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The partnership had the insight to make this role part of the executive team, alongside the clinical and managerial directors. They wanted someone who’d experienced a life changing illness or disability. I’m a former mental health service user. The role is about having the authority to support patient centred stuff to happen. I oversee work on improving patients’ experiences, patient and public engagement, self management support, and patient facing communication—things usually managed in different silos.

I don’t ‘represent’ patients but try to open the door for others. I’m not the one to turn to and ask, ‘What do patients think?’ Engagement is a collective responsibility. But I can help and make connections to make it happen. For example, we are developing a pool of patient partners—a people bank. We have agreed three CQUINS [commissioning for quality and innovation payment framework] with our clinical commissioning groups. They’re around pain service redesign, improving shared decision making, and outcomes that matter to patients.

Patient partners will co-design these improvement projects, as well as other engagement work within the projects (for example, focus groups). Soon we will also have patient partners on the multidisciplinary teams for our clinical pathways. We have to value people’s contributions, and patient partners will get support, training, and money: £150 (€180; $200) a day.

Patients aren’t there just to tell their story or to be ‘representatives.’ They are questioners, critical friends, helpers, supporters, advisers, and ideas people. Above all, they are equals. The first year has been about building relationships and getting systems and processes into place. There are tangible improvements too. We worked with patients and clinicians to improve appointment letters. We cut back the ‘shouty’ language implying, ‘We are really busy, you have to show up.’ We also added questions they might want to think about before they come in. Clinicians and patients both seem to like them.

We’ve experimented with an ‘opt-in’ appointment process. Jenny, a patient partner in redesign work, said that she usually had to ring up to change the appointment she was given or that we rang at inconvenient times. Early evaluation of a pilot phase shows we could save on over 3000 cancelled appointments, reducing inefficiencies, delays, and annoyance for patients.

We have also launched great work with local and national charities to develop self management support. I am working with clinical leads to get patient experience data to their multidisciplinary teams and to support conversations with patients about what to do with the data and how to improve things.

What gives me the most hope and joy is seeing relationships developing between patient partners, clinicians, and other staff. It’s not easy, but it is certainly worthwhile. Soon having a patient director will be the norm.

 

This article was published originally on The BMJ

To read David Gilbert’s blog go to futurepatientblog.com.

tagged in citizens, innovation, Sussex MSK Partnership Central

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