As I share these reflections, I’m starting a new project that I’m excited about. I’ll be working with Think Local Act Personal (TLAP) and the Association of Directors of Adult Social Services (ADASS) to explore what ‘care closer to home’ could and should look like.
This project comes at an important moment, aligning with the ambitions set out in the recently released Ten Year Health Plan for England. This work opens up the kinds of conversations we need to be having to shape a more human, connected, and community-based approach to health and social care – one that’s firmly rooted in people’s lived experiences.
One of the ways that ‘care closer to home’ shows up in my own life is in how I draw on healthcare. I spend a lot of my time attending hospital appointments. Unfortunately, I have complicated medical conditions that, in a very bad year, resulted in close to 100 different appointments. In the worst week I had four appointments, three of which were in different hospitals. I like to be as independent as I can be and to have as much choice and control over my life as possible. That’s why finding a way to make these appointments more manageable is so important to me.
When I heard that the spasticity team was looking into arranging ‘care closer to home’, and the lead nurse asked me about local clinics and hospitals close to me, it was a huge relief.
Every six months I need my baclofen pump refilled – a piece of equipment that releases a drug called baclofen directly into my spinal cord. Since getting the pump my life has started to get back to some kind of normality. Before that, I had such terrible spasms and stiffness in my legs that I could not sleep or safely go out in my wheelchair. The downside of having a pump in my stomach is that as well as having to be replaced roughly every five years, it also needs to be refilled every six months.
Hospital visits often take a really long time and can be very stressful due to not being able to park, having to navigate large multi-storey buildings, and long waiting times. I have to allow at least a couple of hours to arrive at hospital appointments, and I always need someone to come with me.
Fortunately, the spasticity team identified a local clinic that can manage my baclofen pump which is only half a mile from where I live. The upside for me is that I can go independently and it takes just half an hour. Another positive is that the clinic is led by two nurses who know me well and are able to read all my medical notes from the GP. Together, we can make decisions on whether the pump needs to be programmed up or down. Of all my hospital interventions, this is the only one that is ‘closer to home’ but it has made an enormous difference to my life.
Not all care can be closer to home, but I do hope that more services will be available locally in the future. This would enable people to experience more person-centred care, and to have more time to do the things that matter to them. I look forward to exploring this in the coming months with TLAP and ADASS.
