Health CommitteeWritten evidence from Dr Sue Roberts (LTC 11)



This submission describes an unique opportunity to bring together all the ideas and expertise about Long term conditions (LTCs) around a practical, reproducible and transferable approach to providing better services and better support for people and their families who live day to day with these conditions. This is outlined in a Delivery System designed around personalised care planning and integrated care which focuses on culture change as the driver for system change.

1. LTCs are now the commonest cause of death and disability in England and people who live with LTCs are the biggest users of services and greatest generator of costs. Despite a robust evidence base, and compelling economic case, there has been little improvement over the last 10 years.

2. Many of the elements needed to support change have been developed but are fragmented.

3. On 19 March 2013, 44 individuals and organisations working on various components of the LTC agenda came together at the Kings Fund in an event co sponsored by Anna Dixon (Director of Policy at the Kings Fund) with Martin McShane (Director of Domain 2, NHS England) to review current activity and pledge to work together to support a joined up “Delivery System” (DS)2 as a starting point for local communities to design “a better way of working”.3

4. A convening group is developing a “hub” for this “coalition of the determined” to act as a source of consistent messages, and practical support, including training, to enable local commissioners and providers “to get on with it”. This group includes the People Powered Health (PPH) Programme led by NESTA which has similar aims; that all people with LTCs gain the knowledge, skills and confidence and receive the coordinated support they need to live more comfortably and effectively with their condition/s; and the NHS can benefit from the financial savings associated with this new way of working.4

5. A unique feature of the DS is that while it provides a common framework this delivers a tailored, personalised package of care and support for each of the 15 million people with one or more LTCs.

6. The barriers to be overcome in making this widely available include changing attitudes amongst health care professionals, which can be addressed by the training and support included within the DS itself; and fragmented commissioning for LTCs which would benefit from coordinated national policy.


7. It is important to recognise that LTCs which at present cannot be cured can be prevented and ameliorated by changes in behaviour and community support as well as by drugs and traditional therapies.

8. Organisations which represent service users5 emphasise five key issues. These are coordinated (integrated) care, patients engaged in decisions about their care, support for self management (SSM) linked to better prevention, early diagnosis and clinical care with emotional, psychological and practical support. These elements need to be wrapped up in a culture which places equal value on the lived experience of the person with the condition/s and the technical expertise of the health/social care professional.

9. Despite a strong evidence base for supporting personalised services6 people are not involved in their own care as much as they want to be. Less than half of those with diabetes report discussing their own goals or developing a plan;7 less than 40% with multimorbidity, feel confident to manage their own condition.8

10. Current service configuration is designed around the traditional need to treat, cure or palliate and has been too slow to accommodate change.

11. Nearly half of all those with LTCs have more than one condition (multimorbidity). In the recent past the focus for delivery has been on those (5–10%) who are individually at highest risk of emergency admission and greatest NHS spend. However the greatest number of emergency admissions comes from the much larger pool of those with multimorbidity9 who are at earlier stages of their condition/s, where prevention of complications and deterioration may be possible by good care planning and by effective self management. It is short sighted as well as inefficient to concentrate effort on those individuals at highest risk; a common approach will benefit everyone with the added potential of increased penetration and sustainability of system wide culture change.

The Delivery System

12. The DS is built on the learning from the Year of Care (YOC) programme,10 sponsored by the Department of Health and using diabetes as an exemplar for all LTCs. The approach puts people with LTCs firmly in the driving seat of their care and supports them to self manage. It transforms what is often “tick box” care encouraged by the QOF system into a constructive and meaningful dialogue between the healthcare professional and the person with diabetes. Adapting this to other LTCs, the DS includes:

A collaborative care planning consultation for everyone including shared decision-making, which brings together the individual’s and the professional’s perspectives and expertise, encompasses all the individuals’ health issues and supports the individual to identify their own information needs, goals and action plans.

Sign posting to a range of local services, including telehealth, that people need to support their goals and actions via social prescribing,11 described by PPH as “more than medicine”.

Coordination/integration of any additional clinical and social input required from integrated multidisciplinary teams (MDTs).

13. The YOC sites recognised that this new way of working cannot happen within the current constraints of time, clinic organisation and workforce design. They arranged the issues that need to be addressed into a “House of Care” as a guide for those that wish to introduce this new way of working.

The “walls”, “roof” and “foundations” act a checklist of what needs to be in place. The left wall emphasises the informed and empowered patient and the right wall the health care professional committed to partnership working. The roof indicates the local processes that need to be included and the foundation is formed by commissioning tasks.

The “house” also acts as a metaphor emphasising that all components need to be in place if care planning is to be embedded and sustained. This was recognised in the training programme, now delivered to over 3,000 professionals via quality assured trainers, which challenges attitudes, and develops new skills while encouraging participants to “build their own house”. This has enabled the basic intervention (personalised care planning) to be transferred to other health communities, and other single or multiple LTCs in a reproducible way.

14. This approach works for people with low health and language literacy thus reducing inequalities, acknowledging that those with poor “activation” may need additional support. It provides a generic approach adaptable to prevention (“Health checks”), to people with complex bio psychosocial needs or Personal Health Budgets, who are frail or are approaching the end of life. This common way of working and training leads to economies of scale for practices and teams.

An Example from Diabetes

15. In Tower Hamlets (TH), an area of high deprivation and ethnic diversity, the indices for diabetes care were amongst the worst 10% of PCTs in 2005. By March 2012 TH reported the best in England.

16. Care planning became the norm for people with Type 2 diabetes (March 2012). Ninety five per cent had had at least one annual care planning consultation and 40% more than one. Uptake of the nine key elements assessed in the National Diabetes Audit12 improved dramatically. Ninety six per cent of people had the three “traditional” components of diabetes care (HbA1c, BP and cholesterol) measured and 74.2 % had all nine components recorded. This value is the highest reported in England (average 54.3%). Clinical indicators also improved; the proportion of people with good control of all three indicators for development of diabetes complications increased from 24% to 35% (England average 20%).

17. Improvements in patient experience, job satisfaction, and practice organisation were directly observed. Positive answers to the question “I have had about the right amount of involvement in my care rose from 52% in 2006 to 82% in 2009.

18. Patients and staff reported shifts in behaviours; “Each time I get a greater understanding of my condition and understand more about how I can go about maintaining and improving it”. (Person with diabetes), “YOC is a great idea because it is focussed around the individual. I’m happy that I get more of a say in my care.” (Person with diabetes from Bengali community); “Care planning has made me look at patients differently. I focus less on the disease and take a more holistic perspective”. (Nurse7), “It has given a more structured, planned approach to diabetes. (GP1)

19. The Public Accounts Committee13 recently reported that the processes and outcomes of care in diabetes are not consistently provided to an adequate standard. The example from TH demonstrates that this can change. It also illustrates that providing improved clinical care for people with diabetes is not a separate challenge from providing tailored support to self manage for each individual. They are part and parcel of the same approach, with economies of scale for practices, teams and training.

Obesity, Mental Health and Ageing

20. While there is a large literature supporting a multipronged approach to reducing obesity which ranges from addressing the obesogenic environment to surgical solutions, obesity is essentially a behavioural issue.

Care planning ensures that the opportunities to address individual behaviour during routine contacts with the health service by people who are obese, at risk of becoming obese or already have complications are used in the most effective way.

21. Physical and mental health conditions are inextricably linked for people with LTCs.

People with enduring mental illness carry an enormous burden of physical ill health. Currently care is fragmented and poor. Care planning provides systematic, regular review mirroring the principles of “recovery” pioneered in mental health services, but which could be carried out by primary care teams already trained to provide this for their registered population.

When physical health issues are the primary diagnosis depression is two to three times more common compared to those with no health issues14 as a consequence of their condition/s and the therapeutic challenges this poses for themselves and those they live with. This can be exacerbated by lack of information, or the way information is provided at diagnosis or routinely, but it can be ameliorated by appropriate skills and behaviour on the part of clinical staff and the way services are organised. Care planning ensures that care from diagnosis onwards is provided in such a way as to prevent mental health issues developing or at the very least avoids exacerbating them.

22. Ageing: The current focus on “multiple LTCs” and “co morbidities” can lead to confusion with specific issues of ageing.

Ageing needs to be seen as a process. People pass through stages of “preparation” for old age, “active” old age, and “vulnerable” old age and “dependant” old age. Regular care planning for people with LTCs as they enter the phases of “preparation” and “active old age” can help to emphasise prevention. For instance if the onset of dementia can be delayed by five years (by physical activity) the prevalence is halved.15

A LTCs strategy should incorporate a systematic approach to these stages, with better prediction tools for each stage as part of local end to end pathways.

Can this New Approach be Implemented at Scale?

23. The learning from the YOC Programme suggests that making change needs a whole system approach. Two main issues (health professional attitudes and joined up commissioning) both need to be addressed to enable the service to capitalise on the opportunities the DS provides.

24. The YOC team found repeatedly that new skills and ways of working cannot be embedded or sustained without new ways of thinking.

Working with “patients”: Sixty percent of GPs do not endorse people being independent decision makers,16 still seeing their role as “doing to” rather than “doing with”. These attitudes can be challenged and changed by quality assured training with positive outcomes for all. Links with the Royal Colleges and Health Education England provide an avenue to review training capacity.

Working with colleagues: Overcoming the concerns of specialists about the quality of primary care is essential for progress. YOC sites found that local care planning training identified the need for closer work with specialists which could be commissioned and built confidence. Practice nurses, currently doing the majority of care for people with LTCs, had no basic training in consultation skills and nurses and social workers in integrated MDTs remained uncomfortable about working across professional boundaries.

25. Commissioning and resources:

Care planning stimulating new ways of working within GP practices. Overall the changes in skill mix and roles were cost neutral. But there were transition costs and extra resources needed for disadvantaged populations.

New ways of working by specialists are equally important to support primary care in their new roles. The current configuration of consultant job plans and inflexible use of the tariff were major barriers to this.

There is little incentive to change while commissioning for LTCs remains fragmented at local and national level.

The main services that people with LTCs need are commissioned by different routes; care planning in primary care via NHS England (NHSE) using the GP contract; better use of community services to SSM via Health and Wellbeing sBoards; and specialist care when necessary by Clinical Commissioning Groups. The lack of integration of Health and Social care is recognised.

Centrally, the main components of a LTC Strategy are the responsibility of different parts of NHSE and Public Health England.


26. The DS provides a starting point for a “new deal” for people with LTCs built on a new relationship between the individual and the healthcare professional and better use of primary care and community resources. There is willingness by senior leaders to endorse this. This needs to be matched by a coordinated national policy which understands the issues and the importance of integration and service and workforce redesign to support this new way of working.

27. I would welcome the opportunity to describe this important new initiative to the HSC in person.

7 May 2013



The aim of the current initiative is to bring together all the expertise across the “LTC Landscape” (a coalition of the willing) around a Delivery System as a starting point for comprehensive change; led by the people involved (service users, policy makers, academics, practitioners, Colleges, trainers, service providers etc) and offering those “on high” a chance to help to make it happen more easily.


Chronic diseases are now the commonest cause of death and disability in England and people who live with long term conditions (LTCs) are the biggest uses of services and greatest generator of costs. It is now recognised that the care and support needed to live with a LTC is fundamentally different to that for acute episodic conditions, and that this will require services for people with long-term conditions to be radically redesigned. However, despite exhortation from people who live with LTCs, consistent health policy, a robust evidence base and a compelling economic case, progress on the ground has been painfully slow with little improvement over the last 10 years.

Many of the elements needed to support change in England have been developed, drawing on international best practice, but they remain fragmented. Top down exhortation and targets have failed to influence change and clinical behaviour at the grassroots. The missing component, which is a practical, robust, reproducible and transferable delivery system developed by practitioners and service users in England is now available.

Key Issues

The Delivery System is described below. Some of the key issues it addresses include:

People who live with long term conditions are central to the process. They are involved in articulating their own needs and deciding on their own priorities, supported by health and social care professionals through a process of information sharing, shared decision making and action planning.

Support self management (SSM) and the development of partnership relationships between people who live with LTCs and health care professionals is at the heart of service delivery. This shifts the focus onto the roles and responsibilities of both, and the systems that are needed to support them. The ultimate aim is that people should have the knowledge, skills and confidence to manage their condition effectively in the context of their everyday life.

The Delivery System can help to reduce inequalities. The number of LTCs and their burden falls disproportionately on those with poor health literacy and in lower socioeconomic groups. Tools, skills training and ongoing support in a variety of formats are available to identify both those who find it harder to engage with health issues (low levels of “activation”) for whatever reason, and who will who need extra support.

The Delivery System not only brings together well planned and coordinated specialist support but is based on a generic approach. This ensures that each individual is involved in a single, holistic care planning process with a single care plan. The common set of relevant skills and processes involved also reduces the burden of training.

Quality assurance of the philosophy, core approach and skills is essential to ensure that implementation both builds on relevant evidence and experiential knowledge and ensures that the intervention is delivered consistently increasing the likelihood that it will lead to the impact expected. “While the case for SSM is strong not all reported SSM interventions are effective.”

Care planning is the gateway to personalisation and/or personal health budgets.


The delivery system provides a robust, systematic and reproducible approach, transferable to any setting and for people with any single or multiple LTCs, including multi morbidity which ensures that each person receives a uniquely personalised service bringing together support for self management with high quality clinical and social care, delivered in a systematic, coordinated and high quality manner.

The two part delivery system includes a guide to the components and a quality assured approach to implementation:

The Components

A collaborative care planning consultation for everyone including shared decision-making, which brings together the individual’s and the professional’s perspectives (agendas) and expertise, encompasses all the individual’s health issues and supports the individual to identify their own information needs, goals and action plans.

Access to a range of local services people need to support the goals and actions they identify, including social prescribing.17

Coordination of any additional clinical and social input/support required from integrated multidisciplinary teams.

Care Planning

Care planning is a proactive intervention with the frequency of care planning consultations being determined by the interaction between systematic interrogation of practice and disease registers (“population risk stratification”), and individual needs (agenda) identified in dialogue between the person, the health professional and relevant carers. The frequency, style, intensity, place, person and finances for follow up (in intervals between care planning consultations) are determined during the care planning process itself.

Individual care planning is a three step process of preparation (reflection by the individual on relevant test results and/or prompts—collation of health issues by the professional), the consultation itself (identifying information needs, goals and action plans, and explicit arrangements for follow up), with summarising and recording.

This usually cannot be carried out without changes to the culture and infrastructure of care, thus driving change.

The Year of Care “House” model describes the issues which each team will need to address to make care planning possible.

The “House” model reinforces the whole-system approach and acts as both a metaphor and an implementation checklist.

As metaphor, it emphasises the interdependence of each of the elements, protecting and enabling the new clinical consultation. If one “wall” is weak the structure is not fit for purpose.

As a checklist, it provides a reproducible and flexible mechanism to identify the essential processes and systems which promote awareness, engagement and clarity across clinical teams, stimulating reflection on the ‘building blocks’ available locally and areas that may need prioritisation for improvement.


The delivery system invites local services to work through the “house” for the particular health/social care setting relevant to their particular population, ensuring that attitudes, skills and infrastructure are all addressed together by using a quality assured approach leading to culture and system change. Importantly, the care planning consultation is in the centre of the house; local services need to ensure that all of the elements of the house are reliably in place for every care planning consultation.

This will involve:

Acknowledging the philosophy and principles of systematic support for self management (the driver of the delivery system).

Identifying accountable leadership

Identifying the population involved (“risk stratification”).

Identifying the capacity of individuals to engage in the processes; supporting them to do so.

Identifying the multidisciplinary/integrated delivery teams involved and the roles and responsibilities of team members in order to ensure that care is co-ordinated.

Using available evidence-based and quality assured interventions.

Identifying metrics, methods of collection, analysis and feedback; to drive improvement.

Alf Collins, Simon Eaton, Jim Phillips, Sue Roberts: with thanks to all those who have contributed

1 The Delivery System convening group: Alf Collins, Simon Eaton, Jim Phillips, Sue Roberts

2 Convening document: ‘Delivering better services for people with LTCs—getting on with it!’ (attached);

3 The Kings Fund event is being written up as a Report.


5 Richmond Group of Charities and The King’s Fund. From vision to action: Making patient-centred care a reality: 2012. and National Voices. A narrative for person-centred coordinated care Consultation for National Commissioning Board

6 The Health Foundation: Self Management Support Resource Centre:

7 Healthcare Commission (2007). Managing Diabetes: Improving Services for People with Diabetes. Service Review

8 QIPP LTC Programme 2011 : Personal Communication

9 Roland M and Abel G. Reducing Emergency admissions; are we on the right track? BMJ 2012;345:e6017 doi: 10.1136/bmj.e6017

10 Year of Care. Report of findings from the pilot programme. 2011: Diabetes UK

11 Year of Care. Thanks for the Petunias: a guide to developing and commissioning non-traditional providers to support self-management of people with long term conditions. NHS Diabetes 2011.

12 Health and Social Care Information Centre. National Diabetes Audit 2010–11

13 House of Commons: Public Accounts Committee; 17th Report—Department of Health: The management of adult diabetes services in the NHS. HC 289. 6 November 2012

14 NICE: Depression with a chronic physical health problem. Clinical guideline 91:

15 DeFina L F, Willis B L, Radford N B, et al. The Association Between Midlife Cardiorespiratory Fitness Levels and Later-Life Dementia: A Cohort Study Annals of Internal Medicine. 2013, 158. Ann Intern Med. 2013;158(3):162-168. doi:10.7326/0003-4819-158-3-201302050-00005

16 Hibbard J H, Collins P A, Mahoney E, Baker L H. The development and testing of a measure assessing clinician beliefs about patient self-management. Health Expect. 2010 Mar;13(1):65-72. doi: 10.1111/j.1369-7625.2009.00571.x. Epub 2009 Nov 1

17 Social prescribing is an “unfortunate” term in common use for referral to non traditional community services to support self management such as exercise “on prescription”.

Prepared 3rd July 2014