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Seeking online feedback in palliative care

Update from Care Opinion Scotland

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picture of Ben Simmons

On the 6th December it was great to welcome our palliative teams from across the nation for our second webex. Sarah led us through a really interesting discussion of the challenges around feedback generation.

Story tagging was discussed because some teams receive alerts about care experiences which are not directly about their team, because some palliative and end of life care is not clear from the story who delivered the care. We can work with this kind of challenge to target the right service as much as possible, but it is a challenge which is inevitable in acute services. We will be sure to contact teams where there is ambiguity about the service being talked about.

Who to ask

The first thing to acknowledge is that asking for feedback is not an easy thing to get started with, and it can take a bit of courage to get the ball rolling. One thing that helps is that as well as asking someone receiving care, you can also ask family, friends, and carers.

Some stories around care will be really challenging, and we highlighted one about someone feeling that their independence and ability to cope meant they were not receiving the care they should. But at the same time some of the positive feedback you get can be really insightful, and often about the little things that have a large impact. It is key to feel comfortable approaching all your service community sensitively and asking them to share their experience.

We know that there are lots of people who could give feedback, but we need to think about how exactly we do ask them when they are using the service. Different materials are available, and things like freepost leaflets can really support individuals without internet access.

Including Care Opinion in your existing literature can work really well, especially when you speak to it and describe the importance of people using it to share their experiences. One of the most powerful ways is to speak directly to people about how it benefits your service.

We then heard from some of the teams about how they were generating feedback.

How to ask

We ran through the materials available to teams and highlighted that in some cases we may be able to make bespoke versions, and that teams can print their own materials because our materials are available from our site.

Some teams don’t have a material refresh for a couple of years so integrating CO info on those materials is not possible, but they are attaching CO cards to leaflets and are hoping this will be impactful.

Rennie Grove have been adding our logos to documentation that goes out to people using the service, and integrating the Care Opinion message into the day-to-day ways of working. Other teams, such as United Lincolnshire NHS Trust, have a logo on their external website and use banners, and have been very innovative by including Care Opinion as the last question on their SMS Friends and Family tests.

One thing that is really important is to show that you are listening to feedback, and a great example was shown from Rennie Grove Hospice with a fantastic feedback board.

Image titleSeeing that other people have fed back is really great for generating further feedback, and this idea has been taken up by some teams, in a similar way to existing ‘you said, we did’ displays.

Similarly, teams can use their digital presence in the same way as a display board, using Care Opinion widgets and blog posts, and even staff articles. These can do a really good job of drawing people into the feedback process. Just like printed materials teams can embed Care Opinion logos on their public facing pages and encourage people to contribute. They can even include the story telling tool on their own sites so people can contribute there and then.

A great example of this promotion work is United Lincolnshire who shared their links with the rest of the teams in the webinar, and as a result were having more than 12,000 reads on some of their stories.

Some champions are already coming forward such as a physio at Rennie Grove, and these people can be hugely influential in embedding feedback as a way of working. Hospices with shops are trying to make the most of their shop staff by sharing Care Opinion materials in the shop premises.

Integrating Care Opinion with fundraising events is on the cards for one team because they are often well attended by bereaved families looking to share their stories, so we would love to see more of this.

When to ask

When thinking about the best time to ask for feedback it is a good idea to have a stock take of touchpoints.

First visits are often packed full of difficult conversations so it can be hard to include that, but day services are much easier for making a push for feedback. It can be key to build a relationship first before raising the topic of feedback about their experience. Of course, learning what works as different things are tried is essential.

One team mentioned that people joining their service were often in their final days of life or could be entering the department in a state of delirium, so choosing times is very difficult. It has been an awkward experience in some instances, and some families have felt that it is not a priority for them at that time, understandably.

There was a little concern about when it is appropriate to ask for more detail from family member experiences when a family member may have died. One really good way to handle this delicately is to say something like “now might not be a good time, but if you feel ready and able to discuss your experience further we would love to know a bit more”.

There was a question about whether people can feedback if they are not using the service, such as those people waiting to get onto the books when waiting lists are long. After all, that could generate negative feedback about the lack of access, and this was creating anxiety for some of the teams. We do publish stories like this, though each story would be judged on its own merits and tagged to the service where appropriate.

What next?

We were really happy to hear all the enthusiasm and creativity from the teams for generating feedback and can't wait for the next webinar where we can celebrate all the progress :)

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