People affected by dementia and carers’ experience of hospitals in Sussex

To feed into the development of the NHS University Hospitals Sussex five-year Dementia and Delirium strategy, Healthwatch Brighton and Hove were approached by the Head of Nursing for Dementia and Learning Disabilities (NHS University Hospitals Sussex) to gather people’s views about their hospital experience. This study explores people who are affected by dementia and/or their carers’ experience of hospital attendance – either as an inpatient or an outpatient. 

Five carers of people affected by dementia gave valuable insights into their inpatient and outpatient care in the Royal Sussex County Hospital (RSCH) and the Princess Royal Hospital (PRH). The age of the people affected by dementia who spoke to us, ranged from 75 to 89, and the age of diagnosis ranged from 1 to 5 years prior to the conversation. Three of the five people affected by dementia were men.

Overall, care received was considered good, as one person said, “7 out of 10”. 

Some made positive comments about the valuable time they spent with the consultant. However, others said that contact with the nurses was limited, and they rarely saw a doctor. There were also different views about whether sufficient adjustments had been made to the needs of people with dementia. 

A positive aspect of care was allowing the carer to accompany the service-user for procedures and to stay overnight if appropriate. A further common remark was having ‘everyday’ conversations with empathetic staff, just to acknowledge they were there and waiting. The food at the Royal Sussex was also complimented. For those with a variety of outpatient appointments, the experience at the PRH was considered to be a better experience compared to the RSCH. Also, having experienced the Emergency Department at both the PRH and RSCH, PRH was found to be “calmer and less distressing”.

In terms of concerns, there was insufficient reassurance as to why the service-user was in hospital, often without a careful explanation of what the care plan or procedure was. Some were not involved in the care decision. 

Negative comments were made about the RSCH in that it was too cold and with a distressing atmosphere at times. The PRH was said to have had poor signage, particularly if the carer was not accompanying the person affected by dementia. 

Being moved around the hospital was particularly distressing for those affected by dementia. 

There was one notable incident of poor-quality care related to a radioactive scan (at the RSCH). 

The long waits to be seen in the Emergency Department at the RSCH was also found to be difficult for patients affected with dementia. This was associated with confusion and agitated behaviour. Having a quiet, separate place to wait would have been preferable.