is interpreted in different ways in different localities, there isn’t a clear and consistent standard of who qualifies. 

By universalising the assessment of care needs and financial resources, the ‘Draft care and support bill’ goes some way towards simplifying the system and making it easier for everyone, including people who are terminally ill, to access the social care that they need. However, there is still no guarantee that people who are terminally ill can receive care and support as swiftly as they need it. 

For this reason, Help the Hospices and Marie Curie Cancer Care have proposed that the ‘Draft care and support bill’ should go further and place a duty on local authorities to provide combined fast-track access to care needs and financial assessments – ideally within 24 hours of the local authority becoming aware of the situation. We believe that this can be done by using an existing mechanism. At present, people who are terminally ill and have less than six months to live can receive instant access to the very highest level of welfare benefit through a DS1500 form, which is issued by the patient’s doctor (specialist). At the same time, the DS1500 could also be used to trigger a fast-track assessment of care needs and financial resources for terminally ill people. 

This will bring social care up to speed with the rest of the system – terminally ill people currently get instant and free access to healthcare and also receive benefits at the highest level with no qualifying period. This will mean that many more terminally ill people will be able to get out of hospital and stay out of hospital. 

This duty on local authorities would ensure that they assess the level of need of patients swiftly and rapidly put in place an appropriate care package. This very simple measure would mean that many more terminally ill people are able to access the care and support they need swiftly, and therefore be able to make the most of their time in the place of their choice with their families and loved ones.