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Why an ECHO focusing on human rights in relation to dementia and frailty?

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Yesterday I participated in the first Clinical Network ECHO.

I’ll explain;

I work as an adviser for the Yorkshire and Humber Clinical Network for Older Peoples’ Mental Health – a bit of a mouthful; this includes dementia and recently we have started to be involved in work relating to frailty.

Project ECHO is a educational platform/medium first developed in Mexico which uses ‘Zoom’ online conferencing to deliver education to people who are at remote locations.

If that doesn’t altogether make sense, you can read about ECHO here.

As I have said, we ran our first session yesterday with participants from across Yorkshire; people interested in supporting people living with dementia, frailty and also considering the interface of all of this with human rights and health and social care.

The blog below is the article I wrote to explain ‘Why an ECHO’ – in the end I didn’t read it out and I explained rationale that is not included, yet, I felt it might have some value for me to share – and, as always, I am keen to hear what people think.

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I have been working at a doctor for over 20 years and during that time there have been major changes in the way we treat older people, indeed, there have been changes in the older people themselves and the way hospital care is organised or configured.

Older people have increased in the proportion of the patient population and acute admissions and their frailty has increased;

The case I have will present shortly, is of a woman of 101; in the past fortnight I have seen two other patients over 100 years – one was 107.

The way hospitals operate has changed – dramatically reduced length of stay (LoS), the ongoing battle for beds and the pressure in the system have had an impact on patient experience – with reduced LoS being a positive, but higher rates of readmission being the downside; staff experience has also changed, in many circumstances, at least from NHS Staff Surveys, the this has deteriorated. See Kings Fund.

Amidst this aspiration to ensure minimal waiting times for cancer treatments, outpatient clinics and elective surgery, older people and I have increasingly found those living with dementia and frailty become both the centre of care and the focus of potential harms and abuses.

The system we operate in hospitals, despite many attempts at creating dementia friendly environments – sometimes the occasional ward for older people is the exception – doesn’t work; most general medical and specialty wards are run the way they have been for decades – impersonal, clean, hygienic, sterile, designed for maximum efficiency of staff and outcomes, not necessarily for the comfort or dignity of patients – we erect a thin curtain between beds and pretend it is sound-proof, for example.

The pressure has created a system of short-cuts and acronyms – people become labelled as DToCs, D2A’s, Step-downs, readmissions and, still, bed-blockers.

Despite attempts to correct the imbalance our patients slip from being individuals with identifiable names, identities, personalities, likes and dislikes to being bed numbers, diseases or disorders;

‘The woman in bed 23 with the hernia’

‘That man with at end bed with brain mets’

‘Have you done the TTO’s yet for bay 3, bed 2?’

‘Is he for resus?’

Identify gets lost in this and with it our human rights, dignity and, sometimes our sense of perspective is stretched.

People focus on tasks rather than outcomes; the blood test must be taken despite the multiple stabs at three in the morning, the cannula must be sited despite the absence of veins.

This is not intended as a critique of modern-day medicine; we have achieved fantastic feats; in many respects the overall efficiency of our hospitals and care systems has never been higher, yet, something seems off.

I see this often in the community when I discover that Sadie, John or Frank are no longer in the rehab unit – they have gone back to hospital, ‘Morag fell last night and was taken to hospital.’

If I fall in the night, even if I hurt myself, I will have a part to play in the decision as to whether I should go to hospital. I’ll have a say. And, for me, it is this element of ‘having a say’ that is fundamental.

Many of our older people whether lacking mental capacity to determine the best treatment options or even those who are cognitively able have decisions taken for them; either the system or the protocol or the guideline talks.

‘Mrs Fraser, we need to take you to hospital, it could have been a stroke’ – this translates to our nearest thrombolysis centre for urgent scan and potential treatment; the minutiae of Mrs Fraser, her wants, hopes or fears often get left behind in a blur of flashing blue lights.

Time is often of the essence and sometimes I believe human rights, what a person wants or what might be considered in their best interest is forgotten, then, by the time that person has arrived in hospital, is triaged, blood tests and x-rays taken, they are on a conveyor belt that is difficult to stop.

Often, for certain decisions, such as determining an individual’s place of residence, a best-interest meeting is convened; family, friends and next of kin sit with nurses, therapists, social worker and doctor to determine what is right, what is best; mostly the older person is not included in these decisions or determinations; sometimes they are.

For those lacking capacity, to make these decisions this is often the right and best thing to do; how often does the extent to which an person’s capacity is impaired influence their involvement? It is often all or nothing; lacking or in possession of capacity, no shades of grey, when we know life isn’t like this.

We can’t arrange these meetings for the day-to-day decisions taking place in wards and clinics and often the individual doctor or nurse makes a decision as what is right, what is in the patient’s best interest – for a certain medicine, dissolved or not in jam, blood test or other treatment.

It is both these areas that the practicality of getting the job done can conflict with what is right, what the person wants or would want.

None of this is easy.

When a patient with dementia informs you that they don’t want tablet ‘a’ even though ‘a’ is a pain killer and they are in pain, when do you stop encouraging? You don’t take first refusal and move-on, ‘OK Doris, let me know when you want to take the tablet.’ Equally, forcing or coercing can be wrong; sometimes it is all about approach or attitude, a conversation with Doris about how she is feeling, the weather, her clothes or past then an offer of the tablet. The latter is more time consuming and is both more and less efficient; it somehow seems better.

Person-centred care is at the centre of what we all aspire to provide (and, in turn receiving person-centred support from our organisations or employers) this again is a combination of doing what is right and doing what a person wants. (See King’s Fund reference above).

It is my belief that human rights are sometimes over-ridden in health and social care in order to achieve outcomes; not necessarily bad people doing bad things – that is quite obvious when we see it, but good people forced to behave in ways that they in hindsight might have done differently, in outcomes that suit the system – early discharge, but may disadvantage the patient, readmission with hip fracture.

Essentially, I hope for this ECHO to examine what is good and bad – that should be easy, but more essentially I would like us to reflect on the in-between, the areas of uncertainty where the outcomes might be the same – for example, the patient dies, but the process or experience is different; death with dignity at home, in bed, with family around versus the back of an ambulance in a hospital car park after a futile attempt at resuscitation.

The more I learn of this work, the more I realise we all want the same thing; we are all pushing in the same direction, yet sometimes we don’t always focus, and the distractions of urgency, urgent care, treatment and assessment complicate the scene;

I hope for the ECHO to provide us with some time to think.

Some time and space.

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