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My Care Matters blog - September 2018

My Care Matters blog

Why do we need Mycarematters?

Imagine facing the prospect of a hospital stay. What plays on your mind? A fear of pain, poor food, disturbed nights, being lonely, scared of an operation? Now imagine facing that as one of the 50%* of people in hospital with a cognitive impairment, unable to communicate your needs, ask for pain relief, unsure why you’re there, where your loved ones are and when – or whether – you’ll be back in your own home.

People living with dementia tend to have significantly worse outcomes than average as a result of a stay in hospital. They might stay in up to four times longer, have far greater risk of malnutrition and dehydration and are more likely to experience anxiety and confusion. Their chances of returning home are much less than for someone without a cognitive impairment. Dementia is unlikely to be the reason they are in hospital, but it is often the cause of them remaining there. It appears that when communicating is a challenge, it can massively reduce that person’s chances of a good outcome.

When researching how we might improve the experience of a hospital stay for people with dementia, I started to look into the issues that matter most to patients whilst in hospital. It turns out it’s not the medical care we are concerned about. We expect, and usually get, expert care for our medical ailments. What we feel we don't get enough attention for are the ancillary issues; these can generate such negative or positive emotions they have an impact on how successfully or otherwise we heal.

So if that’s a big deal for an otherwise generally healthy individual, again, consider this from the perspective of a person unable to communicate in the conventional manner. We might take for granted the ability to request our cup of tea or coffee just how we like it, explain that we’ve always hated baked beans since childhood or have very personal reasons for becoming anxious when someone attempts to remove our clothes. Without the ability to communicate, our quality of life plummets as those small things that can make such a big difference are unwittingly bungled by unknowing staff.

With this in mind, Mycarematters focuses on the non-medical information that people want to share, enabling people to create a profile online or, if they do not wish or are unable to use the internet, on paper. We are then asking hospitals and care homes to ensure that a person’s Mycarematters profile is on display and visible to all staff interacting with the person.

The Challenge Prize has helped us initiate evaluations of Mycarematters with Essex hospitals, care homes, carers’ groups and people living with dementia. It has also helped us to develop tools to collect, measure and analyse feedback and outcomes of those evaluations in all care settings.

We shall be using the data collected from these evaluations in Essex to improve the Mycarematters system and demonstrate to individuals, hospitals and care homes the difference that having a Mycarematters profile in place can make to the experience of caring and being cared for when communicating is a challenge.

We’d love to work with more hospitals, care homes and individuals (carers and people living with dementia) to help us refine and improve the service. If you would like to get involved, please contact zoe@mycarematters.org.

*Up to 50% of people in hospital at any one time have some form of cognitive impairment; in some wards the majority of patients have dementia.