The Innovations team here at Penumbra have just launched a unique self-management toolkit for people living with ARBD (alcohol related brain damage). The team at Penumbra developed the toolkit in tandem with colleagues and residents in its two ARBD services located in Edinburgh’s Milestone and Glasgow’s Supported Living service, and features recovery stories from people accessing Penumbra support. Read the full article on the ALLIANCE blog.
Whilst clinical practice guidelines for the medical treatment of ARBD exist, Penumbra believes that this comprehensive recovery focused toolkit may be the first of its kind in Scotland designed for use by people living with ARBD.
As well as providing important medical information about ARBD and alcohol use, the toolkit covers key practical and holistic information on recovery – including information on reducing stress, improving memory, coping with challenging emotions without using alcohol, nutrition and exercise, connecting with others and the community, along with guidance on improving digital skills, budgeting and knowing your rights.
The toolkit is based on the Penumbra approach to recovery through their HOPE framework. The toolkit is designed for people who have received some level of support (for example, in a dedicated ARBD service) to help them as they move towards independent living, or for distribution to those people who live in the community. The project was developed through funding from the Health and Social Care Alliance Scotland (the ALLIANCE) Self-Management fund. Administered on behalf of the Scottish Government, the ALLIANCE’s Self-Management Fund supports projects that increase the capacity of the people of Scotland to live well with long term conditions.
Penumbra are taking the opportunity as part of the launch of the toolkit to pay tribute to David Richardson, who sadly passed away before its publication. David accessed Penumbra ARBD support services and worked as a peer volunteer within the charity’s Glasgow Supported Accommodation team. During this time he was able to help and support people living with ARBD through insight from his own lived experience. By kindly sharing his lived experience with Penumbra, he was able to contribute greatly to our learning and practice around ARBD. He contributed to the toolkit and his story features in it. David was nominated in the 2019 Self-Management Awards as Volunteer of the Year.
Penumbra’s Innovation and Improvement Practitioner, Courtney Cooke, said:
“We’re excited about the toolkit for a few reasons. Not only do we believe it to be the first of its kind in Scotland, but it also takes in the views and experiences of people living with ARBD. We knew that the co-production element of this piece of work had to be a big part of the development process because as an organisation we value lived experience in all the work we do. We wanted the toolkit to reflect the importance of self-management in recovery and telling recovery stories is a key part of that. It was important to work with people with lived experience of managing ARBD in order to design something that would be a useful addition to someone’s recovery. We were also very fortunate to work alongside the clinical team at Penumbra’s Milestone service, with highly valuable input from NHS Lothian Psychologist, Dr Stephen Smith.
“Talking about ARBD in terms of recovery is an important point here because unfortunately there’s a perception that ARBD is impossible to recover from. However, this isn’t true. With the right support, people can and do recover: indeed, 25% of people living with ARBD make a full recovery, with 50% making a partial recovery and almost everyone regaining some previous level of living.
“ARBD and overuse of alcohol can be very misunderstood and there’s no doubt that it’s a complex condition, as it can lead to physical and cognitive impairments which vary from person to person. Recent research has shown that ARBD is an underdiagnosed condition, as in many cases it can present as dementia and diagnosis can be complex. We hope that our toolkit will be one more step in raising awareness and we’re grateful to have had the opportunity and support from the Alliance to help us develop the project.”
Penumbra’s Head of Innovation and Improvement Stephen Finlayson added:
“It’s important to remember that very few people want to live a life fully reliant on alcohol. Many people whose lives have been negatively affected by alcohol have physical or mental health issues, and experience discrimination. With help, kindness, understanding and support from friends and family it is entirely possible for people living with ARBD to have a happy and fulfilling life.
“We want our toolkit will be a practical addition to people’s recovery journeys in terms of identifying self-management tools that work for each person’s life, but we also want to inspire hope that recovery is possible for those living with the effects of ARBD.”
Health and Social Care Alliance Scotland’s Chief Executive, Professor Ian Welsh OBE said:
“Penumbra’s toolkit is an example of the innovative services and projects that the Self Management Fund seeks to support. Co-produced by people living with ARBD, the toolkit highlights that when people are supported to adopt self management approaches they can live their life well, on their terms, and the impact of projects such as these in making a real difference in communities.”
Download the toolkit
The toolkit can be downloaded as a whole document or section by section, and is accompanied by a podcast album of relaxation exercises. If you would like a hard copy of the toolkit, please email the team firstname.lastname@example.org