Two reports concerning unpaid carers were published this week. One on the needs of carers when it comes to the right to a break and another on the extend of the lack of support for carers to enable them to take that break.
There was a news article out this week that revealed that a large number of unpaid carers were being forced to neglect their own care due to their responsibilities. A survey carried out by Carers Scotland found that 41% of surveyed carers reported that they had missed or cancelled a medical appointment at least once last year due to putting the care of someone else first and ahead of their own needs. This includes 9% of respondents who reported missing major treatment like surgeries. Routine and preventative checks are also commonly being skipped or missed with more than a quarter of unpaid carers missing screening tests and around one in six missing vaccinations – either may contribute to worsening future health outcomes.
The principle reasons given for carers missing their own care is lack of support. One quoted individual who skipped surgery said they did so simply because they could not get enough supportive or cover care to allow them sufficient recovery time. Others have reported that they couldn’t fit things like GP appointments into the limited breaks they had when their charge was, for example, in day care.
Financial reasons were high on the list too and the number of people missing medical needs rises dramatically when carers are themselves experiencing financial difficulty (almost 20% of unpaid carers receive Universal Credit, of which more than 40% reported being in financial difficulty compared to 13% of carers who were also in paid employment – however more than half of carers reported reducing or leaving paid work due to care responsibilities).
It’s clear from this report that it is extremely difficult for unpaid carers to access cover or replacement care. The decision to provide unpaid care to a family member or a friend isn’t always purely a financial decision due to the unavoidability of other options. Carers, by definition, care about the wellbeing of their charges. But it is clear that someone reliant on Universal Credit and/or Carer’s Allowance (see my article on the UK budget about the welcome but insufficient changes being made to the latter) probably cannot afford to hire a carer on a permanent or maybe even on a temporary basis and so it is difficult to ignore the cases where carers are putting themselves at risk simply because they cannot afford another option.
Changes like a Universal Basic Income that is sufficient to meet the primary needs for both carer and cared for would help people to provide that care and to be able to not have to provide that care on an unpaid basis should another option be better for them. Increases to carer’s allowance to pay carers the equivalent of what it would cost to provide that care by another means could be an alternative, though one of the lessons we learned during our discussions around the National Care Service is that some unpaid carers see a fundamental philosophical difference between what they do and what a paid carer does and do not wish to see their care reclassified as “a job”.
But the report also makes clear that even when money is not the primary barrier, lack of access to care often is. It is proving difficult for carers to find the temporary care services they need to cover short breaks such as a couple of hours to go to a GP appointment, or to arrange a full day to give them time to rest, recuperate or to socialise, or even to arrange a longer term break like a few weeks to go on a holiday that they haven’t been able to manage for perhaps years. The shorter breaks in particular can be difficult as it can take multiple phone calls between multiple agencies and adds up to an administrative burden already much higher than the time required to go to the appointment that they already do not have time to attend.
One of the few things that fell out of the wreckage of the failure of the National Care Service Bill was the Scottish Government promising to ensure that unpaid carers have the right to a break from their care. An analysis of responses to their recent consultation on legislation for this also came out this week.
It’s a wide ranging consultation and the report is worth digging into in more detail than I can do justice here but one of the themes that comes out from it is that there is still considerable discussion to be had around what a “short break” is, what it is not and what it should be used for. Questions around what should or should not be considered a “short break” are well discussed in the report though with some surprising details like a fair consensus that, pertinent to the above, a carer attending a medical appointment should not be considered a “short break”.
This makes sense as the idea of a “break” is one that seems to be firmly about allowing carers to breathe rather than simply giving them time to do other essential tasks (other items on the exclusion list include time to do housework or paid work). The report does highlight that some of the exclusions suggested by respondents perhaps reveal a misunderstanding in the question being asked but it does highlight an underlying issue of lack of support.
“All of this would have been much easier with a National Care Service built on a local model using our blueprint for Community Hubs.”
The right to a break from caring is important for the wellbeing of the carer but the support structures required to provide for that right should not necessarily be overly prescriptive. It may lead to issues where a carer might be able to get support for a day off for a “prescribed” activity like a wellbeing retreat but then not be able to get the same support for an essential medical appointment because this isn’t considered to be “a break” even if the support needed is functionally identical.
This isn’t an easy problem to solve but I think it does come down to the highly individual needs both of the carer and the cared for. What a “short break” actually is may well be something that someone knows when they see it rather than something they can identify ahead of time.
I also foresee issues around how long it takes to arrange supportive cover for carers. The view from the consultation seems to be that around eight weeks is a reasonable lead time to find cover for a break but again that will not suit every carer or circumstance where short time frames, perhaps even crisis or emergency cover, are required.
All of this would have been much easier with a National Care Service built on a local model using our blueprint for Community Hubs. This would have meant having a drop-in centre in your community where you could discuss your needs in advance, plan resources around the need for breaks or to simply have somewhere to call in the event of a crisis.
We’ve always said that rights-based legislation is important in enshrining the basic and fundamental level of care that we should all expect to receive but that having a “right” is meaningless if there aren’t the resources in place to support that right, there aren’t the people in place to take responsibility for that right (or to take responsibility for that right being breached) and we don’t have the relationships to those people to make it all work when it needs to.
Unpaid carers do much more than they perhaps should have to in a world of a welfare state where society as a whole takes on a collective responsibility for the common weal and they do it with less than the reward or compensation than they deserve. I hope that the legislation for a right to a break reflects this in building a system that upholds that right, but also that that infrastructure can also help carers and the cared for in ways beyond this too. The ability to look after yourself and go to the GP might not be “a break”, but it shouldn’t mean that unpaid carers have to put their health on hold again just because politicians were more focused on meeting a promise than fixing the problem.
