It sometimes seems like the NHS either focuses on deja-vu (elective waits, hospital league tables) or future-view (neighbourhood hubs and 10-year plan). But, here and now, one of the greatest challenges for the NHS is the mismatch that patients with long term conditions and their carers face between what they need and what they are offered.
The ongoing nature of chronic conditions dulls the impression of urgency. But over half of GP time and the majority (70%) of hospital bed days are being devoted to people with long term conditions. Wes Streeting, in his speech to NHS Providers noted the challenge for ICBs in designing services around people with long term conditions. In North Central London we have been looking closely at what this might involve.
Off the radar
In this part of London there are around 150,000 people who have more than 10 encounters with acute care per year. Within this group of high users of healthcare around 85% of interactions are across multiple trusts (including outside the ICB patch). So not only do people have numerous appointments, but they are under numerous specialities and often across different sites.
Speaking to patients about their experiences, we hear about a dual challenge – people have commitments, very limited finances and busy lives which are not accommodated by rigid appointment systems. And yet there are very long periods with a total absence of contact and a fear that no one actually has overall sight of what is happening with them. Their carers are coordinating numerous appointments – the cataract appointments, the diabetic retinal screening, the annual health check for their parent with diabetes and dementia, for example. And yet through this they feel ‘off the radar’ and isolated – there is no blueprint of a tailored offer for their exact set of circumstances. As so often, the people whose conditions are least well managed are least able to access the care that is offered.
[Patients with long term conditions] feel ‘off the radar’ and isolated – there is no blueprint of a tailored offer for their exact set of circumstances.
Supporting patients proactively
As an “all-in” provider collaborative that covers all NHS providers across the north central London system, NCL Health Alliance are looking at what it would take to respond.
We are testing an approach with our Complex Long Term Conditions Service. A PCN in each borough is identifying both the most complex patients with long term conditions (drawing together both primary and secondary care outcome data) and those who have the highest outpatient contacts.
We have a small group of consultant physicians, backed by coordinators, working in the space between community, primary care and acute care to coordinate care. Their goal is to look at what is happening overall for the patient, accessing primary care and all acute systems and to identify whether there is scope to add greater value for the patient. This shifts the consultant’s time to supporting GPs in working pro-actively, rather than waiting in an outpatient clinic.
Enabling collaboration
Experienced, acute physicians have been taken aback by the level of complexity they are finding in primary care and the volume of patients who, despite efforts and input, are way off their treatment targets.
To get to this point, where a coordinator and Consultant, working with the GP, can see where a patient is, whatever Trust they are under, has taken data sharing agreements for every Trust in the ICS and honorary contracts for each member of the team with each Trust and each practice. Our information governance is designed to enable data protection within organisations but is out of step with the complexity of coordinating care across sites and specialities.
Experienced physicians have been taken aback by the level of complexity they are finding in primary care.
We need professionals to be able to work across and between the boundaries of organisations alongside patients. And many professionals want to work in this way in order to coordinate care and to work in multi-agency teams. It will be fundamental for neighbourhood working. Yet, every time, this is treated as an exceptional and high-risk request. The London Care Record will help – but clinicians and coordinators still need access to individual patient records.
Learning process
There is much to be learned through this process. A next step will be to test whether AI can help to predict future need. Our evaluation will look at whether placing Consultants at the front end of pro-active care succeeds in saving future appointments and is perceived as supportive.
We are likely to find that the MDT coordination, peer support and health coaching are key elements of the emerging neighbourhood offer. We will find that carer support is critical and often just not sufficient.
We may see that the most clinically complex patients may benefit from being seen face-to-face in larger hubs that draw the sub-specialisms together. Evaluation will tell, but what is very clear is that the here and now response we develop for people with long term conditions will fundamentally affect the success of our future NHS.