Access to social care for people at the end of life should be “fast and free” to tackle unacceptable delays in receiving care for people approaching death.
That was one of the key recommendations for government from a review into increasing choice of care for people nearing the end of life, carried out by palliative care experts and people with experience of end-of-life services.
Many people who gave evidence to the review reported delays in organising care packages for their loved ones because of the needs and financial assessments required to access social care.
“This can mean people staying in hospital unnecessarily, when they may want to be at home or in the community,” it said.
“Delays in organising care, or restrictions on it, when people are at the end of their lives are unacceptable and limit choice,” it added. “We advise that the government implement a clear policy to make access to social care for people at the end of life fast and free.”
Government uncommitted on free care
Care minister Norman Lamb has given his personal backing to free social care at the end of life but said in January 2014 that he could not commit the government to it until it had analysed evidence from eight pilots into reforming palliative care funding.
The review also called for £130m a year in additional funding to be made available by 2020 to make a “national choice offer” for end-of-life care. Of this, £100m would come from social care and be designed to increase service capacity and thereby improve choice in the way and setting in which end-of-life care is delivered.
The review team said this would allow for the establishment of round-the-clock community services for people nearing the end of life – another of its key recommendations – and enable a 20% reduction in the number of people who died in hospital.
They rejected on affordability grounds a more expensive option, costing £800m, to extend choice further, to the extent that the best practice outcomes in the National Institute for Health and Care Excellence’s quality standard on end-of-life care were met.
Care coordinators for all
The review also recommended that each person needing end-of-life care be offered a care coordinator to act as a single point of contact to help them navigate their way through the system and enable their choices to be realised. This could be either a social care or health professional, or a family member of carer, but the review stressed that the person would need to have the authority and expertise to deliver results for the individual.
People who wish to should be able to have their choices of care registered on an electronic palliative care coordination system, enabling their preferences to be shared between professionals. These systems, present in many but not all areas, should be made available in all localities and be accessible to social care, as well as health, organisations, the review recommended.
Lamb accepts recommendation on records
Lamb said that the government would accept its recommendation for everyone to approaching the end of life to have an electronic health record, which they could access and add to, that would be sharable between service settings.
He said that by April, 70% of clinical commissioning groups should be capable of using electronic records to share end-of-life care choices across the health and care system so people’s wishes can be respected.”
He added: “The government will work with organisations in the health and care system to consider this advice and enable a full response later this year. In the meantime, I can say that we fully support the Review’s vision that every person should receive care in line with their choices and preferences, and we urge local health and care organisations to work together to ensure that this is achieved for as many people as possible.”