What do patients want? Priorities for change in the NHS

Anastasia Knox is an Associate Partner at BritainThinks. She leads on BritainThinks’ health and social care practice, delivering work for clients in the UK and internationally.  She tweets @anastasia_knox

“Well, they’re obviously over-stretched and under-staffed, aren’t they?  It’s not personal care any more is it, you’re more like a number, they get you in and get you out.”

These are the words of a woman I spoke to in Leeds when delivering work for Age UK a couple of months ago.  Her view that the NHS is under pressure, that there is too little money, too few staff and that these issues are having a direct impact on patient care is one that I have heard consistently up and down the country for around two and a half years now.

I was in Leeds for the most recent in a series of projects BritainThinks has delivered for Age UK exploring issues affecting older people.  For this particular piece of work we talked to people with caring responsibilities for elderly parents.  We explored what changes they felt would have the biggest impact on their parents’ care, including testing some elements of the personalisation agenda, as set out in January’s Long Term Plan.

What we heard from these participants is that their parents are facing rising waiting times, and finding it increasing difficult to secure time in front of a healthcare professional.  In some instances, people talked about having to be ‘pushy’ to secure care for their parents.  This on its own is stressful enough, but is made still more challenging by difficulties navigating the system: “I don’t know where to reach out for help, and so when I ring up the GP for an appointment because I need to get my mum some medication or she won’t survive, and I can’t get one, I don’t know what else to do.”

As the quote above suggests, GPs occupy a key role for this group as both the co-ordinator and the gate-keeper of their parents’ care. Unsurprisingly, therefore, when asked what they would like to see change, the key priority was more GPs, with some feeling that it is pointless to tackle anything else before this fundamental challenge has been addressed.

Beyond more GPs, people told us that they would also like to see more district nurses doing in-home visits, as a way of helping older people stay out of hospital. There was also support for more community groups in order to tackle social isolation.

Interestingly, despite the focus on the choice agenda at a policy level, those initiatives we tested which aimed to increase patient choice tended not to be priorities for those we spoke to.  Indeed, most tended to feel that patients have some choice already, most notably over what treatments they have.  Those we spoke to struggled to see what benefits would come from expanding this choice and in some cases where worried that it would disadvantage their parents, at the expense of those who are better informed and more used to taking a proactive approach to get care.

Regardless of the changes we were discussing, throughout this work we were consistently challenged to explain where the money was going to come from.  Without clear funding plans, we were told, “nothing is going to happen”.  In this context, Boris Johnson’s pledge of £1.8 billion will be welcome (leaving aside for a moment the question of whether or not it is new money).  Hospitals, however, would not be the immediate priority for those we spoke to.