I was an NHS leader for 30 years. Only now do I fully understand dementia care

In 2022, I was invited to become the independent chair of HC-One, a large provider of residential dementia and nursing care. With a long career in the NHS, I understood the importance of social care but had no real connection to what that meant for those receiving, delivering or commissioning care. Thanks to the past two years, I now know a lot more about dementia and nursing care, and have seen the challenges and opportunities through a different lens.

Most of the care HC-One provides is local authority or NHS-funded, and I was struck by the dependency and complex frailty of many of our residents, particularly those living with dementia and receiving complex nursing care.

I, of course, understand the pressing demands the NHS must tackle with no workforce or financial flexibility. It is frustrating that we in the care sector could provide better and more appropriate care for people with frailty than is possible in an acute setting, yet we fail to create any real integration. Care is often fragmented and organised on a short-term basis.

This stop-start approach cannot build sustainable capacity, costs are often higher, care is delivered later than needed and is less effective. Discussions often get trapped in complex partnership governance where system-wide decision-making authority is opaque. As a result, people continue to wait in hospital beds for care or end up in accident and emergency when their homecare package fails.

It has long been recognised that there is a need for social care reform which delivers a stable basis for joint planning. Large-scale reform will require the redirection and restructuring of existing financial flows and is politically and administratively complex.

The scale of this challenge and its complexity are sometimes used as an excuse for inaction. We can all hope for and champion reform, but meanwhile we should work together to do better with what we have. This requires a dialogue at the senior level between the NHS, local government and the care sector about how we use the capacity we have to deliver better care for those who need it.

What gets in the way?

• Like most providers, we are a private company, and it can be hard for commissioners to engage us effectively in joint planning without compromising fair competition;
• There is little public money to invest in service development and, although care in hospitals is far more expensive than social care, savings are lost as demand fills the beds as soon as they are empty;
• The private sector can invest in new services but only with longer-term certainty and confidence and a sustainable return on capital;
• There is sometimes philosophical antipathy to residential care. Whilst for many, homecare will support them well, the costs and workforce needed to provide this at scale for the most dependent people are prohibitive. Increasing reliance on unpaid care from loved ones is unrealistic;
• In some places, there are poor relationships between organisations and professionals working, which creates suspicion and lack of trust to the detriment of patients and residents.

If the NHS, locally and nationally, could work with care providers and local authorities to tackle these barriers, then together we could provide safer, more effective care for the most vulnerable people, both in the acute phase and, where necessary, in a residential setting thereafter.

So, how can we do better together? Here are some suggestions:

• Invite social care providers to the table so they can plan capacity in a meaningful way. In particular, at the system level integrated care boards can bring partners together. In return, we must be open about our business, our data and insight, and respect the need for a competitive process in awarding contracts;
• Develop longer-term contracts, where additional capacity is needed, to allow us to invest in people and new homes to meet rapidly rising rates of dementia and increased frailty;
• Motivate providers through contracts and support with reablement to help people return home wherever possible, but also recognise the need for a residential solution for the most vulnerable, especially considering the increasing demand for specialist dementia care;
• Work together with care providers to tackle the cultural divisions between the NHS and social care. There is an opportunity for a greater understanding of each other’s pressures enabling all parties to better meet their commitments.

Success would enable:

• A better flow of patients through hospitals with greater productivity as a result and the opportunity to protect elective capacity;
• Improved outcomes for people with frailty and dementia who we know deteriorate in hospital;
• Agreed plans for expansion in out-of-hospital capacity with commitment on our part to invest;
• Reduced reliance on agency staffing in the private sector as it struggles to respond to short-term demand and improved quality and safety as a result; 
• Reduced numbers of elderly frail people waiting for care in A&E because of collapse of in-home support; and 
• Better relationships which would help us to tackle winter-type pressures together.

We recognise that to achieve these aims will require change on our part. We need to develop our leadership capacity to participate in system-wide discussions and make long-term commitments. We need to demonstrate flexibility and innovation in our approach to tackling system pressures rather than simply managing within our walls. In particular, we need to understand the desire to help people to live in a community, ideally at home, and develop our abilities to work across pathways of care, including supporting secondary prevention and reablement.

We have some powerful data about future needs for dementia care and we need to bring that to the attention of policymakers, together with our proposed solutions. Above all, we must become reliable and trusted partners for NHS and local government colleagues in planning the use of our shared scarce resources to better meet the needs of frail people.