Carer experience of discharge from hospital

Healthwatch Barnsley were commissioned by NHS England and Improvement to conduct 10 interviews with carers who had recently experienced the hospital discharge process for the person they cared for.  They interviewed 12 people between 17 December 2021 and 25 January 2022 and held a focus group of service providers.

The experience of the carers were very different with some feeling totally involved in the care and in the decision making while others were feeling left out and that their input was not needed or valued. The communication between the hospital and the carer was not always good.

All the carers were looking after a family member and the care had evolved over time. Because it is family who are supporting they do not see themselves as a “carer” and as such will not seek support or register with their GP as a carer. There is a need to look at the language used when trying to identify if someone has caring responsibilities to make it easier for people to recognise themselves and the work they do. There needs to be a better mechanism for people to be identified as a carer, either by themselves or a professional. Once identified they should be given information on the support that is available to them including benefits and assessments. This needs to be followed up by regular check-ins to see if the circumstances have changed and if the level or support needs to be re-assessed.

During the time reflected in this report there was clear challenges in accessing social care during the pandemic. Some carers were able to visit and others were unable due to Covid restrictions. All the carers were desperate to be kept informed and supported during the cared for persons stay in hospital. Where carers reported a poor experience this often related to communication about the discharge process and the frustration in accessing social care.

The carers spoke about not being prepared for the discharge and feeling ill equipped to deal with cared for person at home with no support in the first instance, in some cases this resulted in a re-admission within hours of the discharge. This could be improved by involving the carer in the discharge planning and setting clear expectations of when the patient is likely to be discharged and what support they will need at this point. It is important to check with the carer that they are able to provide the level of care that is required and provide signposting of where they are able to go for further support.

The findings from the interviews fed into work being undertaken to create a Carers Information Pack which will be available in Primary Care settings.