Continuing Healthcare – Public and Staff Experiences

What we set out to achieve

We gathered feedback from members of the public who either personally receive, or care for someone who receives, Continuing Healthcare (CHC) funding, including those with a Personal Health Budget or Funded Nursing Care in a registered care home.

We also engaged with staff across the system who support the CHC process, with separate reports produced for public and staff perspectives

This engagement formed part of a wider programme of work involving Continuing Healthcare, Adult Social Care, and partner organisations across Lincolnshire to take a deeper look at the CHC journey.

The aim was not only to review processes, but to better understand the lived experience of those involved and help shape a system that is more personal, compassionate, and connected.

What we did

Between 23 October 2025 and 12 January 2026, we launched a county-wide public survey and received a total of 62 public responses and received a total of 42 responses to the staff survey.

Here is how we reached the public and staff:-

• The survey questions were co-produced with the Personalisation Team, Adult Social Care and the Continuing Healthcare Team.

• Questions were developed ensuring that we captured individuals, families, carers and staff experiences across the whole continuing healthcare pathway.

• Posters with QR codes and links to the survey were sent to a wide variety of individuals and groups including:-

• Primary care.
• Hospital trusts within Lincolnshire and out of area where patients may receive care.
• Lincolnshire County Council.
• Voluntary and community sectors.
• Community Connectors in Lincolnshire.
• Lincolnshire Care Association.
• Healthwatch.
• Public Health Officers.
• Distributed to groups from our extensive stakeholder database.

• The engagement was promoted through social media, newsletters and web-sites.

What you told us

• Many people were unclear about what CHC is and what they are entitled to, particularly Personal Health Budgets. Those who did have a Personal Health Budgets described it as very positive.

• Information before assessments was often poor or missing, with many people only learning about CHC during a hospital stay which caused confusion and anxiety.

• Experiences of the CHC checklist assessment were mixed; people valued being treated with dignity but wanted clearer explanations, more time and greater opportunity to share what mattered to them.

• The Decision Support Tool (DST) process caused the most dissatisfaction, with people feeling meetings were long, stressful and that their views were not always fully heard or understood.

• Communication about decisions and next steps was unclear, with many people unsure about outcomes, available choices or what would happen next.

• Most people were not meaningfully involved in care and support planning, and many felt their personal priorities were not reflected in plans.

• Awareness of how to make a complaint was low, and while some found the process easy, delays in responses caused frustration.

• Positive experiences were linked to good communication and compassionate staff, particularly GPs and multidisciplinary teams who listened and worked collaboratively.

These themes reflect a strong desire for a more transparent, person centred, and supportive CHC experience.

The difference it’s made

• Feedback has informed ongoing CHC process review with findings shared with the CHC Process Mapping Group.
• It reinforced the need for more person centred, compassionate care, prompting reflection and a move away from process driven approaches.
• Clear opportunities for improvement were identified, including better communication, clearer information and earlier involvement of people and families.
• Feedback has shaped practical improvement activity, such as pilots, training, simplified processes and improved communication materials.
• It laid the foundations for future co production with plans to involve people with lived experience through a CHC Co Production Group from 2026/27.

This programme of work is still ongoing so be sure to check back for more up-dates on how your feedback has made a difference.

What’s next?

Feedback from public and staff engagement highlights a shared commitment to delivering high quality Continuing Healthcare (CHC) in Lincolnshire, alongside clear areas for improvements. Moving forward, priorities include:-

• Enhancing communication.
• Strengthening personalised care.
• Improving co-ordination
• Providing targeted staff training.

The next phase will focus on turning insight into action through process review, task and finish groups, piloting changes and involving people with lived experience.

A CHC Co-Production Group will play a central role in guiding these improvements, supported by ongoing working group oversight, shared resources, and a system-wide culture of collaboration and personalisation.