Empowering Patients

Lancashire Care NHS Foundation Trust have become the first to achieve the Dementia 2020 Challenge objective that 25% of people who are newly diagnosed with dementia (in January 2019) registered on Join Dementia Research. This is due to Memory Clinic staff, led by Yvette Griffin (Team Manager at Fylde Coast Memory Assessment Service) and Laura Barnes (Service Manager at Fylde Coast Community Services), supporting their patients to complete Join Dementia Research registration forms in clinic. This initiative alongside sending out regular letters has proven to be one of the most effective ways in reaching patients.

Since April 2018 the Trust has been working with the NIHR Office of the National Director for Dementia Research, as a participant in the Embedding Research in Care (ERICA) Project.

Read the complete case study here

Fylde Coast Memory Assessment Service wrote to everyone who received a diagnosis within the past 12 months to offer them the opportunity to engage in dementia research by registering on Join Dementia Research as part of a new initiative piloted by Fylde and Wyre Coast Clinical Commissioning Group.

There was a 5% uptake, with more people registering on Join Dementia Research during the first 3 months following the initiative compared to the number who registered within the past year.

Read the complete case study now.

One NHS Foundation Trust in the North of England, has seen a substantial rise in the number of patients signing up to Join Dementia Research. Tees, Esk & Wear Valley (TEWV). This shift has increased since they have recruited a Research Assistant, Lauren Roberts, who’s role is to promote and recruit patients to Join Dementia Research.

She has spent the last eight months testing a range of different approaches and has identified one that is particularly successful – offering a home visit.

In 2016-2017, 818 people were recruited. Almost double the amount, compared to other trusts with a similar numbers of people with dementia, where they don’t make home visits.

When it comes to recruiting people into clinical trials and studies, the onus is often placed squarely with the consultant to ask their patients about involvement in research. However, in an environment where the consultation period is short, research can often slip off the agenda. However, this can be looked at from another angle, empowering the patient to take the responsibility for asking their consultant about getting involved in research. To do this, part of the clinical research network worked closely with a number of managers and service leads across their host Trust to investigate the possibility of placing a simple sentence about research involvement at the bottom of every outpatient appointment letter.