“If it ain’t broke, don’t fix it” say many working in the NHS.
Alas, the bankrupting economic impact of dementia on healthcare systems obliges us to focus on novel interventions.
One of those is prevention.
For the past four years it is becoming apparent that “more of the same” is unsustainable.
Health and social care commissioners procure mainly reactive fragmented services of variable quality that don’t work very well for people with dementia and their caregivers.
Current NHS services capture a third of people living with dementia.
Consequently, there are too many people with dementia who don’t know they have it. They are deprived of making advance plans. Many are admitted to hospitals inappropriately during preventable crises. And many are inappropriately prescribed harmful drugs in place of substandard care. Choice can sometimes be a luxury for a person with dementia navigating the NHS.
Stigma and ignorance can adversely affect the patient’s experience, despite the good efforts of a few. Workforce training is sadly grossly deficient. Compassion and dignity are products of good dementia training. You cannot have one without the other.
Understandably, our public can have little confidence in our dementia services as reports, inquiries and investigations incessantly demonstrate.
Given that the NHS has to find £20 billion by 2014, the unique conundrum is this:
How to improve a service for a disorder we’ll be seeing more of, with less funding? How do we do much more for much less?
By intervening earlier and smarter we may delay the onset of dementia, empower our service users and improve crisis management.
This can be perceived as counterintuitive, even risky, when there is ‘enough to contend with’ in an ailing service. This, however, is the short-term view.
The objective is stemming the flow ‘upstream’, to offset unmet demand. The potential stigmatising effect of uncovering “pre-dementia” can be offset by the empowerment of an early diagnosis and disease control. It is our focus on later stages, which may be perpetuating the stigma and negative image of dementia.
The composite interventions of health and social care at this early stage can release tremendous opportunities to improve the disease trajectory further downstream.
Transformational change requires a departure from the initial system, is radical rather than accidental change, does not happen overnight, and often involves risk.
The West Midlands Dementia Strategy developed a replicable blueprint (an integrated pathway template) for bold redesign. Integration here means that all disciplines involved work together around the person with dementia and their caregivers.
Our prevention strategy is underpinned by 5 principles:
- prevention in all its forms (primary, secondary & tertiary)
- tackling ageism & stigma
- awareness raising starts in schools
- emphasis on wellbeing and preserving Mental Capital
- developing compassionate communities
This approach could realize not inconsiderable savings for England & Wales, but not immediately.
£230 million in 10 years?
£3.8 billion by 2033 (a fifth current spend on Dementia in England).
But there are challenges more damaging than all budget deficits put together.
Public misconceptions.
Therapeutic nihilism.
Culture of risk aversion & short-termism.
Working and planning in silos.
Reactive clinical practice.
And what I call PUPPS (Professionals Unknowingly Perpetuating Paternalism & Stigma).
To incentivize change we set up a regional peer review quality assurance programme. We have just completed reviewing all dementia services in the West Midlands. The learning for services, individuals and reviewers has been invaluable.
In addition we’ve proposed modifications to the way purse-string holders can reward earlier intervention programmes in this region (e.g. in commissioning speak PbR Clusters, QOF, DES or LES schemes).
The NHS is working hard at getting ‘cleaner’, more timely data, particularly quality metrics, an essential driver for change.
Meanwhile, all of us helping people living with dementia have parts to play. The list isn’t exhaustive:
- The public perception of dementia is that of a disastrous disease, so risking isolation and social exclusion. We have to contribute to ‘reframing’ dementia, getting the balance right between empowerment and alienation.
- Change is a constant in the NHS. Embrace it, influence it, shape it. Transformational change will take years. Be patient.
- Be a leader and influencer at all levels you are involved with and stay engaged and up-to-date in your knowledge.
- Integration is key to reforming services. Reject the silo culture.
- Change your mindset to think: ‘how can I prevent?’
- Peer support, personalization and self-care are growth areas. Get involved in training, campaigning and researching the best models including digital and assistive technologies.
A commitment to transforming dementia services is ultimately highly relevant to you and me, possibly sooner than you think.
Dr. Karim Saad (@KarimS3D) FRCPsych is Clinical Advisor to UK Department of Health and Regional Clinical Lead for Dementia, NHS West Midlands. He is also Consultant Psychiatrist, Coventry & Warwickshire Partnership Trust, England.
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