Skip links

Toolkit: Identifying & Supporting Carers in Primary Care

This toolkit has been developed to make it as easy as possible for you to embed carer friendly approaches in your surgery. If you have any questions or would like some guidance, please contact the Primary Care Engagement Team who will be very willing to support you.

Who are carers and why should you help them?

Graphic showing different people

NHS definition:  A carer is anyone, including children and adults who look after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.

You're a young carer if you're under 18 and help to look after a relative with a disability, illness, mental health condition, or drug or alcohol problem.

A young adult carer is 16-25 and will have particular considerations as they transition to adulthood, like going to university or moving out of home, and the implications for care at home.

 A parent carer is aged over 18 and provides care to a child with a special educational need or disability (SEND) for whom they have parental responsibility. 

Caring roles, responsibilities and experiences vary considerably and there is no minimum set hours or responsibilities that determine whether someone is a carer. The NHS does set eligibility criteria for its vaccination programme, which needs to be referenced.

At least 8% of the patient population are likely to be carers (Census 2021 identified 72,815 carers in West Sussex). See more carer census stats here. Many carers go unidentified and unsupported, so the number of carers is likely to be much higher.

In Sussex, unpaid carers have been identified as a ‘Plus’ population in our CORE20PLUS5 programme, because they experience health inequalities. There is increasing evidence that caring should be considered a social determinant of health (Public Health England, Caring as a Social Determinant of Health, 2021). The value of care West Sussex carers provide is £2.18bn per year. This equates to £6m every day.

Carers often go unidentified and under supported

It is well evidenced that caring can take a significant toll on an individual’s physical and mental health. Without early identification, caring can be an isolating and overwhelming experience.

  • 73% of people who are or have been carers do not identify themselves as carers.
  • 29% of people who did recognise themselves as a carer took up to 1 year from when their caring role actually started
  • Over a third of carers took more than three years to recognise they were a carer.

Physical and mental impact of caring

Carers are more likely to experience physical and mental ill-health compared to their non caring peers.

  • 61% of carers say that caring has had a negative effect on their physical health,
  • In 2021 the GP patient survey revealed 60% of carers reported a long-term health condition or disability compared to 50% of non-carers and more than 70% reported their mental health had suffered.
  • Since the pandemic, the number of carers providing significant care (over 20hrs/week) has increased by 42%
  • 71% of carers have contemplated suicide [O’Dwyer 2019]
  • 46% carers told us that they are missing out on socialisation due to their caring role. This situation has only worsened with the pandemic.
  • 29% of carers said they felt lonely often or always with 41% not taking a break in the last year. 51% of carers said that being able to take a break would help them feel less lonely.

What carers tell us.

In our own recent engagement of over 800 carers, the top 3 challenges carers said they face are:

  • Feelings of stress
  • Managing own physical/mental health
  • Missing out on socialisation because of caring

The cost-of-living crisis has had a devastating impact on some carers. In our survey, 59% of carers said they have financial worries. Many households need to keep their heating on due to the health condition of the person they care for, many carers have had to give up work or reduce hours due to their caring role.

“I can’t afford decent healthy food for myself as my priority is feeding the person I care for and there is not enough for both of us”

The toolkit, Supporting Carers in Primary Care has been developed in alignment with NHS England’s Quality Markers for Unpaid Carers and reflect the principles contained in NICE’s quality standard on supporting adult carers.

NHS England state that systems are expected to:

  • Report how many unpaid carers are registered in primary care, including the number of young carers,
  • and of those unpaid carers, how many have a carer contingency plan recorded in records so that professionals can action them when required.

Coding Unpaid Carers: SNOMED CT Oct 2022

CQC –

To tackle inequalities in health and care, CQC have developed measures to ensure they focus on specific areas in inspection. When CQC assess and report on quality, they will use the summary phrase ‘people more likely to have a poorer experience of care’. This covers people who are more likely to have poor access, experience, and outcomes in health and social care. Carers are a group considered to have a poorer experience of care.

 CQC look at how effectively carers are supported when we consider the key lines of enquiry:

CQC may ask questions about how practices support carers:

  • carers registers
  • holistic support needs
  • in-practice support
  • appointments and access
  • information for carers
  • awareness and culture

Identifying and supporting carers early – benefits to the carer

  • Improved wellbeing through earlier support for their caring, physical health, and emotional wellbeing needs
  • Better informed and connected to the support services available to them
  • Carers can be fast-tracked to preventive and low-level support, including wellbeing checks
  • Reduction in Carer/family crisis and breakdown

Identifying and supporting carers early – benefits to GP practices

  • Improved carer health and wellbeing could lead to reduced demand for services and a reduction in prescribing and associated costs
  • Identification and registration of carers makes it easier to offer practical things, like health checks, flu vaccinations and screening
  • Support for carers can lead to better care planning and more effective implementation of subsequent care plan

.

6 Pillars

We have focused on six pillars that underpin effective carer friendly practice in Primary care. If each of these are put in place, a GP surgery will have solid foundations on which to build good carer identification and support. We have developed a suite of materials and resources to make it as simple as possible for you to adopt good practice. Please contact the team if you have any questions or would like to book a discovery call.

A Carers Lead is a named person who is responsible for carers within a GP practice.

A carers lead is accountable for that GP’s Carer Offer and can develop standardised ways of working, and educate colleagues, to ensure that carers are identified and supported, as well as the person they care for.

Having a Carers Lead creates accountability, clarity and improves the efficacy of the systems set up to identify and support carers.

Naming a carers lead shows you are committed to identifying and supporting carers in your patient community, recognises the important role they play in supporting the person with care needs and seeks to redress the impact of caring on a carer’s health and wellbeing.

See example Carer Lead responsibilities here

See Top Tips for making an effective carers lead here

A third of carers take 3 years or more to self-identify, yet the implications of caring can be significant and enduring. Identifying them early can prevent issues escalating.

Ensure all staff are aware of carers including:

  • Who are carers and the different types of caring experiences
  • What things to look out for to help identify carers
  • How the GP surgery, carers and the person with care needs can benefit from early carer identification and support
  • What support your GP surgery offers to carers
  • How carers can access support from your surgery and Carers Support West Sussex

Some professionals can feel unsure about how to approach carers or a caring situation sensitively. Ensure practice staff are confident in engaging with patients who are carers, including young carers, young adult carers and their families.

Develop and communicate a Carers protocol so that all staff know how to identify carers and what to do once they have identified a carer.

Identify carers in your own workforce and ensure your HR policies support them.

  • Download our staff facing carer poster here
  • View an example carer protocol here
  • See carer definitions here
  • Good practice example: HR carer policy
  • See carer feedback here
  • Book onto our “Introduction to Carer Awareness” training. Training aim: build confidence in identifying carers, speaking with potential carers and understanding how to support them. Jan 24th 10.30am – 11.30am. Open to all primary care staff. Contact the Primary Care Team to register your interest here
  • Book West Sussex County Council free young carer online training for all professionals and volunteers working with young people. The aim of this module is to support you in developing a knowledge and an awareness of how to identify that a child may be a young carer and the impact that this caring role can have on them, and enable you to support them and their families effectively. It will enable you to gain an understanding of the work of the Young Carers Family Service and how you can access further support and guidance.
  • Book a Discovery meeting with the Primary Care Engagement Team. Aim: Review how you are currently identifying and supporting carers and consider how we could support you to implement Carer Friendly Practice. Contact the Primary Care Team to register your interest here
  • Incorporate carer awareness into mandatory training for all new staff

Nearly three quarters of carers do not identify themselves as carers.

Carers may be struggling and unaware that there is practical and emotional support available and tailored to reflect their individual needs. Having appropriate carer information in the surgery will help an individual recognise they themselves are a carer and inform them how to access support.

  • Download your digi board posters here
  • Download young carer leaflets and posters
  • Download Facebook and Website sample text
  • Use our monthly carers newsletter sample to communicate to your carer patient cohort. Request our latest copy by contacting the Team here
  • Request general leaflets and posters by contacting the Team here

A Carers register is a list or database that records which patients have unpaid caring responsibilities.

NHS England state “As a minimum, systems are expected to be able to report how many unpaid carers are registered in primary care, including the number of young carers, and of those unpaid carers, how many have a carer contingency plan recorded in records so that professionals can action them when required.” Read NHS England guidelines here

Knowing a patient is a carer allows you to:

  • Provide appropriate health support to prevent avoidable illness, including flu vaccinations, health checks, screening for anxiety and depression.
  • Route carers through to wider emotional and practical support via Carers Support West Sussex.
  • Ensure appointments are accessible to carers and the person with care needs, so that they can attend.
  • Plan for emergencies for the person with care needs.
  • Where appropriate and with consent, support the sharing of medical information with the carer, so that the person with care needs can be effectively supported.
  • Where appropriate and with consent, enable proxy access to enable a carer online access to organise appointments, collect prescriptions and see test results.
  • Ensure that referrals to secondary care include information about the carer.
  • Why it is beneficial to keep a carers register up to date here
  • Top Tips for an effective carer register here
  • Example registration and alert flowchart here
  • Sample carers registration form here
  • Sample text to use on your new patient forms to identify carers here
  • Good practice example new patient form here
  • Website sample text here
  • All-patient carer letter / e-mail here
  • NHS England SNOMED guidelines here
  • Read more about contingency planning here
  • Example text campaign to reach unidentified patient carers here

Creating a defined offer for unpaid carers recognises the important role they play in supporting a person with care needs, acknowledges they may face additional barriers to accessing health services themselves (and for the person they care for), and seeks to combat the potential negative impact of caring.

Decide what your GP surgery wants to do to support carers. Communicate the carers offer clearly and make it accessible.

A Carers offer could include:

  • Defined health support to prevent avoidable illness, including flu vaccinations, health checks, screening for anxiety and depression.
  • Accessible appointments for carers and the person with care needs, so that they can attend (including double appointments, virtual appointments (telephone and video consultations), home visits for carers (if they can’t leave person being cared for)
  • Emergency planning for the person with care needs in partnership with key partners.
  • Sharing medical information with the carer (where appropriate and with consent) so that the person with care needs can be effectively supported.
  • Enabling online proxy access (where appropriate and with consent) to improve carer digital access to medical information, consultation records, test results and improve organisation of appointments and prescriptions.
  • ensure that referrals to secondary care include information that the patient is cared for or a carer themselves.
  • Referral (with consent) to wider emotional and practical support via Carers Support West Sussex.

It is important to update records when a patient is no longer a carer.

  • See what carers told us
  • Example carer policy here
  • Use our carers offer checklist to determine your support package here
  • Download Facebook and Website sample text here
  • Use our monthly carers newsletter sample to communicate to your carer patient cohort. Request our latest copy here
  • Download sample carer / all-patient e-mails here

Carers Support West Sussex (CSWS) is an independent charity supporting over 30,000 unpaid carers living in West Sussex. We provide tailored information, advice and guidance, including benefits advice, emergency planning and carers assessments to enable carers to have more control over their lives. We run in-person and online support groups, operate a counselling service, and help carers access funding for equipment or activities to promote carer health and wellbeing.

Working in partnership with CSWS allows primary care partners to focus on the health needs of carers and route them to appropriate practical and emotional support through Carers Support West Sussex.

 

Other essential partners

Carers Support West Sussex have been funded by the Integrated Care Board to work with Primary Care partners and help identify and support carers.

Supporting Carers in Primary Care has been developed in alignment with NHS England’s Quality Markers for Unpaid Carers and reflect the principles contained in NICE’s quality standard on supporting adult carers. GP surgeries can use the evidence of this work to prepare for CQC inspection and show their commitment to carers.

Carers Trust lol with blue underline
nhs-logo
Trusted-Charity-Mark-Level-2