Macmillan Information Centre and Care Opinion work together

It didn’t take much persuading for Dawn to agree to be interviewed about her ‘baby’, the Chesterfield Macmillan Information and Support Centre app. It has been clear from the very beginning that Dawn is a dedicated practitioner. The central focus of this wonderfully informative app is her patients, their families, friends and Dawn’s colleagues and staff.

Read on to discover how Care Opinion found it's way onto the app and how Dawn sees the future of the app and Care Opinion working together.

My name is Dawn Warrington. I am the lead nurse at the Chesterfield Macmillan Information and Support Centre.

The centre is a place of support for everyone, from before diagnosis, during diagnosis, support throughout treatment and after treatment has ended. Anyone can access the support centre from the person with the cancer diagnosis, to the carers, spouses, partners, and children. Many people are affected by the diagnosis of a loved one with cancer and they need support too. In addition, the app can be an information hub for my colleagues too. It really is ‘one place for everything’.

When Covid struck, the Information and Support Centre was plunged into lockdown along with the rest of the UK. It was during this two-month period of closure that our journey with the app started.

I had seen a version of this app used by another hospital, and I wondered whether the app could be developed even further and become even more supportive during the long periods of isolation and the midnight hours. The Covid lockdown enhanced this, and it became even more apparent that something digitally was needed, not to replace our centre but enhance and become an extension of it.

The app has since become a wonderful hub of knowledge and guidance where ‘everything is in one place’ and there have been over 850 downloads.

So where does Care Opinion fit into this? Placing it on the app was relatively easy. I met with Emma and Sarah from Care Opinion to discuss the logistics, the possibilities, and the placement of CO on the app. We decided the right place to start was in our ‘Welcome’ section. This is where we see a lot of activity.

Having Care Opinion available in the ‘Carers’ section of the app is really important too, as we support everyone affected by the cancer diagnosis. We really want to hear the voice of the carers too, as they sometimes get forgotten about and are undervalued in terms of the mental and physical loads they might be contending with. Hearing their voice is just as important.

Care Opinion is a space where those with a cancer diagnosis can share their journey, in their own words. It is a space we can learn from.

Initially I was little bit worried that using Care Opinion could be onerous, and felt concerned that patients might find this as ‘another thing to do’. People with cancer do get a lot of surveys, both local and national, and we want to manage this carefully.

Ultimately, though, it is about patient choice. Watching the videos explaining Care Opinion made me see it in a different light. It is different from the usual surveys. I can see how Care Opinion is a space where those with a cancer diagnosis can share their journey, anonymously, in their own words.

And it is a space we can learn from: even if the changes we make are small, they can have a huge impact. It can help us to look at something from a patient’s perspective. In addition, there’s the potential for boosting staff morale. I learnt that many of the postings are positive and I think this will help to keep staff on board too.

For me, I see Care Opinion much like the app. It is an additional platform to enable people to comment, suggest, question, and share both positive and negative experiences. I like how the response format isn’t as formal as PALS. Ultimately we all want to provide the best possible experience for our patients and those affected by their diagnosis. Having Care Opinion on our app is another way to maintain our high standards and equally is a space to learn from patient experiences and create changes where we can.

Our app can be translated into many different languages too. Care Opinion, watch this space!