Older people with social care needs and multiple long-term conditions

This guideline covers planning and delivering social care and support for older people who have multiple long-term conditions. It promotes an integrated and person-centred approach to delivering effective health and social care services.

# Recommendations
People using services have the right to be involved in discussions and make informed decisions about their care, as described in making decisions about your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity) and safeguarding.
Information provided to both people using services and their families and carers should be in a format that suits their needs and preferences. In particular, practitioners must identify, record and meet the information and communication needs of people who have hearing loss, sight loss or learning disabilities, as set out in NHS England's Accessible Information Standard.

# Identifying and assessing social care needs
Health and social care practitioners should consider referring older people with multiple long-term conditions to the local authority for a needs assessment as soon as it is identified that they may need social care and support.
Consider referral for a specialist clinical assessment by a geriatrician or oldage psychiatrist to guide social care planning for older people with social care needs and multiple longterm conditions:
whose social care needs are likely to increase to the point where they are assessed as having a significant impact on the person's wellbeing
who may need to go into a nursing or care home.
When planning and undertaking assessments for older people with social care needs and multiple longterm conditions, health and social care practitioners should:
always involve the person and, if appropriate, their carer
take into account the person's strengths, needs and preferences
involve the relevant practitioners to address all of the person's needs, including their medical, psychological, emotional, social, personal, sexual, spiritual and cultural needs; sight, hearing and communication needs; and accommodation and environmental care needs
ensure that if a person and their carer cannot attend an assessment meeting, they have the opportunity to be involved in another way, for example in a separate meeting or through an advocate (this is in addition to the statutory requirement for advocacy set out in the Care Act 2014)
give people information about the services available to them, their cost and how they can be paid for.
Advise carers of older people with social care needs and multiple longterm conditions about their right to a carer assessment, and assessment for respite care and other support (see the NICE guideline on supporting adult carers for recommendations on identifying, assessing and meeting the caring, physical and mental health needs of carers).
Recognise that many older people with social care needs and multiple longterm conditions are also carers, but may not see themselves as such. Ask the person if they have caring responsibilities and, if so, ensure they are offered a carer's assessment (see the NICE guideline on supporting adult carers).

## Telecare to support older people with social care needs and multiple longterm conditions
The health or social care practitioner leading the assessment should discuss with the person any telecare options that may support them so that they can make informed choices about their usefulness to help them manage their conditions, as well as other potential benefits, risks and costs.
The lead practitioner should consider, in discussion with the person, whether a demonstration of telecare equipment would help them to make an informed decision about it.

# Care planning

## Coordinating care
Ensure that older people with social care needs and multiple longterm conditions have a single, named care coordinator who acts as their first point of contact. Working within local arrangements, the named care coordinator should:
play a lead role in the assessment process
liaise and work with all health and social care services, including those provided by the voluntary and community sector
ensure referrals are made and are actioned appropriately.
Offer the person the opportunity to:
be involved in planning their care and support
have a summary of their life story included in their care plan
prioritise the support they need, recognising that people want to do different things with their lives at different times, and that the way that people's longterm conditions affect them can change over time.
Ensure the person, their carers or advocate and the care practitioners jointly own the care plan, sign it to indicate they agree with it and are given a copy.
Review and update care plans regularly and at least annually (in line with the Care Act 2014) to recognise the changing needs associated with multiple longterm conditions. Record the results of the review in the care plan, along with any changes made.

## Planning care collaboratively
Ensure care plans are tailored to each person, giving them choice and control and recognising the interrelated nature of multiple longterm conditions. Offer the person the opportunity to:
address a range of needs including medical, psychological, emotional, social, personal, sexual, spiritual and cultural needs, sight, hearing and communication needs and environmental care needs
address palliative and endoflife needs
identify health problems, including continence needs and chronic pain and skin integrity, if appropriate, and the support needed to minimise their impact
identify the help they need to look after their own care and support, manage their conditions, take part in preferred activities, hobbies and interests, and make contact with relevant support services (see section 1.5)
include leisure and social activities outside and inside the home, mobility and transport needs, adaptations to the home and any support needed to use them.
Discuss managing medicines with each person and their carer as part of care planning.
Write any requirements about managing medicines into the care plan including:
the purpose of, and information on, medicines
the importance of dosage and timing and implications of nonadherence
details of who to contact in the case of any concerns.For more information on managing medicines see the NICE guidelines on medicines optimisation and managing medicines in care homes.
Develop care plans in collaboration with GPs and representatives from other agencies that will be providing support to the person in the care planning process.
With the person's agreement, involve their carers or advocate in the planning process. Recognise that carers are important partners in supporting older people with social care needs and multiple longterm conditions.
Ensure older people with social care needs and multiple longterm conditions are supported to make use of personal budgets, continuing healthcare budgets, individual service funds and direct payments (where they wish to) by:
giving them and their carers information about different funding mechanisms they could use to manage the budget available to them, and any impact these may have on their carer
supporting them to try out different mechanisms for managing their budget
-ffering information, advice and support to people who pay for or arrange their own care, as well as to those whose care is publicly funded
-ffering information about benefits entitlement
ensuring that carers' needs are taken fully into account.
Ensure that care plans enable older people with social care needs and multiple longterm conditions to participate in different aspects of daily life, as appropriate, including:
selfcare
taking medicines
learning
volunteering
maintaining a home
financial management
employment
socialising with friends
hobbies and interests.
Ensure that care plans include ordinary activities outside the home (whether that is a care home or the person's own home), for example shopping or visiting public spaces. Include activities that:
reduce isolation because this can be particularly acute for older people with social care needs and multiple longterm conditions (see section 1.6)
build people's confidence by involving them in their wider community, as well as with family and friends.

# Supporting carers
In line with the Care Act 2014 local authorities must offer carers an individual assessment of their needs. See the NICE guideline on supporting adult carers for recommendations on identifying, assessing and meeting the caring, physical and mental health needs of carers. Ensure that carer assessment recognises the complex nature of multiple longterm conditions and their impact on people's wellbeing.
Check what impact the carer's assessment is likely to have on the person's care plan.
Support carers of older people with social care needs and multiple long-term conditions to explore the possible benefits of personal budgets and direct payments, and how they might be used for themselves and for the person they care for. Offer the carer help to administer their budget so that their ability to support the person's care or their own health problems are not undermined by anxiety about managing the process.
For recommendations on helping carers to access support services and interventions, including carer breaks, see the NICE guideline on supporting adult carers.

# Integrating health and social care planning
Build into service specifications and contracts the need:
to direct older people with social care needs and multiple longterm conditions to different services as needed
for seamless referrals between practitioners, including the appropriate sharing of information
to make links with appropriate professionals, for example geriatricians in acute care settings.
Ensure there is communitybased multidisciplinary support for older people with social care needs and multiple longterm conditions, recognising the progressive nature of many conditions. The health and social care practitioners involved in the team might include, for example, a community pharmacist, physiotherapist or occupational therapist, a mental health social worker or psychiatrist, and a communitybased services liaison worker.
Health and social care practitioners should inform the named care coordinator if the person has needs that they cannot meet.
Named care coordinators should record any needs the person has that health and social care practitioners cannot meet. Discuss and agree a plan of action to address these needs with the person and their carer.

# Delivering care

## Providing support and information
Health and social care providers should ensure that care is personcentred and that the person is supported in a way that is respectful and promotes dignity and trust.
Named care coordinators should review people's information needs regularly, recognising that people with existing conditions may not take in information when they receive a new diagnosis.
Consider continuing to offer information and support to people and their carers even if they have declined it previously, recognising that longterm conditions can be changeable or progressive, and people's information needs may change.
Inform people about, and direct them to, advocacy services.
Health and social care practitioners should offer older people with social care needs and multiple longterm conditions:
-pportunities to interact with other people with similar conditions
help to access onetoone or group support, social media and other activities, such as dementia cafes, walking groups and specialist support groups, exercise and dance.

## Supporting selfmanagement
See also section 1.7.
Health and social care practitioners should review recorded information about medicines and therapies regularly and follow up any issues related to managing medicines. This includes making sure information on changes to medicines is made available to relevant agencies.
Social care practitioners should contact the person's healthcare practitioners with any concerns about prescribed medicines.
Social care practitioners should tell the named care coordinator if any prescribed medicines are affecting the person's wellbeing. This could include known side effects or reluctance to take medicines.
Health and social care providers should recognise incontinence as a symptom and ensure people have access to diagnosis and treatment. This should include meeting with a specialist continence nurse.
Health and social care providers should give people information and advice about continence. Make a range of continence products available, paying full attention to people's dignity and treating them with respect.
Health and social care providers should give people information about services that can help them manage their lives. This should be given:
at the first point of contact and when new problems or issues arise
in different formats which should be accessible, including through interpreters (see making information accessible).
Named care coordinators should take responsibility for:
giving people and their carers information about what to do and who to contact in times of crisis, at any time of day or night
ensuring an effective response in times of crisis
ensuring there is continuity of care with familiar workers, so that wherever possible, personal care and support is carried out by workers known to the person and their family and carers
engaging local community health and social care services, including those in the voluntary sector
ensuring people and their carers have information about their particular conditions, and how to manage them
knowing where to access specialist knowledge and support, about particular health conditions
involving carers and advocates.
These recommendations for care home providers are about ensuring that care and support addresses the specific needs of older people with social care needs and multiple longterm conditions in care homes. For recommendations about delivering care at home, see the NICE guideline on home care.
Identify ways to address particular nutritional and hydration requirements.
Ensure people have a choice of things to eat and drink and varied snacks throughout the day, including outside regular meal times.
Ensure the care home environment and layout are used in a way that encourages social interaction, activity and peer support, as well as providing privacy and personal space.
Ensure people are physically comfortable, for example by allowing them control over the heating in their rooms.
Encourage social contact and provide opportunities for education, entertainment and meaningful occupation by:
making it easier for people to communicate and interact with others, for example by reducing background noise, providing facetoface contact with other people, using accessible signage and lighting
using a range of technologies such as IT platforms and WiFi, hearing loops and TV listeners
involving the wider community in the life of the care home through befriending schemes and intergenerational projects
-ffering opportunities for movement.
Build links with local communities, including voluntary and community sector organisations that can support older people with social care needs and multiple longterm conditions, and encourage interaction between residents and local people of all ages and backgrounds.
Make publicly available information about:
tariffs for selffunded and publiclyfunded care
what residents are entitled to and whether this could change if their funding status or ability to pay changes.Make available a statement for each person using services about what their funding pays for.

# Preventing social isolation
All practitioners should recognise that social isolation can be a particular problem for older people with social care needs and multiple longterm conditions.
Health and social care practitioners should support older people with social care needs and multiple longterm conditions to maintain links with their friends, family and community, and identify if people are lonely or isolated.
Named care coordinators and advocates should provide information to help people who are going to live in a care home to choose the right care home for them, for example one where they have friends or links with the community already.
Health and social care practitioners should give people advice and information about social activities and opportunities that can help them maintain their social contacts, and build new contacts if they wish to.
Consider contracting with voluntary and community sector enterprises and services to help older people with social care needs and multiple longterm conditions to remain active in their home and engaged in their community, including when people are in care homes.
Voluntary and community sector providers should consider collaborating with local authorities to develop new ways to help people to remain active and engaged in their communities, including when people are in care homes.

# Training health and social care practitioners
Those responsible for contracting and providing care services should ensure health and social care practitioners caring for older people with social care needs and multiple longterm conditions are assessed as having the necessary training and competencies in managing medicines.
Ensure health and social care practitioners are able to recognise, consider the impact of, and respond to:
common conditions, such as dementia, hearing and sight loss, and
common care needs, such as nutrition, hydration, chronic pain, falls and skin integrity, and
common support needs, such as dealing with bereavement and endoflife, and
deterioration in someone's health or circumstances.
Make provision for more specialist support to be available to people who need it  for example, in response to complex longterm health conditions  either by training practitioners directly involved in supporting people, or by ensuring partnerships are in place with specialist organisations.

# Terms used in this guideline

## Local authority needs assessment
The process by which a local authority works with a person to identify their needs and the outcomes they would like to achieve to maintain or improve their wellbeing. The local authority's aim is to determine how it should respond to meet the person's needs.

## Multiple longterm conditions
In this guideline, a longterm condition is defined as one that generally lasts a year or longer and impacts on a person's life. Examples include arthritis, asthma, cancer, dementia, diabetes, heart disease, mental health conditions and stroke. Multiple means a person is living with more than 1 condition. The impact and symptoms of these conditions can fluctuate, and people may or may not need to take medication for their conditions.

## Named care coordinator
The named care coordinator is one of the people from among the group of workers providing care and support designated to take a coordinating role. This could be, for example, a social worker, practitioner working for a voluntary or community sector organisation, or lead nurse.

## Social care needs
In this guideline, a person with social care needs is defined as someone needing personal care and other practical assistance because of their age, illness, disability, dependence on alcohol or drugs, or any other similar circumstances. This is based on the definition of social care in section 65 of the Health and Social Care Act 2012.
You can also see this guideline in the NICE Pathway on social care for older people with multiple long-term conditions.
To find out what NICE has said on topics related to this guideline, see our web pages on older people, multiple long-term conditions and care homes.# Context
A longterm condition is one that generally lasts a year or longer and impacts on a person's life. Examples include arthritis, asthma, cancer, dementia, diabetes, heart disease, mental health conditions and stroke. Longterm conditions may also be known as 'chronic conditions'.
The prevalence of longterm conditions is strongly linked to ageing and the number of people with multiple (more than 1) longterm conditions in England is projected to rise to 2.9 million by 2018 (Long term conditions compendium of information third edition, Department of Health). Prevention, delaying onset and slowing the progression of longterm conditions are all important outcomes for older people. Other important outcomes include quality of life and positive experience related to independence, choice, dignity and control.
Despite recent policy focusing on integrated health and social care services, some people are still being treated as a collection of conditions or symptoms, rather than as a whole person (The mandate: a mandate from the government to the NHS Commissioning Board: April 2013 to March 2015, Department of Health). People with multiple longterm conditions want joinedup, coordinated services but often find they are hard to access and fragmented (Integrated care and support: our shared commitment, Department of Health). Poor mental health can be associated with both social isolation and poor physical health, and can go unnoticed. The issue of delivering integrated support to people with longterm conditions who live in nursing and care homes has also been neglected (A quest for quality in care homes, British Geriatrics Society; Health care in care homes Care Quality Commission).
The Department of Health asked NICE to develop an evidencebased guideline to help address these issues (see the scope). The guideline was developed by a guideline committee following a detailed review of the evidence. The guideline focuses on older people with social care needs and multiple longterm conditions and their carers. The guideline does not cover younger adults (although many of the recommendations may also be relevant to younger adults). This is because the largest group of people affected by multiple longterm conditions is older people and because older people can experience inequalities in terms of resource allocation which is in the context of decreasing resources available to them overall (Older people's vision for long-term care Joseph Rowntree Foundation, What is social care, and how can health services better integrate with it? British Medical Association).
This guideline considers how personcentred social care and support for older people with social care needs and multiple longterm conditions should be planned and delivered. It addresses how those responsible for commissioning, managing and providing care for people with social care needs and multiple longterm conditions should work together to deliver safe, highquality services that promote independence, choice and control. It is relevant to all older people with social care needs and multiple longterm conditions, including those living in their own homes, in specialist settings or in care homes.
This guideline has been developed in the context of a complex and rapidly evolving landscape of guidance and legislation, most notably the Care Act 2014. While the Care Act and other legislation describe what organisations must do, this guideline is focused on 'what works' in terms of how to fulfil those duties, and deliver support to older people with social care needs and multiple longterm conditions.
The guideline will complement a range of NICE guidelines on topics such as dementia, diabetes, hypertension, mental wellbeing and older adults, and Parkinson's disease.# Recommendations for research
The Guideline Committee has made the following research recommendations in response to gaps and uncertainties in the evidence identified from the evidence reviews. The Guideline Committee selected the key research recommendations that they think will have the greatest impact on people's care and support.

# Older people's experiences
What is the lived experience of older people with social care needs and multiple longterm conditions?

## Why this is important
While there was some evidence on the experiences of older people with social care needs and multiple longterm conditions, there were gaps in relation to people's lived experience of how such conditions impact on their life in their own words. Research could be qualitative, ethnographic or could use crosssectional surveys using openended questions to gather views and experiences, in particular on:
the experiences of older people in the UK living with multiple longterm conditions and how their conditions affect them over time and at different stages of their life
how a person's multiple longterm conditions interact with each other and how this affects the person over time
the priorities, meanings and preferences of older people living with multiple longterm conditions.

# Service delivery models
Which models of service delivery are effective and costeffective for older people with social care needs and multiple longterm conditions?

## Why this is important
There was a lack of evidence about different models of support provision for older people with social care needs and multiple longterm conditions. There is a need for robust evaluations of different approaches to service delivery comparing, for example:
models led by different practitioners
different team structures
the components and configurations of models
barriers and facilitators to the implementation of models.
Outcomes could include social care and healthrelated quality of life, satisfaction, carer's health, number of unpaid care hours provided and health and social care resource use. Outcomes and service use should be measured over 1 or 2 years to enable assessment of the health and economic impact of different models of service delivery in the short and longer term.

# Supporting people in care homes to stay active
What is the most effective and costeffective way of supporting older people with social care needs and multiple longterm conditions in care homes to live as independently as possible?

## Why this is important
There is a need for robust evaluation of different interventions for supporting older people with social care needs and multiple longterm conditions in care homes. The Committee thought it particularly important to ensure that future studies evaluate how people living in care homes can best be supported to participate in social and leisure activities. This is important given that views data, Committee members' experiences and expert witness testimonies indicated that people living in care homes can feel particularly isolated and unable to take part in activities of their choice.
A range of study designs could be used, including randomised controlled trials, quantitative and qualitative evaluations of different packages of social and leisure activities, and their impact on social care and healthrelated quality of life, satisfaction and participation in and experience of meaningful social and leisure activities.

# Developing a 'risk positive' approach in care homes
What is the effectiveness and acceptability of different strategies to enable positive risktaking in care homes?

## Why this is important
The Committee noted that people take informed risks as part of normal everyday life, but for older people who need support, their ability to take these risks can be limited. Helping older people exercise choice and control, therefore, relies on a 'risk positive' approach. The Committee identified a gap in the literature about what works well in care homes in this respect. Studies are needed to explore different types of approaches to managing risk in care homes, for example looking at:
-rganisational, operational and individuallevel approaches to risktaking in care homes
the views and experiences of people using care home services and their carers
barriers and facilitators to riskpositive approaches in care homes.

# Selfmanagement
What is the impact of different early interventionfocused approaches to selfmanagement on outcomes for older people with social care needs and multiple longterm conditions?

## Why this is important
The Guideline Committee highlighted a lack of evidence on the impact of different approaches to selfmanagement, particularly those aimed at helping older people with social care needs and multiple longterm conditions to continue living independently for as long as possible. They highlighted the need to understand better the type of interventions and strategies available, and then to evaluate their effectiveness in terms of the impacts on outcomes for older people and their carers.
Future research should compare different approaches to selfmanagement and their impact on social carerelated quality of life and wellbeing in addition to physical health, acceptability and accessibility. It should also look at the views, experiences and potential impact on carers.