Patients with multimorbidities
Dr Isabel Hodkinson
RCGP Clinical Champion for Person-Centred Care and Support Planning
GP in Tower Hamlets
Freelance social researcher
Professionally owned models of care are not always in the best interest of people living with long term conditions, particularly those with multimorbidity. This article tells their story and suggests solutions through a person centred collaborative approach, working in partnership with each individual to personalise their care through care and support planning.
Illness Burden - widening the view from health to health and wellbeing
Current definitions of long term conditions (LTCs) are clinically dominated, mental health problems and issues like chronic pain often poorly documented or coded and from a person-centred perspective and the issues that really matter like loneliness, mobility problems or being a burden to their family are not always captured.
Culture of care in health
Culturally there is an emphasis on 'fixing' people (often called the medical model), with tick box application of guidelines. This can result in a failure to respect the person as an expert in themselves and the skills and resources they can bring to living well with long term conditions.
In addition, service delivery for LTCs tends to split physical and mental health, despite the significant overlap and doesn't always consider the wider resources available to the person with long term conditions.
Mental health problems in addition to physical LTCs are often associated with higher numbers of LTCs, deprivation, poorer self-care and health behaviours, lower quality of life and poorer clinical outcomes and prognosis, despite increased service use and costs1.
Novel examples of ways of framing more realistic and meaningful aims of treatment for the person, all of which involve engaging the person in creating the goals of care and how these can be delivered in partnership, are:
- The Pain Toolkit, a model of chronic pain self management:
'Tool One: Accept that you have persistent pain and then begin to move on. Acceptance is not about giving up but recognising that the patient needs to take more control with regards to how they can better manage their pain.'
'Acceptance is also a bit like opening a door - a door that will allow the patient in to lots of self managing opportunities. The key that they will need to open this door is not as large as they think. All they have to do is to be willing to use it and try and do things differently'2. Pete Moore, Patient.
- The Recovery model in mental health:
'It aims to help people with mental health problems to look beyond mere survival and existence. Recovery is not about 'getting rid' of problems. It is about seeing beyond a person's mental health problems, recognising and fostering their abilities, interests and dreams.'3
- Collaborative care and support planning:
This is based on the recognition that 'people with LTCs are in charge of their own lives and self-management of their condition and are the primary decision-makers about the actions they take in relation to the management of their condition'. The focus moves from the clinician doing things to the person, to one which enables clinicians to support people's confidence and competence to manage the challenges of living with their condition.4
Burden of Treatment
The disease-by-disease approach to care delivery can also contribute towards significant increases in 'burden of treatment' (potentially inappropriate or harmful) for those with multimorbidity, creating 'work load' for patients which may then outstrip the person's capacity to cope, possibly contributing to mental ill health.
The Comulative Complexity Model5 describes the individual's response to being overburdened:
There are two main types of response to this:
Diminish the treatment demands made on the individual:
Examples of how this can be done:
- Have a coordinated approach to organising all the investigations and checks that the person needs as part of their preparation for care planning6.
- Enable facilitative community specialist input into a person's care, usually indirectly by email or phone conversations with primary care clinicians or via specialist supported peer learning, avoiding the need for outpatient attendance by that individual.
- Holistic personalised medication reviews - for example, the STOPP START toolkit7.
Increase the capacity of the person to self-manage / cope
A person who is an effective self-manager, that is 'activated', has 'the knowledge, skills and confidence to manage their own health and healthcare' can be measured using the Patient Activation Measure (PAM). US and UK research shows that appropriately designed interventions can increase patients' levels of activation, with associated health benefits8.
Models of systematic holistic care:
Person-centred Care and Support planning provides a powerful vehicle for delivery of joined-up care, but the criteria on which to base a move from a conceptual disease-based service delivery model to a truly whole person model are only beginning to emerge.
Risk of admission scores are not useful way of identifying people with significant limitation of function or significant psychosocial issues in addition to physical health problems who might most usefully benefit from a holistic approach.
In Tower Hamlets, the Co-ordinated Care Network Improved Service (November 2013 and onwards) attempts to identify people likely to benefit from moving their care from their current disease-based packages to a more generalist and holistic approach based on clinical criteria, which includes a Comprehensive Geriatric Assessment screening and consideration of the clinical appropriateness of evidence based-disease pathways and prescribing for that individual.
The British Geriatrics Society (BGS) has produced guides to the identification and treatment of people with frailty, suggesting an alternative way of identifying a cohort9.
In Tower Hamlets, the qualitative evaluation showed that the most powerful segmentation was largely on the basis of the service and support needs of patients, although whether they lived alone or with family or carers, ethnicity, age and gender may be important issues. These are 'fluid' and not 'static', patients moving from one segment to another as their health improves or deteriorates or as their support needs change. Levels of health literacy, though not focused upon in the evaluation, may also be a determining factor.
- SEGMENT 1 - Complex co-morbidities but functionally reasonably independent;
- SEGMENT 2 - Frail or becoming so, trying to hold on to their independence and have some level of regular intervention(s) and
- SEGMENT 3 - Frail, largely dependent, already fully assessed and in receipt of packages of care or care home resident.
All segments appeared to need and want a level of co-ordination of care. The question that may need to be answered is not 'What is the matter with you' or 'What matters to you?' but instead 'What help do you need today?', which may become more pertinent as patients move through the segments.
For those patients who were able to recollect the process of being included in the new package of care, themes about expectations and confusion around its package was greatly complicated by it being muddled with the integrated care specifications, both local and national, focussed around risk of hospital admission. However, the majority of the interviews with patients tended to reflect the same difficulties that were explored during interviews with primary and community health providers, of shifting cultures and the mind-sets of healthcare staff and introduction of more generalised and holistic care encompassing a patient's wellbeing as well as their mental and physical health.
Dr Isabel Hodkinson is involved in:
- the Year of Care for Diabetes pilot (2007 - 2010)
- the development and mainstream delivery at GP network level of packages of care based around
- care planning for type 2 diabetes (2009 - 2010);
- secondary cardiovascular disease (2010) and
- complex comorbidities (Co-ordinated Care NIS, a GP network delivered enhanced service) from 2013.
The case vignettes are from Isabel's work on the Co-ordinated Care NIS.
The feedback from patients come from two pieces of qualitative research:
- THINK Long Term Conditions Research, Carol Burns for Tower Hamlets Improvement Network (2011)
- Co-ordinated Care NIS evaluation, Kate Melvin for Tower Hamlets Healthwatch (2014)
 The Kings Fund, Centre for Mental Health, Long-term Conditions and Mental Health.
 The Pain Toolkit, Tool One, Accept that you have pain and move on.
 Mental Health Foundation, Recovery.
 Royal College of General Practitioners, Care Planning, Improving the Lives of People with Long Term Conditions.
 Journals Consult, Journal of Clinical Epidemiology, Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. Nathan D. Shipee, Nilay D. Shah, Carl R. May, Frances S. Mair, Victor M. Montori.
 Holmside Medical Group, The Holmside Story Person Centred Primary Care.
 NHS Networks, STOPP/START: Supporting Medication Review
 The King's Fund, Supporting People to Manage their Health, Judith Hibbard, Helen Gilburt.
 British Geriatrics Society, Fit for Frailty Part 2, Gill Turner.