Carer contingency planning: recommendations for integrated care systems


It is often said that all of us are patients at some time in our lives, but less often acknowledged that most of us will also be unpaid carers too. Carers UK research in 2022 estimates that as many as 10.6 million people in the UK may be unpaid carers (Carers Week 2022 research report). The General Practice Patient Survey suggests as many as 1 in 5 patients are unpaid carers, and the NHS Staff Survey that 1 in 3 NHS staff are unpaid carers.

The NHS Long Term Plan and People at the Heart of Care: adult social care reform make clear that identifying, recognising and supporting carers is a system priority. This includes supporting carers in emergencies; and for this carers need to make contingency plans.

For effective contingency planning, carers need to understand the benefits of making a contingency plan and what support is available; and professionals need to signpost people to support, have meaningful conversations with carers, know that a plan exists, and know when and how to call plans into action.

In 2021/22 NHS England supported integrated care systems (ICSs) to scope delivery of carer contingency planning, and the insight from ICS-led projects and recommendations from ICS learning, along with links to case studies, are outlined below. ICSs need to take steps to understand current provision in the system; determine routes for information sharing; train professionals; communicate what is available to both carers and professionals; and measure to determine impact.

We are grateful to the following ICSs and partnerships for sharing their learning: Greater Manchester Health and Social Care Partnership, North East London Health and Care Partnership, North West London Integrated Care System, South West London Health and Care Partnership, Surrey Heartlands and West Yorkshire Integrated Care System.

1. What is carer contingency planning and why is it important to integrated care systems?

An unpaid carer is anyone (child or adult) who looks 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; and are not paid for the care they give. The law is very clear about who is an unpaid carer.

The most recent Census 2021 estimates the number of unpaid carers at 5 million in England and Wales. When combined with Office for National Statistics census data for Scotland and Northern Ireland, the estimated number of unpaid carers across the UK is 5.7 million. This means that around 9% of people are providing unpaid care. However, Carers UK research in 2022 estimates the number could be as high as 10.6 million (Carers Week 2022 research report). The General Practice Patient Survey suggests as many as 1 in 5 patients are unpaid carers, and the NHS Staff Survey that 1 in 3 NHS staff are unpaid carers. This is likely to be an underrepresentation as many carers, especially working-age carers and those from vulnerable communities, are reluctant to self-identify as carers.

Early identification, recognition and support of unpaid carers requires strong collaborative working between health, social care and voluntary, community and social enterprise organisations, and is essential for contingency planning. Co-ordinated collaborative working for unpaid carers can be seen as an example, and even a barometer, of integrated cross-sector working within an integrated care system (ICS).

Ensuring that people’s care needs are met at home, including in a circumstance when their unpaid carer is not able to, will improve outcomes, prevent avoidable hospital admissions, and deliver NHS and Department of Health and Social Care (DHSC) strategic priorities, as a number of legal and policy documents outline.

Policy and legal context

The Care Act 2014 makes clear the duty on local authorities to:

  1. provide light touch early intervention services including advice and information
  2. assess risk
  3. provide a care and support plan to mitigate those risks
  4. provide a support plan for both a person with care and support needs and their carer.

Young carers should be identified and included in either the parent carer’s support plan or the person with care needs’ support plan. A parent carer is defined as an adult who provides or intends to provide care for a disabled child for whom they have parental responsibility.

The NHS Long Term Plan makes a clear commitment to carer contingency planning: “Up to 100,000 carers will benefit from ‘contingency planning’ conversations and have their plans included in summary care records, so that professionals know when and how to call those plans into action when they are needed”.

DHSC’s 2021 White Paper People at the Heart of Care states: “We will look to increase the voluntary use of unpaid carer markers in NHS electronic health records …by simplifying current approaches to data collection and registration. We will also introduce a new marker indicating the presence of a contingency plan, where one is available, that describes the actions to take if the carer is no longer able to provide care”.

National Institute for Health and Care Excellence guideline [NG150] Supporting adult carers makes clear the need to ensure that replacement care is discussed as part of carers’ assessments, including planning for any emergency replacement care that might be needed.

Public Health England’s findings from review and analysis of the GP Patient Survey made clear that caring should be considered a social determinant of health.

‘Unpaid carer breakdown’ is one of the nine conditions specified in the urgent community response national response standard for ICSs.

Carer contingency plans are for a situation where an unpaid carer cannot care and/or the level of care they provide for a family member or friend needs adjusting. Plans describe the actions to take in these circumstances.

Carer contingency planning is important as it can:

  • give unpaid carers peace of mind – in the event of an emergency, the carer can be confident that arrangements will be made in line with their wishes and those of the person they care for
  • prevent carer crisis/breakdown and with this crisis/admission for the person being supported, if actioned in a timely way
  • support the arrangement of replacement care
  • ensure ICSs use resources efficiently to support people with complex packages of care to remain living at home if that is what they want
  • enable more efficient and co-ordinated use of existing community-based health, social care, housing, and voluntary sector-based support services
  • catalyse future planning for carers.

For carer contingency planning to deliver the benefits above, it relies on health and care professionals having access to relevant information in the contingency plan when they need it.

“I – the carer – was the patient and my wife had dementia. The call was in the middle of the night and thankfully I was both conscious and able to move. There were three problems. Firstly, the paramedics couldn’t get hold of the social services emergency team to look after my wife. Secondly, the paramedics couldn’t get her into the ambulance, and I had to do that. Thirdly, although the hospital said they could look after her they simply couldn’t – they didn’t have the trained staff to look after someone who was likely to wander at any time. So again, it was me who had to be sure to stay awake and watch her. The one benefit was I went to the head of the queue for treatment so they could get us out!”

Unpaid carer, West Yorkshire Health and Care Partnership

Carers can be more prone to exploitation and abuse. NHS Safeguarding keeps health and care professionals updated on safeguarding and trauma-informed practice via our free NHS Safeguarding App (L1) and our NHS Safeguarding FutureNHS learning platform (L2+), and for those who are more professionally curious, our Safeguarding webinars and learning together weeks – NHS Safeguarding Workspace – FutureNHS Collaboration Platform (L3+) (login required).

2. Insight from projects

Contingency planning for carers varies within and between systems as:

  • unpaid carers can find it hard to consider ‘what if I cannot care’, but contingency planning support for carers is not consistently commissioned and/or provided; and where it is, the support to create and/or action a plan, and/or provide replacement care varies
  • contingency planning has different definitions locally – in some localities it includes planned for situations where a carer cannot care/needs care adjusting, and in others only the unplanned emergency situations when a service would action a plan
  • multiple contingency planning offers can sometimes be well-established in one system; this lack of standardisation in systems can mean professionals do not know where to signpost people to for support
  • relevant information is not routinely shared between partners within systems (local authority, NHS and voluntary, community and social enterprises) using existing mechanisms; as a result, plans are not always accessible when required
  • variable commissioning and provision arrangements makes it hard for systems to quantify how many unpaid carers have contingency plans, who holds the plans and the number of plan activations
  • the time it takes to support a carer at point of crisis and ensure continuity of care for the person cared for varies; if there is no contingency plan and replacement care needs to be put in place in a crisis, the cared for person can be placed in a setting that is not the best one for them.

“Feedback from the services highlighted that to support a carer at point of crisis, and ensure continuity of care for the cared for, can take up to 48 hours to organise and co-ordinate across the ICS, depending on complexity of needs. This can result in a cared for person being placed in a setting that is not best for them – for example, hospital, care home. Identifying ways to close this gap should be explored further with partners”.

South West London Health and Care Partnership

Case studies, carer stories and contingency planning templates can be found on the Commitment to Carers FutureNHS platform (login required).

3. Recommendations

A. Understand current provision in the integrated care system

1. Integrated care systems (ICSs) need to understand their current provision to support contingency planning, including commissioning arrangements, particularly where they have multiple offers at place and neighbourhood levels. Systems should work with their unpaid carers to ensure that the provision:

  • meets the needs of unpaid carers
  • delivers on NHS and Department of Health and Social Care strategic priorities, and meets legal duties (see policy and legal context box in section 1)
  • delivers the benefits of carer contingency planning outlined in section 1.

B. Determine routes for information sharing

2. Depending on how carer contingency planning is provided and/or commissioned locally, the level of information sharing required between organisations will vary. The Information Commissioners Office provides guidance on consent to support information sharing.

3. With appropriate consent the existence of a carer contingency plan can be recorded in the carer’s health and care record, including the summary care record, via the carer’s primary care record, and with this identified across providers and geographies.

4. For consistency in approach, a new SNOMED CT code has been published to indicate the presence of a carer contingency plan: 1366321000000106 Has carer contingency plan/Has carer emergency plan.

5. Guidance for primary care on coding unpaid carers has been published. As a minimum systems are expected to be able to report how many unpaid carers are registered in primary care, including 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.

6. A digital record-based approach to carer contingency planning is considered best practice to enable information sharing across an ICS. ICSs should engage IT teams to ensure that shared care records include carer identification and carer contingency planning.

“The links to health services provide valuable peace of mind”.

Unpaid carer, West Yorkshire Health and Care Partnership

C. Train professionals

7. Many carers are reluctant to self-identify as carers. To encourage them to do so – and with this access support – the right professionals need to ask them questions in the right way and in the right place. Working age carers and those from protected and health inclusion communities are especially unlikely to identify as carers. Professionals also need to recognise that cared for people are not always willing to identify who is providing unpaid care for them or the extent of support they are receiving.

8. Systems should ensure health and care professionals are equipped to broach conversations sensitively with a carer about situations where they may not be able to provide their usual level of care. They need confidence to talk about contingency planning, and an understanding that multiple conversations may be needed to get the outcome required.

9. Systems should ensure health and care professionals understand the value of carer contingency plans for unpaid carers and services, as well as know where to signpost carers for support with writing plans. Professionals should also understand what support offers are available to unpaid carers; otherwise, contingency planning conversations may be dominated by discussion of current unmet need for the carer and/or the person they care for, not planning for emergency situations when the carer cannot provide this care or a person’s care needs increase beyond what they can provide.

10. Systems should ensure health and care professionals know who to contact to action a plan, as appropriate across and within ICSs.

“Professionals need to approach these conversations sensitively, with a view that they may not reach the desired outcome straight away”.

Greater Manchester Health and Social Care Partnership

“Carers are under pressure with their day-to-day caring duties and considering the possibility that they may not be able to care for their loved ones can cause stress and anxiety”.

North West London Integrated Care System

D. Communicate what is available to carers and professionals

11. Systems should ensure that carers understand the benefits of planning ahead and for the unexpected by making a contingency plan, and what support is available for this.

“Almost all the professionals who participated in the review agreed that it is very important for carers to have an emergency plan. However, [only] just over half were able to identify some type of support that they provide in relation to this.

Those [unpaid carers] who didn’t have family close believed that there was little point in thinking about creating an emergency plan, because they didn’t know what they would put in it”.

North East London Integrated Care System

E. Measure

12. It is important that systems build metrics into their arrangements, regarding:

  • the number of plans within an ICS – SNOMED CT is an appropriate metric
  • the activation of plans
  • which carers have contingency plans in place to understand if access is equitable.

13. General Practice Patient Survey data that demonstrates the impact of caring, unpaid, is available for ICSs and primary care networks on the FutureNHS platform.

“The process of raising and talking about this topic with carers should not be perceived as a tick-box”.

Greater Manchester Health and Social Care Partnership

Publication reference: PRN00525