This article is based on a real-life example of the ways in which the LivesthroughFriends team has worked alongside an independent commissioner to support an individual transitioning from a hospital setting to community-based supports. Some names and places have been changed to protect privacy.
Liz Leach Murphy is a Director of LivesthroughFriends who has worked closely with commisioners and other professionals in her work transforming care and supporting individuals with complex needs. In conversation with one commissioner that she has worked closely with over the last 2 years, Liz reflects on some of the obstacles and challenges they have faced together. Liz and the commissioner John’s collaborative work is focused on supporting people to be discharged from institutional settings when they are either deemed ready for discharge, or where it is recognised that they are no longer receiving therapeutic input from the setting. Their work together proves to be valuable when working with people who have been given complex reputations or have found themselves in complex situations.
Liz was keen to hear John’s perspective on the difference it makes when the LivesthroughFriends framework is brought into practice. For those readers who are not familiar with our framework, here it is:
The Person
Ask HOW you want to live? What’s the best we can envisage?
Address behavioural issues from a very skilled Low Arousal perspective, focused upon supporting participation, inclusion and relationship building
Everyone is different – bespoke works; the service ‘menu’ usually doesn’t
The Economy and Social Capital
Start with the ‘core economy’ - Supplement & Complement
Organise and systematise to serve these aspirations
Remember, it’s not (only) about the money! Attend to that where it adds value
Strengthen/build reciprocal relationships and social capital for and with the person
Contribute to, receive from, and build ‘community’
You
BE TENACIOUS – there’s rarely a compromise that works!
Show another way – It’s about LEADERSHIP
Creativity
Promote Effective and Creative Thinking, Possibilities & Problem-Solving
It’s a Journey – not an episode
John shared his appreciation of what LivesthroughFriends offers in terms of an approach that makes a difference, as well as expertise in autism and learning disability. This also included the invested time that the LivesthroughFriends team can give to the work, and their level of energy and passion in actively applying the principles set out in the framework. This is a stark comparison to the position of Care Coordinators, Social Workers and Mental Health nurses, who are often understaffed and therefore do not have the time to commit to ‘complex patients’ and situations.
John spoke about how recognising how well-meaning colleagues with great intentions were offering to take on the input that LtF provide, however the colleagues do not have the same level of skill, experience and expertise in terms of autism, learning disability and mental health. Alongside this, it is impossible for colleagues to provide a cohesive approach that oversees the whole journey from planning for discharge to being back in the community simply due to the sheer number of people they are expected to work with, and their focus having to be on meeting statutory requirements.
During the first engagement, LtF was first involved in working with two people who had exhausted the system approaches, and a dead end had been reached. LtF’s involvement changed the content of the conversation, getting right alongside the people, spending time with them, getting to know them, hearing what mattered to them and then steering the rest of the conversations, meetings and decision-making around this.
One person in particular who had a multitude of labels and had challenged the system and those within it significantly seemed destined to be moved to a step-down specialised and secure placement, despite the fact they had made it clear that they just wanted to go home.
LtF threw in a different position ‘of course we can get them home,’ and this became the focus of all conversations moving forward: within 9 months this person was home, with good support in place and a much better quality of life.
John talked about the strength that has been brought from drawing on the networks the team working at LtF have developed over their years of practice, connecting with providers who bring an approach that would work well for the person, working one person at a time. This means completely circumnavigating the usual ‘approved providers’ tendering processes. The networks established at LtF also include specialised organisations, such as Studio 3, who bring expertise in Low Arousal Approaches, sensory assessments, transition plans and 360° plans.
At present, current tendering processes lead to the work being granted to the lowest bidder, with some instances of the tender specification and framework being adapted to be able to select a predetermined chosen provider. It is not uncommon in these instances for the chosen provider to later approach the commissioning team to request further funding as ‘the person is more challenging to support than originally anticipated’ – leading to a provider with an ill-informed approach costing much more money.
This is why LtF ensure that the support that is designed around the person is based on what the person wants and what would work best for them, leading to better lives and less costs in the long term. This involves bringing provider organisations into the arrangement based on solid recommendations, track record, and established relationships, not forgetting the values and principles the provider organisation functions from. This starts with how they recruit the team around the person, involving the person from the start, and how they embed a culture that values and protects the team.
John stated that the difference between approaching this work with the input from LtF, compared to approaching the work without this input, as ‘night and day.’ This, not only in the sense of the difference it makes in how the person is supported to reach the life they want to lead in the community, but also in the experience of being involved in the work, bringing positivity and maintaining the focus on the person. It can be easy to otherwise get sidetracked by some of the systems and processes that simply get in the way.
As a byproduct of following the LtF framework, the commissioners recognised that from a costing perspective, this approach and way of working made a lot of sense too. In some instances, the budget for ongoing support at home can end up being a quarter of the original health and social care spend.
In addition, after reflecting on some of the MDT meetings that took place at the time, we collectively realised how the language used to refer to the person did not come from the value base we hope to see in this work. Consider how bad the person’s family would feel if they heard their family member and loved one talked about in that way? Through the work we did together, alongside the involvement of the ongoing support provider, we were able to influence this and change the culture, focus, and language within the meetings.
The key to this is compassion; treating people respectfully, with the perspective that they can have a positive life ahead of them. This, alongside focusing on what is possible based on what the person wishes to achieve and how they want to live their life, rather than treating them as a recipient of set services and approaches.
When talking about an individual Liz and John had worked with together, who has been within institutional settings for decades of his life, John laughed and said, ‘I did not expect after only being back in the community for less than two years that they would be being invited by members of the local community to join a social group.’ This demonstrates that relationships matter, and being in the community - present and valued - is what makes a difference, whilst also being supported by a sensitive and committed team of people.
LtF brings this perspective to all areas in order to influence practice, starting with what matters; relationships, love, and a place to call home. This outlook is embedded in the LtF training and mentoring, which is provided to the teams supporting people who are re-establishing their life in community.
John then went onto share the first time he visited an individual once they had moved out of hospital and into their own home - not a step down or specialised placement, a home on a street with a park, neighbours and great views. He reflected on how he had subconsciously expected the person to be sat around as he had been in hospital whilst their support did everything during the visit, including making the drinks. However, this was not the case. John was greeted by the person at the door, invited in and asked if they would like a drink. The person then proceeded to go to the kitchen and make drinks for everyone. Here he witnessed the power of standing back and letting people get on with their lives. This does not mean to say the person is ‘fighting fit’; everyone recognises that this person experiences daily mental challenges, but with thoughtful, positive and sensitive support he is able to get on with his life with a good future to look forward to.
Within the conversation, John also recognised how the independence that associates and directors of LtF have is fundamental in building relationships with the person and their family. Where there has been significant failings in the past, this relationship is doubly important. To be able to bring in a different perspective and ask the challenging questions within ward rounds and MDT meetings is essential. It starts with encouraging everyone involved to function from the perspective of the person first.
On the other hand, when professionals work within a multiagency setting, there could be a temptation not to challenge so as not tarnish or derail working relationships, especially in highly volatile and complex situations. John summarised the conversation by stating, ‘We didn’t know what we didn't have until LtF got involved.’
Written by
Liz Leach Murphy
LivesthroughFriends Director
To speak with a member of the LivesthroughFriends team about how they can work with you or an individual you support, visit www.livesthroughfriends.org.