Lauren Roberts TEWV Join Dementia ResearchEarlier this week I visited Dr Chris Clarke and Lauren Roberts from Tees, Esk and Wear Valleys NHS Foundation Trust (TEWV), to catch up on their work. Chris and Lauren both play key role in the Trusts efforts share Join Dementia Research with all newly diagnosed patients.

TEWV is a large trusts, diagnosing around 3,500 people a year, covering a massive area across Yorkshire and the north east. The Trust has always supported Join Dementia Research, since their R&D Manager Sarah Daniel worked in our team in 2015. However, since they became an exemplar in our Embedding Research in Care (ERICA) Project, this has intensified. This project aims to understand how best to support patients to Join Dementia Research and share the findings to help more Trusts do the same.

Their Approach

TEWV have for some time employed a rather unique approach to delivery. Their memory clinic staff have used a mixture of promotional materials, and referred interested patients to the research team for special attention, which involves a home visit from one of the Trusts four ‘Research Assistants’. These staff are focused on study recruitment and delivery, and inform patients about Join Dementia Research and help them to register. However, with more than 90 referrals in the past two months, it is hard to keep up (on days assigned to this work, they generally manage 2-3 visits in a day), and cover a big area.

TEWV Join Dementia Research Advert on NHS Jobs

To help keep up with demand, the Trusts new idea is to employ a group of honorary staff / volunteers who will support the Research Assistants and reach more people. These new volunteers aren’t simply people pulled in off the street; rather, they will be properly recruited, trained, and supported. The work started back in early February. Following an advert in NHS Jobs, they received 15 applications and appointed 6 honorary staff volunteers following interviews. The role attracted a mixture of old and young, retired people, and others studying in areas where this work might be useful to a future career.

The appointed volunteers have all gone through the usual safety checks and are about to start their training. In addition to the usual staff induction, they will receive specialist training to enable them to support people with dementia, discuss research, and help them with the process of understanding and registering with Join Dementia Research. They won’t play a role in study recruitment like the professional research assistants. However, by April they are hoping to have a great new group of volunteers, who can deliver community talks, deliver materials, reach out to the community, and visit potential Join Dementia Research volunteers.

What do I think…

The main aim for us, is to ensure everyone gets good quality information, and the opportunity to Join Dementia Research. I think the idea of properly recruiting volunteers to support the work, is a great idea! After all, the charities have effectively been doing this forever! It certainly takes the pressure of NHS staff, and I can see how this ‘Honorary Research Assistant’ role could be community based (as planned in TEWV) or even based in the clinic, or moving between clinics. Clearly, there will still be work needed to coordinate and provide support, and guidance but, more help could made a real difference in reaching the 100,000 people who are diagnosed each year.

We will be keeping in touch with Chris and Lauren over the next few months, and sharing news of how this initiative progresses. Once they have more news, we will hopefully write this up as a case study for inclusion in the toolkit.

If you can’t wait for the case study, you can always drop Lauren a line to discuss their approach –

You can also find out about how volunteers are working with the NIHR Clinical Research Network in East Midlands, in a case study we published last year.

How are you helping patients Join Dementia Research?

You don’t have to be in one of our exemplar regions to have your work shared in our toolkit. If you are doing something that you really think works, and want to share with others drop me a line – we are always on the look out for new case studies, and to share ways you are helping patients to Join Dementia Research.