Diabetes UK is supporting the NHS Diabetes Programme with initiatives to involve more people with diabetes, or those at risk of developing it, in the improvement of services.

Diabetes UK has been supporting the NHS England North Regional Diabetes team on work with service users, commissioners and healthcare professionals to develop a strategy for involving the region’s service users in their Type 1 diabetes treatment and care and preventing Type 2 diabetes.

We spoke to Natalie Murray from the NHS England North Regional Diabetes team who explained how Diabetes UK is helping:

“With the support of Diabetes UK, we recently held a hugely successful service user involvement workshop as part of our North Regional Diabetes Engagement event, which provided an invaluable opportunity to combine professional knowledge and lived experiences that will now go on to form the backbone of the North region’s user involvement strategy.

“Twenty-five healthcare professionals, commissioners and service users joined us and a facilitator from Diabetes UK to establish a mutual understanding of what user involvement means to them and to explore possible ways that the barriers to user involvement faced currently can be overcome.”

During the workshop, participants were asked to score their view on current user involvement. The group gave scores from 0 (service users are not involved at all in their care and treatment and feedback is not sought) to 10 (care and services are designed with service users at the heart).

Natalie continued: “There seemed to be general recognition that there was definitely more that could be done, but that the desire to do so across the board was absolutely there.

“Interestingly, some staff placed themselves nearer the 7 or 8 mark whilst the majority of the service users placed themselves between 0 to 5 and felt that user involvement simply wasn’t good enough. This suggested that User Involvement may mean different things to different people.”

When asked what user involvement meant to them, participants reported that it means working in partnership with, and using the knowledge and experiences of, people living with diabetes or those at risk of developing the condition, including their family, friends and carers, to lead to real change and improvement in services.

Other definitions that came out of the session included collaborating and working in partnership with people with lived experience of diabetes and those at risk, providing opportunity for their insights, perspectives and ideas to lead to real change.

Bridget Hopwood, User Involvement Programme Manager for the NHS Diabetes Programme at Diabetes UK, who has been working in partnership with Natalie on this initiative and facilitated the involvement workshop, said:

“The service user involvement workshop was enlightening and invaluable in supporting the development of the user involvement strategy which really is key to the overall success of the service and better outcomes for service users, and those at risk of Type 2. .

“Lots of people would like to do more service user involvement, but for healthcare professionals and those in management roles, it can be hard to know where to start – that’s where we can help.”

Bridget added: “When we asked participants in the North about challenges in user involvement, ensuring representation was a common issue. It was also noted that, although there were some patient representative groups set up which were helpful, those groups needed to consider how to engage the non-engaged or ‘lesser heard voices’ who don’t actively volunteer to be involved.

“The group also agreed that good user involvement needs to be sustainable and become part of the culture – but that this in itself is another challenge. Solutions could involve educating staff about the benefits of user involvement or simply doing it more until it becomes the norm. It was agreed that the work to develop a strategy would be a good step towards trying to change the culture.”

Participants wrapped up the first part of the workshop by working together in groups to consider possible solutions to some of these issues which included empowering patients to feedback, identifying service user involvement as a priority and dedicating enough resource to it.

Service users were invited back for the second part to turn the feedback into action by creating a series of draft pledges to be considered as playing  a fundamental role in the creation of the user involvement strategy.

The proposed pledges for consideration:

• We promise to create a two way conversation, involving a wide range of age groups [and other demographics], making them feel valued, through feedback and cooperation.
• We will encourage and support user groups and ensure good communication
• We will involve existing user groups in helping us to produce and disseminate information and invitations to the general public to provide their views, and to give them the opportunity to participate.
• We will provide training around patient engagement for all NHS staff. Better communication including the use of social media to extend the reach.
• We will encourage and support user groups and ensure good communication.

Natalie concluded: “Plans are now being drawn up to hold a follow up workshop in December for service users and staff to continue the fantastic work on the development to date  and ways of overcoming the current challenges. We are also looking at developing an online questionnaire for service users who could not attend the workshop so their thoughts and feedback are taken into consideration”

“Next steps include developing key principles to support the North user engagement strategy and to continue working with Diabetes UK to finalise our North regional strategy.

To find out more about how Diabetes UK could support you in involving people with diabetes, or those at risk of Type 2, to improve care as part of the NHS Diabetes Programme or if you are interested in holding a similar workshop, visit www.diabetes.org.uk or email bridget.hopwood@diabetes.org.uk.

If you would like further details in regards to the follow up workshop taking place in December or further information about the Diabetes Programme in the North please email: england.diabetesnorthregion@nhs.net.