Talking Dementia: patient and carer views

Patient Opinion is working with South London Health Innovation Network (see here) to support the network's dementia and diabetes workstreams.  Do have a look at earlier blogs on this page to read more about the background.

Following up on the HIN Diabetes blog, here is a brief look at some of the interesting content: both postings and blogs are coming into Patient Opinion about dementia care. The Pilot sites are starting to produce some great stories from patients and from carers, that have important things to say about dementia care.

One story tells of a family having confidence that all staff are signed up to a discharge plan for a vulnerable relative, while another relative struggles to get important updates on her father’s care from the clinicians. A member of the Afro-Caribbean community wants more information for his family and community.

There are several stories that highlight the importance of joined up care from hospital to GP to home. One carer talks about being told to ring social services by the GP, but at a loss about how to get the help she needed. There are stories not just about the care but also the lack of information for patients, carers, and families.

Do have a look for yourself here:

Croydon Stories

At SLAM members of the service user and carer groups are also having a say about care.  See here for some feedback about dementia care:

SLAM Stories

You will see that postings have also been linked to local authorities and adult social care providers where appropriate. Patient and Care Opinion are integrated website platforms for feedback across health and adult social care. We would love the local authorities to respond as well as other stakeholders. The aim is to create a conversation about the things that matter.

 If you want to look at how much this reflects the issues raised nationally, then have a look at the many postings that are tagged on the site with dementia and integrated care.

Dementia Stories

As with the diabetes work, a big thank you to the volunteers and staff who helped to gather the stories on the sites.  Patients and carers on the wards at Croydon have had their say, with much good to say about the care and also some comments about things that could be different.

Also a couple of members of the groups have contributed longer stories about their particular experiences.  Have a look on the SLAM blog here for these fantastic accounts of the challenges of being a carer.

Please do respond to this blog post to let us know your thoughts about this initiative or the stories we link to here.