Carers say it is the first few weeks when they are newly caring for someone just returned home from hospital that make all the difference to whether they feel able to take on a caring role. If during that time they are offered information, advice, help and support, they feel able to make an informed choice about how to tackle their new role. But what happens at discharge is critical to the success of the carer’s role in those first difficult weeks.
Take my friend. Her mother has been seriously ill and in hospital. She spent weeks in intensive care followed by the high-dependency unit before going onto an ordinary ward. Now, mother is coming home. Or rather she’s going to my friend’s home, with the dining room becoming a bedroom. There’s a toilet downstairs and they are trying to work out what to do about a shower or bath. They have a funny staircase, so they don’t think a stairlift would work.
When I went round there the other day I asked the questions: have you had the discharge planning meeting yet, so you can sit down and work out what will happen, how mum will manage, what level of care she needs at home and what help they can give her? And what about you? Have you had an assessment as a carer to see what help you need? Her answer was a blank stare.
I repeated myself and explained that if her mum was going to be discharged they should have a pre-discharge planning meeting and an assessment of both their needs. I explained how it was meant to support her so she could care and continue with her life. All this was news to her.
What astonishes me is how people slip through the net and are missed out of discharge planning. My friend is articulate, smart and sensible. She is assertive and won’t normally take no for an answer. She has spent most of the past six weeks at the hospital, sitting by the bed at first and helping out with her mother’s care. We live in a local authority area with excellent services for users and carers and no shortage of voluntary sector provision, although this is under pressure. She had assumed she would automatically get everything she needed without having to ask for it.
I sat down with her and she wrote a list of what she wants, what her mother wants and how she needs help with her family, her work and her home if she is to provide the lion’s share of the support her mother needs. She took this list to the hospital and asked to speak to the ward sister.
But what if I hadn’t been around? Maybe she would have been able to get what she needed eventually, but there’s no guarantee.