Involving people in their own health and care: Statutory guidance for

Involving people in their own

health and care:

Statutory guidance for clinical commissioning groups

and NHS England

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Quick links

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Foreword

Introduction

Why is it important

to involve people

in their own health

and care?

What should CCGs

and NHS England

do in practice?

Measurement

and assurance

Appendix A

Legal duties

Summary

Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Foreword

National surveys tell us that over 40%

of people want to be more

involved in decisions about their care; this situation has hardly

changed in a decade. Similarly 40%

of people living with long

term conditions want more support to manage their health and

wellbeing on a day to day basis. Indeed, the Five Year Forward

View states that more could be done to involve people in their

own health and care, to involve communities and the

voluntary sector in improving health and wellbeing and to

coordinate and personalise care and support including

through personal health budgets.

By involving people in decisions about their health and

care we will improve health and wellbeing, improve the

quality of care and ensure people make informed use of

available healthcare resources. Involving people in their

own health and care not only adds value to people’s lives,

it creates value for the taxpayer. The challenge now is to

shift the focus of care and support services from ‘what is

the matter with you?’ towards ‘what matters to you?’.

Professor Alf Collins, doctor, commissioner,

researcher and national policy advisor

in person-centred care.

“With more

choice and more control I

am able to limit the impact that

my multiple conditions have on my

life. I can make decisions about my health

that give me more opportunities to work,

maintain relationships and friendships and

continue to do the things that make me happy.

This in itself gives me strength to continue to

manage my long term conditions.”

Individual with lived

experience

“I can plan my

care with people who

work together to understand

me and my carer(s), allow me

control, and bring together services

to achieve the outcomes

important to me.”

A narrative for person-centred

coordinated care.

National Voices 2013

“I want to feel

heard and understood.

I want to know about my

options, and I want to be

supported to make a decision

based on what matters to me.”

A personal view of shared

decision making

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Summary

Clinical Commissioning Groups (CCGs) and NHS England have a key role to play in ensuring that providers make

individuals’ personal involvement in their health and care a reality. This guidance supports CCGs and NHS England

to fulfil their legal duties to involve people in their health and care, so that people experience better quality care and

improved health and wellbeing, and the system makes more efficient use of resources.

The guidance sets out 10 key actions for CCGs and NHS England on how to involve people in their own health and

care. These include:

• how to publicise and promote personal health budgets and the

choices available to patients and carers

• how CCGs and NHS England assure themselves that providers

are enabling involvement

• how CCGs and NHS England are commissioning for involvement.

To support CCGs and NHS England to address these issues, the

key mechanisms for involving people in their own health and care

are described, with links to a range of resources, good practice

and advice.

This guidance has been developed alongside the ‘Patient and

public participation in commissioning health and care: statutory

guidance for clinical commissioning groups and NHS England.’

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Introduction

Purpose and scope

This guidance will help Clinical Commissioning Groups (CCGs) and NHS England to involve people in their

own health and care in a meaningful way. It demonstrates the importance of involving people, their carers and

families, to improve individuals’ health and wellbeing outcomes and the efficiency and effectiveness of health

services. It also explains how CCGs and NHS England can meet their legal duties.

Under the National Health Service Act 2006 (as amended by

the Health and Social Care Act 2012) CCGs and NHS England

have duties to promote the involvement of patients in their

own health and care, (sections 14U and 13H respectively).

The wording of these duties is set out in appendix A.

This guidance is statutory and CCGs must have regard to it

3 4

as must NHS England staff.

The guidance will also be of relevance/interest to:

• patients, carers, and the public

• providers of health and care services, including health and

care professionals

• organisations that support commissioning

• health and wellbeing boards

• local authorities

• Healthwatch

• the voluntary community and social enterprise (VCSE) sector

• sustainability and transformation plan partnerships and

accountable care systems.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

What does involving people in their own

health and care mean?

Involving people in their care and treatment means supporting

people to manage their own health and wellbeing on a daily basis.

It means supporting them to become involved, as much as they

want or are able to, in decisions about their care and giving them

choice and control over the NHS services they receive. It means

focusing on what matters to the individual within the context of

their lives, not simply addressing a list of conditions or symptoms to

be treated. More specifically, for CCGs and NHS England, it means

commissioning services that routinely provide individuals with

the information, care and support to determine and achieve the

outcomes that matter to them.

Involving individuals in their health and care may range from

sharing decisions about one off elective procedures to ongoing

care and support for people living with long term conditions or a

disability. The amount of control an individual wishes or is able to

take in relation to these may vary according to their background,

experience, current circumstances and preferences. For example,

someone with profound and multiple learning disabilities may

find it more difficult to express their needs and preferences.

Nevertheless, involvement may be achieved through conversations

with those who know them best and who understand and are able

to voice their likely preferences.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Ways of involving people in their own

health and care

Involving people in their own health and care requires services to shift the focus of support from ‘what is the matter with you?’

to ‘what matters to you?’. Not only does this acknowledge the individual as an expert in their own care, but it also gives people

greater choice and control over the care and support they receive. To achieve this a new, more inclusive conversation needs to

take place between staff, individuals and their carers. By identifying needs and agreeing together the goals that matter to each

person, health and wellbeing needs are better met and people are supported to manage their health, and the impact it has on

their lives, more effectively. This section outlines some of the ways in which this changed conversation can be supported.

Personalised care and support planning

Personalised care and support planning is a systematic way of

ensuring that individuals living with one or more long term

condition are supported through proactive conversations,

with their clinician or health and care professionals. These

conversations should focus on what matters most to that

individual (their personal goals) and the support they need

to manage their health and wellbeing. It should be a process

of sharing information, identifying medical and non-medical

support needs, discussing options, contingency planning, setting

goals, documenting the discussion (often in the form of a care

plan) and monitoring progress through regular review.

One way of systematically implementing personalised care and

support planning is to put in place the ‘House of Care’ approach.

Example:

Paul has multiple long term conditions including diabetes,

heart disease and asthma. His GP organises an appointment

for them to discuss his concerns, questions, hopes

and aspirations. This also draws on input from other

professionals involved in Paul’s care. Together they develop

a mutual understanding of his preferences, wishes and

needs. The discussion is documented in a personalised care

and support plan. It sets out the support Paul needs in

order to balance all of his physical and mental health needs

with what matters to him. He may well access support

groups in his local community, health coaching and/or

self-management education courses to help him better

understand how to maintain his health and wellbeing.

He will also learn about the steps to take if his condition

deteriorates and where to go for treatment or support, if

necessary.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Shared decision making

Shared decision making is a process in which people who

experience a change in their health work together with clinicians

to select tests, treatments, management or support packages.

This is based on the best available evidence and the individual’s

informed preferences. More specifically, shared decision making

is a conversation, or series of conversations, that should include

evidence-based information about all reasonable options. This

should include all options, including doing nothing, alongside

what is known about the risks and benefits of those options,

together with decision support and a means for recording and

implementing the chosen course of action. In any decision where

there is more than one option, the values and preferences of the

person, such as their attitude to risk, may be as important as the

clinical evidence in choosing which option to follow.

Example:

Indra has back pain that is becoming difficult to manage

despite taking regular exercise and pain medication. She

wants to understand more about other options, including

surgery. She sees a specialist physiotherapist who provides

her with a range of options and support, to help her make

an informed decision based on the best evidence and her

own attitude to the risks and benefits of her options.

Social prescribing

Social prescribing is a way of linking patients in primary care

with sources of support in the community. It provides GPs with a

non-medical referral option that can operate alongside existing

treatments to improve health and wellbeing.

Good practice example:

‘Ways to Wellbeing’ is a social prescription service managed

by York Centre for Voluntary Service and available through

the Priory Medical Group practice. A coordinator connects

people who need health and wellbeing support, because

of issues such as loneliness and isolation, with activities and

services in the community. The coordinator meets with each

person and develops a programme of support based on

their needs, which is then matched with local services.

A recent evaluation of the project showed that 80% of

people using social prescriptions experienced a greater

sense of wellbeing and 75% had improved confidence.

The Priory Medical Group has also reported a decrease of

just under 20% in GP appointments from those using the

service, freeing up time so that GPs are able to support more

patients. A short film about the project is available

on YouTube.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Personal health budgets and integrated

personal commissioning

Personal health budgets are a way to improve personal outcomes

and experience by giving more choice and control over the care

received. They centre on personalised care and support planning

and allow people to choose how they prefer to meet their health

and wellbeing in personalised ways. Everyone who might benefit

from a personal health budget should experience a methodical,

coordinated approach to their care and support as described in

the integrated personal commissioning emerging framework.

Introductory information about personal health budgets and the

way they can be managed is available on NHS Choices.

While personal health budgets are relatively new in the NHS,

personal budgets in social care have a longer history. Building

on the learning from both health and social care and the drive

to increase integration across services, Integrated Personal

Commissioning (IPC) is an approach to delivering care and

support for people with the most complex needs. IPC enables

people to join up the funding available for both their health and

social care needs, so they experience seamless care and support.

IPC is a partnership programme between the NHS and the Local

Government Association, developing a personalised model of

integrated care for adults, children and young people with high,

ongoing care and support needs.

A commitment has been made to providing 50,000 to 100,000

personal health budgets or integrated personal budgets by

2020

. This is further supported by expectations outlined in

Transforming Care for People with Learning Disabilities – Next

Steps that personal health budgets should also be available to

people with a learning disability. The Five Year Forward View

described an additional commitment to introducing integrated

personal commissioning. As set out in the IPC Emerging

Framework, by 2020 IPC will be a mainstream model of care for

around 5% of the population.

Case study:

Mark’s life profoundly changed when he was assaulted in

2012, leaving him with permanent brain damage, unable to

speak or move independently. He eventually moved out of

residential care to live independently in his specially adapted

accommodation, thanks to the flexibility of a personal health

budget. You can find out more about Mark’s experience by

watching this short film.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Self-management

Self-management is the term given to a range of approaches

that aim to enable people living with long term conditions

to manage their own health effectively. Self-management

recognises individuals as experts in their own lives, having

acquired the skills and knowledge to cope as best they can with

their long term condition. Self-management approaches, such

as peer support or self-management education, seek to build

on this by supporting and enabling people to further develop

their skills, knowledge and confidence. By recognising patients

as experts in their own health and by providing support to

develop understanding and confidence, self-management leads

to improved health outcomes, improved patient experience,

reductions in unplanned hospital admissions and improved

adherence to treatment and medication

Example

Amira was working as a teacher when she had a breakdown.

Having been prescribed medication, Amira continued to be very

ill. After talking with her GP, it was suggested that she attend

a peer support knitting group at the local community centre.

After a few visits spent scared and quiet in the background,

the friendliness and openness of the group drew her in. The

equality of relationships built on trust, support and mutual

understanding has enabled Amira to engage more and find

benefit in talking to others in similar situations whilst taking

part in an absorbing activity. Amira is now less reliant on

medication to manage her health.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Making health and social care accessible

Everyone should have access to high quality health and care

information that enables them to better understand their

condition(s). Since August 2016 all organisations that provide

NHS care or adult social care are legally required to follow the

Accessible Information Standard. The standard aims to make

sure that people who have a disability, impairment or sensory

loss are provided with information that they can easily read

or understand. Services are also required to provide additional

support where necessary, such as the attendance of a British

Sign Language interpreter at appointments. By implementing

the standard, people with a disability, impairment or sensory

loss are supported to become more informed about their health

and more involved in how to manage it effectively.

More generally, The Information Standard is a certification

scheme for any organisation that produces public facing

health and care information. Any organisation achieving The

Information Standard has undergone a rigorous assessment

to check that their information production process generates

high quality products. Members of The Information Standard

also receive the right to display the Standard’s logo on their

information. This acts as a quality mark and helps individuals,

practitioners and commissioners easily identify reliable, high

quality information.

Finally, all organisations should have regard for the health

literacy needs of the people who access their services. Health

literacy refers to the ability an individual has to access,

understand, process and use information and services needed

to make decisions about health. This ability may be affected

by the individual’s personal characteristics, such as their skills,

knowledge and confidence, or by external factors such as

how easy signage is to understand in a hospital (e.g. x-ray vs

radiology).

Example

David recently had a stroke which affected his memory. David’s

GP practice recognised that the stroke had had an impact on

his ability to process, understand and use information. David

was given a one to one appointment during which he was

asked which of a range of resources he preferred and found

easiest to understand. These resources included technical/digital

support options. David’s preferred options were then logged

on his patient record so that all future communications and

appointments included the appropriate accessible information.

David now feels included, is more confident, better understands

his own health needs and has improved health outcomes.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Why is it important to involve people

in their own health and care?

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Improves health and wellbeing

Improves care and quality

Improves ﬁnancial sustainability and enables

the efﬁcient allocation of resources

Legal duty

Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Improves health and wellbeing

People’s lives can be transformed when they feel in control of their health and wellbeing and when

they are able to shape their care, support and treatment to fit with what matters to them. When

people are involved in decisions about their health and care (such as through personalised care

and support planning or shared decision making) they tend to choose care, support or treatment

packages that align with their personal preferences and goals. In other words they make decisions

and choices that help them optimise their physical and mental health and wellbeing.

Person and community-centred approaches that

support people to self manage, help to increase

knowledge, skills and confidence to manage

their health and wellbeing, improve outcomes,

and reduce social isolation and loneliness.

A number of approaches should be locally

available, including:

• self-management education programmes

• health coaching

• peer support

• group activities such as walking groups

• asset based community approaches.

Access to these approaches via personalised

care and support planning should be provided

for everyone living with long term conditions

or a disability. However, providing access for

people with low levels of knowledge, skills

and confidence to manage their health and

wellbeing is particularly important as these are

the people who have most to gain, and who

do indeed gain the most, from personalised

support. These approaches support them to

recognise and draw on their own resources

and those of communities, social networks and

statutory services around them.

People with complex needs can benefit from

the additional offer of integrated personal

commissioning and a personal health budget.

Research has shown that people with higher

levels of need, who are given greater choice

and control through the use of personal health

budgets, benefit more than those whose

personal health budgets were less flexible

Improves health and wellbeing

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Legal duty

Improves financial sustainability

and enables the efficient allocation

of resources

Improves care and quality

Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Improves care and quality

Evidence

8 9

shows that people who are involved in decisions about their health and care tend to:

• report greater satisfaction with the services they receive

• experience less regret about the decisions they have been supported to make and are more likely

to say that the decision made were most appropriate for them

• make fewer complaints than those who were not involved in decisions.

Personalised care and support planning and shared decision making reduce unwarranted variation

in the provision of care, treatment and support by ensuring that all decisions are informed decisions

based on personal preferences

10 11

. In other words, there is a focus on ‘what matters’ to individuals,

based on the risks and benefits of the available options and the outcomes they are seeking.

Improves care and quality

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Improves financial sustainability

and enables the efficient allocation

of resources

Improves health and wellbeing

Legal duty

Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Even people with the most complex of health

care needs, such as those with multiple long

term conditions, only spend a limited amount

of time in direct contact with health and care

services. This means it is hugely important that

services work to support and empower people to

feel confident and able to manage their health

effectively in the context of their daily lives. By

enabling people to be more involved in their

care and providing people with opportunities to

increase their skills, knowledge and confidence,

people can draw on their own strengths and

more effectively self-manage their condition(s).

When it comes to unscheduled care (both within

general practice and hospitals), supporting

people with long term conditions to develop the

knowledge, skills and confidence to manage

their health and wellbeing can also reduce

uninformed use of urgent and emergency care

services

. Putting a personal health budget

in place for people with more complex needs

has also been shown to reduce demand on

unscheduled services

When shared decision making is used across an

entire pathway it can ensure that people make

the most appropriate use of available resources.

It can help reduce overtreatment and may

well moderate demand for high risk/high cost

procedures. For example, providing a range of

treatments including non-medical options, such

as walking groups for people with early knee

pain through social prescribing, could lead to

improved outcomes for individuals and make

better use of available resources.

Finally, by understanding what is important to

individuals in the decisions they make about

their care support and treatment, CCGs and

NHS England can gain a better understanding

of overall population needs and preferences

and use this knowledge to make service

commissioning more responsive.

Improves financial sustainability

and enables the efficient allocation

of resources

Improves financial sustainability and enables

the efficient allocation of resources

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Improves health and wellbeing

Improves care and quality

Legal duty

Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

It is a legal duty

Promoting the involvement of people in their own health and care is a

key component of CCGs’ and NHS England’s statutory duties.

Shared decision making and patient choice

Section 14U of the National Health Service Act 2006 (as amended by the Health and Social Care

Act 2012) specifically states that CCGs must promote involvement of each individual, their carer

and (should there be any) their representatives in decisions relating to the prevention or diagnosis of

illness, or their care or treatment.

Section 14V states that CCGs must, in the exercise of their functions, act with a view to enabling

individuals to make choices with respect to aspects of health services provided to them.

NHS England is under equivalent legal duties in relation to individual involvement and choice under

sections 13H and 13I respectively.

National Health Service Commissioning Board

and Clinical Commissioning Groups (Responsibilities

and Standing Rules) Regulations 2012 require NHS England and CCGs to give effect to individuals’

rights to make choices about who provides their care and treatment.

Precedents established through common law for valid consent mean that people with capacity to

make decisions about their care and treatment must be properly advised about their treatment

options, and the risks associated with each option, so they can make informed decisions when

giving or withholding consent to treatment. In other words, the principles of shared decision making

must become the norm.

The Mental Capacity Act 2005 states that people who lack capacity to make decisions about

their care and treatment should be involved in such decisions ‘so far as practicable’.

More detail on the relevant legal requirements can be found in appendix A.

Legal duty

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Improves financial sustainability

and enables the efficient allocation

of resources

Improves health and wellbeing

Improves care and quality

Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Personal health budgets and integrated personal commissioning

Since 1 October 2014, adults receiving NHS continuing healthcare and children and young people

receiving continuing care have had a right to have a personal health budget. CCGs have a duty to

offer and deliver a personal health budget, as set out in the National Health Service Commissioning

Board and Clinical Commissioning Group (Responsibilities and Standing Rules) Regulations 2012 (as

amended).

Legal duty

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Improves financial sustainability

and enables the efficient allocation

of resources

Improves health and wellbeing

Improves care and quality

Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

What should CCGs and NHS England

do in practice?

1. Support patients, carers and representatives

• Inform individuals and provide information they can

understand about their right to be involved in and make

choices about their care.

• Engage with individuals to learn how involved they are in their

care and how they feel they could become more involved.

• Make it easier for patients to access information about their

health.

• Make use of existing insight – national surveys and local

feedback or research – to understand the views, experiences

and preferences of broader communities or individual groups

as a context for understanding how this links to what an

individual wants and needs. Further information on sources of

insight and feedback, such as the GP Patient Survey, and their

use in commissioning is available on the NHS England website.

• Require providers to take measures such as those set

out above.

2. Publicise and promote personal health budgets

• Publish the local personal health budget offer, setting out

where personal health budgets are offered or will be offered

and how to get more information.

• Inform people in receipt of continuing healthcare, or children

in receipt of continuing care, of their legal right to have a

personal health budget.

3. Publicise and promote the choices available to patients

• Publicise and promote awareness of information about the

health service providers that people can choose for an elective

referral.

• Publicise details and promote awareness of where such

information can be found.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Personal health budgets - Holly’s story

Holly was a manager for NHS continuing healthcare at

Oxford Health NHS Foundation Trust. She and her team

of 15 worked with 60 adults with high level care needs who

had a personal health budget.

“We first visited people interested in a personal health budget

to explain how they might work for them. Sometimes this took

time and multiple visits, but it was essential we understood

what healthcare outcomes people wanted to achieve. This often

revolved around avoiding admission to hospital or residential

care. We also discussed what in their traditional care plan was

working and not working.

“Traditional care packages lack flexibility; use of agency staff

contracted by our local council was compulsory and there

was often inconsistency when using agency staff. This was

unsettling and detrimental to people’s wellbeing. So a key

early conversation was whether the person would use their

personal health budget to employ their own carers instead.

An independent broker from Age UK helped us with this,

supporting people with personal health budgets to buy services

that met their health outcomes, handling recruitment, dealing

with employment issues and providing expert information,

including help on managing finances.

“One example is a woman in her thirties who needed day and

night support at home. Her carers regularly changed, until she

used her personal health budget to employ carers directly. She

now has a much better relationship with her carers, whom

she sees as friends. Also, the agency staff wore a compulsory

uniform, making her feel conspicuous in public. Her new carers

don’t have to wear uniforms, so she’s now comfortable being

seen with them.

“Overall, the positive health impact of personal health budgets

has been huge, including reduced admissions to hospital and

reduced need for crisis management. This is because carers

employed directly by people using their personal health budget

often get to know a person much better and so can pre-empt

problems. Plus, people feel more in control of their lives, feel

safer and more confident.

“My main advice to professionals working with personal health

budgets for the first time is that, although it can feel a lengthy

and daunting process to start with, it is worth it in the end. I can

confidently say every single person benefited from moving to

personal health budgets. None of them would choose to return

to a traditional care package.”

Holly’s full story is available on the NHS England website.

Good

practice

example

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

4. Commission for involvement

• Introduce requirements and incentives in relation to individual

involvement in contracts, service specifications and tenders.

• Consider the need for individual involvement in all aspects of

service commissioning, including prevention, diagnosis, care

planning, treatment and care management.

• Engage with healthcare providers and professionals to

understand what challenges and opportunities they face in

involving individuals in their care.

• Co-produce services and pathways with patients, carers

and the public to better understand what challenges and

opportunities they face in becoming more involved and to

create more effective health services.

5. Promote and publicise the involvement of individuals

• Promote the importance of involving people in their own

health and care in conversations with staff, providers and the

general public.

• Publicise how people can be involved in their own health and

care and share good practice.

• Publicise individuals’ right to be involved in and make choices

about their care.

6. Assure themselves that providers are involving people

in their own health and care to an acceptable standard

• Do providers systematically identify and engage with people

with long term conditions or disabilities who would benefit

from more personalised support, including the offer of

integrated personal commissioning or a personal health

budget?

This could be through a variety of means, including the use

of the Patient Activation Measure (PAM) which identifies

individuals according to their level of skills, knowledge and

confidence in managing their own health and wellbeing.

• Do providers systematically provide personalised care and

support planning for people living with long term conditions

or disabilities who would benefit from:

- a more personalised approach to their care and support

- and/or more support to develop the knowledge, skills and

confidence to manage their health and wellbeing?

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

• Do providers give people access to their own health records?

• Do providers ensure their clinicians and care professionals

systematically share decisions across all care pathways?

• Are providers following the Accessible Information Standard?

All organisations that provide NHS care or adult social care are

legally required to follow the standard.

• Are the needs of carers being considered? NHS England has

produced commissioning for carers principles.

• Are providers aware of the Information Standard? Do they

use information from organisations that are members of

the Information Standard and are they tailoring information

provision to an individual’s level of health literacy?

• Are providers offering meaningful choice to patients when it

comes to the provision of care or support services?

• Are providers providing and promoting online patient facing

services that support shared decision making, encourage

understanding and empower people to make best use of

health services?

7. Use and promote tools and resources

The personalised care and support planning tool by ‘Think Local

Act Personal’ is for health and care leaders, commissioners,

planners, clinicians and practitioners.

NHS England has resources available including a personalised

care and support planning handbook and support materials to

promote online services.

NHS England has developed a resource pack for commissioners –

Embedding shared decision making.

A curated collection of health literacy resources is available

online.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Personalised care and support planning in

primary care

Year of Care Partnerships provides support and training to

organisations and individual general practices to introduce and

sustain personalised care and support planning as routine care,

using a whole system approach. Through this, CCGs such as

Newcastle and Gateshead are supporting practices like Glenpark

Medical Centre in Dunston to deliver personalised care and

support planning for people with long term conditions, including

those with multi-morbidity. The practice recognised that their

current approach to care was inefficient for both patients and

the practice. By using what matters to the individual as the

starting point, involving the whole practice team and focusing

on creating a single process, the practice has created a more

effective and efficient approach in which staff are enthusiastic

and patients feel listened to and supported.

The process enables more productive conversations between

healthcare practitioners and patients, with more staff time spent

on talking with and listening to the individual and less time on

the computer gathering information. Preparing the individual

for the conversations is key to this process, as is having effective

links to ongoing support through social prescribing and self-

management interventions. This means that conversations lead

to improved outcomes for the individual.

The feedback has been extremely positive from both staff

and patients:

Good

practice

example

“They were

interested in

how I felt.”

“I got a

chance to ask things

rather than being

asked.”

“I learned

a lot.”

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

8. Assure themselves that they are commissioning

services that match the needs and preferences of their

population

• The need to commission services that address what people are

saying matters to them and to change/decommission those

services that do not.

• The need for supported self care approaches, for example:

- Commissioning the right mix of generic and condition

specific self-management education programmes (face

to face or online) to match the needs of their population.

Realising the Value has a range of resources on

self-management education.

- Commissioning health coaching for people living with long

term conditions who have low levels of knowledge, skills and

confidence to manage their health and wellbeing. Realising

the Value has relevant tools and resources for commissioners

and Health Education England (HEE) has developed a good

practice project on health coaching in the east of England.

- Commissioning peer support and group activities as a core

service offer. Realising the Value’s At the heart of health

report explores the value of people and communities, in

support of the NHS Five Year Forward View.

• The need to utilise local community assets, such as local

organisations, groups, activities and resources, in their

commissioning to provide a breadth of services that address

a variety of health and care needs, such as through social

prescribing. For example:

- Provision of a dedicated contact for individuals and

communities such as link workers or local area coordinators.

- Working closely with their local authority, local VCSE sector

and faith organisations and signposting people to relevant

services.

• The need to systematically identify, support and involve carers

as described in the Commitment to Carers.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Bradford Beating Diabetes

Bradford City and Bradford District CCGs wanted to

tackle the high prevalence of type 2 diabetes locally. As a

result Bradford Beating Diabetes (BBD) was set up to identify

people at high risk of developing diabetes and help them reduce

this risk by making lifestyle changes. Bradford District Care

Foundation Trust (BDCFT) was commissioned to deliver the BBD

Diabetes Prevention Programme (DPP).

Health coaches delivered the DPP enabling people to actively

participate in reducing their risk of diabetes. Getting the ‘right’

health coaches was important to enable people without obvious

symptoms to be more aware of the risks, become more active

and empower people to become healthier and more in control

of their health.

Participants were identified by their GP practices and encouraged

to take part in the programme. They found out about diabetes,

the eatwell guide, being more active and how to set small goals

and action plans. Participants found the support of health coaches

useful, as the coaches had experience of working on their own

health own goals.

Leeds Beckett University evaluated the BBD DPP and found there

was a statistically significant decrease in average blood sugar

levels after taking part in the programme. Participants’ risks had

reduced and scores for physical activity, diet, weight, Body Mass

Index and waist circumference had all improved.

Four health coaches were recruited, trained and started

delivering their own groups whilst still part of their own

DPP groups. One of these health coaches, Mumtaz, had not

worked before and was a housewife; she attended meetings

with national DPP colleagues, a CCG Board meeting and was

interviewed by the local news. She was able to put her new

found confidence into delivering her groups. Mumtaz said:

“Having the right mind set is important; and the prevention

programme helped me to gain that. I have understood more

about diabetes, its potential complications and how it can

be prevented. I’m more aware of what to avoid, and what to

do differently to stave off what would otherwise have been

inevitable.”

Mumtaz has lost weight, reduced her blood sugar levels and is

still using the same action plan to continue to make changes.

She now voluntarily leads her neighbours in local walks.

The two CCGs and BDCFT worked collaboratively with people,

staff and local voluntary and community sector organisations to

decide, design tools, deliver and review BBD.

Good

practice

example

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

9. Implement a workforce strategy to support health and

care professionals to involve people in their own health

and care

Involving individuals in managing their health and wellbeing

relies on a changed relationship between individuals and

professionals. Key to achieving this is ensuring that all those

working in health and care have person-centred and community-

centred skills, competencies, values and behaviours.

In addition, it means understanding which staff roles would

benefit from training in specific approaches that promote the

involvement of individuals in their own health and care through:

• personalised care and support planning

• shared decision making

• health coaching

• other forms of partnership working, for example through care

coordinator, link worker and health and care navigator roles.

CCGs and NHS England may need to invest in training in

these approaches based on HEE’s person-centred core skills

education and training framework. There are also useful

toolkits to help develop a person-centred workforce, such

as the Royal College of General Practitioners’ Collaborative

Care and Support Planning Toolkit and HEE’s health coaching

quality framework.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

10. Advance equality and reduce health inequalities

Creating the conditions for involving people in their health and

wellbeing means proactively reaching out to those who experience

the greatest health needs, those who face barriers to access and

participation, and those groups protected under the Equality

Act 2010. An equality and health inequality analysis can help to

identify those groups.

For NHS England staff further information about completing an

analysis is available on the intranet. Both NHS England and CCGs

can access the NHS England Equality and Health Inequalities Hub

for more information and resources.

Opportunities should be created to ensure fair and equitable

access to person-centred care regardless of a person’s cultural,

linguistic, religious background, communication and accessibility

needs. Particular attention should be paid to the needs of

those people who are most excluded from traditional services;

for example, the homeless, sex workers, recent migrants and

Travellers. A holistic approach should be taken which recognises

people’s lived experience and the range of barriers they

experience, rather than tick box approaches to addressing barriers.

Conversations between professionals and individuals should be

based on principles of mutual respect and listening, understanding

and acting on different experiences and perspectives. They should

also pay particular regard to people’s level of health literacy which

may be a significant barrier to effective involvement in care.

CCGs and NHS England should connect with existing patient,

service user and VCSE organisations to reach into, and learn from,

diverse communities.

Auditing and monitoring person-centred care planning for people

from equalities protected groups supports staff to manage and

improve performance in reaching these groups and helps to

reduce health inequalities

through improved commissioning and

accountability. CCGs and NHS England are required to respond to

the Public Sector Equality Duty of the Equality Act 2010. Without

effective involvement of individuals in their own care, CCGs

and NHS England will not be able to respond to the duty in a

meaningful way. Staff should use the Equality Delivery System for

the NHS (EDS2), a tool to help deliver better outcomes for people

and communities and better working environments, which are

personalised.

All organisations that provide NHS care or adult social care are

required to follow the Accessible Information Standard, including

NHS Trusts and Foundation Trusts, and GP practices. This standard

aims to ensure that people who have a disability, impairment or

sensory loss are provided with information that they can easily

read or understand with support, so they can communicate

effectively with services.

CCGs and NHS England should have regard to these duties when

managing contracts with providers. NHS England has produced

Involving people in their own health and care equality and health

inequalities - full analysis and associated resources, in relation to

this guidance.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Measurement and assurance

There is a number of ways to measure individual involvement and to provide assurance that CCGs and NHS

England are meeting their associated legal duties. Examples are outlined below:

• CCGs will be monitored on progress towards meeting their

trajectories to expand the uptake of personal health budgets

in line with the Mandate commitment

. The NHS Operational

Planning and Contracting Guidance for 2017-19 sets an aim

for CCGs to deliver their share of the Mandate commitment

(50,000) by March 2019.

• For 2016/17, NHS England introduced a new Improvement

and Assessment Framework (IAF) for CCGs. The framework

includes one indicator regarding how supported people with

long term conditions feel and one regarding personal health

budgets (a headline count of the total number of personal

health budgets per 100,000 population). The IAF indicators are

published on the comparison website MyNHS, enabling people

to see how their local area is performing compared to others,

and allowing CCGs to benchmark performance against peers.

• CQUIN 11 in the National Commissioning Quality and

Innovation (CQUIN) scheme 2017/19 relates to the delivery

of personalised care and support planning, whilst the CQUIN

Specialised Scheme 2017-19 includes measurement of patient

activation for long term conditions.

• CQC regulation 9 specifically states that providers must

‘provide support to help [individuals] understand and make

informed decisions about their care and treatment options’.

• National surveys, such as the GP Patient Survey and Inpatient

Survey, provide data on how involved individuals feel they are

in their health and wellbeing.

• The Care Quality Commission (CQC) have included ‘accessible

information and communication’ as one of their Equality

Objectives for 2017-2019. In order to meet this objective,

one of their commitments is that, ‘From October 2017, all

inspection reports include how providers are applying the

standard’. Further information about the CQC’s Equality

Objectives is available from their website.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

Appendix A

Legal duty to promote the involvement of each patient

What the law says

Section 14U of the National Health Service Act 2006

(1) Each CCG must, in the exercise of its functions, promote the

involvement of patients, and their carers and representatives

(if any), in decisions which relate to

(a) the prevention or diagnosis of illness in the patients, or

(b) their care or treatment.

(2) NHS England must publish guidance for CCGs on the

discharge of their duties under this section.

(3) A CCG must have regard to any guidance published by the

Board [NHS England] under subsection (2).

13H Duty to promote involvement of each patient

The Board [NHS England] must, in the exercise of its functions,

promote the involvement of patients, and their carers and

representatives (if any), in decisions which relate to

(a) the prevention or diagnosis of illness in the patients, or

(b) their care or treatment.

What the law requires CCGs and NHS England to do

The duty requires CCGs and NHS England to promote the

involvement of patients and their carers and representatives in

decisions about their own care.

The duty is intended to address the principle of shared decision

making – ‘no decision about me without me’.

The duty applies to any decisions at all stages of that individual’s

healthcare, from preventative measures, diagnosis of an illness,

and any subsequent care and treatment they are offered.

Effective involvement of patients in these decisions includes

opportunities for patients to take treatment decisions in

partnership with health professionals, to be supported to make

informed decisions about the management of their care and

treatment, and to discuss opportunities for patients to manage

their own condition.

The duty to promote patient involvement should be given

its ordinary and everyday meaning – to support or actively

encourage patients’ participation in decisions about their

care. If a CCG or NHS England promotes an approach which

is directly contrary to the aim of involving patients, carers or

representatives, it is likely to be unlawful. However, otherwise

the duty is not prescriptive as to how CCGs and NHS England

promote patient involvement. This affords a significant degree of

latitude as to how they promote the involvement of patients.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

What the law requires healthcare providers to do

Alongside the duty to promote the involvement of patients in

their care, healthcare providers and professionals must also

involve patients:

• The landmark Supreme Court case of Montgomery v

Lanarkshire Health Board [2015] UKSC 11 confirms that:

- Patients are persons holding rights and consumers exercising

choices, rather than the passive recipients of the care of the

medical profession.

- Developments in the law, society, technology and

professional practice all mean that it is a mistake to view

patients as uninformed, incapable of understanding medical

matters, or wholly dependent upon a flow of information

from doctors.

- An adult with capacity is entitled to decide which, if any, of

the available treatments to undergo, and his/her consent

must be obtained before treatment interfering with his/her

bodily integrity is undertaken.

- The doctor is under a duty to take reasonable care to ensure

that the patient is aware of any material risks involved in

proposed treatment, and of reasonable alternatives.

- A risk is ‘material’ if a reasonable person in the patient’s

position would be likely to attach significance to it, or if the

doctor is or should reasonably be aware that their patient

would be likely to attach significance to it.

• The Mental Capacity Act 2005 provides a statutory framework

for people who lack capacity to make decisions for themselves.

The involvement of people who lack (or may lack) capacity is

required in accordance with the five statutory principles set out

in section 1 of the act. The key principles are:

- Principle 2: a person is not to be treated as unable to make

a decision unless all practicable steps to help him/her have

been taken without success. This includes:

- providing relevant information

- communicating in an appropriate way

- making the person feel at ease and

- supporting the person.

- Principle 4: An act done, or decision made, for or on behalf

of a person who lacks capacity must be done, or made, in

his or her best interests. A person trying to work out the best

interests of a person who lacks capacity to make a particular

decision (‘lacks capacity’) should try to:

- encourage participation

- identify all relevant circumstances

- find out the person’s views

- avoid discrimination

- assess whether the person might regain capacity

- consult other people to see if they have any information

about the person’s wishes and feelings, beliefs and values.

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

• Professional guidance requires patient involvement. For

example, the General Medical Council’s Good Medical Practice

(2013) states:

“Work in partnership with patients. Listen to, and respond to,

their concerns and preferences. Give patients the information

they want or need in a way they can understand. Respect

patients’ right to reach decisions with you about their

treatment and care.”

• The NHS Standard Contract 2017/18 and 2018/19 requires

providers to provide clear information to service users, that

questions are responded to promptly and effectively and

actively engage, liaise and communicate with service users in

an open and clear manner in accordance with the law and

good practice (Service Condition 12). Providers may also have

additional obligations agreed locally, for example through local

service specifications.

• The right to respect for private life, protected by Article 8

of the European Convention on Human Rights, has been

recognised as giving rise to a duty to involve the patient in

decisions relating to his/her treatment, in cases such as Glass v

United Kingdom (2004) and Tysiac v Poland (2007), as well as

in a number of decisions of courts in the United Kingdom.

Related duties and rights

• The CCG’s duty to promote the NHS Constitution (section 14P).

• The CCG’s duty as to patient choice (section 14V).

• In respect of a person for whom the CCG considers it

necessary to arrange the provision of NHS continuing

healthcare or continuing care for children:

- The person’s right to a personal health budget.

- The CCG’s duty to publicise and promote the availability

of personal health budgets to such a person and their

representatives.

- The CCG’s duty to provide information, advice and other

support to such people and their representatives.

(Part 6A of the National Health Service Commissioning Board

and Clinical Commissioning Groups (Responsibilities and

Standing Rules) Regulations 2012).

• In respect of a person who requires an elective referral:

- The person’s right to a choice of health service provider and

clinically appropriate team (led by a named consultant or,

in the case of mental health services, a named healthcare

professional).

- The CCG’s duty to make arrangements to give effect to the

above choices.

- The CCG’s duty to publicise, and promote awareness of,

information about health service providers and clinically

appropriate teams for the purpose of enabling the person to

make the above choices.

- The CCG’s duty to publicise details, and promote awareness,

of where the above information can be found.

(Part 8 of the National Health Service Commissioning Board and

Clinical Commissioning Groups (Responsibilities and Standing

Rules) Regulations 2012).

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Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS England

References and notes

CQC inpatient survey 2015

GP survey 2016

NHS England has the power to publish guidance for CCGs

on the discharge of their functions under section 14Z2 of the

National Health Service Act 2006. CCGs must have regard

to any such guidance published by NHS England. See section

14Z2(4)-(5).

Having ‘regard’ means that the guidance should be considered

and taken account of. Where the guidance is not followed, this

should be justified and the reasons clearly documented.

The Government’s Mandate to NHS England 2016/17.

Active support for self-management

Personal Health Budgets Evaluation

New approaches to value in health and care

Better care in my hands

Coulter A, Entwistle V A, Eccles A, Ryan S, Shepperd S, Perera

R. (2014) Personalised care planning for adults with chronic or

long-term health conditions, Cochrane Database of Systematic

Reviews 2014.

Da Silva D. (2012) Helping people share decision making, The

Health Foundation.

Improving Population Health Management Strategies:

Identifying Patients Who Are More Likely to Be Users of

Avoidable Costly Care and Those More Likely to Develop a

New Chronic Disease - Judith H. Hibbard, Jessica Greene,

Rebecca M. Sacks, Valerie Overton, and Carmen Parrotta.

Health Services Research DOI: 10.1111/1475-6773.12545.

Personal health budgets evaluation.

NHS England was formally established as the NHS

Commissioning Board in October 2012.

Guidance for NHS Commissioners on Equality and Health

Inequalities legal duties.

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