Peer review is just one effective step in ensuring that people with dementia are given the full spectrum of care, say Kate Schneider and Alison Moon
Up to 40 per cent of people over 75 admitted to hospital have dementia, and only half have a prior diagnosis. Too often, patients with memory problems and dementia are overlooked – even invisible – and their needs frequently misunderstood.
Ignorance Costs, a survey published by the Alzheimer’s Society in 2009, found that the longer people with dementia are in hospital, the worse the effect on the symptoms of dementia and the person’s physical health. Discharge to a care home becomes more likely, and antipsychotic drugs are more likely to be used. In human terms, and financially, the costs are huge.
As recently as 2011, the National Audit of Dementia Care in General Hospital showed a low level of performance across the country, with a wide range of variation. Only 6 per cent of hospitals had a care pathway in place for people with dementia at the time of audit, and only 44 per cent had a pathway in development.
‘One carer reported having to make a 40-mile round-trip three times a day to feed her husband’
Less than 25 per cent of hospital boards/trust executive boards regularly looked at information about delayed discharges of people with dementia; and only 8 per cent reviewed re-admissions of people with dementia. Only 5 per cent of hospitals had mandatory training in awareness of dementia for all staff; and less than a third of staff said they had sufficient training in dementia care.
We are dealing with much more than the challenge of dementia. Care and Compassion? Report of the Health Service Ombudsman points to an NHS that is “failing to respond to the needs of older people with care and compassion and to provide even the most basic standards of care”.
South West improvement programme
A joint review of dementia services in the South West, carried out by the South West Dementia Partnership in 2009, concluded that dementia care was not seen as a corporate priority or core business in some hospital settings and the quality of care varied significantly, with carers reporting that dementia was neither understood nor catered for in hospitals – describing their experiences as poor.
Particular mention was made of lack of support at mealtimes: one carer reported having to make a 40-mile round-trip three times a day to feed her husband. The review also found that many hospital wards had poor environments, unsuitable for the care and support of people with dementia, and delayed discharges were reported in a number of hospitals.
The South West Dementia Partnership has focused not on dementia care alone, but on fundamental questions about health care today. How do we protect and promote people’s rights? How do we change people’s expectations and behaviours in complex health systems, in a climate in which productivity threatens to undermine quality and safety? How do we ensure we care for the person, and individual needs in a system designed for high volume/throughput?
Changing expectations, changing systems
Following the joint review of dementia services in the South West, board-level clinical leads for dementia were identified by each of the 18 general hospitals in the region. A regional champion for dementia care in hospital has provided a focus and sustained drive for quality of care in hospital, influencing practitioners, senior teams and health and care leaders across sectors.
A regional expert reference group has brought clinical leads and local partners together to design, sign up to and deliver an improvement programme over a sustained period.
This reaches beyond the NHS: members include people living with dementia, voluntary and community sector partners, and health and social care and commissioners and providers.
Eight standards for dementia care in hospital
The standards and underpinning criteria have emerged from, and reflect, lived experience: of people living with dementia and their carers/families, and of staff and volunteers. Colleagues in the voluntary and community sector consulted with people living with dementia and their carers/families to establish what would make a difference and how; and what was most important to them for improving their experience.
Alison Moon, regional champion for dementia care in hospitals says: “The conviction was that if we were to achieve these standards of care for people with dementia, we would be improving care for all hospital patients.”
To make a difference, we needed to find a way to ensure that the standards were implemented locally – building on local positive practice and promoting sustained improvement in each hospital.
We developed and introduced at key points a range of ‘catalysts’, ‘enablers’ and ‘accelerators’ in our model to support local improvement processes.
Our model for large scale complex system change introduces planned, sustained strategic interventions at multiple points, and at different levels and times within and across systems and sub systems. This model uses the design and deployment of initiatives o rinterventions which catalyse, accelerate and enable change.
Here, change is not incidental and emergent; it is tactical and driven (see diagram 1).
A key catalyst for change has been a peer review of dementia care in hospitals, designed by the regional expert reference group and mandated by the strategic health authority. In the autumn of 2011, each hospital signed up to and undertook a self-assessment against the South West standards; produced and implemented an improvement plan; and hosted a visiting team of peers to review progress with implementing the standards and improving dementia care. ‘Support and enable’ was the motto of the reviewers.
Groups of approximately eight people formed peer review teams, representing carers, clinical leads for dementia, dementia champions, people with lived experience, voluntary and community sector partners, social services, GPs and commissioners of acute care and dementia services.
Review days started with the hospital’s top team, including chief executive, in order to establish local leadership, focus, commitment and intent, and ended with feedback to the same group. The hospitals planned their respective visits: presentations, documentation, observation in different settings and engagement with staff, patients and carers allowed the peer review teams to discern strengths, and opportunities for improvement.
Most importantly, they heard people’s stories and took account of the challenges which people, organisations and their partners – living systems – were facing. Acknowledgement and recognition of progress, sharing of positive practice and learning, and a focus on solutions ensured that the review visit and process was an important milestone for hospitals and their boards, and a practical support in continuing to drive improvement in dementia care.
Organisational commitment to change has been an essential component. Leadership has emerged, and been sustained across systems via the regional expert reference group, and within hospitals by board-level clinical leads for dementia.
The needs and rights of people living with dementia and their carers and families are being articulated and becoming much more visible in our hospitals: new roles and new ways of working are ensuring that dementia care is integrated within hospital-to-community pathways of care.
These include the dementia champion (box 2); partnership working between general hospitals and care homes to enable people to die in their place of choice, [box 3]; mealtime companions on an acute ward for older people (box 4); and dedicated teams such as the older person’s assessment and liaison team in the Royal Bournemouth and Christchurch Hospital (box 5).
The peer review of dementia care in hospitals has demonstrated a significant shift in hospitals’ awareness of, and response to, the needs of patients with dementia and their carers/families.
It has highlighted and acknowledged the achievements of many staff and local partners to improve care, and identified much outstanding practice and immense commitment from individuals and teams.
Overwhelmingly, the peer review has harnessed the enthusiasm and commitment of staff to keep striving for improvement; a number of hospitals have subsequently continued to share and exchange expertise and positive practice through networking and follow up visits.
Bringing together people as a community of interest, articulating shared concerns, values and ambitions, giving both ‘permission’ and opportunity, and recognising and acknowledging change and improvement has given a foothold to promoting care and compassion, and working with ‘intelligent kindness’ in our hospitals.
There remains to be demonstrated the pervasiveness and depth of these improvements, and competence across all hospital settings. In 2012-13, to reflect the changing NHS structures and promote local leadership, a hospital-to-hospital peer review model is being adopted.
Teams from one hospital will be reviewing another hospital, with the visiting and host teams reviewing dementia care in hospital jointly in order to promote accountability, transparency, learning and leadership.
The needs of people with dementia, and their carers/families are more visible, and better catered for in many wards and settings: the challenge remains to extend these standards of care across all hospital settings and to demonstrate real capacity to deliver this. It takes a whole hospital approach to care well for patients with dementia, and to sustain that level of care.
Kate Schneider is a programme lead for dementia, mental health and autism at NHS South of England (West). Alison Moon is a regional champion for dementia, NHS South of England (West) and a chief nurse at University Hospitals Bristol NHS Foundation Trust.