NHS Reset: Make carers visible in Wales

Isolated, overwhelmed, burned out and afraid of ‘not doing it right’.

These are the words used by far too many unpaid carers to describe the impact COVID-19 has had on them.

Caring is an issue that touches the lives of most families. Wales is a uniquely caring country with the highest proportion of carers in any of the UK nations. 3 in 5 of us will become a carer at some point in our lives.

Unpaid carers can be anyone - young and old, from all racial, cultural and socio-economic groups, with varied sexual orientations, beliefs and support systems. They may be managing their own health conditions alongside coping with the changing and potentially increasing needs of the people they care for.

For too long carers have been under-acknowledged, under-remunerated and undervalued. In the context of healthcare, this is a missed opportunity to ensure good clinical decision making and to truly deliver against NHS Wales’ core principles.

Without the support of unpaid carers the health and social care system would collapse. Before the pandemic, research showed that 96% of care in Wales’ communities was provided by unpaid carers. We know that recent events have resulted in thousands of additional people becoming carers and an exponential growth in the amount and complexity of care they are providing. This is likely to increase given the economic vulnerability of the charitable sector, which provides much support and respite to unpaid carers.

Network Partners of Carers Trust Wales have shared numerous examples of how the pandemic has negatively impacted on carers:
 

• Alterations to the delivery of mental health services have left carers looking after loved ones in crisis with limited access to therapeutic interventions
• The cancellation of, or changes to, treatment have led to carers facing the stress of undertaking complex aspects of medical care
• Changes to pharmacy services to maintain social distancing and meet urgent demand has made it harder for carers to discuss appropriate use of medicines
• Limited access to non-urgent physiotherapy and occupational therapy services have in some cases reduced the mobility of the person with support needs substantially increasing physical demands on carers
• People are more reluctant to attend their GP or hospital with potentially life threatening or treatable conditions when early treatment is essential, thus in the long term people may be sicker and more at risk when diagnosed.

The fear of protecting loved ones from COVID-19 as lockdown eases leaves many anxious about what their future holds. Currently there is no evidence available that enables us to reassure people with certainty. The long-term physical and mental health consequences of COVID are also largely unknown.

Last year, Carers Trust Wales asked young carers to describe what their caring role entails. One powerful response was simply: “I hold mum when she cries”.

Today, carers across Wales are:
 

• holding people when they cry
• supporting them to die with dignity, at home
• giving treatment such as pain medications for those at the end of life which may cause distress or be seen to precipitate their loved one’s death.

Before the pandemic there was a growing focus on delivering more care closer to home. COVID-19 has accelerated this at a time when supporting carers to care well, whilst maintaining their own health and wellbeing, is more difficult than ever.

Caring is not easy. We know that a disproportionate number of carers experience mental and physical ill health and that they are more likely to be living in poverty.

Providing good, relationship-centred care, demands that we constantly challenge ourselves to understand the role of unpaid carers better and build stronger partnerships with them.

It’s also important to recognise that 1 in 7 of your colleagues is likely to be balancing their job with caring for a loved one. They too need your understanding and support. Many will not disclose this aspect of their lives as it is often seen as just something people do, many do not even consider themselves to be carers.

It is essential that we all have the role and value of unpaid carers on our professional radar and take responsibility for making sure that we recognise their amazing contributions during and beyond Carers Week.

Dr Sally Anstey is a Trustee of Carers Trust, a registered nurse and a Senior Lecturer/Researcher for the School of Healthcare Sciences, Cardiff University.