Mr Smith’s diagnosis came six years ago – inoperable brain tumour, prognosis of anything up to ten years – but it wasn’t until the CVA a few years later that he became so incapacitated.
The Smith family are coping with his illness as well as any family could. They have all the equipment their small terraced house can take: a hospital bed with a dynamic mattress, pressure relieving equipment, a commode on wheels, bath boards, perching stools and anything else the OTs can think of. Mrs Smith has steadfastly refused any care support. She has three sons, all of whom take turns helping their father in and out of bed. Mr Smith was referred by his GP to the Rapid Response as an NCH – Not Coping at Home – but no doubt if there was an acronym for In Need of Respite from the Physical and Emotional Strain of Caring for the Terminally Ill, the GP would have used that instead.
‘He just needs to see something other than these four walls,’ says Mrs Smith, catching the loose strands of her hair and tying them back in place. ‘Me too, probably.’
I finish the health screen and tell them I’ll be in touch with the palliative team to see what can be done.
I shake hands and leave.
I’ve been working in community health for almost a year now, but I still struggle to understand how all the different agencies interact. No doubt it’s simply a matter of funding. Who lives where, under what medical centre jurisdiction, which Commissioning Care Group and so on. What makes it even harder to figure out is that so much of what we do overlaps. There are specialties, of course – Palliative care being one – but people are sick for the same reasons, and often need the same treatment, regardless of the provider.
Still, Mr Smith is a palliative patient. It seems fair to assume that all aspects of his treatment would now fall to the Palliative team. So I make the call.
Eventually I get to speak to Wendy, one of the senior nurses. She’s a little abrupt to begin with – Who am I? Where am I calling from? – a friable quality to her voice that suggests things are as stressful there as they are here.
‘Yes, we’re aware of Mr Smith,’ she says. ‘Why have you become involved?’
I explain the situation, the fact that the GP referred them to us because they weren’t coping at home. I tell her that Mr Smith seems stable. His obs are okay. The family don’t want more care, as such. They just want a break.
‘A break? What exactly do you mean? Respite care? An In-Patient bed? I don’t think he’s there yet. Do you?’
‘I just think they’re all pretty exhausted and need a break.’
‘I don’t think you understand the situation,’ she says. ‘We’re bursting at the seams here. If his symptoms haven’t deteriorated there’s nothing we can do. I’ll talk to the District Nurses to see if they have any capacity to go round, but really, I’m sorry. We can barely cope with the patients who are actively dying, let alone those that are tired and need a break.’
‘I know you must be busy…’
‘Busy? About as busy as you, I should think! No-one’s got capacity for anything. I wish I could tell you differently.’
There’s a sense of her moving away from the phone to gather herself.
‘Hello?’ I say, after a pause.
‘Look,’ she says, coming back. ‘Leave it with me. I’ll speak to the DNs and figure something out. I’m not promising anything. Certainly not a bed. But we’ll talk to the family and find out what’s going on.’
‘Thanks for that.’
‘What did you say your name was?’
‘Thank you, Jim. I’m sorry I can’t be more positive.’
‘That’s okay. I know how it is.’
I think about the Smith family, how brilliantly they’re doing together, taking on so much of the burden of Mr Smith’s care. How much they’re saving the NHS in doing that. How they could just use a break.
I write out the bones of the conversation, and file the notes away.