Carer knows best… A blog by Miriam Martin

Summary

Many people are taking on more caring responsibilities for their relatives and friends who are disabled, ill or older and who need support. For Carers Rights Day, Miriam Martin, Chief Executive of Caring Together, looks at the role carers play at hospital discharge, why poor quality discharge can put the patient at risk and discusses what more can be done to support carers when patients return home from hospital.

Content

When it comes to the discharging of a patient from hospital, it should be a time of relief – perhaps a long-term condition or illness is under control or an operation completed successfully. However for many thousands of carers this is not often the case.

In more normal times, a period in hospital would have provided an opportunity for the close family friends and carers of a patient to become familiar with treatment plans, clinical staff and plans for discharge, as well as whatever rehabilitation and after care is needed.

Being able to visit the patient in hospital would have also provided opportunities to alert clinical staff to changes in a patient which only a close family member or carer would recognise. Even if that’s as a result of a sneaky look at the patients notes at the end of the bed! Although not always perfect, the carer was able to be a partner in the triangle of care between patient, clinician and carer.

In these times, and with the necessary Covid policies put in place, it has meant those relationships have not been developed; the ability to notice changes and ask and receive answers to questions has gone and even being able to make contact with the patient has been made more difficult.

The person who knows the patient best has in many ways been cut out of the conversation. This is even more problematic if the main carer is not the next of kin and if consents and permissions are not agreed ahead of admission.

This has then resulted in poor quality discharges from hospital, putting patients at risk and even more pressure on carers who then take the reins of providing physical and emotional care for the person they care for. The impact of this could be readmission, a worsening of the patient’s health and a negative impact on the health and wellbeing of the carer.

Nobody knows a patient better than the person who is caring for them, who often has been their carer for many years but may have also known them well long before they became their carer. Carers are all different, of any age and many are in education or work as well as often having other responsibilities – children, parents, as well as their own health needs. Many are not financially well off and and continue to provide care themselves often for 24 hours a day. Carers need to be resilient and problem solvers but caring is tough and everyone involved in a hospital discharge needs to recognise the carer as an equal partner so that a discharge is positive and doesn’t result in further harm to the patient or the carer.

In a recent Carers UK report on experiences of hospital discharges, only a third of respondents said they had been involved in the decisions about discharge and what care and treatment the person they care for needed. Only 21% agreed that they had been asked about either willingness or ability to care at discharge and only 20% were given enough information and advice to care safely and well.[1]

Imagine how this would feel if it were you?

We have heard first hand from carers about their experiences, the challenges they face and what support they need. An example is James’ story as a young carer. This highlights the challenges and frustrations experienced by James when it came to caring for his mother and reinforces the need for the main carer of an individual to be recognised as an equal partner in the discharge process regardless of whether they are the next of kin or not.

If you are involved in hospital discharge this is how you can help the carer:

• Ensure that carers are involved in all discharge planning conversations because they know the person they care for best.
• As well as being considered an expert partner, the needs of carers themselves also need to be considered before a patient is discharged.
• Provide carer awareness training for all health professionals to help them better identify and know how to ensure carers they come into contact with are supported.

Reference

1. Carers UK. Carers’ experiences of hospital discharge: Discharge to Assess model. 7 September 2021.

About the Author

Miriam has worked in the charity sector for over 25 years and joined Caring Together in 2018. Her previous roles included Director of Services at RNIB and Chief Executive for Action for Blind People, where she was responsible for services spanning the UK with a budget of £23m, 900 staff and 400 volunteers. Since joining Caring Together Miriam has seen first hand the incredible work that carers do every day which is often unrecognised and unappreciated. She is committed to doing all she can to change this.