Supporting self management to improve people’s experiences of waiting for and receiving care 

In a recent article, we argued that a dominant theme in patient’s contemporary experiences of care is waiting – and that interventions should focus on enabling people to self manage their conditions whilst they wait. This blog is the second in a four-part series discussing how the health service could provide a new ‘offer’ of support for self management. 

In last week’s blog, we discussed the value of self-management and how a new ‘offer’ supporting this could improve people’s experience, especially whilst waiting for care. A key part of that offer should be to revive, fund, and expand the reach of education courses for self management.  

These courses bring people together to learn not just about their medical conditions and options, but also, crucially, about how best to live their lives with those conditions. This can include talking about symptom control, exercise, managing their thoughts and feelings, and ‘small step’ approaches to building up their resilience: in short, coping strategies focused on their quality of life. 

The effectiveness of this kind of education was first demonstrated using a standardised model developed by Stanford University. In 2006, this was imported into the NHS in England using central government funding for a three-year commissioning programme.  

Over the next decade the model evolved with more attention to ‘tailoring’ the courses to particular disease groups or communities, and trialling new formats. By the time NHS England produced its Long Term Plan in 2019 the evidence base was extensive and powerful. 

A review of Cochrane Systematic Reviews, for example, found that: 

“Educational programmes have definite benefits for patients suffering from asthma, chronic obstructive pulmonary disorder [COPD] and stroke, and are promising in areas such as diabetes, epilepsy, cancer care, and mental health.” 

Self Management UK, which pioneered many of the tailored courses in collaboration with patients, summarised the benefits as follows:

“better outcomes for people who access group self-management support, including reduced anxiety, increased activation in their health and care, and reduced demand on GP and hospital services – particularly unplanned A&E admissions.” 

These outcomes are all high priorities for the NHS as it struggles with demand in the face of long waiting lists, understaffing, and staff burnout. The issue of increasing demand in particular stands out as a frequently cited challenge in Lord Darzi’s recently published investigation into the quality of the NHS: interventions that address this should, therefore, be highly attractive.  

Despite NHS England committing to put self management support at the heart of its Long Term Plan, there is no current national strategy to provide education for self management. Once centralised funding ended in 2009, fewer and fewer commissioners invested in provision and in 2023 Self Management UK was forced to close due to a lack of funds. 

There is now a perverse situation where healthcare staff are being educated in self management support – the Personalised Care Institute set up by NHS England has trained over 54,000 people – but, by and large, patients are not. This is an important gap. 

It is notable that research reviews of programmes focused only on equipping staff in self management support show few effects on patient outcomes. For example, a randomised controlled trial across 44 general practices in north west England studied what happened when staff were trained to use a range of resources to support people’s self management:  

“[The programme] did not add noticeable value to existing care for long term conditions. The active components required for effective self management support need to be better understood.” 

The point here is that the key ‘active component’ that makes education for self management successful is the presence of patients themselves, working together in a ‘lay-led’ environment. Here, they are able to provide each other with encouragement and support; mutually build confidence; share their lived experiences; and offer one another tips for successful self management. 

In its ‘Universal Personalised Care’ document, part of the Long Term Plan, NHS England foresaw that, across the country, people with long term conditions would be able to access:  

“Quality assured, evidence-based self-management education approaches (face-to-face and virtual), which include disease-specific, generic and online self-management courses.”

To date, this has, regrettably, not happened.

There is now an opportunity to ‘reset’ this ambition. Central government and NHS England should develop a new strategy to expand education for self management as a ‘universal’ offer to those who could benefit. 

Hundreds of thousands of patients waiting for treatment and consultations could be buoyed up and empowered, not just to reduce their risk of deteriorating health and of having to pitch up to emergency care, but to live happier, healthier lives.