Multimorbidity deserves its makeover

This is cold comfort for the vast and growing proportion of people who live with multimorbidity, defined as two or more long term conditions.1 Innovative large scale strategies to tackle the physical, mental, and financial burden of multimorbidity, and reduce its wide socio economic impact are thin on the ground, so the announcement of NHS England’s new “major conditions” strategy is welcome.2

Opinion on its merits is divided. The cancer community has issued a thundering warning of the danger to patients of “subsuming England’s long term plan for cancer into a generic chronic disease strategy.”3 Mental health specialists have expressed “disappointment” about the cross government mental health and wellbeing plan being abandoned. Alzheimer’s Research UK, by contrast, has welcomed its “holistic” approach, making the point that “dementia rarely travels alone.”4

As a cancer patient I should perhaps be siding with the outraged within the cancer community, but my experience as a multimorbid patient leads me to conclude that cancer patients get a better deal than most.

Since my cancer diagnosis (adrenal cancer 18 years ago) I have been followed up assiduously, had two timely rounds of effective major surgery, and subsequent metastases dealt with promptly (mostly on the NHS). During the covid-19 pandemic I had teleconsultations and scans done in a mobile unit. Queries on my last scan have just been discussed at a face to face meeting and I’ve been invited to undergo genomic testing for Lynch syndrome. If I have this hereditary cancer condition my children will be offered early cancer screening.

An oncologist rings to get consent for testing. She is engaging and informative, and I’m grateful for her interest in the genetic profile of my cancer. But I’m emboldened to say it’s not my cancer that’s bothering me right now. I am daily troubled by angina and finding it hard to get to see a doctor locally for help to get it better controlled, and to get my B12 injections, for pernicious anaemia, regularly. My once thriving local general practice now has only two part time locum doctors and it’s almost impossible to get appointments.

In a similar vein, my concerns about my grown-up children are less about conditions they may develop in the future, but the current problems they face accessing medical care. One has rheumatoid arthritis and from the outset their follow has been patchy and fragmented. Last year they were dropped off the follow up list altogether— “by mistake” I was told. A sibling who also has rheumatoid arthritis, but also pulmonary fibrosis, asthma, and deteriorating vision, has not fared much better.

“I think I am followed up much more rigorously than either of them,” I venture to say to my oncologist “and if there is such a thing as a specialist pecking order, oncology rates a lot higher than rheumatology” (or geriatrics or general practice for that matter). “You sound like my husband,” the doctor says, who (by coincidence) is a consultant rheumatologist.

Cancer is so often seen as the elephant in the room. Yet for the many who live with it as a chronic condition, as I do, it is possible to have an excellent quality of life much of the time and not need any medication. The same is not true of most other long term conditions. Over the past two decades, I have observed in those I love and care for the relentless struggle to cope with fatigue, pain, mental health challenges, and a high burden of drug treatment.5 Part of me remains angry that for years, my persistent and debilitating symptoms due to hyperparathyroidism and pernicious anaemia (both eventually diagnosed and treated effectively) were incorrectly attributed to “anxiety and depression” about my cancer.

People with multiple, complex “unglamorous” disorders, especially those characterised by subjective symptoms which are hard to quantify, surely warrant more attention and support. Whether the new NHS strategy will be able to achieve the cross disciplinary and cross sector collaboration that’s needed to provide this is open to question. As many have already underlined, the Devil will be in the detail. Achieving the aim of integrated whole person care requires a long term health-equity-in-all-policies approach.6

An interim report putting bones on the strategy is expected later this year. Let’s hope those drawing it up are listening hard to the experience and priorities of patients and carers—the people who really understand what is needed to improve their health and wellbeing.

There are encouraging signs that policy makers are listening and not only in the UK.7 A workshop led by The Survivorship and Multimorbidity Epidemiology Research Group in Leeds has invited patients, relatives, and carers to share their experience of living with multiple long term conditions, and help shape the unit’s research agenda.8

I doubt recruitment will be a problem. We multimorbid patients—and what an unappealing moniker that is—may not have the pulling power of single disease communities. But we are no less passionate about the need for kind, careful, integrated, and equitable care.