One of my favourite gifts is a book. Last year Nic told me about a powerful book that she was reading, and generously sent me a copy. I know to say that ‘the book changed by life’ is a tired cliché, but it had the impact of focusing my work in a way no other book has.
The book was Atul Gawande’s ‘Being Mortal’. By the end of the year I had bought and given away a further seven copies. This blog describes how it led to our partnership with Community Integrated Care to change care homes.

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Last Tuesday I was drinking coffee with Rod, in Jonkoping, talking about the presentation we were due to give the next day. My phone rang and I got the call that I knew was coming soon but still not expecting. The message was that my friend and colleague Max had died.
Max was prepared for the end of his life, more than prepared, he faced it head on. He had cancer for the last two years. We had had many conversations (electronic – our favourite kind) about life and death, about contributions and appreciations, and about what needed to be said and done for a good death. We said what we wanted to say to each other – and I asked for and got my ‘legacy instructions’.

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Two weeks ago I was surprised to get a call from a provider asking for help to recruit a new Person-Centred Planning Co-ordinator. This role is an echo from the past for me. I have friends who used to be ‘PCP Co-ordinators’, but I don’t think this role still exist in local authorities, and there are a handful of people with a similar role in some providers. The Person-Centred Planning Co-ordinator was a new role emerging in 2000 to help implement Valuing People. Essentially, their role was to train and support person-centred planning facilitators, to ensure that person-centred planning happened and it made a difference. Our aspirations were high for person-centred planning to lead to great lives for people and rock services. There was lots of effort and energy, and great co-ordinators, yet history tells us that success was mixed. I was part of that change, and if I had my time over again, there is a lot that I would do differently. This is how I would change the role.

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I was 50 last year. Turning 50 made me pause and consider how I am using my time, and what I want to change – a huge ‘working and not working’ about work and life. Being part of a small team is definitely on the ‘working’ list , and I don’t want it to get bigger, but this creates a tension too. How can a handful of people be part of contributing to big changes? However good our training is, if we carry offering training in the same way, I am not sure how we can influence change at scale. I keep asking myself how our team can support people to do great work and make a difference.

The context of training has changed as well. The financial situation means that training budgets keep shrinking, at the same time that colleagues are expected to implement The Care Act, the SEND reforms in education, and introduce care and support planning too. I know that taking staff away from the workplace for two days to learn new skills is harder to do, particularly when you also have to pay for the venue, pay travel and sometimes back pay as well. Even when staff can attend an excellent course, how can managers be sure that it results in changes to practice?

So eight months ago, as I passed 50, I started to look at these two questions:

How can people gain new skills and knowledge without leaving the workplace?
How can people get ongoing support to implement what they have learned?

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Talking about death is difficult. It’s an annual conversation for me and my mum. Mum already had a one-page profile, developed after a spell in hospital. In essence we were updating this and adding two other sections about what she wanted and did not want around the end of her life. This was easy to take from the ‘Living Well’ and is almost an executive summary.

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Over the last four weeks I have given feedback on over 120 projects as a coach for Seth Godin’s radical course, the AltMBA. I completed the course as a student at the end of last year, and this resulted in a disturbing realisation about feedback. I had given the other people on the course, more feedback than I give my own team members in a year. Here is how I am changing that.

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Four years ago I was presenting at a Laing and Buisson conference on care homes. My presentation was  towards the end of the day, talking about the importance of relationships, choice and control. Every presentation before me, without fail, focused on showing amazing dementia-friendly designed buildings and talking about good, respectful care. I felt like I was in the wrong place, with a different tribe who valued different things. However, after the conference I was asked to help to review one of these new flagship care home, lets call is Marble Manor. Two months later I travelled south to meet the people who lived there, the manager and staff. My first impression was that the building looked incredible, and as I walked in, it felt as sumptuous as a four star hotel. The bedrooms were warm and welcoming, and also had the slightly sterile feel of a hotel bedroom. At lunchtime I was invited to eat at the  dining room, which equaled many of my local restaurants, with a wine menu too.

When I met the people who lived there, they were cutting up coloured paper to make Christmas decorations. One staff member moaned to me that,

“The walls are all newly decorated, so we can’t put these decorations up. I don’t know where we can display them.”

Out of earshot of the staff member, one of the people who lived there muttered to me,

“This felt like being at primary school all over again.”

I asked how people spend their time. There was an activities programme, like the Christmas decorations, that people could choose to take part in. This was extensive with music appreciation evening, and trips out. At Marble Manor, you have a beautiful buildings and gardens, and you can choose which of the activities on offer you want to do. Can we go further than this?

I volunteer at a local care home a couple of times a month.  If Marble Manor looks like a four star hotel, this one, Bruce Lodge, probably looks two star, but they have focused on choice, control and relationships. They wanted to see how far they could go in enabling people to have more choice and some control oIMG_7718ver what they did, where, who with, when, and how they were supported. Here is an overview of how they did this.

What: People in the care home did not have an individual budget, and did not have any resource that they could control. Without any additional resources, they decided to give each person a ‘budget’ of two hours a month to decide what they wanted to do and who would support them to do it. When I shared this at a conference, my colleagues in learning disability services were politely derisive and challenged whether 2 hours was even worth it. When I share this at conferences with colleagues from older peoples service they wonder how Bruce Lodge could have possible done that. At Marble Manor they told me that this was not necessary as people could have staff time whenever they wanted it. This was not the reality when you spoke to people who lived there. They felt fortunate if staff spent time with them, and it was at the staff’s discretion. At Bruce Lodge it was an entitlement, and the person was in control of when and how they used their ‘budget’ of time.

Where: People could use their time to go where they wanted, and we proactively encouraged people to go out. If they could get there and back within two hours they could do it. People at Marble Manor went out when a relative took them out, or when there was a group outing.

When: People could choose then they wanted to use their time. People could also choose to use their time in different amounts, learning knitting for half an hour a week, going out for an hour twice a month, or swimming and tea and cake afterwards once a month.

Who: People could choose who they wanted to support them for those two hours, and if they were not able to do that, the manager matched then to a staff member who shared that interest. This was one of the biggest challenge – moving from roles (“you are the key worker so you do it’) to matching people based on relationships and shared interests. This short film shares how this was achieved.

How: Obviously, having choice and control over how you spend two hours a month is not enough. At Bruce Lodge everyone had a one-page profile describing what matters to the person and how they want to be supported. The ‘how you want to be supported’ became the job description of the staff. Here people were starting to direct their own support, on a day-to-day basis. This was reviewed with the person and their family.

This was how one care home worked towards involving people in decisions about their life, in how they wanted to be supported (and recording this as a one-page profile), in how they wanted to use their time (a ‘budget’ of two hours a week) and who they wanted to support them. I look forward to two hours a month just being the beginning, and getting to two hours a day. This may sound unaffordable in the current climate, without extra funding. The manager at Bruce Lodge achieved this within their current resources, and in Flintshire, we are working with commissioners and home care providers to go from achieving this in one care home, to all the care homes there. If you want to know more about the ‘how’ you can read about it here.

It is no surprise that older people want choice and control over their lives. This is at the heart of personalisation and the vision for care fir for the twenty-first centruy. The conference was four years ago. I hope that at the next conference I go that that is focussed on care homes, that we talk more about  choice, control and relationships in care homes, as well as excellent buildings and good care.

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