Every year several charities partner together to raise awareness of the contribution that the millions of unpaid carers make to the UK every day. This year’s Carers Week (8-14th June 2020) aims to Make Caring Visible.
The relevance of this theme is particularly pertinent at the moment. The effects of COVID-19 has increased the number of unpaid carers in the UK to an estimated 13.6 million people (up from 9.1 million before the pandemic). To put this into perspective, this is over 11 times the NHS workforce. If this care was to be provided by the NHS, it would cost £136 billion.
Who are carers?
Carers UK defines being a carer as “someone who provides unpaid care and support to a family member or friend who has a disability, mental or physical illness, substance misuse issue, or who needs extra help as they grow older.”
Being a carer will often only be one part of their relationship and it is this complexity that means that carers can often struggle to identify themselves as a carer and therefore don’t seek the help and support they need.
Other reasons why people fail to identify themselves as carers can include:
- Caring responsibilities may be seen as part of their role as a parent, child, partner, spouse, friend etc. They may also prefer to self-identify as parent, child, partner etc.
- Some carers may not know or understand what a carer is. They may believe it is a paid role.
- Many carers still hold down full or part time employment whilst providing care for their loved one
- Some carers may not feel that they do very much, particularly if physical care is not part of their role
- The word ‘carer’ and its role does not exist in some languages or cultures. There may also be a taboo on discussing family issues with external parties.
- Some carers may be reluctant to disclose that they are a carer if they are caring for someone with an often-stigmatised condition, such as drug or alcohol misuse
- The language surrounding caring can imply a change in a relationship with the person they are caring for
- The role of a carer can develop slowly and they may not recognise that they are a carer
- They may be so overwhelmed by the demands of being a carer, as well as their other life roles, that they have little time to focus on themselves
- There may be a co-caring relationship, where both individuals care for one another; this is particularly common in older adults
- They may not live with their loved one
- Some carers may be reluctant to accept that help and support is needed.
They may be so overwhelmed by the demands of being a carer, as well as their other life roles, that they have little time to focus on themselves
Relying on self-identification may mean that carers miss out on the support that they need to maintain their health and wellbeing, dignity and independence. Local authorities have a duty of care to assess carers’ support needs under the Care Act 2014 but they may need help in identifying them. Healthcare professionals are in an excellent position to help, and the 2018 NHS Continuing Health Care Guidance recommends staff are proactive in identifying carers.
What can health professionals do?
There are several things that healthcare professionals can do to help identify carers:
- Make information for carers readily available. For example, the use of displays, leaflets, social media etc.
- Use every opportunity to identify carers, including clinic appointments, flu jab appointments, prescription dispensing and OTC sales, counselling and medication advice, medicines reconciliation, home visits, social care and other needs assessments, including admission and discharge assessments and planning meetings.
- Think about the language used. The word ‘carer’ may cause issues for some people – alternative questions to ask might include: ‘Do you look after anyone?’, ‘Do you support anyone?’, ‘Do you provide care and support for someone who wouldn’t manage without your help?’, ‘Is there someone providing you with support that is vital for you to be able to manage?’
- Some carers are reluctant to make links with formal services such as local authorities so make information available for volunteer groups
- Ensure any information is available in relevant formats and languages
- Include references to carers and their roles in any publications you produce
- Appoint a carers champion to share learning and good practice with other staff
- Engage with Carers Week.
There is local and national support that carers can be signposted to. Some local authorities may contract local charities to make assessments and provide support to carers, so it is useful to know what is happening in your local area.
There are a number of national charities that provide support to carers:
- Carers Week
- Carers UK
- Carers Trust
- Age UK
- Specific disease-related charities, such as Alzheimer’s Society.
Where to find more information
There are a number of resources that can be used to support your knowledge of carers’ needs:
- NICE NG150 Supporting Adult Carers
- eLfH – Supporting Unpaid Carers
- CPPE – The Learning Pharmacy – Supporting Carers (Designed mainly for community pharmacy but suitable for all team members)
- Macmillan – Identifying cancer carers
The opinions expressed in this article are those of the author. They do not purport to reflect the opinions or views of the UKCPA or its members. We encourage readers to follow links and references to primary research papers and guidance.
Competing interest statement:
The author declares: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.