Into the void

How much is acted on, and where it can’t be, does the research sit in some sort of giant in tray waiting for ministers to return to office?

If it is, who prioritises which report is the most pressing and which should be read first, and on what grounds, and how much is discarded as out of date and no longer relevant.

And as the weeks and months tick by how many of the civil servants who used to be responsible for a particular area are still in their posts, or even in the same department?

Who knows.

What we can safely conclude however is that Northern Ireland’s long periods without government have not just stifled our ability to develop new policies and adapt to changing circumstances, they have also choked off much of the discussions we should be having about new ideas of how to do things.

This, by default, has become a place where the latest report which may well contain ideas which can transform lives, really is left to gather dust on a shelf, destined to remain unacted upon and in many cases unread.

That’s not to say that a good paper cannot have any impact. It is more that any impact is unlikely to be far-reaching. With no Programme for Government and no Ministers that is inevitable – there is no-one driving the ship of state, which is rudderless and drifting.

The lack of government creates a dilemma for the Third Sector, whose lobbyists are responsible for commissioning and disseminating many of the reports affected by the interregnum.

What should they do if and when we have one again? Some of their reports and insights will have been overtaken by events but many others will remain and perhaps grown even more urgent in the interim.

Perhaps this would be a good time to re-assess and prioritise key objectives, especially those based around important research which government has yet to act upon.

And in that re-assessment some will stand out as especially deserving of attention.

Reading through back issues of Scope there are many examples of findings that it would be tragic to lose sight of once a government returns.

 One example is research carried out by Marie Curie 12 months ago on the impact of loneliness on people and their carers at the end of life: experiences-of-loneliness-among-people-at-the-end-of-life-and-their-carers-in-northern-ireland.pdf (mariecurie.org.uk)

It is believed to be have been the first research project into the topic to be carried out in Northern Ireland, perhaps anywhere, given the scarcity of published material available.

Its findings are extremely disturbing. They suggest that loneliness has a deep impact at this most sensitive phase in our lives – causing people to withdraw further from social contact, experience worsening symptoms, even leaving them feeling they have nothing left to live for.

At the time it was published it was clear that this was not a report that could be left gathering dust. And doing something about it would not necessarily strain budgets and even if it did, not acting upon it would be unconscionable.

For whilst we, quite rightly, do all we can to ease the passage of the newly born, those reaching the end of their days can too often be left to make their final journey alone and apparently uncared for.

 In the year before the report was published 20% of the population of Northern Ireland reported feeling lonely at least some of the time – that’s around 380,000 people. The number does not appear to have been especially skewed by Covid,  it is just 3% up on previous years. It’s not evenly spread, with over 75s, females and those from areas of deprivation worst affected. And those with life-limiting illness are almost twice as likely to report deep feelings of loneliness than the general population.

The report was partly-based on a series of interviews with those working with the terminally-ill. Some of this material is heart-breaking.

One said: “One of the loneliest people I’ve ever met is a gentleman who’s living with a terminal illness and he’s in a nursing home. He doesn’t have very many family visitors. And the care staff, he knows they care and they come in and they do their tasks. But he’d just like, at some point, one of them to take five minutes and sit down and say: ‘how are you?’ and just have a chat with him. They just don’t have time. He understands that. But he’s very, very lonely.”

Loneliness also exacerbates physical pain. Another interviewee is quoted as saying: “I do think there’s an increase in symptoms, especially around pain and anxiety, because people don’t have the support of their family coming in. They don’t have that distraction. And symptoms are heightened and increased. There’s a sense of panic. And what might before have been a little niggle of pain when they’re surrounded by family distracting them and interacting with them and feeling supported, suddenly when they’re on their own, it’s seven out of ten pain, eight out of ten pain. It escalates things a lot more quickly.”

Carers for the terminally ill are often isolated themselves and consequently feel lonely, the absence of respite during pandemic compounded this problem still further, and many are still living with the effects today.

Addressing these problems need not be very expensive. Training health and social care staff to recognise the symptoms would be a start, as would implementing one of the report’s recommendations, that  Health and Social Care Trusts should deliver more befriending and companionship services for people living with a terminal illness and carers.

At the heart of this would be the recognition that for all our targets and measurements kindness is still important in care and should never be neglected, it should lie at the heart of the services we provide, especially to those close to the end of their lives.

The issue of how to combat loneliness at the end of life was not progressed. Elections followed shortly after the report was delivered and there has been no government since. It is just one example of research that needs to be acted upon when it resumes.  

These were not findings that deserve to be ignored, they point to urgent need and the longer we leave it the more people will face a lonely void in their final days.