NHS continuing healthcare in Gateshead and Newcastle

Healthwatch Gateshead and Healthwatch Newcastle examined people's experiences of NHS Continuing Healthcare (CHC), a funding arrangement for adults with significant ongoing healthcare needs. The review drew on feedback from service users, carers, voluntary and community organisations, observations of assessments, information reviews and a survey of people who had recently been through the CHC process. The overall finding was that people often found the process complicated, difficult to understand and lacking in clear information and support. 

A consistent theme throughout the research was poor access to information. Many respondents said they did not receive enough information at either the initial checklist stage or during the full assessment process, leaving them unclear about how decisions were made and what CHC funding would mean in practice. There was also widespread misunderstanding about the financial implications of eligibility, with many people unaware that, if awarded CHC, all assessed care costs would be funded by the NHS.

Concerns were also raised about the assessment process itself. Families reported feeling excluded from decision-making, not being fully involved in checklist assessments and experiencing inconsistency in how assessments were carried out. Many respondents felt that the appropriate professionals were not always involved in Decision Support Tool (DST) assessments and some questioned how consistently the national framework was being applied. Feedback from voluntary sector organisations suggested that outcomes could sometimes depend on how knowledgeable or confident families were in challenging decisions. 

The review identified variation in discharge arrangements between Newcastle and Gateshead hospitals for patients waiting for CHC decisions. Some respondents reported delays to discharge while CHC assessments were completed. Concerns were also raised about children and young people transitioning into adult services, with evidence that referrals for adult CHC assessments were not always taking place within the timescales recommended by national guidance. 

The appeals process was another area of concern. Most survey respondents who answered this question said they had not been informed of their right to appeal an unsuccessful decision. Some carers described lengthy and stressful appeals processes, including cases where final decisions took years to resolve. Respondents also emphasised the emotional strain placed on families during what were often already difficult circumstances. 

Healthwatch concluded that improvements were needed in information provision, assessment quality assurance, hospital discharge arrangements, feedback collection and support for families. Recommendations included providing clearer and more accessible information from the start of the CHC journey, introducing greater consistency and oversight in assessments, ensuring people are informed about their appeal rights, gathering regular feedback from service users and carers, and strengthening procedures for young people transitioning into adult services.