I’ve just come away from Connected Care Camp, where the Public Service Launchpad, (a collaboration between Hub Launchpad and FutureGov) partnered up with Shirley Ayres to look at the challenges and opportunities in connecting care.
I was there wearing the hat of “someone with personal experience”. Though as was acknowledge by Carrie Bishop when she introduced our session, most people attending the event would have a story to tell. In my case, it is my experience of having a father, who among many other facets of his identity, is someone that is blind, wheelchair bound (from 2 strokes) and has Parkinson’s. My Step-mum is his full-time carer and has been for many years now as this has not all happened suddenly, but over a long, long period of time.
Their experience, and mine as a family member, was what I spoke of this morning and I wanted to share here some of the key points I made:
The lens through which their needs are seen is polarised and made distinct. There are my Dad’s ‘needs’ and my Step-mums’ ‘needs’, talked about as if they are in isolation from one another. I never hear about what their needs are as a couple, as a unit. In some cases, some of the different types of care that has been provided for them has almost set them up to notice/focus even more on their own pain/frustration and grief rather than empathising across their situation. The way services are delivered to them doesn’t in any way support them to understand one another’s points of view and loss, but requires them to isolate their own needs within what is ultimately a difficult and painful situation for them both, albeit for different reasons. In relationship coaching, people talk about the third entity in a relationship and I think the care people need should be viewed beyond the individual, so that we see the units and networks that surround them.
” Human beings are complex, and a single person is a system unto herself, with many relationships that impact her life”.
What you will tell to whom
The pain and shame and loss that is so raw and near to the surface in these situations, is not always easy to share. There is no way that my Step-mum would naturally want to talk about what she is *really* feeling with all the professionals that might ask her. It’s really only the people who know and understood their relationship and have seen it change over time, who can really acknowledge and empathise with the transitions and adjustments that are having to be made on a frequent basis. That renegotiation of relationship is a constant need in their circumstances and maybe that is the kind of space that only close friends and family can create for them in which to discuss it and navigate through it. However, the lack of acknowledgement from the ‘services’ around them that the relationship between them and the changes in this, is at the heart of so much of what is difficult, is a problematic omission.
The Tick Boxes
When we first given the go-ahed to find care support to come in to the home (and that was a long and difficult process in itself), my Dad was very clear that what he wanted most of all, was not someone to come and look after his ‘personal care’ but someone who would help him keep connected to life. He wanted someone who would take him out in the car, push his wheelchair through the fresh air, take him to places where birds were singing. We looked at the advert template sent over to us for the care coalition website and realised straight away that if we were to attract the kind of person we were looking for then we needed to design our own and bin the template. We didn’t want to use language like “duties” and we even mentioned pubs and gin & tonics. The advert reflected the personality of my Dad as he is rather than as he is defined by his needs. Despite finding a brilliant person through this advert, who twice a week spends time with my Dad, taking him out, typing his stories out for him, finding music libraries for him to listen to, we are still battling with the care services coalition to keep this cost covered. It’s considered a luxury, an unnecessary part of his care. Part of me wishes we could balance out public resource better between care needs/services and the stuff of relationships and humanity. The other part of me wonders what could have been done differently somewhere in the last 12 years to ensure that my Step Mum had time preserved for her to be able to (and want to) spend time with my Dad, so they could do these things together. Instead, she is completely overwhelmed and anxious all of the time, to be able to engage with doing anything with my Dad other than his day to day care now. I suspect that a lot of this comes down to the fact that care has been designed to focus on tasks rather than relationships.
And the simple suggestions I made:
•When advertising for care, make sure that how and what you are asking for reflects the personality of the people involved.
•Look at how you can create spaces or ways for people to share what they are really feeling about their situation.
•Are there ways that wearable or more ambient technology can be used to collect data about what people need and would like, rather than endless and repetitive data entry in to forms.
•Connected care and the networks and linking up of services is hugely important but at the heart of that might be one relationship (between two partners) that can often influence the ability to engage with and make use of anything that exists beyond that.
On a last note, I was reflecting back to Joost (part of the founding Hub Launchpad team) about how some of the conversations I was involved in today felt very similar to many I have been involved in having worked in design and public services since 2006, however, what really excites me about the Public Service Launchpad, is whether the content of the conversations is new or not, the ground swell around this, and people’s recognition of the need for change, and the desire to be part of making it happen, feels palpable. I am so glad Hub Launchpad is providing a space for people to join in with this.