People with Long-term Conditions including Cancer

This Topic Guide explores part of the RCGP curriculum, Being a General Practitioner. It will help you understand how to provide care for people with long-term conditions, including those living with and beyond cancer, by illustrating the key learning points with a case scenario and questions. It also contains tips and advice for learning, assessment and continuing professional development, including guidance on the knowledge relevant to this area of general practice.

Each Topic Guide is intended to illustrate important aspects of everyday general practice, rather than provide a comprehensive overview of each clinical topic. It should therefore be considered in conjunction with other Topic Guides and educational resources.

The role of the GP in caring for people with long-term conditions including cancer

As a GP your role is to: 

  • Work with patients, their families and carers in a collaborative manner that supports patient activation; encouraging individuals to develop the knowledge, skills and confidence to take an active role in their own self-care 
  • Work collaboratively with people living with long-term health conditions to agree goals, identify support needs, develop and implement plans, and monitor progress 
  • Move away from a disease-based model of care towards a person-centred system that takes a biopsychosocial approach, considering each person and their family holistically 
  • Involve the whole Multi-Disciplinary Team (MDT) to facilitate person-centred approaches to care, including the systematic gathering of information about an individual’s personal experience of living with their conditions and an organisational approach to collaborative care and support planning 
  • Proactively encourage lifestyle changes that will reduce the risk of other health problems in those who have already developed long-term conditions, cancer or multi-morbidity. 

Emerging issues in caring for people with long-term conditions, including those living with and beyond cancer

The increasing number of people living with long-term conditions is one of the biggest challenges facing our health and social care systems. GPs have a vital role to play in caring for those living with long-term health conditions and supporting those who care for them.  

The increasing health burden of single and multiple long-term conditions has created the need for improved prevention and proactive models of care. It also highlights why and how people should be given greater control of their own care and the importance of breaking down the barriers to how care is accessed and provided. GPs must become familiar with evidence-based techniques and processes to enable this within their everyday practice and their teams, such as Collaborative Care and Support Planning (CC&SP).1 

Around half of those people in the UK found to have cancer today will live for at least 10 years after diagnosis.2 As cancer survival rates in the UK improve, new healthcare challenges are emerging. GPs need to recognise and address the ongoing needs of the growing number of people living a substantial part of their lives with and beyond cancer. The role of the GP is wide-ranging and spans the management of physical, social and psychological factors, from healthy lifestyle promotion and help with financial problems through to dealing with fatigue and detecting recurrence of disease. 

The provision of truly person-centred care for patients with long-term conditions and cancer requires a whole-system approach. For this to be successful there needs to be: 

  • Engaged, informed individuals and carers 
  • Health and care professionals committed to partnership working 
  • Organisational and supporting processes in place 
  • A whole system approach which is broader than ‘medicine' alone 

Knowledge and skills guide

A long-term condition is defined here to mean any medical condition that cannot currently be cured but can be managed with the use of medication and/or other approaches and therapies.

This is in contrast to acute conditions which typically have a finite duration, such as an upper respiratory tract infection. There are likely to be many different interpretations of what constitutes a long-term condition. Ultimately, the best means of defining what is and isn't a long-term condition, and making decisions about care requirements, is as part of a conversation between an individual and their healthcare professional. 

In relation to the care of people with long-term conditions and those living with and beyond cancer, consider the following areas within the general context of primary care:

  • The natural history of the untreated condition(s) including whether acute or chronic
  • The prevalence and incidence across all ages and any changes over time
  • Typical and atypical presentations
  • Recognition of normal variations throughout life
  • Risk factors, including lifestyle, socio-economic and cultural factors
  • Diagnostic features and differential diagnosis
  • Recognition of 'alarm' or 'red flag' features
  • Appropriate and relevant investigations
  • Interpretation of test results 
  • Management including self-care, initial, emergency and continuing care and, chronic disease monitoring
  • Patient information and education including self-care
  • Prognosis 

For people with long-term health conditions, the interactions between and cumulative effects of multiple conditions, treatments and therapies must be considered, as well as the needs of the individual and their carers/relatives based on their circumstances. These interactions bring additional complexity to care, beyond the biomedical aspects of the specific health conditions.

Common and important conditions

Long-term conditions cover a wide range of health conditions (see definition above), including but not limited to any condition or combinations of conditions in the categories listed below: 

  • Non-communicable diseases (for example, cancer and cardiovascular disease); 
  • Communicable diseases (for example, Human Immunodeficiency Virus (HIV) / Acquired Immunodeficiency Syndrome (AIDS)); 
  • Certain mental health disorders (for example, schizophrenia, depression) and
  • Ongoing defined impairments (for example, blindness, musculoskeletal disorders)

Examples of common long-term physical health conditions include: 

  • Diabetes 
  • Cardiovascular (for example, hypertension, angina) 
  • Chronic respiratory (for example, asthma, Chronic Obstructive Pulmonary Disease (COPD)) 
  • Chronic neurological (for example, Multiple Sclerosis) 
  • Chronic pain (for example, from arthritis) 
  • Other long-term conditions (for example, Chronic Fatigue Syndrome, Irritable Bowel Syndrome (IBS), cancer) etc. 

Consider the following areas in the context of long-term conditions and cancer: 

Natural History of the Condition(s)

  • Different trajectories of illness commonly seen in long-term conditions and cancer. These take many forms, but common trajectory patterns include stepwise (for example vascular dementia), exacerbations (for example COPD), gradual decline (for example frailty) and relapse/recurrence (for example breast cancer).
  • Conditions which may become chronic through treatment or through the natural process of the disease

Service Issues

  • Whole system approaches to care, including integrated care models with GPs working in multidisciplinary teams alongside secondary care, social care and others 
  • Active identification, surveillance and follow up 
  • The importance of continuity of care within organisations, teams and with individual health professionals 
  • The important role of third-sector providers (such as voluntary organisations, community groups and social enterprises) which can provide tailor-made support and interventions for people with certain long-term conditions (LTCs) 
  • Identifying and supporting unpaid carers of people with long-term conditions 

Multi-morbidity

Multi-morbidity refers to the presence of two or more long-term health conditions. This includes physical and mental health conditions, ongoing conditions (for example learning disability), symptom complexes (for example frailty or chronic pain), sensory impairment (for example sight loss) and alcohol and substance misuse. In patients with multi-morbidity, consider: 

  • Opportunistic and proactive identification of polypharmacy and multi-morbidity 
  • Reducing the burden of multi-morbidity and treatment, including appointments, on the quality of life of the patient and their carers/family 
  • The possibility of coexisting mental illness such as depression and anxiety 
  • The possibility of one or more long term conditions disguising other conditions including cancer 
  • The patient's needs, preferences, priorities and goals including the role of carers and family 
  • Providing whole person care taking into account a patient's social, mental and physical wellbeing
  • The benefits and risks of guidelines addressing single health conditions 
  • The benefits of an agreed personalised management plan to coordinate care 

Cancer

One in two people in the UK now develop cancer at some point in their lifetime, and GPs play a vital role in preventing, diagnosing and caring for people with cancer. For examples of references to cancer across the whole curriculum, please see the Cancer in the Curriculum: Map. 

Cancer in the curriculum diagram

Living with and beyond cancer

More patients are living with and beyond a cancer diagnosis (cancer survivorship) and as a result live with the long-term effects of cancer and its treatment. These effects are wide-ranging and include, but are not limited to: 

  • Physical (for example long-term effects of surgery, chemotherapy, radiotherapy, hormone treatment, etc.) 
  • Psychological (for example adjustment, depression, anxiety, post-traumatic stress) 
  • Financial (for example loss of own/partner’s job, costs of care, costs of unfunded treatments)
  • Social (for example loss of role, educational impacts, relationship breakdowns) 

Other important issues include: 

  • The recognition of signs and symptoms of recurrence and relapse 
  • Continued health promotion relating to future cancer and other health risks 

Collaborative Care and Support Planning

The RCGP has endorsed Collaborative Care and Support Planning as an effective approach to increase patient activation, health literacy and self-management whilst improving some patient outcomes and health professionals' job satisfaction.

Care and Support Planning (CSP) is a systematic process, which replaces current planned reviews for people with long term conditions, and is focussed on a 'better conversation' between the person with LTC/s and a healthcare professional, enabled by preparation. The CSP begins with an information gathering appointment in which tasks and tests are collected ahead of the CSP conversation. The results of any information gathered, together with reflective prompts, are sent to the person 1- 2 weeks before the CSP conversation (preparation). The CSP conversation itself has a solution-focussed and forward-looking approach which acknowledges the experience and expertise of the patient and brings together traditional clinical issues with what is most important to the individual, supporting self-management, coordinating complex care and signposting to social prescribing. Organisational processes, practice care pathways and staff/team roles and support are redesigned to achieve this.

To apply this approach successfully, a GP requires a working knowledge of: 

  • The benefits of the Collaborative Care and Support Planning process 
  • The factors influencing the relationship and dialogue between the professional and the person/carer and the core principles of communication (for example a partnership approach, goal setting and action planning) 
  • The factors that should be considered in care planning (for example multi-morbidity, support networks, cultural background) 
  • The phases of the care planning process 
  • The ethical and legal issues (for example autonomy, consent and capacity) 
  • The issues around personal budgets and personal independence payments 
  • The organisational barriers to effective Collaborative Care and Support Planning and how these impact on quality of care, including:
    • Limitations on the time available in GP appointments
    • Local/national policies and targets 
    • Public sector funding policies, in particular those relating to health and social care 
    • Local policies (for example the management of Individual Funding Requests and how this differs in the four UK nations) 
  • Shared decision-making processes and their application to select tests, treatments, management or support packages, based on clinical evidence and the patient's informed preferences 
  • Tools which can be used to measure the spectrum of skills, knowledge and confidence of individuals and the extent to which they feel engaged and confident in taking care of their condition (for example the Patient Activation Measure (PAM)) 
  • Techniques and frameworks for enabling behaviour change and their application to interactions with patients with diverse backgrounds (for example Health Coaching).

Case discussion

Rose is 72 years old and has osteoarthritis, Type 2 diabetes and COPD. She is cared for by her daughter, but Rose also takes significant responsibility caring for her grandson, who has behavioural difficulties.

Rose's daughter makes an appointment with her GP, Dr Patel, because Rose's breathing has been 'a bit up and down'. Rose understands the importance of controlling her medical conditions but finds it hard to prioritise this when her daughter and grandson also need her support. During the consultation, Dr Patel notices that Rose's mood seems low, but the limitations of the 10-minute consultation mean she is only able to discuss this briefly.

Six months later Rose sees a different GP, Dr Price. Dr Price discovers that Rose frequently attends for emergency appointments and has missed her last two routine reviews because she had to look after her grandson.  After surgery, Dr Price speaks with Dr Patel about how they can best help Rose. Their practice is implementing Collaborative Care and Support Planning, and both agree that Rose could benefit from this approach and they identify one of the team to act as Rose's Care Coordinator.

The Care Coordinator contacts Rose and books two appointments at times convenient for her. During the first appointment, a Health Care Assistant collects all the information required in advance of the second appointment and performs relevant tests.

Rose and her daughter both attend the second appointment with Dr Patel. This is a 30-minute care planning appointment. Dr Patel facilitates the conversation to help them prioritise their goals and targets for the next year. Rose admits her mood has been low for many months and that improving her mood is her first priority and this would help her to better look after her grandson and manage her other health problems.

Dr Patel explains that a local talking therapies service is now available and Rose decides to try this. Rose feels that her breathing is currently manageable, so they make a shared decision to focus on her diabetes.

Dr Patel generates a Care Plan which Rose can take home with her. They agree on a convenient time for a follow up appointment.

Questions

These questions are provided to prompt you to consider the key points of the case. They can form the basis for a case-based discussion with your Educational Supervisor and will assist you in writing reflective entries in your ePortfolio. The questions are examples to trigger reflection and are not intended to be comprehensive. 

                                    Core Competence      
                              Questions                            
Fitness to practise    
This concerns the development of professional values, behaviours and personal resilience and preparation for career-long development and revalidation. It includes having insight into when your own performance, conduct or health might put patients at risk, as well as taking action to protect patients.  How do I feel about relinquishing control to my patients? 

How will I manage my own emotions and involvement with the intensity and intimacy of long appointments? 

How would I deal with the frustration of patients who do not follow through with their own goals and actions? 
Maintaining an ethical approach 
This addresses the importance of practising ethically, with integrity and a respect for diversity. 
How do I ascertain how much information Rose is happy for me to share with her daughter or with other agencies? 

How might the approach change if Rose suffered from dementia? 

How might individuals of different ages and cultures respond to this approach which shifts the balance of power towards the patient? 
Communication and consultation
This is about communication with patients, the use of recognised consultation techniques, establishing patient partnerships, managing challenging consultations, third-party consulting and the use of interpreters. 
How can I encourage Rose to lead the conversation in defining her own goals and targets? 

How can I encourage self-management? 

What might be the impact of third-parties on the consultation?  
Data gathering and interpretation
This is about interpreting the patient's narrative, clinical record and biographical data. It also concerns the use of investigations. 
What information should be collected during the initial collaborative care and support planning consultation? 

How can we support Rose in interpreting information to best aid decision making? 
Clinical Examination and Procedural Skills 
This is about the adoption of an appropriate and proficient approach to clinical examination and procedural skills. 
What structured tools am I able to utilise in assessing anxiety and depression?  

Can I accurately perform and interpret FEV1 measurements? 
Making decisions
This is about having a conscious, structured approach to decision-making; within the consultation and in wider areas of practice. 

How can we support Rose's autonomy in decision making? 

How can I ensure that Rose remains the priority when her daughter is also in the room?  
Clinical management 
This concerns the recognition and management of common medical conditions encountered in generalist medical care. It includes safe prescribing and medicines management approaches. 
How do I balance the patient's wishes with what I perceive to be medical priorities in management? 
Managing medical complexity
This is about aspects of care beyond managing straightforward problems. It includes multi-professional management of co-morbidity and poly-pharmacy, as well as uncertainty and risk. It also covers appropriate referral, planning and organising complex care, promoting recovery and rehabilitation.
Thinking about similar patients, how do I assist a patient in managing the psychological burden of chronic disease and cancer?  

How do I make a holistic, whole person approach to disease management work in a specialism driven secondary care system? 
Working with colleagues and in teams  
This is about working effectively with other professionals to ensure good patient care. It includes sharing information with colleagues, effective service navigation, use of team skill mix, applying leadership, management and team-working skills in real-life practice, and demonstrating flexibility with regard to career development. 
How can I ensure collaboration between different agencies including health, social and the voluntary sector? 

How can I effectively communicate this process with patient groups? 

How could I best involve other primary care professionals in the collaborative care and support planning process? 
Improving performance, learning and teaching  
This is about maintaining performance and effective CPD for oneself and others. This includes self-directed adult learning, leading clinical care and service development, quality improvement and research activity. 
What training will I and other professionals require to deliver patient-centred care? 

How can I improve my knowledge of local services to support patients and their families? 

How might I evaluate my current care for people with long-term conditions and audit the impact of a more structured and collaborative approach?  
Organisational management and leadership 
This is about the understanding of organisations and systems, the appropriate use of administration systems, effective record keeping and utilisation of IT for the benefit of patient care. It also includes structured care planning, using new technologies to access and deliver care and developing relevant business and financial management skills. 
How can I involve patients and carers in service redesign?  

What are the advantages and potential challenges of involving patients in the design of the process? 

How can I use my clinical leadership skills to bring about improved care for people with long-term conditions? 

How do I overcome the barriers to changing my practice's current approach? 
Practising holistically, safeguarding and promoting health 
This is about the physical, psychological, socioeconomic and cultural dimensions of health. It includes considering feelings as well as thoughts, encouraging health improvement, preventative medicine, self-management and care planning with patients and carers. 
How do I support the patient's family? 

What impact would Rose's social circumstances have on her health and wellbeing? 

When is it appropriate to involve a patient's relatives?  

How might I manage concerned relatives who take control of the conversation away from the patient? 
Community orientation
This is about involvement in the health of the local population. It includes understanding the need to build community engagement and resilience, family and community-based interventions, as well as the global and multi-cultural aspects of delivering evidence-based, sustainable healthcare. 
How can my team balance the requirement for availability of appointments with the need for longer appointments? 

How can I support the provision of community based services to support healthy living? 

How do I balance the needs of patients with long-term conditions against the wider issue of limited NHS resources? 

How to learn this area of practice

Work-based learning

As a GP, you should develop a flexible partnership-based approach, to agree shared goals, identify support needs, develop and implement action plans, and monitor progress.

To be effective as a GP, you should become familiar with approaches to enable better health and wellbeing outcomes for these patients, including the Collaborative Care and Support Planning process. This should include leading and working within the multi-disciplinary team to implement and facilitate the process for the benefit of patients and their families/carers.

It is also important to reflect on positive and negative experiences recounted by patients with long-term conditions and use this to consider how your own practice and attitudes as a clinician impact on these experiences.

You should get actively involved in cancer care reviews, health promotion and recurrence detection. Follow up patients with a new cancer diagnosis to ensure continuity of care and in order to understand their journey through the cancer care pathway – including the effects that the diagnosis, the disease and treatments have on them and their family.

Self-directed learning

You can find e-Learning module(s) relevant to this Topic Guide at e-Learning for Healthcare.

There are many structured courses available to facilitate the delivery of Collaborative Care and Support Planning. Related to this, the Year of Care partnership is a quality assured national programme offering a range of support and training options including many resources to support all elements of the House of Care.

National voices have produced a guide to care and support planning to help healthcare professionals and people with need to understand and take part on the process whilst NHS England has released a handbook aimed at commissioners and care practitioners to set out what personalised care and support planning is, and how to deliver it.

Cancer

MacMillan Cancer Support

downloadable booklet outlining the long-term consequences of cancer treatment. 

RCGP Toolkits

The RCGP toolkits are regularly updated.

Collaborative Care and Support Planning (CCSP)

RCGP – Collaborative Care and Support Planning

RCGP endorses CC&SP as core business for general practice highlighting that it is an effective way to manage multi-morbidity. It has published a number of documents outlining specific recommendations and supporting commissioners and practices to implement CC&SP as a tool for supporting people with long-term conditions.

Coalition for Collaborative Care

The Coalition is an alliance of people and organisations committed to making personalised care and support planning the norm as a means by which people can be full partners with health and care professionals. 

The King's Fund

The King's Fund has published many papers on CC&SP including one describing a co-ordinated service delivery model – the 'house of care' – that aims to deliver proactive, holistic and patient-centred care for people with long-term conditions

Think Local Act Personal (TLAP)

TLAP have developed a range of materials to support councils and other people and groups to put the Care Act into practice. The Personalised care and support planning tool formed part of this. 

NHS England

NHS England has published a series of handbooks for commissioners and care practitioners setting out what personalised care and support planning is and how to deliver it.  

Person-centred care and shared decision-making

The Health Foundation

The Health foundation has developed a 'person-centred care resource centre' which provides a starting point for planning and funding (commissioning) shared decision making and self-management support

Examples of how this area of practice may be tested in the MRCGP

Applied Knowledge Test (AKT)

  • Risk of second malignancies after treatment for cancer 
  • Prescribing in patients with multi-morbidity 
  • Entitlement to statutory benefits

Clinical Skills Assessment (CSA)

  • Man who had leukaemia as child, attends frequently for apparently minor conditions 
  • Woman with Ehlers-Danlos syndrome is struggling to manage her work as a primary school teacher  
  • Home visit to a bedbound woman with a spinal injury who has become mildly confused. She has had treatment for repeated UTIs. 

Workplace-based Assessment (WPBA)

  • CbD (Case Based Discussion) with a woman who cares for her frail elderly blind father with dementia, who is also your patient. She is asking for your help as she can no longer cope with him 
  • Learning log on a man living in a nursing home on dialysis who wants to stop treatment 
  • Learning log on a young adult with cerebral palsy who has epilepsy. 

Next: Maternity and reproductive health >

References

NHS Data Dictionary

1 RCGP toolkits
2 Macmillan Cancer Support. Living with and Beyond Cancer 

The item has been added to your basket.

Continue shopping

Go to basket

This item is out of stock.

Continue shopping

The item is out of stock.

Yes Continue shopping

An error occured adding your item to the basket:

Continue shopping