Organisation

North East and North Cumbria Integrated Care System

What was the aim/problem?

The aim is to put people’s lived experience at the centre of the ICSs involvement and engagement strategy, Within the new arrangements for integrated care, people and communities are expected to be at the heart of all decision making, with systems actively seeking out and listening to the needs and aspirations of local communities.

What was the solution?

People are sharing their experiences to shape health and care services in the North East and North Cumbria, as part of new plans by the integrated care system to work in partnership with people and communities. ‘Lived experience’ recognises the personal knowledge and impact of people who access health and care services such as those living with a long-term condition, disabled people or family carers. It might also be people who have specific experience of a health service such as maternity.

What were the challenges?

North East and North Cumbria Integrated Care System is the largest in England and is responsible for the health services of more than three million people across urban and rural areas, therefore it’s important to recognise and understand the range of different communities and ensure a consistent approach and unified ambition to engage and involve communities across all parts of the region.

What were the results?

The ICS involvement strategy highlights many local examples where services have been improved by people sharing their experiences. Members of the Gateshead Long Term Conditions Group have shared their extensive experience of managing a wide range of conditions including asthma, diabetes, heart conditions, thyroid conditions, after-effects of stroke, angina, high blood pressure and high cholesterol.

This was part of the Year of Care approach, an initiative that aims to support NHS practitioners to implement high quality personalised care and support planning for people with long term conditions.

• The group’s online events allow patients to discuss their shared experiences and are of huge value to clinicians, who get honest feedback about how their patients experience care in Gateshead.
• A patient survey carried out by the group across several GP practices led to nine practical recommendations to clinical leaders. This included sharing written results of routine tests prior to undertaking annual health reviews between the patient and clinician. Patients reported that having their test results enabled a more informed discussion.
• Clinicians learnt that patients with multiple conditions struggle to find relevant guidance and find it hard to work out the hierarchy of the good advice that’s available for individual conditions – something they are now working to improve.

Patient champion, David Hewitson said, ‘I think it’s important to involve patients from the start when trying to improve patient care. People with long term conditions are often very knowledgeable about their conditions and bring a wider practical experience of what it means to live with that condition. By working with clinical professionals and local NHS leaders, our group members were able to influence the content of GP annual reviews. My message to NHS leaders is clear, involve your patients in every aspect of the service, because together we can make services even better.’

Dr Becky Haines, GP Partner at Glenpark Medical Centre in Gateshead, GP Lead and Advisor for Year of Care Partnerships said: ‘To develop the Year of Care programme we worked closely with David and the Gateshead Long Term Conditions Group, to road-test the ways of working, to make sure it delivered a significantly improved service. Because of the valuable insights of the group, we were able to create a service which is highly valued by patients and clinicians alike. This is a great example of how genuine patient engagement can deliver excellent results for everyone involved.

What were the learning points?

• It’s important to feed back to people who have given their time to share their lived experience, so they can see how it has helped to improve services.
• Try and involve people from the start, designing survey questions for example? This helps make sure that people feedback on the issues that matter to them.
• Don’t just seek people’s feedback to understand what the issues are but also involve people in identifying the solutions.
• Capture the lived experience of health and care staff on the frontline.

Next steps and sustainability?

Deb Cornell, Director of Corporate Governance and Involvement, North East and North Cumbria Integrated Care Board said, ‘Often systems reach out to people when they must as they have a duty to engage; instead, we want to create opportunities for continuous involvement, building on strong existing partnerships but also creating new ones.

‘ICSs are strengthening how they work with people and communities. Continuing to listen to the voice, views, ideas and lived experiences of our communities will help us develop a culture of continual involvement and engagement embedded in commissioning and leading to changes in services for the better.’

Want to know more?

Email england.stcomms@nhs.net