The involvement of all user groups, including children, young people (CYP) and their parents, encourages people to take responsibility for healthier lifestyle behaviours, improves treatment compliance and leads to more appropriate use of healthcare resources. Initiatives to engage CYP in the UK are gathering momentum, but significant improvements are still needed. There is a national drive from the department of health (DH) and NHS England, strategic clinical networks, operational delivery networks (including newborn networks), charities, parent groups and a number of other bodies to embed CYP involvement in service design and delivery. User engagement and patient choice, is underpinned by the NHS outcomes framework, and a myriad of other DH and NHS England policies and practice frameworks. It is now everybody's business.
- Patient perspective
- Health Service
- Children's Rights
- General Paediatrics
- Health Economics
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In the new National Health Service (NHS) of 1948, ‘patients’ were passive recipients of healthcare. This is emphatically no longer the case. In the NHS of 2014, ‘consumer choice’ has become key: all people have the basic right and duty to participate individually and collectively in the planning and implementation of their healthcare.1 Moreover, encouraging individuals to take responsibility for their own health and become involved in treatment decisions, leads to improved health outcomes.2–5 This has become central to NHS England health strategy in order to support the sustainability of healthcare, and keep future healthcare spending within manageable limits.
This review defines patients as all those and their families requiring healthcare services, and reviews what is meant by ‘engagement’, why children's services should involve children, young people and their parents (CYP), and what the barriers are to their involvement.
Health benefits of patient engagement
There is increasing evidence, albeit largely qualitative, that when patients do take responsibility for their own health, they are more likely to adopt healthier lifestyles, use services more appropriately (eg, appropriately diagnose and self-remedy minor and self-limiting illnesses), and have more selective and efficient demands on healthcare resources.2–5 This, in turn, will improve healthcare outcomes for the wider community.
Young people with chronic illnesses often have significant levels of dissatisfaction with the healthcare they receive; this may impact on their use of healthcare services, treatment compliance and consequent health outcomes. Conversely, if involved with making decisions about how healthcare is delivered, there is a greater likelihood of engagement and treatment compliance.6
The history of patient engagement and current political imperatives
The concept that patients should be involved in service design and delivery is not new, with an array of reports, information regarding patient and public engagement (PPE), and multiple governmental statements promoting the value of patient engagement in healthcare.7–12
People expect to be involved in, and play a key role in decisions that affect all aspects of their lives, including healthcare: ‘Patients value choice’.8 ,11 Yet more than a decade from the vision of the NHS plan,8 ,11 patients including CYP remain too infrequently involved early in design processes, particularly when reconfiguring services across geographical boundaries.
The NHS Choice Framework 2013/14,13 provides guidance in choosing care and treatment, and can be readily accessed online via the NHS choices website.
The NHS constitution14 (with the motto the ‘NHS belongs to us All’) was created to protect the NHS, and ensure that the organisation continues to provide high quality healthcare. The constitution sets out clearly what patients, the public and staff can expect from the NHS, and what the NHS expects in return. The NHS constitution cannot be changed by any government, without the full participation of all stakeholders. The NHS confederation is the membership body for all the NHS commissioners and providers of healthcare services, and has advocated that PPE must become integral to the operation of every NHS organisation.
While the ‘public’ also involves politicians and the media, patients should, arguably, have the greatest influence on how services are delivered. PPE in service design has become an increasing ‘must do’, with some excellent examples of how it can be achieved. For example, neonatal practice has been hugely influenced by a robust relationship with the parents charity BLISS, which provided a number of examples where there is good engagement within newborn networks, detailed in the Toolkit for High Quality Neonatal Services.15
The ‘Nothing about Me Without Me’ agenda16 was developed in the USA, but provides a framework applicable to global healthcare services, to develop engagement programmes in four key areas: education and awareness; a culture of safety; research; and support services. Through individual and collaborative action, it was envisaged that patients would ultimately be empowered to say, ‘Nothing about me, without me’.17
There has been a definite move towards increasing patient engagement, but the role of the patient as an active and equal partner in their healthcare remains insufficiently recognised and supported by health professionals.3 There had been even less engagement of CYP until recently, yet there are approximately 2 million residents under 18 years of age in England using NHS services annually. In the UK, between July 2012 and July 2013, there were 2.5 million consultant episodes, 9.4 million outpatient attendances and 4.8 million attendances at accident and emergency departments by children and young people aged 0–19 years.16
Understanding what patients want, and avoiding assumptions
What the ‘user’ regards as being critical to the development of high-quality services may not be the same as what providers think that users want. The Kano diagram18 offers a tool for evaluating this. Features of any new service developments which providers assume make that service a ‘high quality’ service, may not be viewed as such by ‘users’. The Kano model describes three types of attributes to consider in any product (or service) development.
To meet user/customer demands, any service has to have the key, ‘basic’ needs known as ‘threshold attributes’, for example, clean clinical areas, functioning lavatories, car parking facilities and the availability of food and drink. Whatever the other features of the service are, without threshold attributes, which are expected and assumed, a new service will not be successful.
Performance attributes are at the forefront of a user's mind when evaluating a service, and are commonly ‘stated’, so are the easiest to measure using surveys and user-focus groups. High ‘performance’, for example, being able to deliver a baby in the location of choice, will result in greater satisfaction than having to be transferred to another hospital, or being separated from one's baby in order to receive the right care. Being treated with courtesy, having effective treatments, and not having to wait too long to be seen, result in the perception of higher performance.
Degree of excitement/delighters
The excitement/delighters are unique, innovative attributes beyond the expected and which offer something special. For example, access to Wi-Fi in paediatric and neonatal units does not detract from the quality of service if not present, but provides a ‘buzz’ and will give rise to pleasure and relief when made available.
Users are most satisfied when performance is high (children and their families are cared for in the right place at the right time, and clinical outcome is good), basic needs are met (eg, accessible car parking and parent accommodation), and there are delighters, for example, a person to meet and greet on arrival and bring refreshments; the availability of free wi-fi. Dissatisfaction occurs when basic needs are not met, ‘performance’ is poor and there are no ‘delighters’.
Recurring themes in terms of key basic ‘rules’ for user engagement are:
to engage users from the start
not to assume what the users want or feel
to earn and build on trust, which will require even greater effort if there is already lost trust.19
National initiatives to increase public and patient engagement
Engagement of service users takes a multitude of different forms (table 1). A call to action aims to engage all people who use or work in the NHS (the public, patients and staff), and presents the opportunity to have a say on the future of services: ‘The NHS needs your help—Have your Say’.19 A number of different methods are proposed:
An online platform hosted by NHS Choices, enabling the submission of ideas, and providing information about engagement events and interactive forums. Twitter and Facebook are increasingly used as networking media and facilitate easy feedback of patient experiences.
‘Future of the NHS’ surgeries to gather views of the public will be held by clinical commissioning groups (CCG), health and well-being boards, local authorities and partners such as charities and patient groups. The views of NHS staff will be captured via the regional senates.
Town Hall meetings, and national engagement events, to include local government, businesses and the Royal colleges.
Transforming Participation in Health and Care provides guidance for commissioners on how to involve patients and carers in decisions about their care and treatment, and involve the public in commissioning processes.20
The NHS Outcomes Framework,21 which is structured around 5 domains, includes domain 4 ‘Ensuring people have a positive experience of care’, and underpins NHS England Healthcare strategy (table 2). A number of tools and frameworks are available from NHS Improving Quality (NHS IQ), established on 1 April 2013, and hosted by NHS England. NHS IQ work to the 5 domains of the NHS Outcomes Framework to provide improvement and change expertise, with the ultimate aim of driving improvements in healthcare.22
Initiatives to promote CYP engagement
In February 2013, the department of health (DH) pledged ‘Children and Young people and their families should be at the heart of decision-making, with the health outcomes that matter most to them taking priority”.23 ,24
The Office of the Children's Commissioner (OCC) a national organisation led by the Children's Commissioner for England is England's only statutory independent champion for children and young people.25 The OCC ensures that adults who work with children consider the needs of children and young people, listen to their views and draw national policymakers’ and agencies’ attention to the particular circumstances which can improve their lives. The post was established in 2004 by the Children Act, and is guided by the United Nations Convention on the Rights of the Child (UNCRC).
The lack of a national programme to actively encourage local bodies to include children and young people in strategic health service provision and commissioning has been highlighted in their report.25 The report defines ‘strategic’ decision making as being the process of assessing local health needs, identifying priorities and making plans for how health services should be delivered in local areas. Following a comprehensive review of published research,26 and consulting widely on children's views and experiences of health provision from 2007 to 2012, the report collated examples of practices, which included children in strategic health design and delivery.
The report also analysed 102 local health plans, (including the plans of Health and Wellbeing board Joint Health and Wellbeing Strategies (JHWS); Joint Strategic Needs Assessments (JSNA); clinical commissioning group commissioning strategies; engagement strategies; and local Healthwatch pathfinder bids and engagement strategies). Only 28% of the 102 plans referenced the participation of children and young people in service development, and evaluated how they wanted the service to be delivered.26
The widely used ‘Friends and Families Test’ (FFT) which asks whether staff, patients and families would recommend a health setting or service to those closest to them, was highlighted as being relevant only when a patient is aged 18 years or over. As one in four patients is aged under 18 years, and this age group represents a significant population in its own right, this means that in its current format this test could not represent the views of CYP, and so has been modified for CYP.
NHS England has appointed a Head of Patient Experience to lead on maternity, neonatal and CYP experience of care.27 The profile of CYP engagement has been significantly raised using a variety of media including Facebook, Twitter and a podcast.28
The NHS youth forum, launched in March 2014, is a collaboration supported by the British Youth Council, of members from NHS England, Public Health England and the department of health. Young people, with a range of experiences of using health services and from a range of backgrounds, have been recruited to the forum from across England.29 The Forum has a Facebook page30 and Twitter account.31
The Royal College of Paediatrics and Child Health (RCPCH) launched the Youth Advisory Panel in 2013, with members from the UK aged 12–26 years with varying backgrounds including those with direct patient experience, those with an interest in healthcare for children and young people, and advocates for various public health issues in other youth forums. Their remit is to play a key role in supporting the RCPCH in addressing child health issues; engaging with CYP and providers; and participating in a range of activities, including research, policy, training, events and communications in order to raise important issues and influence key decision makers.32
Initiatives with neonatology
The neonatal community has long embraced and embedded parent engagement into routine practice within the structures of newborn networks. Most network boards (‘Operational Delivery Networks’ or ‘ODNs’) have parent representation, some more active than others. This has been powered by the strong relationship providers have enjoyed with the UK charity, BLISS,33 who have been critical partners in informing service developments, education and national strategy, and more recently, have also driven major advances in the delivery of Family Centred Care.
The BLISS Baby Charter Audit Tool (BBCAT) was developed by parents working with BLISS, and offers a practical self-assessment method to assist neonatal units in evaluating their service delivery as laid out in the neonatal yoolkit. In 2010/2011, thirteen neonatal units took part in a pilot study using the first draft of the BBCAT, which provided those units with a means to evaluate and benchmark the quality of Family Centred Care within their neonatal units.
The BBCAT has been revised and sets out guiding standards and principles in non-clinical neonatal care. As a continuum, the BLISS Family Friendly Accreditation Scheme (BFFAS) has been awarded a 3-year project grant by the DH Innovation, Excellence and Strategic Development Fund. The scheme commenced in late 2013 with the aim of BFFAS being to expand the use of the revised BBCAT, and develop an independent accreditation scheme to recognise neonatal units demonstrating a consistent commitment to family centred care. BLISS is working with parents and health professionals to ensure BFFAS becomes a quality standard that encompasses all UK neonatal units, and which can be used to assess performance, reward achievement and identify where standards can be improved. All neonatal units are invited to apply for accreditation. Family Centred care coordinators have also been created with part-funding from BLISS, to drive further improvements.
BLISS were centrally involved in the development of the UK Newborn Life Support (NLS) course, with representation on the NLS subcommittee to advise from a parent perspective and funding equipment to support the first NLS pilot courses. The course has subsequently been embedded across the UK within midwifery, nursing and medical practice: an NLS provider certificate is a mandatory requirement for all paediatric medical trainees.
Latterly, BLISS has been involved in the development of palliative care guidelines for neonatal units, together with the long-established charity SANDS (Stillbirth and Neonatal Death Charity), again providing valuable insights into the parent perspective of bereavement.
The neonatal Clinical Reference Group (CRG), which sets service specifications to advise on commissioning specialist services, has up to four parent and carer representatives on the board, to advise as part of service review groups, and as strategic advisors.
Neonatal services also link in with other charities which advise and support service development and delivery such as the National Childbirth Trust (NCT), the Down Syndrome association, Group B Strep Support (GBSS), Best Beginnings and Baby Lifeline, to name but a few.
Strategic clinical networks for women and children
The strategic clinical networks (SCN) for maternity and children form part of the senates within the new NHS England organisational structures, and are frequently referred to as ‘engines for change’, and work closely with ODNs including newborn networks. Many SCNs have appointed substantive posts for Patient Voice and Insight. In the West Midlands Maternity and Children's SCN, this role leads on developing a Citizen Senate and setting up a children and young people forum. The aim of the Citizen Senate is to create a forum through which patient and carer voices can be accessed to support collaboration in the development and assessment of proposed new, or revised, services. Such posts are fundamental in ensuring that the people receiving NHS care have a voice in how that care should be provided within their localities.
Examples of good practice
A report commissioned by NHS England and prepared by The Patient Experience Network (PEN) ‘Improving Patient Experiences For Children and Young People’,34 investigated and commented on a wide variety of aspects concerned with improving patient experiences for CYP, and offers a number of suggestions as to how NHS providers can improve CYP experiences. Areas of good practice are highlighted, for example, the use of a smartphone feedback app at Birmingham Children's Hospital, which enables anonymous, easy and quick feedback of CYP experiences on the ward or in a clinical area they have recently visited. The feedback questionnaire was designed together with young people and gives constructive feedback to the clinical teams.
A number of other areas of best practice are detailed in the report, as are CYP work programmes in progress at NHS England. These include a more appropriate Friends and Family test for CYP, a review of feedback surveys to ensure that they really do capture the experiences of CYP, an expansion of the CYP network of collaborators to include commissioners, the voluntary sector and providers; and the establishment of a youth forum in collaboration with the British Youth Council. There remain frequent accounts of limited involvement of CYP.
In this era of service reconfiguration, which has been necessitated by drives on quality, improving outcomes and reducing unnecessary expenditure, it is vital that all service users, including CYP and their parents, are involved in service design and delivery.
An example of where the result of engagement was very productive, was the involvement of 22 000 children and young people in Greater Manchester Health Trusts in making decisions about reconfiguring NHS services, in 2011. OCC's Wheel of Participation35 describes how children may engage in the decisions that affect their lives. A fundamental principle for meaningful participation has been that children are kept well informed, so they can take part meaningfully in consultations and help shape decisions.
Barriers to engagement
Negative attitudes of clinicians and some managers towards user engagement result from concerns that patients could have too much diversity of opinion, may be factually wrong, not understand what they are talking about, be disruptive and time consuming. The difficulties may be perceived to be too overwhelming, and carry additional resource implications.2 ,36 Undoubtedly, it can be difficult to gather the ‘right’ group together. Some groups may claim to be representative but have self-selected themselves and may have specific agendas not necessarily shared by the wider user group. Sometimes there will be opinions too diverse to identify common themes. However, increasingly, these obstacles are being overcome by constructive engagement and improvements in information sharing.
User groups may also not always be supported with even basic finances, for example, with respect to travel and child-care reimbursement. This disincentive can mean that in addition to giving up their time to support healthcare initiatives, such involvement becomes too costly.
In summary, the involvement of CYP in the UK is improving, and there are areas of good practice, but significant improvements are still needed. There is a national drive from the DH and NHS England, the strategic clinical networks, operational delivery networks, charities, parent groups and a number of other bodies, to embed CYP involvement in service design and delivery. User engagement and patient choice, is underpinned by the NHS Outcomes Framework, and a myriad of other DH and NHS England policies and practice frameworks. It is now everybody's business.
Contributors ARBR drafted the manuscript and MP added parts relating to user engagement activities within the West Midlands, and assisted with factual editing. HK assisted with revision of the manuscript and provided evidence of heath benefits of CYP involvement.
Competing interests None.
Provenance and peer review Commissioned; externally peer reviewed.