Care Crisis at Christmas
Nick Kempe - 16th December 2022
Care crisis at Christmas – there is hope
Last week it was revealed that record numbers of people in Scotland were dying at home with cancer, a 39% increase compared to the four years before the Covid pandemic . Twenty years ago, that might have been interpreted as a success, a shift from people dying in institutions to dying in the community. Now it almost certainly reflects the crisis in the NHS which no longer has the capacity to care for everyone who is dying.
It has taken the Marie Curie foundation to blow the whistle. More people are dying at home, whether they choose to do so or not, many supported by primary health care but others not. The article reported the vacancy rate for District Nurses reached 30% in Lothian in June.
Even fewer of those dying are likely to supported by the care workforce for a range of reasons including staff shortages, lack of training and because sitting by someone whose partner is dying doesn’t count as a personal care task. It is not a priority. Because there is no data about the levels of unmet need among those dying at home, it requires critical analysis – informed by reports of what is happening on the ground - to work out the impact this is having. It is safe to say, however, that that many people are now dying at home with very little palliative care support and some in great pain – the opposite of what was promised by a National Care Service.
It might appear a facile truism but once dead, whether from cancer or Covid, people are unable to speak about the experience of dying. Making the Lived Experience central to the process of designing the NCS and many related areas of policy development, as the Scottish Government is doing, will only get us so far even though some carers might some day talk about what they have gone through.
Two weeks ago the Care Reform Group submitted a brief response on the Scottish Government’s consultation on a new dementia strategy. This “conversation” was entirely based on asking people about their lived experience, devoid of any analysis and lacking any information about current levels of services, unmet needs, the extent to which the objectives of the previous strategy had been met etc. Instead the consultation asked people a handful of questions such as “what does dementia mean to you”?
How the Scottish Government believes that people with even moderate levels of dementia could respond is unclear. Even if people with dementia could, what their answers might tell the Scottish Government is unclear. It is not that the “lived experience” of people with dementia (and many other conditions that impair mental capacity or mental health) is unimportant, but to work out what most are going through requires intermediaries and proper research, not cheap surveys.
Running parallel to its register of people with Lived Experience , the Scottish Government has created a stakeholder register and its NCS Design Team has been holding welcome sessions. The one I attended on behalf of Common Weal’s Care Reform Group was mainly attended by Chief Executives of voluntary organisations. After the presentation someone who was clearly concerned whether getting involved in the consultation was likely to change anything asked if there were any limits on what could be discussed. The response was very clear: finance, legislation and the role of Scottish Ministers was outside of the remit of the groups supposedly created to help the Scottish Government co-design a NCS. In other words everything that matters! You cannot discuss making any meaningful improvements to how people die at home without discussing resources (staffing), legislation (which prevents relationship based care, for example just sitting with someone while they die) or the responsibility of successive Scottish Governments for the crisis we are now in. To be fair, the NCS Design Team then retracted somewhat on the role of Scottish Ministers, though whether people will be able to discuss the extraordinary powers which they intend to award themselves, as set out in the draft NCS bill, is unclear.
Meantime the Scottish Government is still giving far more weight to the lived experience of people needing care, whatever their mental capacity or state, rather than the workforce. On Tuesday, the Edinburgh TUC made their third deputation in a row to the Edinburgh Integrated Joint Board about the crisis in care provision in Scotland’s richest city. Trade Unions and other campaigners have relatively little access to data but they do know the “lived experience” of their members and have been campaigning against 24 hour shifts. Having had no response from the EIJB to their concerns, this week they cited an example of someone being required to support a person with a learning disability in a single 41-hour shift over the Xmas period.
As care staff leave the care sector in increasing numbers, a consequence of low pay, no regard for their welfare, no respite following Covid and a lack of migrant workers to provide cheap cover, there is no-one left to care. The care crisis is entering a downward spiral in which the greater the staff shortages, the more those who can will leave.
The Trade Unions, who have called for a pause to the NCS Bill, are right. The Scottish Government needs to deal with the winter care crisis and resources before it deals with anything else. Ten days ago the Scottish TUC explained how the Scottish Government could raise £1.3bn by April if it had the will . The care workforce and those dying in misery at home deserve no less.
Common Weal’s Care Reform Group doubts the Scottish Government’s budget will grab the tax thistle this time round (this article was written before the budget was announced). The good news for the New Year, however, is that while the Scottish Government may have its head in the sand, increasing numbers of people understand that proper resourcing is a precondition for improving people’s lived experience and getting a new National Care Service right. Real change normally comes from below and enough people and organisations now appear sufficiently informed and concerned about the Scottish Government’s proposals for a NCS to force them to re-think their approach in 2023.