A workshop on dementia evolved into the creation of a practical strategy for building a patient and carer-focused dementia service - which could save the health service more than £120m. Healthcare at Home’s group clinical director Ruth Poole explains.

When it comes to managing dementia, today’s system is not fit for purpose. Patients and carers are left to navigate their way through a complex and often baffling health and social care system.

This can lead to the all too familiar outcome of patients ending up in inappropriate care settings, because anything else seemed too complicated, the options available did not match their needs, or they were scared and confused and did not know where else to go.

Healthcare at Home convened a workshop of policy makers, practitioners, carers, NHS and social care professionals earlier this year to debate the issue. The appetite for change was such that it led to the creation of a new and practical strategy document which commissioners and providers are now using to redefine dementia care.

The care model meets the twin goals of improving patient experience and reducing costs – to the tune of at least £127m nationally. Here are the steps we took to identify and map an appropriate out-of-hospital pathway.

Meeting needs

Step one is to identify unmet need. The National Dementia Strategy divides non-hospitalised dementia patients into two categories: those living in care homes and those living at home.

Taking this a step further, however, we can split the latter into two further categories: those whose care is delivered almost exclusively by the state-funded health economy, and those who can more easily access additional support and services provided by the private and voluntary sectors.

The next stage was to map and identify the unmet need (within each of the three care settings care homes; at home with state-funded support; and at home with additional support from private, state and third sector). The gaps tend to fall into categories: workforce (including families and carers), continuity of access and expertise, admission prevention programmes and initiatives; and socialisation and support.

Step two is to build a care model that bridges those gaps. Before you start to design an out of hospital pathway, ask yourself the following questions:

  • How do you define “home”? Would care homes also benefit from these services?
  • Physical needs are as important as mental health concerns. The physical demands can be more overwhelming than the dementia, so are you addressing both?
  • How can you empower and assist patients, carers, care home staff and primary care so that the situation can be managed outside hospital?
  • Is your information and data about the individual integrated, so that providers and key workers can offer a personalised service?
  • Do your support, discharge and admission prevention schemes include people with dementia? If not, why not?
  • Does your support include younger early stage patients, so their partners can remain in employment? How can local health and wellbeing boards be leveraged to help with this issue?
  • Does your joint strategic needs assessment adequately identify needs and will the Joint Strategy for Health and Wellbeing support the needs of dementia patients? What mechanisms do you have to integrate health and social services?
  • Do your GPs have adequate information and support to signpost dementia patients to the most appropriate services?

Services should always start and end with the patient, and not be constrained by statutory organisational barriers.

A home-based dementia care model should consider how patients, carers and families can be supported from diagnosis to end of life stage by better integrating the care offered by NHS, social services and the private and voluntary sectors. 

At a strategic level, the pathway should always address the following areas:

  • a single point of access to care and information;
  • coordination and continuity of care from all providers;
  • access to expertise, including out of hours, and access to appropriate and available staff;
  • staff, carer and family training and support, to encourage trust;
  • admission prevention.

Dementia is a degenerative disease and patients/carers may access different parts of the pathway at different stages. Coordination of care through a centralised nurse-led information hub or “care bureau” is a key way of addressing many current unmet needs and helping patients and their carers to navigate their way through what might otherwise be a very complicated and multi-layered care pathway.

Make it happen

Having telephone advice and support available 24/7 for patients, carers, family members and professionals through this “care bureau” is essential in ensuring continuity and consistency of care. 

It should serve as a single point of access for all involved in the patient’s care, offering signposting and referral to all health and social care providers, and coordinating services, multi-disciplinary teams and advocacy for patients and carers.  It must also provide accurate clinical outcome, admission prevention and key performance indicators data.

Where commissioners and local authorities do not have enough qualified or specialist staff, partnerships with private and voluntary organisations can, if resourced appropriately, fill these skills gaps.

Step three is to make it happen, and save money in the process.

Healthcare at Home is delivering a comparable service with patients on an end of life care pathway in Birmingham and Bristol. The first 600 patients referred to this service showed that improved care at home can prevent at least 12 per cent of hospital admissions and save 40 per cent of the cost of the admissions that remain. Since this evaluation, the reduction of hospital admissions has continued to improve as the services gather pace and momentum.

In the meantime, the latest data has shown a gross saving of over £1m in Birmingham East and North, and the newly implemented service in Bristol has already achieved gross savings of over £200,000 in its first 10 months. 

This equates to 84 per cent and 78 per cent preferred place of death achieved respectively, with Birmingham patients and carers giving an average satisfaction score of 93 per cent.

We found that the end of life care model in Bristol can be used as a basis on which to build a financial model and business case for other out of hospital services. Taking dementia care as an example, key questions to answer when building the case include:

  • What is the prevalence rate for dementia in our locality? How does this compare nationally and with similar primary care trusts? How big is the risk of undiagnosed patients and how can we target these?
  • What is our emergency admission rate for people with dementia? Are there patients where these admissions could have been prevented with better home-based services?
  • What are the prescribing rates for anti-psychotics? Can we set a target for a reduction in prescriptions?
  • How does our length of stay for dementia patients compare? Can we work with community partners and other sectors to support early discharge?
  • What support does our health economy offer for carers? Can different sectors come together to improve this?
  • Is our model for out-of-hours care fit for purpose? How can it be leveraged to support out-of-hospital care?
  • How can we listen to and capture the experiences of patients and their carers and implement improvements where necessary? Specifically, how can we capture this routinely, accurately and in sufficient depth to identify issues?

Read more: specialist resources on efficiency and cost saving care pathways

John’s Story

“John” had a terminal illness and vascular dementia. His wife found him one night very confused, incontinent and uncomfortable. The normal reaction in these circumstances is to phone an out of hours GP or ring 999.

This often results in an unplanned admission to hospital, which doesn’t help the patient’s agitated state and leaves clinicians unsure how to prevent the condition deteriorating.

John’s wife was able to call the 24-hour care bureau. Medical records, recent visits, medications and other notes were accessed by the bureau team, who were able to dispatch a rapid response nurse to the patient’s home.

In consultation with the GP this nurse was able to administer antibiotics to treat an acute chest infection and help the patient settle. His condition stabilised and hospitalisation was avoided.

NHS Bristol estimated that this single episode of care saved at least £2,000.