What matters to you?

It’s some time since I sat (and passed) the clinical section of the diploma exam of the membership of the Royal Colleges of Physicians (UK) [“MRCP(UK)”].

It’s meant to be a two hour intense exam where a junior doctor is taken to about ten patients he has never seen before, and, with the help of a stethoscope, ophthalmoscope, hat pins and a tendon hammer is supposed to demonstrate clinical skills in diagnosing and managing patients worthy of entry into higher specialist training.

I sat this exam in Broadgreen Hospital, Liverpool, and even to this day I remember the signs well: e.g. mitral stenosis, pulmonary hypertension, on warfarin; right dull lung base.

The current marking sheets are here. You’re expected to introduce yourself to the patient, and it’s generally thought to be indecent if the Doctor can’t get his or her name correct.

Earlier this week, in a panel discussion, the panel discussed how it was clearly amazing that there had been a #hellomynameis campaign, but also in equal measure how staggering the NHS needed a campaign for clinical staff to introduce themselves.

Likewise, I find it counter-intuitive that clinical staff cannot empathise or understand at a basic cognitive level the need for carers to stay with their loved ones during a hospital admission, and somewhat saddened this has needed to become operationalised using CQUIN (which can have in itself unintended conseqences).

But back to the marking scheme for MRCP(UK) for all the Royal Colleges. It was always the case the candidate was supposed to work out (and act on) the beliefs, concerns and expectations of the patient. This is now formalised on the mark scheme for station 4 (communication skills and ethics) as follows.

Managing concerns

One of @NHSEngland‘s workstreams comprises “always events”.

According to NHS England’s website, Always Events, initially conceived in the United States by the Picker Institute and now led by the Institute for Healthcare Improvement (IHI), provided “a strategy to help health care providers identify, develop, and achieve reliability in person- and family-centred care delivery processes”.

NHS England, IHI and Picker Institute Europe initially worked in 2015 with a small number of provider organisations to test out the Always Events methodology.

“Always Events” are supposed to be things which always happen for the benefit of patient care. I believe fundamental to good quality dementia care in acute hospitals is making the carer (often unpaid, exhausted member of the family who loves caring) part of the care planning with others (for example physician, psychiatrist, therapists, social worker, nurses).

Despite what can be at best called ‘incremental bursts’ from Prof Sube Banerjee’s plenary talk at #UKDC2016, carers are supposed to have been important in health and social care strategy for England for the last two decades – but we know the reality doesn’t match up to the rhetoric.

This for example is very commendable – but one is left wondering whether this will see the light of day in clinical settings for dementia care?

service model

A very good example of an ‘always event’ relevant to dementia care is from Ashford and St Peters NHS Foundation Trust with the area of focus the “dementia-friendly medical ward” – the question asked of both the patient with dementia and carer is “what matters to you and your carer?”

We know that the admission of a person with dementia, as a care transition from say home, hospice or care home or hospital, can be amazingly stressful for all concerned – and care transitions can be where bad care happens (see for example the Care Quality Commission’s “Cracks in the pathway”).

This recent abstract from @DementiaJournal summarised the situation well for me:

Hospital admission of a person with dementia can have a significant impact on the family carer, who temporarily relinquishes caring to health professionals. A descriptive qualitative design using in-depth interviews with a conversational approach was used to elicit data. Adjusting to the change in the carer‘s role can be challenging and result in feelings of helplessness, loneliness, loss of control and being undervalued. Family support can assist with the transition but family conflict increases anxiety. Good communication between clinicians and the carer is vital. The carer should be included in decision-making as the ‘expert’ in the care of the person with dementia. This article discusses findings of a larger study specifically related to the emotional support required for the carers of people with dementia, who are admitted to hospital. The carer and the patient must be considered as a dyad in relation to discharge planning.”

People vary hugely in what might matter to them the most.

For example, I know several people living with dementia who feel that research hugely matters to them, as they feel this gives them ‘hope’, for them what can be perceived as a ‘scarce resource’ after a life-changing diagnosis.

Likewise, I know carers who feel a real need for better peer support and wish their rights e.g. to have themselves a break sometime respected.

The crux to this for me is the Mountford and Davie (2010) article in JAMA in 2010, on an outcomes-based health care system. To identify meaningful outcomes (and therefore measure value in them), you do need to know what matters to patients and carers. These are often very different to what matters to clinicians, and might reflect a difference in approach, let’s say, between fixing illness in a crisis manner to living better and flourishing.

So – ask your clinical colleagues to get into the habit of asking “What matters to you?” rather than “What’s the matter with you?” – and you may find a whole new world opening up for you.

Then, as NHS Greater Glasgow and Clyde recommend in their groundbreaking work, then : “Listen to what matters. Do what matters.”



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