What can we learn from the RNLI and Mountain Rescue about how to put carers on the map?

by Sue Jackson

My husband used to do a lot of walking and scrambling in the mountains. He managed to get back into it after he had his head injury fifteen years ago, but since his more recent stroke six years ago, no matter how much rehab he’s done, he’s still not been able to venture up any significant hills. We used to have an annual trip to our home county of Yorkshire every year, plus a couple of long weekend trips to places where my husband could work on collecting Nuttalls (mountains over 2,000 feet). For a long time after the stroke, he coped with the loss of his beloved mountains by avoiding them — he wouldn’t go anywhere that had mountains that he would once have been able to climb, and he avoided watching programmes about them on the television. Then, about 18-months ago, we watched A Year on Blencathra on TV, and he clearly enjoyed telling me about his glory days on the mountains. Now we often watch programmes of people out walking in the hills and we’ve discovered a whole series of programmes about people getting into difficulties and needing to be rescued.

We were watching Mountain Rescue one evening when I noticed that the narrator kept mentioning that the people who provide the service are volunteers. Not only that, but I saw these volunteers working side by side with people from the emergency services who treat them with respect. Interested, I watched Saving Lives at Sea, to find the same thing happening — the narrator emphasising how the people from the RNLI who go out in all weathers are volunteers, and again, I saw them working side by side with emergency services who treat them with respect. Which got me thinking. Why is it not like that for carers?

I often attend healthcare appointments with my husband. His cognitive difficulties combined with white coat syndrome means he finds such appointments challenging and stressful. At the very least, he likes to have me there to record the consultation, but if he’s not been sleeping well or is very poorly, he can need help understanding what the healthcare professional is saying to him and asking of him, and he may need to be prompted about key elements of his medical history. However, on arrival at the consulting room, the healthcare professionals often greet me with, ‘Why are you here?’ delivered in that tone beloved of teachers who believe they’ve found an errant student in a corridor during lesson time. My husband finds it humiliating to have to explain that he has cognitive difficulties, and you can’t tell what his problems are simply by looking at him. It would help if there was a note on his medical records that says he needs support, but there doesn’t seem to be, so it’s left to me to tender an explanation which justifies my presence while sparing his blushes. This is often greeted with gale force sighing. And I’ve lost count of the times I’ve been told, “Fine, you can stay, but you have to sit over there and be quiet” in a tone more suitable for addressing a three-year-old armed with time, a pen, and proximity to a blank wall.

Of course, this means that the person in the room who knows how to provide the necessary support to my husband has been relegated to the role of observer. I often wonder whether if I was a sign language interpreter and the healthcare professional involved in his care wasn’t, would they still insist that I sit in the corner and watch while they waved their arms around, or simply spoke loudly and slowly to him. Of course not. Because a BSL sign language person would be considered to have some useful skills while a carer clearly isn’t considered to have anything useful to contribute at all. And yet, if we use the ‘brain as computer’ analogy, my brain often has to act as an external hard drive and occasional reserve device for his brain.

I also wonder if the dismissive behaviour I’m subjected to as a carer originates in the way that carers are perceived. I’ve noticed that there’s been an increase in calling family members ‘informal carers’. The Cambridge dictionary says that informal is defined as ‘not formal or official, or suitable for casual situations and people’. (That certainly covers the times when I’ve had to sort things out at night clad in dressing gown and slippers!) The European Centre for Social Welfare Policy and Research describes informal care as ‘care given to dependent persons, such as the sick and elderly, outside the framework of organised, paid, professional work.’ (I’m pretty sure they don’t mean it as such, but that acknowledges that I’m having to do this for free on top of my day job.) The UK Care Guide notes that ‘informal care is often essential for people with dementia and other cognitive difficulties to be able to live and work in their community’. So, it matters, but there’s something about the fact that it’s care provided by family members in the home that means it’s not acknowledged as requiring either skill or expertise. And yet, dealing with someone with a brain injury often requires both of those things.

As carers, just like the RNLI and mountain rescue volunteers, we’re on call 24/7 and we give up our time to help someone else to do something that they want to do or get them out of a fix. But volunteer isn’t the right description for what I’m doing either. I didn’t volunteer for this — I was dumped into it by healthcare professionals with no warning or preparation. On the telly, the RNLI and mountain rescue volunteers go on training programmes, but there is no training available for family members who take on a caring role for someone with cognitive difficulties following brain injury. They often have to self-educate which means they may not know the technical language of healthcare but that doesn’t stop them from doing the job. It’s not easy — it’s complicated, demanding and tiring. The UK Care Guide notes that, ‘informal caregivers might experience a lack of recognition for the complex care they provide’ what they don’t mention is that this is not only in relation to wider society but can also relate to contacts with healthcare professionals who really ought to know better.

Family members who find themselves in a caring role following their loved one’s brain injury need to be seen and recognised as an important part of the caregiving that the patient needs. Health services and wider society need to support family members in doing that role and recognise the time, skill and experience it takes. And healthcare professionals need to learn how to work alongside family carers in the same way that emergency services personnel manage to do with the mountain rescue teams and the RNLI lifeboat crews on the telly. If they’re going to be made to keep doing it, family members need to be included on the map as a key part of the pathway of care for those with brain injuries.