Seeing the patient and carer behind the many faces of ill-health #multimorbidity @JLAageing @OfficialNIHR @EngageFMS

Last week I attended a National Institute for Health Research (NIHR) workshop on older people with complex needs.  The more common term used in medical and scientific circles for ‘complex needs’ is ‘multi-morbidity.’  Which means suffering from two or more conditions at the same time. But I prefer the former term.

As statistics from the Office for National Statistics (ONS) and others has shown we are spending many more of the twilight years our lives, managing and battling many conditions at the same time. Each comes with its own issues. Each is complicated by the existence of another. And another.

This is an issue for patients, for carers and the extended family. For health care professionals. For health and social care organisations.  Its increasing impact on society and how we care for others is shining a light on the deficiencies of our traditional approaches to science and indeed the practice of medicine which prefers to look at things in beautiful, controlled isolation, one condition at a time.

From service redesign to testing treatments on the older person (rather than the young and fit) and in real-time conditions: if ever there was a driver for much-needed change in the way we think about testing treatments this is it. Hence the focus of the NIHR and the reason for last week’s workshop – how do we get researchers to focus on the right questions in this pressing area of need?

In the autumn NICE (National Institute for Health and Care Excellence) issued new guideline on multi-morbidity emphasising the need for a more patient-centred approach.  So, I was delighted that we had such a strong contingent of public contributors at the meeting who were vocal in urging the research community to see the patient behind the complexity, to focus on what matters to them.

I particularly liked the comment by one of our number who said we need not just to think of the patient as if we are all the same but that each of us will have different needs and capabilities for managing their own care and the outcomes of research and how it is implemented must reflect this.  That means patients and carers not just setting priorities but identifying the outcomes that matter for them as well.

In my presentation to the workshop I talked about the four main themes that seem to make up the patient and carer perspective in this area. As follows:

Quality of life

–Impact on daily living, work, finance, leisure ; mental health and well-being; pain and fatigue; mobility issues; taking a patient-centric versus condition specific approach

Continuity of care

–Service organisation design and delivery – ‘care across organisational and professional boundaries;’ relationships with health care professionals; specialist versus general; communication; data sharing

Medicines

–Interaction between conditions, medicines and symptoms; understanding and managing medicine regime ‘30 pills a day;’ consequences of long-term medicines use;’ follow-up, monitoring and review

Self-management

–Prioritisation; understanding of enablers and barriers; language, tools, information, new models of care; supporting carers; technology

I shared one quote from a carer talking about the practical impact of helping her father manage multiple conditions:‘Without my help and encouragement [my father] wouldn’t attend multiple appointments, also dental, chiropodist, optician, GP, flu, vaccine clinics, dietician, physio and others important to his quality of life such as hairdressers and even vet appointments for his little companion dog.’

But this is just the iceberg. And, for reference, there’s an excellent healthtalkonline (those two words always seem to go together don’t they?) module on people talking about their experiences of coping with multiple health conditions which is well worth looking at if you are interested in this field. It deals with many of the themes I have identified above.  As well as many published papers on the subject by the likes of Trish Greenhalgh and others.

If you prefer something light-hearted but with a serious point behind it then I love this video of a sketch entitled ‘The Return of Ethel and Agnes’ by two patient advocates and colleagues whose real identities I shall preserve – at the 10 Year Anniversary of Keele University Research Users Group in September.

Complex needs, multi-morbidity, whatever you call it, this is one area where research priorities need to be driven by patients and carers.  Happily, Newcastle University with the support of the NIHR Biomedical Research Centre, NIHR Clinical Research Networks and EngageFMS are running a James Lind Alliance Priority Setting Partnership on Health with Multiple Conditions in Older People.  The web page for this is here. And, if you are on Twitter, you can follow its work on @JLAageing. It’s just getting going.

The fact that the Department of Health’s Chief Scientist, Chris Whitty, attended this meeting just shows how serious NIHR is taking this issue and the desire to make change happen.  That patients and carers were in the room to shape thinking is a good start.

But the proof in the pudding will come when things change for those coping with many conditions in the face of a system that can not see beyond its own organisational barriers or scientific obsessions.

Have a good day.

 

 

 

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