Anya de Iongh: How can healthcare services deliver on the vision for personalised care?

With a complete mix of senior politicians, system leaders, voluntary sector representatives and people with lived experience as patients or carers speaking, the National Voices Annual Conference was always going to be an interesting day.

Despite the range of speakers through the day, there were some strong themes that were consistent, for example, the importance of person-centred care and the challenges and opportunities for delivering to people across the country.

The day started with a talk from Caroline Dinenage, Minister for Social Care. She discussed the benefits of personal health budgets, the Government paper due in the summer on care and support for older people, and the genuine integration between health and social care that she sees at the newly renamed Department for Health and Social Care. However, her schedule meant she wasn’t able to stay for any questions, which was disappointing and meant that we didn’t get answers to the things that we really wanted to know. In keeping with the principles of person-centred approaches, just talking about what you think is important and not taking the chance to hear or address the issues that might be important to others felt at odds with her rhetoric.

Personalised care and support plans are the building blocks for personal health budgets and should be widely available for everyone, not just people with the very high level of complexity that currently warrants a personal health budget (PHB). While those with higher health and care needs clearly need this support, it should not be at the expense of other forms of personalized care that support people “further down the triangle of need.” This focus of greater complexity often means that younger people with long term health conditions (LTC) get forgotten as they are often clumped into a homogenous group of older people with more complex needs. Acknowledging that personal health budgets can undeniably be positive (NHS England quoted that the cost of one week of traditional care covered six weeks of PHB care), the process of getting a PHB creates additional burdens on already stretched carers. This challenge was strongly articulated by the rest of the audience, who suggested that forms and their associated complexity for getting further support (such as PHBs) were a method of demand management that further exacerbates health inequalities.

Through all the different types of personalization, the voluntary sector was lauded as being key, as we’ve seen in much policy rhetoric recently. National Voices CEO, Jeremy Taylor (and BMJ Panel Member) wryly tweeted “the voluntary sector isn’t the icing on the cake, its part of the cake and you can’t have your cake and eat it” as conversation turned to the mismatch between increasing expectations and decreasing funding for the sector.

A key challenge for the voluntary sector is that it risks becoming medicalised in order to meet the needs of the health system, while at the same time does not benefit from sufficient funding from the health sector.

As ever, it’s often the questions and shared experiences from the delegates that add richness to the discussion. There are lots of benefits to the voluntary sector working in health, and they are arguably best placed to have many of these person-centred conversations around care and support planning (National Voices report). They often provide social prescribing or self-management support services. In the same way as having a specialist cardiologist for cardiac care, this still requires clinical engagement from primary care. All of these approaches need clinical engagement. Outsourcing to the voluntary sector does not mean responsibility to engage in this agenda is absolved for clinicians.

This created a challenge for NHSE trying to make a universal model without overstepping the locally developed work by engaged charities.

Another document by NHSE is due in the summer as a Plan for Personalised Care. Again this was challenged, in terms of what happens between a vision paper being produced and the change felt by people living with health conditions today.

The discussions at the keynote sessions were kicked off by questions from an Expert Panel of Jack Welch, Fiona McKenzie, Dee Carter, and Shahid Mohammed. They articulated the challenges of implementing this rhetoric well and helped keep the day grounded. It was another example of how to involve patient voices in the conference. I was also aware that many delegates and people delivering workshop sessions had long-term conditions or were carers themselves.

Anya de Iongh, patient editor, The BMJ. Twitter: @BMJPatientEd

Competing interests: Full details here.