Shaped by lived experience, inspired by hope and recovery

• Written by: Courtney Amesbury Cooke — Penumbra — Innovation and Improvement Practitioner
• Published: 13th July 2021

Penumbra's new one of a kind toolkit to help people living with ARBD into recovery was recently featured on ALLIANCE Live

At Penumbra (this link will take you away from our website), we have services in Glasgow and Edinburgh where we support people in recovery from Alcohol Related Brain Damage (ARBD). We recognised that there was a gap in self management and recovery information for people with ARBD and have recently launched a toolkit to help people with ARBD move into recovery (this link will take you away from our website).

ARBD is a complex condition, which can lead to a variety of issues including physical and cognitive impairments. People with ARBD may have difficulties with balance and coordination, short term memory loss, difficulty retaining information, regulating emotion and behaviour, as well as experiencing ‘confabulation’ – where the brain fills in gaps in memories with stories that feel true but actually aren’t. Sadly, there is a common misconception that ARBD is impossible to recover from, but we know this isn’t the case – 25% of people with ARBD make a full recovery, with an additional 50% making a partial recovery, and almost everyone regains some of their previous level of living.

As well as dealing with these physical and cognitive impairments, people with ARBD often have a tricky journey during and after diagnosis in order to get the right support that will aid recovery.  As part of this, people with ARBD may experience discrimination as they navigate a complex system of health and social care support. The use of the term ‘Alcohol Related Brain Damage’ in and of itself arguably perpetuates stigma by suggesting that the condition is self-inflicted.

Stigmatising ARBD risks the understanding of a complex condition and it risks recovery. The truth is that many people with ARBD may have had challenging lives due to alcohol dependency, and people with ARBD are overrepresented in the criminal justice and homeless populations. Very few people want to live a life based around alcohol use, and an important aspect of recovery is the understanding that ARBD forms a part of a person’s life experience – but doesn’t have to be the one defining factor in a person’s life.

Our toolkit takes a holistic view of recovery to help with this process and focusses on personal strengths, rather than limitations, guided by our HOPE framework. Whilst clinical guidelines for the treatment of ARBD exist, we believe this is the first of its kind to promote recovery. Lived experience was important in helping to inform the toolkit. Working with people with ARBD in our services, along with clinical colleagues was vital in ensuring the toolkit covered the areas that were most relevant in early and ongoing recovery. We thank the ALLIANCE Self Management Fund for providing crucial funding which has allowed us to make this available to any and all people and services in Scotland who may find it useful.

The toolkit not only covers a variety of areas such as developing life skills, eating and sleeping well and improving memory, it also covers developing interests, volunteering and community activities, knowing your rights, and relaxation and stress reduction techniques. As remaining alcohol free is a major aspect of ARBD recovery, there are also sections on relapse prevention and what to do if a person with ARBD a slip or a relapse, which is often part of the journey to remaining alcohol free on a long-term basis.  We hope that the toolkit will help to reduce feelings of self-stigma, and act as not only a guide to recovery, but as a tool to help built self-esteem and self-care.

As Wullie, one of the people who was kind enough to share their recovery story in the toolkit said to us ‘ARBD isn’t the be all and end all.’  After a journey where people with ARBD are often defined by their alcohol use, this message is key to unlocking a life in recovery.

Listen to our recent ALLIANCE Live Podcast about Penumbra’s ARBD toolkit.

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