A coalition of organisations for people with life limiting illnesses is calling for the introduction of a fast track system to put social care support in place quickly for people needing complex palliative care.

In evidence to the Scottish parliament’s inquiry into social care, the organisations say freedom of information requests show that across NHS Scotland in 2018-19, approximately 400 people died in hospital while waiting to be assessed for a care package or for care arrangements to be put in place.

They say, as a result, social workers received multiple complaints from families after their relative died in hospital – against their wishes – because they were waiting for a care package.

The joint submission from Hospice UK, the Association of Palliative Care Social Workers, Carers Scotland, Children’s Hospices Across Scotland (CHAS), Marie Curie, MND Scotland, Scottish Care and Sue Ryder says research published last year suggested 43% of older people assessed as needing substantial or critical care in 2018 had waited more than six weeks to get the care package they needed.

The group is telling MSPs that people who are terminally ill do not have time to wait, and a long delay means that by the time the package is in place, a person’s condition may have deteriorated so much that more care is already needed.

‘[People] want to live as fully and independently as possible to the end of their lives, however long that may be. They need a social care system that is proactive, flexible and responsive, which delivers joined up care that fully supports them, and those closest to them, when they need it most.’

The submission adds: ‘Sometimes families would step in and take their relative home and provide the care themselves until a care package could be put in place. But then they struggled to provide care and the person had to be readmitted to die in a hospital or hospice.’

In their submission, the group says the nature of the care that is given in people’s homes needs to change, with so-called ‘time and task’ commissioning replaced with ‘a person-led, rights-based, outcomes-focused commissioning process for adult social care.

‘Time and task commissioning is driven by cost, and has created a system that is too rigid and inflexible to meet people’s care needs, particularly the changing complex needs of someone with a terminal illness. It does not allow person-led care.

‘There are examples of people with a terminal illness having different carers for each visit, having 15 or 30 minute visits and being put to bed at 7 or 8pm because carers are not available later in the evening.’

The eight organisations say commissioning and procurement need to be focused on quality and person-centred outcomes, and ‘allow care providers the time and flexibility to support the holistic needs of each individual they are caring for’.

They also point out that care packages need to be routinely reassessed as the needs of people in the latter stages of their life can change quickly.

The detailed submission points the committee to a number of examples of what are described as ‘responsive, flexible, social care services that support people at the end of life in their own home’, including the North West Edinburgh end of life home care team and the Hospice@Home service from Strathcarron Hospice, ‘which provides personal care and emotional support to people at the end of life and their families, through a small team of healthcare assistants with specific training and experience in palliative and end of life care.’

The parliament’s health and sport committee has published 225 responses to its call for written submissions. MSPs are expected to start holding evidence sessions next month.