Joomag test version | Hearing the carer’s voice

As an occupational therapy learner, Lisa Waight went on placement to a carers centre. Here she reflects on the challenges for healthcare professionals to identify and support informal carers, and offers some suggestions to overcome them.

Being a carer happens to you. You don’t really choose it. These are the words of a carer attending the carer peer support group I facilitated during my final year placement.

Anyone can become an informal carer, at any time, and at pretty much any age. An informal carer is someone who cares for others and is not paid by a local authority or a company (Carers UK 2024).

They can be a parent, partner, neighbour, co-worker, student, friend, sibling or child, who looks after an individual with a disability, long-term illness, mental health disorder, or drug or alcohol misuse.

Caring can involve different tasks, such as washing, dressing, toileting and giving medication, making sure bills are paid, or providing emotional support.

In 2022 to 2023, it was estimated that 8% of UK residents (5.1 million people) were informal carers. This is a 1% increase from 2021 to 2022. Females are more likely to be informal carers (9% of the UK population or 3.1 million women) than men (6% or two million males). Nationally, people aged between 55 and 64 years are most likely to be informal carers (Family Resources Survey 2024).

Caring can impact all areas of life, in both positive and negative ways. Caring can develop a person’s sense of personal growth, as well as deepening relationships and connections with the care recipients and others; carers can also help shape health service development (Pysklywec et al 2020).

However, carers often juggle caring with paid employment and childcare, which can have an impact on relationships and friendships. These factors impact occupational balance, leading to isolation and stress.

A survey completed by Carers UK in November 2023, found that 79% of those who responded reported feeling anxious and stressed, 50% said they were feeling lonely, and 22% reported that caring had caused them physical injury.

Financial hardship is common, which has not been helped by the current cost of living crisis. Taken together, carers face poorer health outcomes and health inequalities due to their caring role (Carers UK 2023).

The challenge of supporting carers

As occupational therapists, we are aware that carers are included within both the Health and Care Professions Council and RCOTs standards. However, are we as individuals and institutions doing enough to support the health and wellbeing of these people?

Carers might be providing care to service users 24 hours a day, seven days a week, implementing therapy plans, and filling in the gaps when services are closed, short staffed and/ or cut. It is in our best interests, ethically, morally and legally, to support carers.

A Carers UK survey in 2022 found that just over half of carers didn’t recognise their caring role until a year after they commenced caring. It is important to identify carers as soon as possible, as they might be missing out on vital support. Therefore, it is important for occupational therapists to assess the support given and received by service users, to gain an in-depth understanding of caring. If in doubt, ask.

Resources and support

Carers Trust co-production toolkit for professionals working with unpaid carers in health settings: https://bit.ly/3W81fQN.

Carer passport schemes: https://www.carerpassport.uk/.

Carers Trust: https://carers.org/.

Carers UK: https://www.carersuk.org/.

Carer’s Leave Act (2023): www.legislation.gov.uk/ukpga/2023/18

My placement experience

While on placement in a carers’ centre, I attended peer support groups and asked carers what they would want health professionals to know about informal carers. Some didn’t feel their status was valued by health professionals, or by the person/s they cared for. This led them to feel that their opinions were not given any weight.

In addition, some carers said that they didn’t want to be congratulated by healthcare professionals for the support that they were providing to service users; what they wanted was their own support, especially practical help, such as food bank referrals. Also, to have services that were as accessible and flexible as possible, for them and the service user, for example a choice of appointment times.

According to Carers UK

61 %

of carers report they need more support to look after their own health and wellbeing

Some carers would have liked peer support groups within the services that provided care for their loved ones, and for services to consider how they provide carers with information. For example, providing simple, more visual formats, rather than lengthy documents.

It is important to know what support is available to carers within the service, locally and nationally. This is vital in promoting carers’ health and wellbeing.

A source of support can be a carer’s centre, which typically supports carers from the age of five years and up. They seek to improve carers’ wellbeing and quality of life through signposting, training, peer support and activities and opportunities to connect with others away from their caring roles.

In addition, they aim to raise awareness of carers and their needs by influencing local and national policies.

Some carers would have liked peer support groups within the services that provided care for their loved ones, and for services to consider how they provide carers with information. For example, providing simple, more visual formats, rather than lengthy documents.”

According to Carers UK, 61% of carers report they need more support to look after their own health and wellbeing (Carers UK 2023). Occupational therapists are in a good position to be part of this support. We can build positive and meaningful relationships with carers and take a lead in providing a proactive approach to carers’ wellbeing and health.

Carers UK (2024) Carers Wales: Who are unpaid carers? Available at https://bit.ly/3BYebBE [accessed on 2 August 2024].

Carers UK (2023) State of Caring 2023. The impact of caring on: health , November 2023. Available at https://bit.ly/4gHfEeV [accessed 2 August 2024].

Family Resources Survey (2024) Family Resources Survey: financial year 2022 to 2023. Available at https://bit.ly/3Potw1x [accessed 2 August 2024].

Pysklywec A, Plante M, Auger C, Mortenson WB, Eales J, Routhier F, Demers L (2020) The positive effects of caring for family carers of older adults: a scoping review. International Journal of Care and Caring, 4(3): 349-375.

Words LISA WAIGHT , final year occupational therapy student at London South Bank University at the time of writing. Lisa is now working at South London and Maudsley NHS Foundation Trust [email protected]. With thanks to all the carers who contributed to this article

What can we do to support carers ?

There are lots of ways to support carers in our everyday working lives. Here are a few suggestions.

Educators:

Invite carers to share their experiences with pre-registration students.
Include carers when course planning: what would carers like students to know and learn?
Identify who is a carer within your student body and staff and offer tailored support.

Clinicians:

Consider including a goal or objective within your annual appraisal that includes the health and wellbeing of carers.
Find out who is/are the carer leads for your organisation.

Managers:

Consider including carer awareness training within inductions and/or mandatory annual training.
Find out who is commissioned to complete carers assessments (the local council might have been outsourced this).
Recruit staff to carer champion roles (a staff member who supports carers and acts as a contact point for information within the workplace).
Consider the needs of staff who are carers and be aware of legislation and entitlements, such as the new Carers Leave Act 2023.
Consider setting up a carer passport scheme www.carerpassport.uk/.
Include carers within the co-production of policies and services.

Everyone:

Locate your nearest carers centre/hub and investigate what they provide. Look into how to make a referral. Also, make a note of the contact details and share these with colleagues, other departments and a wider audience.
Know what services are available for carers within your organisation, local area, and nationally.
Be informed about new legislation and policies.
Encourage carers to inform their GPs that they are an informal carer, so they can access targeted support.
Establish who is a carer; ask service users who is involved with their care and whether they themselves are caring for others.