Continuing healthcare

Healthwatch Lambeth conducted interviews with eight people between May and August 2022 to find out more about their experiences of applying for Continuing Healthcare (CHC)/Funded Nursing Care.

All respondents reported not knowing anything about CHC before the health event that required them to seek additional care funding. They said they would have welcomed more information prior to applying.

Most service users learnt about CHC funding for the first time through health and care professionals, who were responsible for completing a checklist which determines whether a service user qualifies for a full assessment. Not all respondents were able to speak clearly about the checklist, saying they did not remember it, or that this stage may have been completed without their knowledge. Respondents talked about their personal challenges of living with illness and disability. In the wake of life altering medical events, some had had huge changes in their caring responsibilities, requiring significant life and lifestyle changes; they described feeling overwhelmed with health and social care systems. The involvement of a professional they felt they could trust helped them feel more confident in the process and was key to the quality of their experience.

 Respondents who spoke about more negative experiences said the involvement of a single professional was not enough in all situations. For service users and/or their carers to be able to navigate the process, a good, well-established relationship to the professional and high-quality communication between all agencies is necessary.

Respondents expressed frustration at the difficulties in communication surrounding the CHC process, the lack of clarity on entitlements and procedures, and ongoing confusion about what CHC was even when the application process was underway.

 From the point of referral, receiving clear explanations of CHC, what the assessment would involve, and frequent updates on the progress of the application, were all factors for those who spoke about feeling informed, involved, and having their choices and wishes respected during the process. 

Staff sickness, absences and high turnover impacted communications. Respondents said they would like more to be done, if the professional dealing with their case was unavailable, to ensure they continued to receive regular updates.

This issue was further complicated as there was a lack of clarity about who was meant to be contacting applicants, and there was no clear point of contact for CHC queries and updates. 

Not being able to contact or communicate with professionals or teams more directly involved with CHC compounded issues around poor responsiveness from professionals elsewhere in the health and care system.

The quality of assessments and confidence in the process was closely related to several factors. These included whether respondents had received guidance notes prior to the assessment and an opportunity to ask questions; whether respondents felt clear about what was happening or would happen after the assessment; whether they felt listened to and whether they perceived professionals involved were familiar with their needs.

Waiting for a decision on the funding from the panel can be very stressful for service users and carers, and any delays prolong uncertainty. 

While many respondents had positive comments about the speed at which their assessments were arranged, their experiences on waiting for a decision from the panel was varied. Some respondents who experienced long waits described feelings of stress and uncertainty particularly around continuity of service provider, accessing a service provider they deemed more suitable and not knowing about what costs they would need to cover to ensure suitable and/or preferred treatment.

Many respondents were interviewed when they had only just had the funding confirmed. Some were clear about arrangements going forwards, but others still faced uncertainty over what care the service user would receive and what the CHC funding would cover. 

Many respondents appreciated the high quality of care they or their loved one was receiving and recognised CHC funding made this possible.

The timing of the interviews (in terms of the respondent’s journey through the process) meant most were unable to comment on experiences of attending reviews. However, the data showed frustration with seeing different professionals each year, creating uncertainty around whether they would continue to receive funding. The possibility of funding being reduced or removed at reassessment creates a high level of stress for service users, who may be put at risk as a result, with many unable to afford equivalent care packages.

The report contains nine recommendations.