At a hospital appointment this month, I spotted a notice reminding people that only patients and carers were allowed into the building during the pandemic. Anyone who’s become a carer in the past decade might not remember a time when that notice would have omitted carers altogether; it’s a sign of real progress that hospitals now understand the importance of their usual carer to anyone needing that support. 

Some hospitals will understand that it’s not only people with a dementia diagnosis who might need their usual carer; many will realise that people with other conditions affecting cognition will have that same need. Butterfly Scheme hospitals should all have that understanding.

A very good friend of mine whose cognition has been affected by illness spent several months in hospital – not a Butterfly Scheme one – this year and there was no general recognition that she needed that external support. However, when her distress led to a refusal to cooperate at all with the staff, I was welcomed in and was able to calm things down very quickly; it’s just a pity that such a traumatic situation needed to arise before her distress could be alleviated.

That friend is now receiving care in a nursing home, whilst another friend was admitted at a very similar time to a residential care home. One friend had to face two weeks of quarantine when she was admitted, whilst the other was able to integrate from the first day. The first care home imposed the quarantine because the friend had come from a hospital; after all the issues in early 2021, they were ensuring there would be no Covid spread from hospitals. However, this time, the hospital was Covid-free and the friend had been tested – but we accepted, despite the distress caused, that safety was paramount. What was absolutely baffling, then, was that the day after quarantine was finished, the friend was wheeled to a coffee chain outlet for a celebratory trip out – somewhere that I personally wouldn’t have chosen to go, because of the crowding and lack of ventilation! This isn’t a criticism; I’m trying to demonstrate how guidance is being interpreted and applied in very different ways and how baffled we can feel by it.

Meanwhile, the friend in the other care home caught Covid within three weeks of going into care, probably via another resident whose family had passed it on whilst she was out on a visit. The home was absolutely brilliant at containing that outbreak to those two resident – and the friend responded well to excellent care – but this again shows how extremely difficult it is for healthcare and care organisations to strike a balance between any form of flexibility and safety.

So, back to hospitals. As always within the Butterfly Scheme, please ask to speak to a Butterfly Champion if there are any problems. You should be regarded as a valued part of the care team and your insight should be welcomed. Obviously, you’ll also be expected to take every precaution possible in order not to cause risk to your loved one, other patients and the staff themselves – but most carers will automatically want to promote safety anyway. By staying calm and talking things through, everyone can work within the guidelines and keep patients safe and happy.