Carer's view: Standards of support

We are grateful to Kelvin for allowing his story and experiences to be featured on this blog.  SLAM is working with Patient Opinion and the South London HIN to help shine a light on dementia care. 

Carer’s groups

My experience as a carer looking after my mum who suffers with dementia has led to me being involved in carers groups across South London. These groups offer support for sufferers and carers, and allow me to and meet people in a similar situation. I wanted to say a couple of things about what I have found. 

Having being involved in discussions in four different boroughs in South London I have found that each one does things very differently.  This means that for us carers, how we get the information that we need and also how we access support is unpredictable. 

Standards of support

In one borough I have tried to get a dedicated carers line to make it easier for people to contact the right service to help them.  Until you become a carer, it’s difficult to imagine how challenging it can be to ask for help and to find the right people to talk to. 

When talking to other carers, it is clear people have experienced a big difference in how helpful and involved GP’s are when asked for support.  So my big question is - why is it so difficult to get similar standards of support and information across primary care and local authorities?

Personalised care

Another quick point is how important food is to us all, particularly the availability of appropriate food for different cultures.  I am from the Afro Caribbean community and have known a couple of people whose relatives have deteriorated in care homes through not having a choice of food that is familiar to them.  Again, this can’t be too big a nut to crack when we talk so much about personalised care. Let’s also not forget the basics that make such a big difference.

Kelvin