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Community rehab

‘Recovery from ARBD is the norm, not the exception’

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Reflecting on the recent ‘Recovery and Rehabilitation in The Community: Alcohol Related Brain Injury in Ireland’ event, senior clinical psychologist Dr Nichola Robson shares her analysis for NR Times 

 

It was a pleasure to listen to some of the leading professionals talk about alcohol related brain injury (ARBI), a condition arguably encountered in most areas of clinical practice. 

The theme of ‘hope’ ran throughout the event, which was hosted remotely by Leonard Cheshire, with the central message that recovery from alcohol related brain damage (ARBD) is the norm, not the exception. 

With the right kind of specialist intervention (including the provision of long-term residential placements), an estimated 75 per cent of individuals with ARBD experience a degree of recovery, with complete recovery possible for the remaining 25 per cent.

The day consisted of presentations from experts, interspersed with video anecdotes from service users’ family members and staff from Leonard Cheshire ARBI unit, ending with an interactive discussion between the audience and expert panel members.

 

Dr Jenny Svanberg (consultant clinical psychologist), clinical expert and author in the field, kicked off the day with an excellent summary of the available evidence regarding alcohol and the brain. She provided stark prevalence data and discussed the impact ARBD has on utilisation of non-specialist treatment services. 

She also explained mechanisms through which alcohol damages the brain (both transient and more longstanding effects), the neurological structures affected, and how this maps onto the neuropsychological symptoms and clinical presentation. 

Dr Svanberg outlined inherent diagnostic complexities due to subtle initial impairments often being masked by intoxication and chaotic lifestyle. She also highlighted issues of stigma faced by those with ARBD, and how their difficulties are often at least in part, often attributed to free choice. 

However, she explained that due to the neurological impact of alcohol, specifically on the frontal areas of the brain, and associated cognitive impairment later in progression, reasoning and subsequently choice, is significantly impaired, as is the ability to engage with treatment.  

Next, Professor Ken Wilson (Professor of Old age Psychiatry, Liverpool University), delivered a captivating talk on the clinical characteristics and experience of individuals with a diagnosis of ARBD. He used illustrative excerpts from clinical sessions to demonstrate the how these individuals present in clinical practice. 

He discussed how intact working memory can mean that individuals present plausibly in conversation, however due to short term and longer term (episodic) memory impairment, they experience significant retention and functional difficulties. Due to their cognitive profile these individuals present with reduced insight, a high degree of confabulation and suggestibility, and are therefore exceptionally vulnerable. He discussed the implications of this for assessment of risk and mental capacity. 

Prof. Wilson too emphasised the need to better understand the complexities surrounding this condition, including typical neuropsychological impairments, in order to challenge stigma and support engagement with treatment services (where available). In the absence of any specialist service pathway, individuals with ARBI tend to experience repeated relapse and readmission, with significant human and economic cost.

Following on from Prof. Wilson, Grant Brad (team leader, Glasgow Addiction Services’ ARBD Team) discussed the process of setting up and securing funding for specialist ARBD services. He talked through the service pathway in Glasgow, which covers acute and community settings (including assertive outreach), and offers holistic treatment provided by a specialist multidisciplinary team. 

Grant emphasised the need for a lead care group to support diagnosis and navigation of treatment pathways. He also presented evidence of significant cost savings (primarily due to reduced service utilisations) and reduced mortality associated with the service. He addressed the complexities of assessment and suggested that in absence of formal cognitive testing (contraindicated due to ongoing alcohol use), assessment should involve establishing a timeline of issues, consulting medical records, assessing functional ability through observational methods, assessing and managing risk. 

Grant’s team in the process of developing an audit tool to be piloted in the near future, to evaluate the effectiveness of the treatment provided. He is also keen to see the development of a professional network to facilitate the sharing of good practice. 

Next, Diane Watson (ARBI clinical lead, Leonard Cheshire) provided an overview of the recently opened specialist fourteen bed alcohol related brain injury unit, which offers rehabilitation and residential placements (of up to three years). Diane discussed the service pathway, referral criteria, team configuration, and treatment approaches. She also provided some reflections on the journey so far, detailing substantial successes and some challenges, the latter mainly related to COVID restrictions.  

Dr Anne Campbell (senior lecturer) and Dr Sharon Millen (research Fellow) from Queens University Belfast outlined their mixed method evaluation of the Leonard Cheshire intervention. They aim to measure outcomes relating to psychological wellbeing, functional abilities, relationships, and community participation as well as capturing the lived experience of service users, family members and staff. Preliminary findings suggested an improvement on measures of anxiety, depression, cognition, and function.

The final session was co-chaired by Dr Shield Gilheany (CEO, Alcohol Action Ireland) and Dr Helen McMonagle (Rehabilitation Coordinator, Alcohol Forum), and involved an interactive discussion regarding “the way forward”. Expert panel members included Dr Marie Goss (Consultant Clinical Neuropsychologist), Prof John Ryan (Consultant Hepatologist, Beaumont Hospital), Dr Kieran O’Driscoll (Consultant Psychiatrist, Bloomfield Mental Health Services) and Grant Brand. Discussions centred on the development of specialist treatment pathways (spanning acute and community settings) as well as the use of legislation to protect vulnerable individuals with ARBD.   

To summarise key messages from the day: the impact of ARBD often goes under-recognised and there is a lack of specialist treatment pathways across the UK. Increased education (both public and professional) is needed to improve awareness and understanding of underlying pathology, pattern of impairment, presentation, and treatment needs. 

Dr Nichola Robson

Undoubtedly there is a way to go, but this conference provided a valuable opportunity to showcase innovative service provision models supported by high quality data demonstrating effective outcomes, and in doing so sees us one step closer to meeting complex needs of this population. 

One can only hope that these service provision models (or similar) can eventually be commissioned and rolled out across the UK.

* Written for NR Times by Dr Nichola Robson, senior clinical psychologist (neuropsychology) at Sunderland & Gateshead Community Acquired Brain Injury Service (CABIS), Cumbria, Northumberland, Tyne & Wear NHS Foundation Trust

Brain injury

First-of-its-kind project supports brain injury survivors in return home

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A first-of-its-kind house has been created for people with brain injuries, using the latest in technology innovation to support them in their return to living independently. 

The Link is a pioneering project designed to bridge the gap between acute medical settings and return home, or to allow for a period of independent living, which uses assistive, smart and strategy technology to enable residents to live autonomously thanks to the ‘hidden’ support within the building. 

The purpose-built house, in Snodland, Kent, is a unique innovation from BIS Services, which has been meticulously planned for over three years. It offers a solution to people who are set to move back into the community but want to live in somewhere that feels like home during their transition, rather than a multi-occupancy unit, while not compromising on levels of support.  

But while they are able to live independently, they have the benefit of round-the-clock subtle monitoring, with observations of skill, patterns of behaviour, independent motivation and initiation, all of which can be graded and reduced where appropriate, allowing for maximum safety whilst increasing positive outcomes. 

The Link has also partnered with Cambridge Brain Sciences for frequent delivery of cognitive assessment, hailed as an exciting development in terms of providing evidence of improved functional skills, as well as cognition.  

In addition to its range of holistic therapy services, including mindfulness therapy, hypnotherapy, art, music and horticultural activities, The Link has also established close links with the local Kent community, enabling opportunities for vocational placements and further education courses, to further assess skills and relevant goal setting.

And while the property is preparing to accept its first clients onto its 12-week residential placements at The Link, a second is already being planned elsewhere, to help even more people to be supported in this way. BIS Services plan to roll out the service nationally and they are currently sourcing the next perfect location.

The Link builds on the commitment of BIS Services to raise standards in cognitive rehabilitation provision, with it delivering person-centred care to people living with ABI through brain injury, neurological injury and mental health issues throughout the country. Transitional services will be available upon discharge with BIS teams to ensure seamless support packages. 

“This has been a dream project to work on. It’s a one of a kind which has been in the planning for over three years,” says Eky Popat, operations director at BIS Services. 

“We’ve put a huge amount of effort into the design of the house, making sure it feels like a home, rather than a clinical environment. Every little corner has been thought of, and the appliances and products are all absolutely what is needed, no stone has been left unturned. 

“In addition to the design of the house, we carried out a huge amount of research into how we could assess the impact of things like cold calling, internet usage, procedural learning, and how we can capture that data. That data supports whether a client can live independently, so our decisions are based on evidence and robust assessments. 

“It can be so challenging to manage the unpredictable nature of independent living in other settings, so we have worked hard to factor in how clients learn to deal with real life situations and emergencies. 

“We want to empower clients so they feel at home here, while also preparing for living independently with the assurance for them and their families that support is there if they need it.” 

In addition to the acquisition and development of the property, the use of technology marks another significant investment in the creation of The Link. 

“Brain injury is often called a hidden disability, and the support here is also hidden, we are using the very latest in technology to support our clients in a very modern way,” says Natalie Mackenzie, director at BIS Services. 

“We have some fantastic appliances throughout the house, which can all be used easily by clients but aren’t so expensive they are completely inaccessible to clients once they return to their own homes – we have made sure they are all affordable innovations which could be used as part of their future needs.

“We have smart devices throughout the house, including a smart fridge, the contents of which can be viewed while a client is out shopping to see what they need, as well as aiding with expiration, shopping list creation and so on, and a personalised shower system for people with hyper sensitivity or lack of sensation, which has auto shut-off to help with time perception, as well as prompts 

“We have Alexa throughout the house too, which further helps with prompts and reminders and can then be transferred easily into their own homes once their placement with us comes to an end. It of course works in tandem with the skilled staff that are trained in identifying cognitive deficits and their impact on function.

“It’s really cutting-edge and we’ve identified that it’s the little things that often matter the most, it’s a great opportunity for our clients. There is lots more in there as well, including a therapy room and other smart technology focusing on different cognitive domains. When coupled with our company specialism in cognitive rehabilitation, the clients really do have access to highly specialised features.

“We’ve supported clients in living independently for over ten years and it’s always a sticking point to find a property that meets the needs of some. They want and need the independence, but don’t want to be in a brain injury unit, so it’s brilliant we have been able to create something like this. We provide independence from the outset, which in turn will increase positive outcomes for the clients long-term” 

And with the successful creation of the first The Link comes plans for a second are underway, with aspirations for even further
roll-out. 

“The aim is to have several of The Link across England. We are so proud of the first and we’re already working on the second,” says Eky.  

“We’re so happy clients have the opportunity to be part of this, they deserve this opportunity to show their abilities to live independently. They can look back on this time here and be very proud of what they have done. We want to offer it even further through the opening of more houses, that is in the plan.” 

Further referral information can be found on the BIS Services website www.thebiss.co.uk 

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Community rehab

Specialist care provider rebrands and reveals expansion plans

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A specialist children’s care provider is rebranding and expanding its service offering. 

Focused Healthcare has become Children’s Complex Care Limited, which will build further on its work in supporting children and young people aged up to 25 with complex care needs in Greater London and the surrounding counties. 

Its nurse-led, personalised care at home service enables young people to live with their families in their own communities, and supports them in doing so. 

The rebrand also creates the opportunity to expand service offering, with the business speaking of its aspirations to create a specialist children’s autism offering and the development of a unique child to adult services transition pathway in the future.

The creation of Children’s Complex Care comes after months of research, consultation and feedback with families, clients and staff, and comes after the acquisition of Focused Healthcare by Voyage Care in 2017. 

Andrew Cannon, CEO of Voyage Care, says the rebrand reflects the closer aligning of Focused Healthcare and its offering with its parent company. 

“I am delighted to embark on this next chapter. It’s an opportunity to build on the fantastic achievements we’ve already accomplished together, while developing both businesses in line with our strategic objectives,” he says. 

Jayne Davey, Voyage Care COO, says: “These additions will support our ambition for commercial growth while helping more children, young people and families to benefit from high-quality clinical care and support.”

As part of Voyage Care, a provider of specialist care and support for people with brain injuries, learning disabilities, autism and other complex needs across the UK, Children’s Complex Care decided to rebrand following feedback. 

Some of the main points to arise from the responses were that the previous name was hard to say and spell, causing problems in people reaching the business; the need for better definition of the services provided; and the recognition of the improvements made post-acquisition.

Eileen Lock, managing director of Children’s Complex Care, adds: “The rebrand is really exciting! I look forward to seeing what we can achieve together for children and young people in the complex care sector.”

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Community rehab

‘Submit to Love. Everyone can do that’

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By engaging brain injury survivors in art, Submit to Love is supporting them to rebuild their lives, whilst also uncovering hidden or forgotten talents. NR Times learns more about he East London project which is enabling people to submit to the love of art

 

“In a strange way, disability has freed me up to express myself in my art, and no longer care what others think. I have been forced by disability to come to terms with living in a less than perfect body in a less than perfect world.”

For Chris, a 68-year-old retired science teacher and youth and community worker, art has enabled him to accept his new self. 

Having developed stroke-like symptoms after an operation seven years ago, which have affected his writing hand, face and speech and means he now walks with the aid of a stick, Chris produces artwork to explore his new self and how he is viewed. 

Among his works are a series of paintings which ‘reimagine’ iconic artworks with him as the central figure – The Scream, Ophelia and Venus. 

“Art was a way of exploring and communicating what it felt like to experience big changes in my life. ’Normal’ people often feel they have to get everything right to produce art,” says Chris. 

And through the Submit to Love project, Chris is one of many brain injury survivors who have been enabled to discover and build new talents and means of dealing with their disability. 

Having been encouraged by the studio manager to pick up a paintbrush and paint for the first time in many years, Chris, and many others, have discovered huge benefits in doing so. 

The art project, part of Headway East London, has engaged hundreds of survivors in this way over the past 20 years, supporting them gradually and at their own pace to produce painting, printmaking, ceramics, embroidery and mosaics, which are frequently so good they are displayed externally – pieces have been part of exhibitions in the Southbank Centre, Southwark Park Gallery and the Autograph Gallery. 

Some of the project’s artists – with ages ranging from people in their 20s through to over 80s – have also been given the opportunity to discuss their work in the Tate Modern, Turner Contemporary, RA and Barbican Centre.

And through Submit to Love, whose mission is ‘discovery through art’, survivors are able to take a newly-discovered – or re-discovered – talent and use it to aid their rehabilitation. 

“One thing we’re very clear about at Headway East London is that the studio doesn’t offer art therapy in the way that people will assume,” says Laura Owens, from the charity. 

“The vast majority of the studio artists are self-taught and when they join us they haven’t done any art since school, or at all, previously. We encourage artists to develop their own artistic practice and support them to build up a portfolio of work, and over time each artist develops their artistic ‘voice’ and unique style. 

“A few people now think of themselves predominantly as artists, which is fantastic as the studio is providing new roles and identities, but it’s definitely not something we’re actively pushing for. 

“More than anything we just want people to create art about the things they are interested in and what inspires them, however unusual or unexpected that may be.” 

The Submit to Love studio – which, in pre-COVID times, could welcome up to 40 artists a week – has developed strongly since being established, and is led by the creativity of the survivors it engages and continues to grow in response to that.

“Art at Headway East London began over 20 years ago, when the charity was first established, with a table and a sink in the main centre, growing and growing until it moved into its current space in a converted railway arch next to the main building,” says Laura. 

“Like any activity at Headway, it was started because our members wanted it. We try to co-produce our offering, meaning we’ll only run something if there’s appetite for it, and thankfully, with art, this appetite only increased.

“Some of the artists use their brain injury and its effects to inform their work whereas others don’t. Some talk about the way art has helped them to process the changes and losses they have experienced as a result of their brain injury, whilst others see it merely as a fun pastime.

“Over time, as members started to self-identify as artists, we felt that was really important that the studio had its own identity and name, separate from Headway.”

The name Submit to Love was born from the words and artwork of Tony Allen, one of the studio artists.

In creating the new identity, Tony said: “Everyone’s got to love. When you love someone, you enjoy them and you like their work. It’s highly important, that is. Submit to Love. Everyone can do that. You just think about anything you want, and you think, ‘Yeah, I could do that.’ And you put pen to paper.”

“We are led by the artists and want their voices to always be at the forefront,” says Laura.

“Some of our artists have been working on and refining their craft in the studio for over 20 years, so it’s no surprise they have a high-quality portfolio worthy of exhibiting. 

“Having said that, there are some artists who are fairly new to art who have a bold vision and distinguished style from the start. 

“The fact is, so much great art exists outside of the traditional spaces, if we’re willing to look for it. We’re seeing this happen a little more, but there’s still a lot of work to be done to equally value and appreciate artists working outside of the mainstream.” 

Despite lockdown, work has continued in earnest, with sessions being held via Zoom and the studio holding its Print Fest online, which showcases the different printmaking practices artists use. 

Held for the first time and in-person in 2019, which enabled artists to meet the project’s many supporters and enabled them to buy the artwork, it was successfully translated into an online event for 2021. 

And while the project team are eagerly awaiting the opportunity to bring everyone back together post-lockdown, it has given an opportunity to reflect on the many achievements of the survivors, and of the Submit to Love project itself. 

“We’re so proud of the growth of the studio in the past few years,” says Laura.

“Not only have we seen our artists work exhibited in Southbank Centre, Southwark Park Gallery and the Autograph Gallery, we’ve also supported our artists to talk about their work and run workshops in the Tate Modern, Turner Contemporary, RA and Barbican Centre. 

“We’re really excited to be able to show our first embroidery exhibition at Autograph when the gallery reopens in early Summer 2021. Alongside that, we’ve completed studio commissions for clients like It’s Nice That, and we’re selling our own range of merchandise products. 

“Being situated in East London also means that we’ve had the pleasure of working with some fantastic, talented guest artists – too many to name! 

“We’re excited to see where this leads us in the coming years.”

* To learn more about the project, and to buy some of the artists’ work, visit Submit to Love 

          

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