Dying while waiting for care: Scotland’s shameful social care failure.

It has been an astonishingly busy week in terms of national media and much of it has centred around the injustices experienced by Post Office postmasters and mistresses and the political fallout from an amazing ITV drama. With such a busy media week it can often be the case that some stories are lost to attention and wider audience, and it is one of these which I want to focus on this week.

A few years ago, in 2006 the late MND campaigner Gordon Aikman used the Freedom of Information legislation which exists in Scotland to expose the sad reality and truth that there were many individuals who were deemed as requiring social care packages but who died before they were able to receive this support and care. There was understandably at the time an outcry and real shock when this truth became apparent to the wider public.

This past week the Times journalist Elysia Taylor-Hearn published an article on the back of a similar exercise which she and colleagues had undertaken. I was asked to comment on the results and did so by sharing one of the many stories which I am aware of.

The Times research showed that the number of people who died while waiting for a social care package (either in a care home or in their own home) had doubled in the last six years and that in 2022 a total of 632 people had died. (Indeed, this is unlikely to be the total given that not all areas reported data.)  At this present time in Scotland there are thousands of people who are awaiting a social care assessment.

In my experience and involvement in social care I have never known the levels of unmet need to be as high as they are now, and that is just the tip of the iceberg because in the last few years the level at which you are able to get support has risen and risen. The high level of eligibility means that there are hundreds more today who are not even on the waiting list for assessment who would have been on these lists a decade ago.

The last few weeks have seen a significant increase in the number of my colleagues who have spoken to me about the length of time it is taking to get an individual assessed and able to enter a care home, and the length of time it is taking to assess someone as qualifying for a package of care in their own homes. Shortage of assessment staff is one of the reasons as is their exhaustion, but the primary reason is the lack of financial resources to be able to pay for care and support the whole care system from assessment to delivery.

The statistics are terrible, and I would suggest a shameful indictment on the state of social care in Scotland at the present time. But what is more upsetting and inducing of anger is the fact that these are people not numbers; that behind every story of a delayed care package is a life limited and put on hold or indeed at its worst a life lost. This is horrendous for the person living with dementia or any condition that requires professional care and support, but it is an exhaustive nightmare for the thousands of family carers who are bled dry of energy and on the verge of their own breakdowns and health collapse.

I mentioned in the Times article the story of a 95 year old who had spent months waiting to be assessed and approved for a place in a local care home and had died before she ever got there but in truth hers is not an unusual story and it is heart-breaking for care providers and staff who know the level of support that someone is desperately needing to then discover that that person has died before they can be better supported and cared for.

This is a whole system failure. It is a failure to prioritise social care, to work with all partners towards the alleviation of need where it is happening – which is in our communities. It is a fruit of an obsessive concentration on the needs of the acute NHS, on hospital discharge primarily, at the expense of the health of the whole social care and health system. It is both the fruit of failed planning and perverse priority.

At the start of another year I fully expect to hear the mantra of ‘We’ve never invested as much money as we are doing’ – a truth which has a hollow echo when it is weighed up against the truth of people dying waiting to receive care and support. Okay we have never invested so much but it is clearly and obviously simply not enough or at best it is going into the wrong priorities and targets. The investment into social care is simply not saving the lives of the hundreds who are dying whilst waiting. And I cannot but also note another ‘quiet’ media story this past week which shows the current costs of the National Care Service (which to date has not made a difference to one citizen and their social care needs) are running at £800,000 a month.

We have to start to do things differently and better. Every day somewhere in Scotland nearly two people are dying without the care and support they need. That is shameful. It is evidence of the abandonment of social care provision and need. It is not reflective of a society that prioritises in the right way and that values all regardless of age or condition.

Donald Macaskill