Integration Made Possible: A practical manual for joint working – multiagency, multidisciplinary, transdisciplinary.

'Integration Made Possible: A practical manual for joint working – multiagency, multidisciplinary, transdisciplinary.'
By Peter Limbrick. Published by Interconnections in 2020. ISBN 978-0-9576601-7-5

Contents

Introduction

SECTION 1: All about integration

• Types of integration

• Problems caused by fragmentation

• When integration is needed

• Integration that occurs spontaneously

SECTION 2: Benefits of integration

• Benefits to service users

• Benefits to family, carers and friends

• Benefits to service providers

SECTION 3: Common approaches to integration

• Co-location and one-stop shops

• Keyworking

• Individualised multidisciplinary teams

• Primary interventionists

• Integrated pathways

• Directories and communication systems

SECTION 4: Considerations in promoting integration

• Partnership with service users

• Surveys

• Horizontal teamwork

• Attitudes to integration

SECTION 5: Wider integration

• Integration with the private sector

• Integration as a cultural phenomenon

• Academic responsibilities in integration

SECTION 6: First moves to promote integration

• Tasks for leaders

References and additional resources

Introduction

The word ‘integration’ can be defined as unifying diverse elements into a whole. Integration is described in this Manual as a process of joining things together with the purpose of achieving something better than was there when the things were separate. When various elements of support are integrated around a baby, child, teenager, adult or elderly person, a support system is created that is more whole. Support for people in need that is unified in this way is always better than a collection of fragments that do not fit well with each other, so we can think of integration as the antidote to harmful fragmentation. This Manual takes the widest possible interpretation of integration from joint working between the major local agencies to co-operation and collaboration at community level in such facilities as swimming pools and food banks.

Integration in the context of this Manual is a process in which people in local health, education and social care agencies and in other services and facilities work together in some way to create effective support around people with special needs. Special needs can be the result of disability, illness or some other condition or situation. People who share the same condition, for example dementia or muscular dystrophy, might have very different situations: one might be wealthy while another lives in poverty; one might be in a refugee camp while another enjoys all the trappings of celebrity.

Integration is a process rather than a one-off event requiring people to work together in some practical way. In this, people in need are not passive recipients of support. They are involved as fully as possible in all decisions about joint working. This is respectful and empowering and works towards the unified whole. Integration must include person-centred care and co-production and must have an evidence base.

Person-centred care
Though integrated working might involve managers at the highest levels in local health, education, social care and other agencies, the principles of person-centred care must be strictly adhered to. Babies, children, teenagers, adults and elderly people who have special needs must be the focus of all planning decisions about joint working. The Social Care Institute for Excellence (SCIE) defines person-centred care:

Person-centred care moves away from professionals deciding what is best for a patient or service user, and places the person at the centre, as an expert of their own experience. The person, and their family where appropriate, becomes an equal partner in the planning of their care and support, ensuring it [meets] their needs, goals, and outcomes.

With an emphasis on doing with rather than doing to, person-centred care runs through both individual and group settings, allowing users of services to be active not only in their own care but also in the design and delivery of services. This approach can improve both the experience and quality of care. [1]

Co-production
In the aspiration for people who use public services to be powerful in how those services operate, the concepts of co-production and integration overlap each other. Boyle and Harris in the discussion paper, The Challenge of Co-production [2], define co-production as follows:

Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change.

While co-production argues for meaningful partnership between the people who work in public services and the people who use them, integration in the context of this Manual has a wider ambition that embraces co-production but also advocates co-operation and collaboration between people in the various organisations that provide services or support. Included in both integration and co-production are, as appropriate, family members, carers, friends and neighbours.

Evidence-based planning
This Manual advocates an evidence-based approach that investigates and documents problems caused by fragmentation to the group of people being focused on both locally and, using published reports and research, in other regions and countries. Similarly, local good practice that counters fragmentation is collected as well as relevant good practice from further afield. In this, a persistent focus is kept on the local situation to avoid integration becoming an academic exercise. All planning takes account of relevant local and national government guidance and legislation

The ideal to aspire to in integration is for each child or adult to experience a total pattern of support that is sensibly organised, harmonious, effective, empowering and apparently seamless without them having to be always conscious of the various agencies, practitioners and other people that have come together to create it. It is possible to achieve the ideal, but in most cases, the level of integration will be the best that can be achieved at the time in the particular situation. Once a degree of integration is achieved and shown to be successful it will surely expand its scope and attract more people into the culture of joint working.

Returning to the definition I started with, we can characterise the process of integration as always working towards wholeness. Firstly, there is respectful recognition of the person in need as a whole adult or child. Then there is the wholeness of their condition and situation made up of many interconnected elements. Next, there is the aspiration to wholeness of their intervention system in which practitioners and other people around them connect with each other to create a whole approach.

There is much variety in the sort of joint working that is necessary for particular adults and children. Some, because of major obstacles to their health and development, will need on-going multidisciplinary teamwork bringing together people from health, education and social care services. Others will need only an occasional collaboration, for instance between one of their health practitioners and the people running a local sport and leisure facility with the aim of improving access.

The starting point for this Manual was a 2019 paper from England’s Council for Disabled Children (CDC) entitled It takes leaders to break down siloes: Integrating services for disabled children [3]. During the autumn of that year Interconnections published further articles of informal observations [4] on the paper. The CDC paper asserted that:

Leadership is the most important factor in enabling (or hindering) integration...

Other enabling factors were listed as family involvement, co-location, multi-disciplinary teams and key workers. In my informal observations I suggested disability prejudice as a major hindering factor that has always kept agencies short of the funds that full integration would require. Two other major hindering factors I suggested were firstly, the failure of universities to prepare health, education and social care students for joint working and secondly, the anxieties and apprehensions that many practitioners have about collaborating with people across agency or professional boundaries.

This Manual goes beyond the scope of that paper, children with disabilities, and addresses integration for people of any age who have some sort of special needs and require support from a number of sources simultaneously or consecutively.

Disability prejudice
This is not addressed in depth in this Manual. There is widespread disability prejudice in my country and perhaps in yours that condemns many children to a second-class education, severely reduces employment opportunities, keeps people in poverty and limits access to good housing, travel and meaningful sexual relationships. In my view, this prejudice deprives public services and communities of the resources, finance, creativity and commitment that could make full integration possible. While this Manual cannot eradicate the evils of disability prejudice, it can offer ways for people to work together to ensure adults and children who have disabilities and special needs can play a full part in all aspects of life. This is discussed in Topic 19 ‘Integration as a cultural phenomenon’. (Because integration has a dual meaning, it is important to be clear that integration in this Manual is about joint working and not about racial integration.)

Pooled budgets
This Manual offers no expertise in pooling agency budgets. Though integration would become so much easier if there were pooled budgets, finance managers say this is fraught with problems. In fact some children wait for months for an item of essential equipment while managers argue about which agency should foot the bill. Perhaps it would help to have a small local pooled budget that could be used without delay. Managers could then decide later which organisation has responsibility for a particular expense and then adjust contributions to the pooled budget retrospectively.

About the Manual

The Manual is intended as a contribution to:

• understanding the issues around integration

• planning projects to promote integration for service users

• writing undergraduate courses on integration

• designing research projects about integration

• writing funding applications for local projects and research

Readers who are embarking on a project to promote integration in their locality, region or country, will probably have a particular group of people in mind. They might be a member of the group themselves, one of the people who support them in a professional capacity or a family member, carer or friend. It is unlikely anyone will address simultaneously all the aspects of integration I describe so the Manual can be used to focus on particular topics in some order of relevance or first achievability.

There are six main sections interspersed with topics for discussion which are intended to aid planning discussions about establishing or enhancing various aspects of local integration. The sections and discussion topics are designed to be relevant whichever group of people this effort is directed towards. This might be a group of people who have the same condition or who use a particular service, centre or unit. It might be all the people having simultaneous support from two or more agencies. It is important for the people involved in the integration effort to be as clear as possible about who they want enhanced joint working for.

A note of caution
This is appropriate at the end of this preamble: We are in an age of rapidly developing technology and communication systems. While this technology can be used to support integrated systems, it must not be allowed to replace human interactions between people working together. Joint working around people who need on-going support is a very human activity requiring people to get to know each other and work together with respect and trust. This cannot be a technological function.

1 This is an extract from the SCIE website under the page heading ‘Prevention and Wellbeing’ https://www.scie.org.uk/

2 Boyle, D. & Harris, M. (2009) The Challenge of Co-production

3 Allard, A. et al. (2019) It takes leaders to break down siloes

4 Limbrick, P. (2019) TAC Bulletin comment, Issue 249 onwards (Ask Peter Limbrick about this)

Siggested Discussion Topics following the Introduction

• Does integration as discussed so far fit with your idea of it and with what you are trying to achieve? In what ways does it not fit?

• Who is already joined with you now in wanting integration or enhanced integration? Who would you next approach to join you?

• Which people would you like to read this Manual at the same time as you?

• Can you define the group of service users you are focused on? (Is it a group of people sharing a condition; the people using a particular service, centre or unit; the group of people using two or more agencies simultaneously; other?)

• Are you focused on adults or children or both?

• Can you outline some major ill-effects caused by fragmentation?

• Can you define the locality you are focused on?

• Are there any local people for whom integration is part of their remit?

• Is there local good practice in integration, perhaps for another group of service users?

• In this project, do you need to cater for people whose first language is not English?

• In this project, do you need to consider a variety of readability and access needs?

• Are there any people in your locality or region working on co-production?

• Are you up to date with person-centred care?

• How will you collate evidence about fragmentation and good practice?

• What resources do you need? (To embark on an integration project; to apply for funds for it; to design an academic course or research project.)

• Other topics to add?

SECTION 1: All about integration

There is not just one effort or outcome that we can label as integration. It is always a dynamic and flexible process that goes as far as possible to bring an effective multi-faceted response to a person’s multifaceted condition and situation. The motivation is always to remove harmful fragmentation and bring people into a shared and coherent effort. This section has four topics:

• Types of integration

• Problems caused by fragmentation

• When integration is needed

• Integration that occurs spontaneously

Topic 1: Types of integration

There is not a single technique for achieving integration, nor any universal outcome to work towards except for the broad ambition to achieve an effective whole approach. It is always a matter of two or more people or organisations working together in an attempt to remove some problematic fragmentation, lack of co-ordination or dis-jointedness. Integration is not necessary if support is not fragmented. The following list gives some examples to show the wide range of types of integration. They overlap each other and are not mutually exclusive.

Integration across place
When an adult or child is being supported in two or more places, it might be necessary for people in those places to work together so that support is seamless. For a young child who attends a nursery and a therapy clinic, it might mean parents and staff members in both places agreeing a shared approach to communication. For an elderly person who moves periodically back and to between a care home and a hospital ward, it might mean creating a shared view of the person’s habits, tastes and preferences – involving family members, friends and neighbours when possible.

Integration across time
The aim here is to anticipate and achieve, as far as possible, seamless transitions. People in a nursery or school need to work with those in pre-school services so that successful approaches can be continued for a particular child. Psychologists and social workers in children’s services around an addicted teenager might need to work with colleagues in adult services so there is no gap in provision when the child becomes adult.

Integration to rationalise on-going interventions
When two or more organisations are supporting a child or adult there might be a need for people to work together to achieve a well-co-ordinated pattern of interventions. This avoids such difficulties as multiple appointments in different locations on the same day and duplicated journeys to the same place when appointments could have been combined. In moving from fragmented services to integrated support in this way, there are advantages to service users in terms of quality of life and saving energy and money. This basic co-ordination brings similar advantages to the people providing support.

Integration to harmonise on-going interventions
When a service user has two or more intervention programmes being offered at the same time, there might be a need to harmonise them so they fit together well and do not work against each other. This might be appropriate for a child being helped by a teacher of the deaf and an autism specialist. Similarly for an infant and parent being helped by a physiotherapist, a pre-school teacher and a psychologist. The process of harmonising can raise the question whether one multifaceted programme would be better than separate ones.

Integration to establish a keyworker
When a number of practitioners and other people are directly involved with a child or adult and are aware of each other, there can be an agreement for one of them to become the person with the closest involvement and the main link between the person in need and the others.

Integration to form an individualised multidisciplinary team
When a number of people are directly involved with a child or adult and are aware of each other, they can agree to meet together to work as an individualised multi-disciplinary team with unified approaches and goals. The characteristics that define a team, rather than a group, include relationship, trust and mutual support.

Integration to create a pathway
When two or more agencies or services are involved with a group of people who share a condition, for example, cerebral palsy, addiction or dementia, managers and prac-titioners can work together to create a local care pathway for that group of people with a single point of entry, shared assessment processes, joined-up support and joint review.

Integration to establish a primary interventionist
For some children and adults for a period of time best practice might be to provide multidisciplinary support through just one worker. This worker is then supported by others in the multidisciplinary team who remain in the background. This way of working approaches the model of transdisciplinary teamwork.

Integration of information and communication systems
A local directory of all support systems is both an essential product of the integration effort and an invaluable asset in promoting integration around adults and children. Hassle-free communication between people in the local network around each person is essential. It is a matter of achieving what is possible within the limitations imposed by different communication policies and systems in local agencies.

These are all examples of how people can work together to achieve better outcomes than are possible in fragmented approaches. The people involved in this integration, in addition to the person in need, can include their family members, carers and friends and practitioners, managers and directors of local services. In all cases, the people receiving support are involved as far as possible in shared agreements about joint working.

Elements of integration can be used in combination: A multidisciplinary team can agree that one of its members becomes a keyworker; in a multiagency pathway, there can be agreement to establish a primary interventionist. These modes of integration are all antidotes to the problems caused for children and adults when everyone works separately from each other. Each is a creative and imaginative response once people become aware of the additional problems being caused by fragmentation.

For Discussion

• For the group of people you are focusing on, is it already clear what type or types of integration would be appropriate?

• Is it clear how these would be effective antidotes to the ill-effects of fragmentation you have identified?

• Do you have a type of integration in mind that is not in listed in this Manual?

• Are one or more types of integration already in place for this group?

• What are the successful elements of this integration?

• What are the failing elements of this integration?

• In your locality, are there some successful types and outcomes of integration for other service users that would also fit the people you are focusing on?

• Where you have found successful types of local integration, can you liaise with the people running them?

• What examples of good practice in this do you have for your evidence base?

• Other points?
  

Topic 2: Problems caused by fragmentation

Integration becomes an imperative when the damage fragmentation can cause is considered. This damage includes erosion of quality of life, mental ill-health following long-term stress, some interventions being made ineffective when used in conjunction with others and a person’s illness or disability being made worse than it was before. The harmful effects of fragmentation include these interconnected elements:

• Chaos and confusion

• Stress and strain

• A piecemeal approach

• Repeating the story

Chaos and confusion
When two or more practitioners are working with the same child or adult and do not share their work with each other, they are, in a real sense, working blind. Then ‘the right hand does not know what the left hand is doing’. There is no guarantee that the separate approaches fit well together without harmful contradictions. To counter this, a concerned practitioner might ask the service user to relate what the others are doing. Even if the service user has the capacity to do this, imposing this additional responsibility on someone who already has enough to deal with cannot be thought good practice.

In my experience, many new parents of disabled children experience the totality of their local services as a mystifying jungle. They start with no knowledge of what support is available and when they find a service they might need, they find it difficult to access. They have to struggle at a very difficult time in their life to make headway without any sort of comprehensive guide.

Stress and strain
Having a long-term condition, being a carer of someone who has a long-term condition or being the parent of a child with a long-term condition is already stressful enough with its own mix of emotional ups and downs. When support is fragmented, stress and strain are increased by a disorganised pattern of appointments and interventions that waste time and energy. Any effort the service user makes or others make on their behalf to appeal to practitioners to properly co-ordinate their work around the child or adult can bring a whole new set of frustrations for everyone.

A piecemeal approach
It might or might not be appropriate to treat each aspect of a person’s whole condition separately. A physiotherapist sorting out a person’s back pain will most likely not need to liaise with the person’s dentist treating a gum infection. But there are clear instances when a joint approach is necessary. One example is an infant who has cerebral palsy and impaired vision. In this case it is good practice for the physiotherapist, vision specialist and parent to work together to teach the child how to move around the house or manage at mealtimes. Another example is a teenager who has an addiction leaving their care home. An integrated approach to support them will bring together the teenager, key people from the care home and any education establishment they attend, a concerned relative and any concerned social worker and psychologist.

In a piecemeal approach, each practitioner will apply the work for which they are trained and contracted without considering properly how this fits with the work others are doing – or might not even be aware of the other interventions. Human beings do not come as an assembly of separate parts and their conditions and situations have interconnected elements. For the infant above, movement and vision are inter-dependent and progress in one will help the other. For the teenager, addiction, education and domestic arrangements are interrelated parts of the whole life situation and must be addressed together.

A piecemeal approach will dilute the impact of each intervention and might make the person’s situation worse if people are working towards different goals that do not fit together. As an example, support for the teenager above will be problematic if a relative and social worker have different aims for the teenager’s living arrangement.

Repeating the story
An argument that is often put forward for integration around young children with disabilities is that it will prevent the parents having to tell their story to each new practitioner they meet. This is a valid argument but perhaps not quite as simple as it sounds. It depends on the parents and on what information each new practitioner is asking for. It is tedious for a parent to keep repeating the sequence of birth events, problems, tests and diagnoses with personnel, places and dates. But each story also has emotional content including anxiety and aspirations and a parent of a disabled child or any other person in need might find it therapeutic to go over issues again to a new practitioner they feel they can trust. Having the story typed up for handing out might not always be all that some people need.

But such a typed account will work very well in some situations. If there has been a shared multiagency effort to produce a single document describing a person’s condition, situation and pattern of present support, then that person can send it to a practitioner they are due to meet for the first time and ask them to read it before the appointment. As ever, it is matter of being person-centred within agreed integrated systems.

Countering fragmentation to fully remove these problems and ill-effects is a massive task. Taking health, education and social care agencies as an example, a large part of disjointedness comes from how they were set up the first place. These agencies and services were established and have evolved as separate institutions. This works well for many people who have a single health, education or care need but it breaks down when needs cross the institution boundaries.

In this separate evolution, each institution has developed its own culture, language and methods of working. Universities prepare practitioners to work in these institutions with separate courses and qualifications. Practitioners are then employed in separate organisations each with management hierarchies, contracts and job descriptions that are peculiar to their institution. This perspective on the background to fragmentation shows the great challenge that integration presents.

For Discussion

• What are the major harmful effects of fragmentation for the people you are focusing on?

• Are there other ‘lesser’ effects?

• Are these harmful effects known from recent surveys?

• Can the information be collated into an evidence-based report:

  • with a short version on a single A4 page?

  • with a more detailed account?

  • with some account on film?

• Are further surveys needed at this time?

• Can co-production be part of gathering further information?

• What are the harmful effects for the people around service users as family members, carers, and friends?

• What are the harmful effects for their practitioners?

• What are the harmful effects for the local support services?

• Do you have evidence from published research about the problems fragmentation causes to the group of people you are focused on?

• Other points?

Topic 3: When integration is needed

We can now attempt to define people who need an integrated service, either as individuals or as groups sharing a condition or situation. These are people whose disability, illness or condition is multifaceted rather than singular with parts that interconnect with and impact on each other. Babies and infants who have neurological impairment from birth might have difficulties with movement, communication, vision, hearing, cognition and dexterity. A child with a complex genetic syndrome might have difficulties with organ function, digestion, hearing, vision, growth and development. A person with autism might have difficulties with communication, cognition, relationship, mood and sleep. A frail elderly person might have difficulties with self-care, nutrition, general health, memory, staying safe and might suffer long-term loneliness. An integrated support system will attempt to address all aspects of a person’s condition and situation.

Family members and carers are part of the whole picture. People close to the person in need might have their own practical, social and emotional needs. Services supporting a child with disabilities and/or short life expectancy, if they are truly family-centred, will support parents, siblings and perhaps grandparents as far as they can. A whole and integrated pattern of care for a person with dementia might embrace family members, carers, friends and neighbours – both for their own sake and to help them in their caring role.

Some people who have disabilities and special needs will need integrated support as they transfer from one service or practitioner to another. A situation to be avoided is when a child or adult’s support service comes to an abrupt halt leaving the person to wait for the next service to begin. The gap without support is itself a problem. Difficulties are increased when relevant information does not pass from one service to the next and when an effective approach is dropped to be replaced with another that is unfamiliar and seemingly less effective. This can happen when school age is reached, when children’s services give way to adult services, when an elderly person moves from home to hospital (or vice versa) and when one practitioner is replaced by another – perhaps because of change of employment or extended leave.

This is not meant to be an exhaustive list. It just makes the point that for some people needs are interconnected and that an effective professional response is to integrate interventions into a unified whole as far as possible.

For Discussion

Note: You might not need to use this list if you have already clearly decided the group you are focusing on. Or you can use it to confirm and clarify your focus.

• Are you focused on a group of people who share a condition?

• Are you focused on a group of people who use a particular service, centre or unit?

• Are you focused on a group of people who need support from two or more agencies?

• Are you focused on a group of people defined in some other way?

• Are they adults, children or both?

• Do you have evidence of ill-effects from fragmentation when elements of support are provided simultaneously?

• Do you have evidence of ill-effects from fragmentation when elements of support are provided consecutively and at transitions?

• Is co-production helping identify the ill-effects of these fragmentations?

• Is there information about how many agencies or services the people are using?

• Is there a need to collect further evidence?

Topic 4: Integration that occurs spontaneously

There have always been some instances of integration in which people come together in joint work with little or no conscious planning. This can be in response to a sudden crisis or when it is eventually realised that a person’s long-term condition or situation has not been helped by practitioners each doing their separate work. Concerned practitioners might then come together on the basis that ‘two (or three) heads are better than one’.

Joint working can also arise more or less informally between practitioners who get on well with each other. Capra and Luisi [5] describe ‘communities of practice’:

...informal social networks exist within every organization. They arise from various alliances and friendships, informal channels of communication, and other tangled webs of relationships that continually grow, change, and adapt to new situations.’

These social networks are probably very common and can cross agency boundaries with or without co-location. Being informal and impermanent, they cannot be relied on to bring the necessary people together for each child or adult that needs integrated support. But they can be a good start.

Capra and Luisi, authors of The Systems View of Life, and other writers on Systems Theory have a lot to offer on the subject of integration. The central observation of Systems Theory is that the whole is more than the sum of the parts or, to put it another way, when parts are properly connected, new characteristics emerge that the parts did not have. So a multidisciplinary team can achieve more than any of the single people in it. In the next section, I discuss the benefits that can emerge when people work together in integrated systems.

5 Capra, F. & Luisi, P. L. (2014) The systems view of life, p 316

For Discussion

• What local examples are there of practitioners coming together spontaneously to successfully address a crisis situation or a so-far intractable problem for a service user or group of service users? Is this integration multidisciplinary? Is this integration multiagency?

• What local examples are there of practitioners and other people (family members, carers, friends, neighbours) coming together spontaneously to successfully address a crisis situation or a so-far intractable problem for a service user or group of service users?

• Can you identify the elements of good practice in this integration?

• What examples of ‘communities of practice’ do you know of?

  • are you involved in one?

  • what factors helped get them established?

  • what factors help keep them going?

  • if they have not lasted, what factors brought them to an end?

• Where you have examples of ‘communities of practice’, can you identify the types of joint working they generate?

• Where you have examples of ‘communities of practice’, can you use them as a starting point for extended integration?

• What changes to work environments and communication systems could be made to foster and consolidate ‘communities of practice’?

• Are you up-to-date with basic Systems Theory?

• Any other points?

SECTION 2: Benefits of Integration

When there is a well-organised and sustained effort to integrate support services, there are real benefits to service users, to their families, friends and carers and to practitioners and their agencies. When we extend our thinking to include a child or adult’s play, social and leisure activities, then the benefits that come from people working together contribute to a richer and more inclusive community. Potential benefits of integration are discussed in the following topics:

• Benefits to service users

• Benefits to the people around them as family, carers or friends

• Benefits to practitioners and their agencies

• Benefits to the local community

The last of these, benefits to the local community, is discussed in Topic 19, Integration as a cultural phenomenon.

Topic 5: Benefits to service users

The effort to integrate various elements of support around a child or adult only has validity if it results in tangible improvement in the support being offered. There cannot be an exhaustive list of the benefits to service users that can come from integrating health, education, social care and other local agencies. This is because perceived benefits depend on the nature of the person’s condition, their particular situation at the time and their personal preferences and aspirations. Integration is part of a person-centred approach in which there are no rigid formulas for either approaches or outcomes.

In general terms, when health, education, social care and other agencies integrate their support around a person in need, there are three major interconnected benefits:

• A whole and comprehensive picture of the person needing support

• A well-organised pattern of interventions

• A harmonising of intervention programmes.

A whole and comprehensive picture of the person needing support
This is achieved when considerations have included all relevant issues including physical, psychological, social and emotional needs (and including a child’s attachment needs). Just as integration can never be achieved fully, so a whole picture is impossible for two reasons: Firstly, no person can ever be described in full and any picture drawn of them will inevitably change. Secondly, the whole picture that can be drawn is dependent on who is contributing to it. For example, if psychologists are not yet part of the local integrated effort, their perspective on individual children and adults will be missing.

Working towards a whole and comprehensive picture is a first step to counter fragmentation. It must include what is known of the person’s strengths and abilities, their needs (either already being met or so far unmet) and a full picture of the various support services the person is receiving. The sincere attempt to create a whole picture of the person being supported reassures them, as far as they can be aware of it, that the people supporting them are well acquainted with them as a person and have a good understanding of their condition, situation, needs and aspirations. This is part of the respect one person can show another and it can have immediate therapeutic benefit.

In a fragmented approach, the people receiving interventions and/or those most closely involved with them, keyworkers for instance, are the only ones who see the totality of support being offered. When a whole picture is created it will make this information more generally available. This will facilitate judgements about the appropriateness of the current pattern of interventions and whether there are too few or too many practitioners and services involved.

A well-organised pattern of interventions
In this, all sessions to explore needs and provide short or long term treatment and other interventions are organised with proper consideration of the person’s comfort, general wellbeing and quality of life. It is a shared effort to co-ordinate and rationalise appointments with respect to venues, dates, times and people to see. Factors to be aware of include travel costs, energy levels, time availability and, for a baby or young child, feeding and sleeping routines. For some children who have particular emotional and social needs, very serious consideration should be given to the number of non-family people they have to encounter either at home or in centres and clinics.

This is a multiagency exercise done in discussion with the person being supported and/or the people around them. This avoids ill-informed assumptions being made, for instance about whether a particular person would or would not prefer to have two appointments in the same place on the same day. A perfect plan will probably not be achieved because practitioners and their agencies do not have total flexibility. Compromises are inevitable but the starting point must always be the preferences and needs of the person being supported.

A harmonising of intervention programmes
When two or more practitioners are providing programmes of intervention to support a child or adult’s wellbeing, health and development, there should be no assumption that they are best delivered separately from each other – as happens in a fragmented approach. Some integration or harmonising of these interventions might be appropriate in the interests of the child or adult. For a school child with autism, this can mean their teacher, speech and language therapist and psychologist meet to share and compare their programmes. This can include the child. For a baby or pre-school child who has a multifaceted condition, it can mean therapists, teachers and parents meet together. The aim is to agree a single unified approach with shared goals. Consideration is given to whether there should be a shared programme instead of separate programmes and whether the number of people providing programmes can be reduced – perhaps to a single primary interventionist.

This level of integration works towards a whole approach to the person’s development and learning and can rationalise the number of people involved in providing the programmes. Stresses and strains can be reduced and quality of life enhanced. [6]

6 For an account of the impact of multi-agency working on disabled children with complex health care needs see Townsley, R. et al. (2004) Making a difference?

For Discussion

• What benefits has integration already brought to the people you are focused on?

• What additional benefits do you wish to see now? Can you list them in priority order?

• What types of integration are necessary to achieve these aims? Refer to Topic 2 and Section 3.

• Which of these require enhanced integration?

• Which of these require new patterns of integration?

• Which of these aims require practitioners within an organisation (agency, service, or unit) to work together?

• Which of these aims require practitioners in different organisations to work together?

• Which of these aims require practitioners and other people (family members, carers, friends and neighbours) to work together?

• Which of these aims require directors to be involved?

• Which of these aims require managers to be involved?

• Have existing benefits and those still needed been established with co-production?

• Other discussion points?

Topic 6: Benefits to family, carers and friends

Family members, carers, friends and neighbours, to a greater or lesser extent will be part of the support around a child or adult and, depending on the situation, might be major players. The benefits to the service users described above will also benefit these people – remembering that some children are carers.

All will benefit from a shared whole picture of the person and of their condition and situation and from an agreed list of which of their needs are being met and so far not being met. Logically, family, carers and concerned friends will have contributed to this whole picture and will be able to see now how the support they are offering fits into it. The whole and comprehensive picture will bring to light the needs of some people around the person being supported. For instance, the practical and emotional needs of carers of any age will be brought into clearer focus.

When appointments, in the home or other places, are well-co-ordinated, the time, energy and money of family, carers and friends can be saved with, perhaps, some reduction in their stress levels. As an example, there can be a direct benefit to young siblings whom a parent of a disabled child has to bring to all appointments.

The people around a person in need will benefit directly when there is clarity about how interventions they are involved in fit together and about how they reinforce each other. It might be that family and carers have already noticed that there are some obvious contradictions in the elements of support and will be reassured to know that these have been resolved.

For Discussion

• With respect to children, are parents, siblings, grandparents and other significant family members:

  • respected for their supporting role?

  • involved in building the whole picture of the child?

  • asked what support they need to help them support the child?

  • asked what support they need for themselves?

• With respect to adults, are those family members, carers, friends and neighbours in a significant caring role:

  • respected for their supporting role

  • involved in building the whole picture of the adult

  • asked what support they need to help them support the person

  • asked what support they need for themselves?

• Are children acknowledged and supported when they are young carers of children or adults?

• Are there established rules and agreements about confidentiality for these conversations?

• Are family members, carers and friends involved in establishing the best possible pattern of interventions?

• Are family members, carers and friends involved in harmonising interventions?

• What good practice in this do you have for the evidence base?

• Other points?

Topic 7: Benefits to service providers

Integration brings benefits to local public, voluntary and private agencies and to the people who work in them. These should be seen, though, as a secondary outcome. If they are allowed to be the primary motivation, then there will surely be some reduction in the support being offered to people in need.

Practitioners will benefit from seeing the whole and comprehensive picture of the person’s condition, situation, needs and total pattern of support. This will put their contribution into context and will bring to light any duplication of effort and any intervention overload of the service user. When appointments are organised into a coherent pattern of who is seeing the person and where and when, there can be a saving of practitioner time and agency resources.

When there is an attempt to harmonise interventions it might arise that two or more practitioners are offering very similar programmes or that two or more programmes can easily be combined into one multifaceted programme. Adjusting the programmes appropriately can mean that practitioners can rationalise which of them needs to be mostly involved. The result can be a better use of an organisation’s resources.

Private agencies that offer programmes of intervention will benefit similarly from being part of the integrated effort by seeing the whole picture of the person they are supporting and understanding how their work fits with other people’s. Also, they will know who to consult when a problem arises that is beyond their brief or competence. Inviting private services and practitioners into the local integrated effort is discussed in Topic 18.

For Discussion

• Is there a process to construct a picture of the total pattern of support around each adult or child?

• Is this whole picture analysed to explore:

  • if one or more practitioners are overloaded?

  • if there is some duplication of effort?

  • if there are gaps in provision?

  • if some interventions could be rationalised in terms of dates and venues?

  • if some programmes could be harmonised so they do not need to be offered separately?

• Could the writing of reports and other paperwork be made more relevant and efficient in a shared effort?

• With regard to how busy practitioners and managers are and how stressed they might be, is there oversight of their mental health?

• Other points?

SECTION 3: Common Approaches to Integration

Integration is not a new invention for this 21st century. Nor is the awareness that effective support for some adults and children who have multifaceted conditions and situations means there should be some sort of shared effort. This section discusses some common approaches to joint working in the following topics:

• Co-location and one-stop shops

• Keyworking

• Individualised multidisciplinary teams

• Primary interventionists

• Integrated pathways

• Directories and communication systems

Topic 8: Co-location and one-stop shops

I am going to argue here against co-location in buildings being a primary answer to the challenge of integrating local agencies. Co-location means bringing workers from more than one agency or service into a shared work space. It can be just a shared office space or a space for practitioners to be with the people they are supporting, for example an elderly person’s day centre or a children’s centre. A shared office space might be cheaper to establish and run than separate offices and ought to make communication easier, but it is not a guarantee of effective integration of support around local children and adults. While it should bring bureaucratic advantages and economies, if it is going to go beyond the spontaneous and ad hoc communities of practice, some training and support will be needed to generate integrated systems for real joint working based in familiarity, trust and respect between everyone in the shared space.

When service users are invited into a shared space it can be a one-stop shop for them, one advantage of which is bringing workers together across agency boundaries and avoiding service users having multiple appointments and journeys on a regular basis. One-stop shops facilitate integration to only a limited extent but they have other significant benefits and should not be discounted.

Child development centres (CDCs) are an example. The ones I have known in the UK have been health units with a central core of paediatricians, nurses, therapists and receptionists. After that, the model varies greatly. Additional CDC team members can include social workers, teachers, psychologists and clerical workers. A child might be seen individually by each team member or team members can come together around a child. Children can be organised into small groups for some activities. Parents might stay with their child or have their own parent groups for sharing and mutual support.

The one-stop shop aspiration breaks down in the CDC model when child or parent needs the services of a geneticist, neurologist, sensory specialist, counsellor, benefits adviser, housing officer or any other service that is not based at the CDC.

Obviously, no CDC could ever be big enough and broad enough to include all the people a child and family might need access to during the childhood years.

Even within a CDC or children’s centre, the patterns of integration around children and families will vary. For instance, it will probably not be necessary for every practitioner to be involved with each child at the same time: A physiotherapist might not be necessary because of the nature of the child’s condition; involvement of a social worker might not be relevant; a paediatrician might be needed at one stage of the child’s life but not at others; people who can support parents in learning to play with their child might be the predominant need while others move to the side-lines for the time being.

CDCs, children’s centres and one-stop shops for adults and elderly people, rather than being considered as whole solutions to fragmented services, are more usefully seen as places where joint working is easily organised as necessary within their walls and as control centres for organising joint working in the local support networks beyond the building.

Co-location and one-stop shops have very great benefits for both service users and practitioners. However, when the primary objective is to fully integrate health, education, social care and other support services around local children and adults, investment in a new building should not be the first option. There would not be sufficient gains in joint working to justify the expense. [7]

7 Wolverhampton’s Gem Centre in the UK is an example of a multiagency centre for children

For Discussion

• In your locality, what administrative buildings are there that co-locate people of different support organisations?

• What are their successes in establishing joint working?

• What are their failures in establishing joint working?

• Can you identify good practice that could transfer to other facilities?

• In your locality, what buildings are there that operate as one-stop shops for service users?

• What are their successes in establishing joint working?

• What are their failures in establishing joint working?

• Can you identify good practice that could transfer to other facilities?

• Are there surveys of service users’ views on local one-stop shops?

• Are there surveys of practitioners and managers’ views on local co-located offices?

• Are there surveys of practitioners and managers’ views on local one-stop shops?

• Can co-production support development of these facilities?

• Other points?

Topic 9: Keyworking

In my view, every child or adult who has a multifaceted and long-term condition should have the option of a keyworker. (Use of the two terms ‘keyworker’ and ‘key worker’ is a matter of choice.) This keyworker would be one person they get on well with and trust and who is easily available for regular and direct support. Keyworkers are an important asset in integrating support, helping bring fragmented parts into a whole when the locality has no other elements of integrated working.

A keyworker’s wider functions can include: providing emotional support; helping with confidence and empowerment; helping get relevant information; helping with access to relevant services; helping rationalise all appointments; helping to harmonise separate programmes; helping create an individualised multidisciplinary team; being an advocate.

These various functions are potentials that come into play when necessary. We can think of a keyworker sitting with the person at the centre of their support network and helping with communication across the network to and from the person being supported. It is a demanding professional role in which activities must be limited by each keyworker’s competence and available time.

When the usual pattern of support from local services is fragmented and chaotic, this will impact on keyworkers in their role of helping achieve a well-organised and coherent system of support. Keyworkers will then be in danger of getting lost in the same mystifying maze that frustrates service users. Keyworking works best when there are local multiagency pathways with easily accessible information about all support that is available and effective multiagency communication systems.

The registered charity One Hundred Hours explored and validated the role of the keyworker. This approach was described in The Keyworker: a practical guide [8].

In this guide, the keyworker is described on page 7 as:

A source of information for families of children with disabilities and a conduit by which other services are accessed and used effectively...
To do this effectively, it is argued, the keyworker needs to be able to offer the family specific services – such as emotional support, information, advocacy and co-ordination of services – and needs to operate under specific principles such as being parent-led, being ‘dedicated’ (focusing solely on keyworking), independent and operating in partnership with the parents.

Clearly, this is a demanding role. After the publication of The Keyworker, there was general agreement in the UK that keyworkers could be a major asset for families of disabled babies and young children. It was recognised that many families wanted a keyworker to help co-ordinate the various elements of support. The dual aims in this were: to rationalise all appointments to save the child and parents’ time, money and energy; to build a whole approach to the child with a coherent picture of their child’s strengths and needs and harmonised interventions. There were two ways of doing this: the keyworker could meet each of the child’s practitioners separately or the prac-titioners could be invited to the family home to meet each other and begin the process of collaborating. The second of these, the individualised multidisciplinary team approach, was the ideal for most families and was later written up as Team Around the Child (TAC) [9].

Keyworking and individualised multidisciplinary teams both have a range of valuable characteristics and overlap in the task of integrating support: the multidisciplinary team can have one person in a leadership role sharing many of the characteristics of a keyworker; a keyworker can help generate an individualised multidisciplinary team when this is felt to be the best antidote to fragmentation. In some situations, one practitioner can combine the roles of keyworker and primary interventionist. This is explained further in the Discussion Topic 11, Primary Interventionists.

Keyworkers have an important part to play in integration. They are person-centred and bring many direct benefits to people. But the model still presents great challenges to service providers and only a minority of adults and children in the UK who could benefit from having a keyworker do so. Factors in this include practitioners’ time pressures and their apprehension about expanded and uncertain responsibility and accountability.

8 Limbrick-Spencer, G. (2001) The Keyworker: a practical guide

9 Limbrick, P. (2001) The Team Around the Child and Limbrick, P. (2009) TAC for the 21st Century

For Discussion:

• Which local services (public, voluntary or private) give children or adults a keyworker?

• What are their successes in establishing joint working?

• What are their failures in establishing joint working?

• Can you identify the main elements of good practice?

• To what extent are these keyworker services limited in terms of the numbers of people (who meet the criteria) they can help? Do they have waiting lists?

• How many service users would benefit from having a keyworker?

• In keyworker services you know of, how are keyworkers trained, supported, supervised and monitored?

• Do you have surveys of the views of service users on keyworking?

• Do you have the views of practitioners, managers and keyworkers on keyworking?

• Can co-production help you develop local keyworking?

• What published research do you have about keyworking with the group of people you are focused on?

• Other points?

Topic 10: Individualised multidisciplinary teams

An individualised multidisciplinary team can be defined for the purposes of this Manual as a small number of practitioners and other people committed to working together to support an individual child or adult. The person being supported is as full a member of the team as possible and parents are members of the teams around their children. An individualised multidisciplinary team will often also be multiagency. For instance, when a teenager, nurse, psychologist and teacher get together to address self-harming or smartphone addiction or when a parent, nursery worker, therapist and sensory-impairment teacher meet to support an infant who has neurological impairment.

A multidisciplinary team has to be much more than a mere group of interested people. Effective teamwork requires the members to work together in relationships of familiarity, honesty, respect and trust. Observations and approaches are shared so that the interventions fit well with each other and work towards an agreed shared goal. This is a whole approach to a whole person or, to put it another way, a coherent multifaceted approach to address a person’s multifaceted condition and situation. Team members support each other so that no one is alone in meeting the challenges the person brings. While, with effective leadership, a group can evolve into a team, in most cases something valuable would be lost if a team dissolves into a group.

An individualised multidisciplinary team around an infant with a multifaceted condition (i.e. two or more disabilities or impairments) can be termed a Team Around the Child, or TAC. The TAC approach has well-established philosophy, principles and practice. It brings key people together to support the child and the family with a co-ordinated pattern of appointments and interventions, it knits together therapy and education programmes into a whole-child programme and it facilitates joined-up support over the transition from pre-school to nursery or school.

The TAC approach is easily adapted to other service users. For example, an individualised multidisciplinary team around a frail elderly person would bring together key people from the settings the person uses simultaneously or consecutively. This can include practitioners from community health and social care services and staff members from the care home and/or local hospital. This integrated teamwork creates a unified plan of support that persists as the elderly person moves from one place to another and is the antidote to them being passed around like a parcel.

Some multidisciplinary teams are generic rather than individualised, overseeing support for a specified group of people rather than for an individual person. These multidisciplinary teams, which might also be multiagency, prevent fragmentation by bringing people together into a shared effort. Such a team could function in an integ-rated pathway to accept people into the process and then identify particular practitioners as potential key players in each person’s future support. For example, in services around children with disabilities this sort of generic or wider-scope multi-disciplinary team can establish TACs around individual children.

Caring activism
Commonly, multidisciplinary teams have strong elements of public service involvement. Caring activism offers another sort of teamwork around vulnerable people who might have little or no support from public, voluntary or private organisations. This approach is described in Caring Activism: A 21st century concept of care [10] :

Caring activism is proposed as a secular concept of care for vulnerable people of any age who are struggling with ineffective support or with no support at all...Team members would be ordinary citizens. They might be connected to a vulnerable person as a family member, friend or neighbour or as a worker in a local project or agency. Or they might have no previous connection before becoming a local caring activist... (pp 14-15)

Very many people receive very little support from their local public and voluntary services and many get no support at all. Examples with increasing incidence include people who are struggling without benefit payments, people who are homeless, people seeking asylum and people in refugee camps. Caring Activism brings concerned citizens together into a shared effort around a vulnerable person so they are not abandoned to their fate. This unofficial support could help a frail elderly person who is lonely at home and getting little or no help with basic needs. It could provide additional community support to the family of a child who has short life expectancy to enable them to maintain study, social, sport and leisure activities. It could support a young person who has left special school and is stuck at home with no training or occupation.

In summary, there are very great advantages when the key people around a child or adult integrate their support with each other in user-friendly individualised multi-disciplinary teams. Membership is ideally restricted to the small number of people who have the most regular, practical and direct involvement in providing support. Part of the role of the team is then to stay in two-way communication with other people in the support network but who are further from the centre or out on the periphery. When people who need support are fully involved in their multidisciplinary team, they are empowered to shape the support as they want it to be and are helped to gain confidence and strength to help them through future challenges.

We can widen the potential make-up of multidisciplinary teams further to include people who work in private agencies, for instance therapists and psychologists. When they are not included and have no opportunities to share their approaches and goals the outcome might be that the various elements of support for a person with disabilities and special needs do not fit well together or even work against each other. I address this further in Topic 18, Integration with the private sector.

10 Limbrick, P. (2016) Caring Activism

For Discussion

• Do you have individualised multidisciplinary teams established around some service users (adults or children)? Are any of these also multiagency?

• What successes do they bring?

• Do they work to:
  - construct a whole picture of the person they are supporting
  - co-ordinate all interventions in terms of dates and venues
  - harmonise their interventions
  - establish a keyworker
  - establish a primary interventionist when appropriate?

• What good practice do these teams bring?

• Do you have any generic multidisciplinary teams? Are they sometimes multiagency?

• What elements of integration do they give rise to?

• What are their failings?

• Do these generic teams help generate individualised teams around service users?

• Are there multidisciplinary teams of managers at any level? Are some of these multiagency?

• What elements of integration do they generate around the people you are focused on?

• Do you have surveys of views on individualised multidisciplinary teams from service users, from practitioners, from managers?

• What are the criteria for a child or adult being present in their team meeting – age, capacity, etc?

• Other points?

Topic 11: Primary interventionists

A primary interventionist [11] can be agreed for a service user by their multidisciplinary team. In this model, one team member has the most regular and direct contact with the person in need for a period of time. Other team members stay in the background to prepare and support the primary interventionist in their role. A multidisciplinary team that functions in this way is moving a long way towards a transdisciplinary model[12].

The primary interventionist model brings advantages to the person being supported and to the people providing support. Having only one interventionist might be the best for people whose social, emotional and psychological state at the time renders them unable to form plural relationships. Examples are people with social and communication difficulties and those suffering trauma. Having a primary interventionist should mean fewer appointments and brings the reassurance that the person supporting them has the whole picture of their condition, situation, needs and aspirations.

In transdisciplinary teamwork each team member hands over relevant knowledge and skills to the primary interventionist. This creates flexibility in how each practitioner spends their time. Those who are not the primary interventions are freed up for work with other service users. Practitioners extend their range of knowledge and skills by learning from their colleagues in practical situations. By eliminating unnecessary multiple practitioners and programmes, each agency or service makes better use of its resources.

A keyworker can take on the primary interventionist role if they have the time and necessary competence. In the One Hundred Hours model (see p 61), when keyworkers had a background in education and child development, this combined role evolved naturally in response to the wishes of parents. When this happened, working with the child and supporting the family merged into a seamless whole approach.13

11 See Limbrick, P. (2018) Primary Interventionists

12 King, G. et al. (2009) The application of a transdisciplinary model for early intervention services

13 Levitt, S. (1994) describes a whole approach around children who have disabilities in Basic Abilities: A whole approach

For Discussion:

• What local examples do you have of practitioners acting as primary interventionist either formally or informally?

• Are these primary interventionists established by an individualised multidisciplinary and multiagency team around the person?

• Are these primary interventionists effectively supported by other practitioners with relevant skills?

• What successes do these primary interventionists bring?

• What are their failings?

• Do you have surveys of views on the primary interventionist model from service users, from practitioners, from managers, from primary interventionists?

• What good practice do you have for your evidence base about the primary interventionist way of working?

• What published research do you have about primary interventionists for the group of people you are focused on?

• What published research do you have about primary interventionists for other groups of people?

• Other points?

Topic 12: Integrated pathways

When two or more agency directors or managers work together to develop a seamless support system for some local children or adults, the outcome will be a multiagency integrated pathway14. An integrated pathway has to be designed for a particular group of people who need support, it cannot be for everyone. For instance, managers from departments within social services can join managers from one or more departments within the health service to build a pathway for people with addictions. Managers from within education and health services can build a pathway that brings pre-school teachers and therapists together around babies and young children who have neurological impairment. A pathway for frail elderly people can be constructed by managers from social care, health and voluntary services.

An integrated pathway has five essential interconnected phases: the meeting phase; the learning phase; the planning phase; the support phase; the review phase.

The Meeting Phase
This begins when the person needing support encounters someone in one of the agencies who have created the pathway. There is no need for the person to approach other local agencies or services. There is a collective process now using available information to agree that the person does in fact need this integrated support and that the person wants to enter the pathway once it has been explained.

The Learning Phase
While some immediate support can be offered, more in-depth work might need to be preceded by a detailed assessment of the person’s condition and situation. This can have two elements: a general assessment process, perhaps with a whole-person focus; any assessment schedules individual practitioners wish to use in their work. Learning and support go hand in hand in integrated pathways as interdependent processes.

The Planning Phase
This is when a unified plan of action is agreed between the practitioners involved and between them and the person needing support. It is a single plan rather that a collection of separate plans. It will specify who is going to be offering interventions, what they will be working on, any joint working they will do and the date for the review.

The Support Phase
In this fourth phase, support is offered in line with the agreed plan. There is flexibility to address any new conditions or situations that arise.

The Review Phase
A team meeting, involving the person being supported, shares observations about progress and, if necessary, agrees a new or refreshed plan of action.

Rita Pfund [15] describes integrated care pathways (ICPs) in children’s palliative care borrowing from a UK government document. In this we learn that they are a tool and a concept that embed guidelines, protocols and locally agreed, evidence-based, patient-centred best practice into everyday use for the individual patient. She adds that an ICP aims to have the right people doing: the right things; in the right order; at the right time; in the right place; with the right outcome – all with attention to the patient experience.

In summary, an integrated pathway is a full expression of multiagency and multi-disciplinary integration. It allows the service user to see the whole journey in the support process ̶ where they are now and what is coming next. Practitioners too can see their work as part of the whole. People who feel lost and confused in the local maze of services will welcome an integrated care pathway as a map and a guide that shows what the journey is, who is contributing to it and how they all fit together.

14 See Limbrick, P. (2003) An integrated pathway for assessment and support

15 Pfund, R. (2010) Pathways in palliative care in Perspectives on palliative care for children and young people: A global resource

For Discussion

• Are there local integrated pathways for the people you are concerned with?

• Are they fully multidisciplinary and multiagency to the extent required?

• What are their successes in integration?

• What are their failings in integration?

• Are there some integrated pathways already operating for other local service users?

• Are there surveys of integrated pathways by service users, by practitioners, by managers?

• What good practice do you have for your evidence base?

• What published research do you have for your evidence base?

• In a new or enhanced integrated pathway:
  - which local agencies would have to be involved?
  - which departments of these agencies would have to be involved?

• Can co-production facilitate development of integrated pathways?

• Other points?

Topic 13: Directories and communication systems

It is very important for a locality to have an up-to-date directory of the agencies and services that can support people in need. A comprehensive directory is both an outcome of joint working and an essential tool for joint working. It is of equal value to service users and service providers and is an antidote to anyone becoming lost and despondent in the local service maze. Keeping a directory up to date will usually mean publishing it online with persistent attention to local languages, accessibility and readability. The system must offer guidance in using the directory and allow for questions about services and how to access them.

A major obstacle to integration can be a mismatch between local agencies in their communication policies and systems. If different policies are not the issue, then incompatible computer software might be. Perhaps the day will come when there are sensible multiagency decisions about communication systems. In the meantime, we have to accept it as a hindrance but not an insurmountable obstacle. People with an urge and a commitment to share information in the interests of joint working around users will use their ingenuity, creativity and persistence to achieve as much as they can within the local limitations and confidentiality rules. I can imagine co-production bringing some common sense into this.

In a local culture of integrated working, all practitioners must feel they share in the responsibility to find answers to users’ questions. It is then not appropriate to tell a user, ‘That is not part of my brief’ or ‘That is outside my area of knowledge’. Each question asked or problem shared must be passed to people who can respond to it ̶. within the agreement made with service users about confidentiality.

For Discussion:

• Is there a local general directory of service providers?

• Does this cater for the people you are focused on?

• Is it effective and up to date with due consideration to local languages, accessibility and readability?

• Is guidance and help offered in using the directory?

• Is a new directory required? Or a new section in an existing directory?

• Who could take responsibility for this?

• Can a local directory include those private services and practitioners who have signed up for joint working? Refer to Topic 18.

• Can a local directory include those community services and facilities that have signed up for joint working? Refer to Topic 19.

• Are there surveys of views on local directories by service users, by practitioners, by managers?

• Are there surveys of views on communication systems by service users, by practitioners, by managers?

• What are the major challenges to be addressed in information and communication for the people being focused on?

• What are the examples of good practice in writing directories and designing communication systems for your evidence base?

• Can co-production facilitate development of local directories and communication systems?

• Other point

SECTION 4: Considerations in Promoting Integration

This section discusses various topics that are connected in some way with integration of health, education, social care and other agencies and services supporting adults and children who have special needs for some reason. The section is intended to help readers identify local hindering and enabling factors. The four topics are:

• Partnership with service users

• Surveys

• Horizontal teamwork

• Personal attitudes to integration

TOPIC 14: Partnership with service users

Public agencies might differ from voluntary agencies in how well they work with users in service development. It is fair to predict that a voluntary agency that is recently established by people in need and the people around them will be proactive in maintaining the working relationship with service users. This is not necessarily true of health, education and social care agencies in which, traditionally, users are not powerful. A large part of the message of this Manual is that service users have a prime part to play in developing improved integrated support systems. Partnership work in service development has been termed co-production. There are necessary conditions in any organisation that promote the voice of service users. These operate at two levels:

• The culture of the organisation and its written policies must advocate service users having influence and control with a proactive effort at all levels to empower and work in partnership with service users. There must be an established forum for hearing the collective voice of service users.

• Individual managers and practitioners must have necessary skills for working in partnership with each service user they encounter, including skills in negotiating and active listening. There must be mechanisms for individual service users and the people around them to give feedback about to what extent they feel informed, involved and empowered in how support is, or was, provided to them.

If public agencies are going to become as responsive to service users as many new voluntary agencies are, then a new attitude is needed at all levels from directors down to people at the grassroots. Just as it would be nonsense to hold a meeting about race discrimination without involving black and ethnic minority people or a meeting about gender discrimination without involving women, so must it be seen as nonsensical and offensive to discuss service improvement in a public agency without involving representative service users.

We are told in the executive summary of The Challenge of Co-Production that:

[Co-production] is important and exciting for those of us who have been trying to shape a new conversation along these lines, arguing that the key to reforming public services is to encourage users to design and deliver services in equal partnership with professionals. The time seems to have arrived for the idea that the users of public services are an immense hidden resource which can be used to transform services – and to strengthen their neighbourhoods at the same time. [16]

When people who are dependent on some level of integrated support from health, education, social care and other agencies are brought more fully into discussions about service development, they can help at successive stages. Initially, they can help nudge their service managers into an integrated mindset. The late Dr Penny Lacey [17] of the University of Birmingham’s School of Education once observed to me that in her experience some agencies can delay fully implementing new official policy and guidance for ten years or more. In these cases, a strong message from service users, individually or in groups, might help get things moving more quickly.

If managers are going to be drivers for change, then some will first need to be persuaded why change is necessary. Service users can have a strong part to play in this. Very many of the health, education and social care agencies I have worked with have seemed to operate under a ‘take it or leave it’ institutional attitude. This is in spite of the commitment and professionalism of individual people working in them. Agencies that have transcended this out-dated attitude spend time learning in depth what adults and children feel about the support they are receiving and then respond to what they hear. This learning process will involve family members, carers and other concerned people around service users.

When an agency makes no serious attempt to find out what service users feel, service users are held powerless in the running of that agency. They are then also powerless to influence how the local agencies work together to provide an integrated service. While many adults and children are receiving unsatisfactory fragmented support, there is no mechanism for them to collectively report in depth to service managers, and then service managers have no incentive to strive for integration. So it goes on. Concerned managers and directors remain unaware of the problem while those happy to leave integration on the back burner can continue doing so.

Logically, service users should have a prime position in service development working in partnership with practitioners and managers. This is because they are the focus of each agency’s work and, by paying taxes, are footing the bill. The initiative does not have to come from management. A strong service-user forum, council or campaign group could take up the integration challenge focussing on local issues that it knows are relevant at the time. Service users and their family, carers and friends can then take every opportunity to talk about this push for joint working with service managers and directors. This will be very powerful.

If fragmentation has been highlighted in a survey as a problem for local people in need, there is nothing to prevent them and their representatives setting up a meeting about integration and inviting service managers to it. In this way, service users can be a strong driver for change. It is not a matter of setting service users against managers or vice versa. When users and managers can work together in the spirit of partnership, they will become very strong in shaping local provision.

In this, there is a danger to be avoided of exploiting willing service users beyond what is fair and reasonable. Agencies who want to benefit from service user expertise in on-going processes of service development must arrange their budgets so they can pay for it. This will include fees, travel expenses and any necessary child care. It is not reasonable or fair to expect service users to be the only people around the table who are unpaid and even ending up out of pocket. An agency’s budgets can be drawn up in anticipation of these expenses during each coming year. The potential benefit for the agency is very great.

16 See link in References to New Economics Foundation website

17 Ashdown, R. (2015) Penny Lacey – a celebration

For discussion

• What examples are there locally of service users being involved in the development of an agency or service?

• Are these service users in forums that the agency has helped establish?

• Are these service users in forums or campaign groups operating independently of local agencies?

• What are the successes here in partnership working?

• What are the failings here in partnership working?

• What models of good practice do you have for your evidence base?

• What examples are there locally of people around service users being involved in the development of an agency or service?

• Is there a need to establish or enhance a service-user forum?

• Is there a need to establish or enhance a campaigning organisation?

• Are you up to date with co-production?

• Who needs to be contacted to allocate service user fees and expenses for partnership working into future budgets?

• Other points?

TOPIC 15: Surveys

Integration plans must be firmly based in the experience and views of local service users and of the carers, friends, practitioners and managers around them. In this Topic I am focusing on service users but in many Topics the Manual emphasises the need to survey the views of professionals and of family members, friends and others around service users.

User surveys are an essential part of any process of involving service users in service development. While this manual is about integrating services to counter fragmentation, I would not suggest that local surveys should focus their questions in these terms. It is later, in the analysis of responses, that some dissatisfactions and unmet needs are identified as being caused by fragmentation and some elements of user satisfaction are found to be the result of people working together. The second of these two are the good practice that service development programmes can build on.

Which agency carries out the survey will depend on the local situation. It can be a health, education, social care or voluntary agency (or one of their departments) operating on its own. If two organisations are already working together, they can do a joint survey. If there are already some effective integrated pathways then each will have built into it a system for regular service user surveys. Even a survey carried out by a single agency can show problems caused to adults and children by fragmentation.

Questionnaires are not the appropriate medium for an in-depth survey. These are unlikely to do justice to the complexities of a person’s condition and situation or to the practical, relationship and emotional components. Interviews and group discussions will go deeper and accommodate a necessary broad scope. This is true whether the survey is for individuals or groups of people who share a condition or situation.

The topics to be surveyed in detail will depend on which service is doing the survey. It will be essential though to include some broad questions to make sure the person’s whole situation is properly covered. For instance, discussions can consider quality of life, sleep, children’s attachment and such negatives as fatigue, frustration and stress [18]. It will soon become clear to what extent agencies are helping or hindering service users in addressing these issues.

If agencies are serious about properly involving local service users of any age in the effort towards a seamless service, then managers will invite representative people into discussions in three stages: firstly to help design survey questions; secondly to help analyse responses to see which good practice comes from joint working and which problems are caused by people keeping their work separate from each other; thirdly to help develop new patterns of support in line with the survey findings.

A note of caution is appropriate. User-satisfaction explorations can be a painful process. When I have facilitated discussions between agencies and the families using them, I have seen managers in tears as they come to fully understand the shortcomings of the support their agency is offering. (And I have seen parents then in tears because they had not wanted to upset managers and team members.) While user-satisfaction surveys are a major concern in commerce and industry, they can be perceived as a threat in health, education and social care agencies – sometimes a threat to be avoided for as long as possible. There is need here for user surveys to be approached with all tact and sensitivity.

The experience, perceptions, frustration and aspirations of practitioners and managers in health, education and social care agencies are very important, too, and must play an important part in service development. There can be no partnership in integrating local support services without practitioner and manager surveys. Integration plans will not succeed if practitioners and managers have not been consulted and fully involved in discussions about all aspects of service development.

18 Negative states of mind in parents and practitioners are discussed in Limbrick, P. (2017) Early Childhood Intervention without Tears

For Discussion

• What examples do you have locally of public or voluntary agencies surveying the views of the people you are focused on?

• What examples do you have locally of public or voluntary agencies surveying the views of other groups of service users?

• What examples do you have locally of public or voluntary agencies surveying the views of people around service users?

• What examples do you have locally of public or voluntary agencies surveying the views of practitioners and/or managers?

• What are the successes in how these surveys are run?

• What are the failings in how these surveys are run?

• What good practice have you identified for your evidence base?

• From these surveys, what feedback is there to inform new or enhanced integration?

• Are service users involved in the three stages:
  - helping to design and run surveys
  - helping to analyse responses
  - helping to plan service development?

• Who needs to be contacted to allocate service user fees and expenses into future budgets?

• Other points?

TOPIC 16: Horizontal teamwork

Most professionals working in health, education, social care and the voluntary sector function in vertical hierarchies. This is how the Western world is organised. In this verticality, each person knows who is above them in the hierarchy as their manager and who is below them. Chief executives at the top are themselves subject to rules set by boards or committees above them. At the bottom end of each hierarchy are people who are not managing anyone else and who are subject to the decisions of all people in the various layers above them. Power is held at the top and it filters down.

This familiar arrangement breaks down when two, three or more senior managers from the local agencies get together to plan integrated systems and pathways for groups of people who share a condition. They must operate now outside the bounds of their usual verticality alongside other managers of equal status in an unfamiliar flattened power arrangement. In my terms, they are now operating in a horizontal landscape in which some managers might feel more comfortable than others. These levels of comfort will increase or decrease when service users are involved in the meetings.

This is horizontal teamwork [19] an example of which are TAC meetings operating at the grass roots level with practitioners and parents. They are both multiagency and multidisciplinary with the people in them treating each other as equals. No one takes an authoritative role of manager in these meetings, but one person can become the facilitator using leadership skills.

Each director, manager and practitioner will have their own response to the idea and practice of horizontality. That they will feel comfortable with it cannot be assumed or taken for granted.

19 Limbrick, P. (2012) Horizontal Teamwork in a Vertical World

For Discussion

Note: Discussions can include people’s personal experience of working horizontally, either in formal or informal situations.

• What local examples are there of informal horizontal teamwork around service users?

• What local examples are there of formally organised horizontal teamwork around service users?

• Are service users fully involved?

• What criteria apply for inviting a child to be involved in their individualised team meetings?

• Are family members, carers, and others involved?

• What are the successes in this horizontal teamwork?

• What are the failings in this horizontal teamwork?

• What good practice have you identified for your evidence base?

• What personal attitudes to horizontal teamwork have you encountered in yourself and in other people?

• How can you prepare and support service users in horizontal teamwork?

• How can you prepare and support practitioners in horizontal teamwork?

• How can you prepare and support managers in horizontal teamwork?

• How should attitudes to horizontal teamwork be explored when appointing new people to the organisation?

• Other points?

Topic 17: Attitudes to integration

Integration around adults and children who have special needs requires people to work together in effective relationships. This is basic human activity which gives full expression to personality, attitudes, integrity and self-awareness. Here we will find hindering and enabling factors that must be acknowledged. This section has four parts:

• Negative attitudes

• Identity

• Relationships

• Ways forward

Negative attitudes
Chief executives, senior managers, middle managers and practitioners all come with beliefs and attitudes. This is inevitable because they are people, not automatons. When it comes to joining their work with other people, some basic mindsets come into play: some people seem to be instinctively for integration, some are against; some take strength from a collaborative effort, some would rather do their own thing in their own way; some are confident in sharing their approach, others are not; some are ready to embrace and consider all aspects of the whole person’s condition and situation, some need to maintain a narrower focus to avoid being overwhelmed; some feel joint working is the fullest expression of their professionalism, some fear their professional standards will be compromised.

I have met all of these attitudes in my many workshops, seminars and conferences. There are no angels or devils here, no good people and bad people. The only judgement I feel qualified to make is that people who are suffering from fragmented support will be left with unmet needs if the managers and practitioners around them persist in working separately from each other. A person’s situation can be made significantly worse when health, education, social care and other agencies are not integrated into a seamless whole, as far as possible.

It can be valuable for directors, managers and practitioners to reflect on their present attitudes that can hinder or enable integration. I have seen practitioners who collectively long for integrated systems and pathways but whose managers resist creating them. I have met managers who are frustrated by practitioners’ unwillingness to work together in multiagency and multidisciplinary teams. I feel there are some very basic attitudes and assumptions at play here, both conscious and subconscious.

Any new integrated systems and joint working arrangements that leaders create will surely fail sooner or later if they have not acknowledged and addressed the valid fears, apprehensions and anxieties in some members of the workforce.

Identity
When managers and practitioners are asked to integrate their work with others, there can be a perceived threat to each person’s identity. Cake baking can illustrate these threats. Once a cake is baked, the flour, eggs, sugar and other ingredients have lost their identity as separate elements. They can no longer be found because they have merged into a new whole entity. In this illustration, the ingredients are the separate practitioners and the cake is the resulting seamless support system once the ingredients are successfully integrated.

While it is clear the cake has demonstrable value, some practitioners might resent the apparent loss of their separate identity. It can be that the child and family experience the best possible integrated support while some of the practitioners who contributed to it are no longer very noticeable. This is true when therapists and teachers join their work together into a whole-child programme. It is particularly true when a child’s TAC (Team Around the Child) opts to work through a primary interventionist. The primary interventionist model is a full expression of multidisciplinary integration but relies on practitioners being willing to be less visible in the interventions for the child. Some practitioners will be comfortable with this temporary perceived loss of identity and some will not.

Similarly, when directors and managers work with each other across agency boundaries to create local integrated systems, some will be more prominent in the end product than others. This is inevitable when joining various aspects of health, education, social care and other agencies into a whole approach. Some managers will be prominent in the operation of the pathway while others have a supportive role in how the pathway is designed, run and monitored. People who insist on being prominent might impede processes of integration.

Relationships
Integrated services must come down in the end to people working collaboratively with each other regardless of which agency or discipline they belong to. Their willingness or ability to do this cannot be taken for granted. Joint working depends for its success on relationships. Effective relationships include the following factors:

• Familiarity: People who already know each other and can relax to some extent with each other are more likely to be able to work together.

• Empathy: Practitioners can start to learn about the work of others ̶ their training, ethics and methods and their aspirations and frustrations.

• Respect: People who do not respect each other will not be willing to share their thoughts or approaches.

• Trust: This can grow from familiarity, empathy and respect. Practitioners who do not trust each other will not work effectively with each other.

All of these comments about relationships to support integration also apply to chief executives, senior managers and middle managers in a locality’s public and voluntary agencies. If managers do not relate with respect and trust to their fellow managers in the other agencies, they will be unable to work with them to construct seamless integrated systems and pathways. My thoughts about relationships have been supported and clarified by the work of Professor Hilton Davis [20].

Ways forward
It is crucial to explore, acknowledge, respect and address the apprehensions, misgivings and anxieties that people who work in agencies and services hold about integration. If this stage is missed out, many people will resist changing to new work patterns that require joint working. Service development plans should: disseminate early information about the commitment to enhance integration; survey attitudes about joint working; involve people in the discussions about service development; ensure new plans take account of apprehensions and anxieties expressed in the surveys; build feedback mechanisms into the new work with opportunities for support and supervision.

Time is an important factor. Changes to patterns of working need time for managers and practitioners to reflect on the implications for them and for the people they support. As joint working is founded in effective relationships, there must be allocated time to allow these relationships to grow. Respect and trust are very personal responses that cannot be made to happen on demand.

20 Davis, H. (2009) The Helping Relationship: Understanding Partnerships in IQJ

Davis, H. & Day, C. (2010) Working in partnership

For Discussion

Note: This discussion can start with personal anxieties, apprehensions, benefits and satisfactions about past, present and future joint working.

• What are the positive attitudes to joint working amongst the people in this project?

• What are or have been their apprehensions about joint working?

• What has helped them move on from negative attitudes?

• What positive attitudes have you encountered in others around the people you are focused on?

• What negative attitudes have you encountered in them?

• What has helped convert negatives into positives:

  • support from colleagues

  • practical experience of teamwork

  • training

  • supervision

  • other?

• In planning to develop or enhance some aspect of integration:

  • how can you learn about people’s apprehensions?

  • how can you build in antidotes to these apprehensions?

  • can you collect regular feedback about these antidotes?

• What in-service training will be needed in this to prepare and support practitioners and managers for the new systems?

• How should attitudes to integration be explored when appointing new people to the organisation?

• What good practice in this do you have for your evidence base?

• Other points?

SECTION 5: Wider Integration

This Manual has so far discussed integration at the level of public health, education and social care agencies and including the voluntary sector. In this section I want to extend joint working around people who have special needs to include: private services and private practitioners; community services and facilities and the people who work in them; academics in universities and colleges. There are three topics for discussion:

• Inviting private services into the integration effort

• Integration as a cultural phenomenon

• The responsibility of academics

TOPIC 18: Integration with the private sector

Within every locality there are private services and practitioners offering support to adults and children who have special needs. It is clear, with a person-centred focus, that private elements of support should not be excluded from the integration effort. Problems caused by fragmentation are not exclusive to public and voluntary organisations.

It might be generally assumed private enterprises cannot be part of integrated support. One reason is a mistrustful attitude towards them held by some people in the public and voluntary sectors. In this thinking, people in profit-making services cannot have high professional standards. This is not true in my experience. I would argue that each private service and practitioner has to be evaluated separately without assumptions.

A second reason might be harder to combat. This is that the fees paid by clients do not usually allow for extra time spent in joint work with other people. A solution to this can be to invite particular private services and practitioners into the integration effort with a requirement that they sign up to a set of locally agreed standards. They can then be listed in local directories as ‘integration-approved’. Also, when practitioners in public and voluntary agencies are asked by service users for information about relevant private services, they can refer to the same list.21

In my view, a proactive welcoming of private services and practitioners into locally integrated support services is an essential part of the process of creating a culture of joint working and must, sooner or later, become part of a sincere integration effort. This does not mean success will come easily or quickly.

21 The issue of practitioners in public agencies giving information to service users about private services is discussed in Limbrick, P. et al (2011) What do the terms ‘therapy’ and ‘therapist’ really mean in early childhood intervention for children who need on-going multiple interventions? in PMLD Link

For Discussion

• What are the main local private services and practitioners involved with the people you are concerned for?

• Which of these would you like to involve in joint working?

• Can you put these in priority order?

• Should the agreement you ask them to sign up to include:

  • seeking client’s consent before embarking on joint working

  • respecting confidentiality

  • asking the client about other interventions they are having

  • asking the client if there is any existing teamwork

  • trying to ascertain the whole picture of the condition and situation

  • trying to avoid fragmentations, duplications, inconsistencies and overload

  • considering the impact of a fragmented approach on the emotional and psychological status of the person

  • other considerations?

• Who will take responsibility for invitations to private services and practitioners?

• What good practice do you have for your evidence base of private enterprises joint-working with local practitioners and organisations?

• Other points?

TOPIC 19: Integration as a cultural phenomenon

We can go further into the integration effort by involving all other local services and facilities that adults and children who have special needs will need or want to use or, in some cases, be required to use.

This is where integration and inclusion overlap in the aspiration for rich and diverse communities in which people are treated fairly. Some shared effort and joint working might be necessary for each child and adult to participate in and benefit fully from all facilities and resources locally available. This can involve practitioners from public and voluntary agencies coming together with people in community services and facilities to remove obstacles that would otherwise exclude some people. Integration at this level promotes equality of opportunity and diversity within local communities.

Without this level of integration, some facilities and services will remain out of reach, disjointed and unsatisfactory. Joint working fosters inclusion making many things possible for people with special needs simply because people are working together with a ‘can-do’ attitude and positive relationships. A culture of integration of this sort requires a network for potential joint working.

A network for potential joint working
I am using the word ‘potential’ to suggest the groundwork for joint working must be pre-established in each community service or facility so it can be quickly and easily activated when necessary without the need for lengthy discussion and delay.

There are no limits to who should be invited into this local network. A short initial list might include institutes for evening classes and adult learning, leisure centres, sports and social clubs, gyms, swimming pools, libraries, adventure playgrounds, food banks, benefit agencies, hairdressers, dentists, opticians, magistrate courts, probation services, shelters and refuges. Joint working involving people in these facilities, people with special needs and, when necessary, the people around those adults and children can mean the person is not excluded, is enabled to get the best value from the service or facility and is treated with more respect, consideration and fairness than might otherwise be the case.

In many cases, people in community services and facilities will appreciate having a person’s needs explained to them and then be happy to contribute their skills to make inclusion possible. In this way, a child’s physiotherapist and swimming pool staff can work together to enable the child to use the pool safely and enjoyably. A dentist can confer with the people around a person with autism to make dental treatment possible. Court staff and a keyworker for a person with learning difficulties can work with each other and with the person concerned to help ensure fair treatment.

This sort of joint working might fall into place automatically for some people in need but not for others. I am suggesting a sincere effort to integrate support and reduce fragmentation for all adults and children will include establishing a local network of potential joint working. Inclusion in the network will be by invitation with an accompanying list of expected standards as it was for private services and practitioners in Topic 18. Community services and facilities that are approved to join the network will have an ‘integration-approved’ badge to display just as do those facilities that offer a hearing loop or changing place [22].

Perhaps generating this community culture of joint working seems a long way from encouraging health, education and social care agencies to work together. But, if we define integration as a process of joining things together with the purpose of achieving something better than was there when the things were separate, it becomes clear that joint working at community or neighbourhood level is all part of the same challenge. Otherwise, a person might receive seamless support from local support agencies but at the same time be unable to take a full part in community life.

22 The Changing Places Consortium campaigns on behalf of people who cannot use standard accessible toilets.

For Discussion

Note: The task here is to begin developing a network of potential joint working.

• What examples do you have of people in local community services and facilities working with people in need and/or the people around them to enhance the experience of the people in need?

• What are the successes in this?

• What are the elements of good practice you can add to your evidence base and build on?

• What local information do you have of people being excluded or having a spoiled experience for want of some joint working?

• What are the factors in these failures?

• Which services and facilities will you approach first to invite them into the network?

• Should the agreement you ask them to sign up to include:

  • listening to what the person in need wants

  • following their wishes about confidentiality and privacy

  • a willingness to learn about any special approach required

  • a willingness to be pro-active in seeking discussion when necessary

  • agreement to seek advice from the person overseeing the network

  • other items?

• Who can oversee this growing network?

• How can you feed ‘integration-approved’ services and facilities into local directories?

• Can co-production help grow this network?

• Other points?

TOPIC 20: Academic responsibilities in integration

This Topic comes quite late in the Manual but it could have been placed at the beginning. Students studying to be health, education or social care practitioners who are taught to work with others across discipline boundaries will take integration in their stride when they begin their professional work. It has never seemed logical or fair to expect practitioners to settle easily into joint working arrangements when they have had no experience of it or preparation for it in their university or college courses.

This lack in education and training has been a long-term obstacle to integration. Relevant professional training would: encourage practitioners to see the whole picture of a person’s condition and situation in addition to the more focused concern their discipline requires; offer a Systems Theory perspective emphasising interconnections and interdependence; provide opportunities in lectures and projects to mix with people on other courses to learn about their studies, concerns, practice, ethics, etc.

Universities and colleges could practise joint working as well as teaching it. Health, education and social care academics could work with each other in research, projects and writing course programmes. This would facilitate lecturers and students mixing with each other across disciplines and, importantly, generate research programmes in the subject of integration around people who have special needs.

Discussion Points

• Which people in your local academic institutions have an interest in integration between health, education and social care, or between just two of these three?

• Which people in your local academic institutions have a general interest in the people you are concerned for?

• Can you recruit local academic support for your integration effort:

  • locating relevant research papers and publications

  • providing meeting rooms

  • helping you run seminars and small conferences

  • supporting you at meetings

  • other support?

• Could you talk to students about integration?

• Could you suggest projects and research topics to local academics?

• Other points?

SECTION 6: First Moves to Promote Integration

This Section is about tasks for leaders. The word ‘leader’ refers in this Manual to any person promoting an integration project for local group of babies, children, teenagers, adults or elderly people who have some sort of special needs. Project leaders can be: a person with special needs; a family member, carer or friend; a director, manager or practitioner in a public or voluntary agency; an organiser of a support or campaign group.

Whoever they are, leaders will have to learn as they go along. They must find a way through territory that has never been properly mapped and that changes as they walk through it. People’s views about integration are an important factor and these will change in various ways when the implications and advantages of joint working are brought into clearer focus.

The first essential requirement is for a leader to share the task with one or more other committed people. Joint working starts here. Then, some initial work is necessary to get the process of integration started and bringing it to the point where it will continue as a shared effort with its own momentum ̶ multiagency, multidisciplinary or transdisciplinary. Given the great challenge that integration presents and the many factors that can hinder it, there must be a continuing effort in this first phase to recruit people who share the passion for joint working, know intimately the ill-effects of fragmentation and are committed to work for change – sometimes against all the prevailing winds.

TOPIC 21: Tasks for leaders

I have described a wide scope of potential integration including public and voluntary agencies, private services and community facilities. It is not advisable to set out at the beginning to achieve integration at all of these levels. There will be more success if there is an initial focus on the elements of joint working that experience and local surveys have shown to be the most urgent as necessary antidotes to harmful fragmentation.

This graded approach applies also to inviting people and services to join the integration effort. Some people will already be committed. Some others will join when they are approached with the collected evidence about fragmentation and the good practice to counter it. Some at this stage will reject the invitation. I have seen rejections come from all quarters: from an education agency when invited by health and social care; from a health agency when invited by an education agency; from a voluntary agency when invited by another voluntary agency. I have seen keyworkers frustrated when no one seemed willing to join with anyone else in a whole approach!

A helpful attitude for leaders in this is to be calm and patient. Plan first for the integration that is achievable with the people who are already involved and, when it is up and running, disseminate information about the benefits it has brought. This will surely help some people re-think their stance. Coming back to personal attitudes, some people might decide to join in because they start to feel excluded. An example of this is a psychologist who becomes aware one of the children on their case list has a unified and coherent whole-child plan of action to which they have not contributed.

There will not necessarily be a uniform response to the invitation across an agency. The fact that a director has declined does not mean separate departments within the agency cannot be approached or that a director cannot be approached when a manager or practitioner has declined. This persistent approach aimed at various organisational levels merely reflects the fact that at each level different conditions apply.

For discussion

Note: Part of the task for leaders now is to collate information from all Discussion Topics to make a coherent whole and then to agree a prioritised action plan.

• Is there clear agreement about which people are being focused on and the locality being focused on?

• Can you report the ill-effects of fragmentation, perhaps with a single A4 page and a more detailed account? Can there be filmed evidence?

• Is there clear agreement yet about the types of integration that are needed: across place; across time; to rationalise interventions; to harmonise interventions; other?

• Is there clear agreement yet about the approaches to be worked on: keyworking; individualised multidisciplinary teams; integrated pathways; primary interventionists; directory and communication systems, other?

• Which of these types and approaches are already in place to some extent and require enhancing?

• Which need establishing as new initiatives?

• Have you documented local good practice in integration for the people you are focused on and for other local people where it is relevant?

• Can you collect published research data about the ill-effects of fragmentation for the people you are focused on?

• Can you collect published research data about good practice in integration for the people you are focused on?

• Can you identify yet a core group of people already committed to this work with you?

• Are there any aspects fragmentation or of good integrated practice that the Manual has not covered?

• Are you up to date on person-centred practice, co-production, horizontal teamwork, caring activism?

• Other points?

References

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Web: https://councilfordisabledchildren.org.uk/

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Limbrick, P., Boulter. L., Wassall, Liz. & Rimmer, S. (2011) What do the terms ‘therapy’ and ‘therapist’ really mean in early childhood intervention for children who need on-going multiple interventions? In PMLD Link Vol 23, No 3, Issue 70

Limbrick-Spencer, G. (2001) The Keyworker: a practical guide. Birmingham: Wordworks with Handsel Trust

New Economics Foundation on Co-production.

Web: https://neweconomics.org/2009/12/challenge-co-production

Orelove, F. P. & Sobsey, D. (1996) Educating Children with Multiple Disabilities: A Transdisciplinary Approach. Baltimore: Brookes

Pfund, R. (2010) Pathways in palliative care. In Perspectives on palliative care for children and young people: A global discourse, eds Pfund, R. & Fowler-Kerry, S. Oxford: Radcliffe. p 189

Townsley, R., Abbott, D. & Watson, D. (2004) Making a difference? Exploring the impact of multi-agency working on disabled children with complex healthcare needs, their families and the professionals who support them. Bristol: Policy Press

Some additional resources

Anning, A. (2010) Developing Multiprofessional Teamwork For Integrated Children's Services. UK: OUP

Frost, N. & Robinson, M. (2016) Developing multiprofessional teamwork for integrated children’s services: Research, policy, practice. UK: OUP

Housley, W. (2017) Interaction in Multidisciplinary Teams. UK: Routledge

Hennan, D. & Birrell, D. (2018) The Integration of Health and Social Care in the UK: Policy and Practice. England: Macmillan

IFIC (International Foundation for Integrated Care)

Web: https://integratedcarefoundation.org/

Lloyd, H. M. et al. (2017) Collaborative action for person-centred co-ordinated care (P3C): an approach to support the development of a comprehensive system-wide solution to fragmented care. In Health Research Policy Systems. 2017; 15: 98.

Lawrence, J. & Thorne, E. (2016) A Systems Approach to Integrating Health in Education. USA: Cairn Guidance.

Littlechild, B. & Smith, R. (eds) (2013) A Handbook for Interprofessional Practice in the Human Services: Learning to Work Together. UK: Routledge

Lotrecchiano, G. R. & Misra, S. (Eds) (2019) Communications in Transdisciplinary Teams. California: Informing Science Press

Mallinson, I. (1995) Keyworking: Examination of a Method of Individualizing Care for Older People in Residential Establishments. UK: Avebury

Miller, R. (2019) Social Work and Integrated Care. UK: Routledge

Mitchell, R. (1993) Crisis Intervention in Practice: The Multidisciplinary Team and the Mental Health Social Worker (Studies of Care in the Community). UK: Avebury

Ovretveit, J. (1993) Co-ordinating Community Care: Multidisciplinary Teams and Care Management. UK: OUP

Payne, M. & Campling, J. (2000) Teamwork in Multiprofessional Care. London: Palgrave

Tebbett, K. et al. (2006) Management of Cerebral Palsy: A Transdisciplinary Approach. USA: Sage

Timmins, N. (2019) Leading for integrated care ‘If you think competition is hard, you should try collaboration’. London: King’s Fund

Sanderson, H. & Lepkowsky, M. B. (2014) Person-Centred Teams: A Practical Guide to Delivering Personalisation Through Effective Team-Work. London: Jessica Kingsley

Speck, P. (2006) Teamwork in Palliative Care: Fulfilling or Frustrating? UK: OUP

Stacey, M. (2009) Teamwork and Collaboration in Early Years Settings. UK: Learning Matters