MWC report care lacking in alcohol brain injury services

People who have sustained brain damage as a result of injury or previous alcohol use are missing out on the opportunity to recover because of missed diagnoses and a lack of specialist care and treatment, according to a new report from the Mental Welfare Commission for Scotland.

The Commission visits people who have a mental disorder to ensure that they are getting the care and treatment they need and that is consistent with their rights. For this report, called ‘Missed Opportunities’ the Commission visited167 individuals with a diagnosis of either acquired brain injury (ABI) or alcohol-related brain damage (ARBD) who receive care in NHS psychiatric wards, care homes, community services and supported tenancies.

A fifth of the people visited were found to be inappropriately placed.  A view that was supported by a number of care home managers who said that many people in their care would be better suited to a community placement.  Individuals and the people providing care were often frustrated in their rehabilitation efforts, as a result of limited availability of expertise and services needed to provide focussed assessment and support.

While the majority of people received care and treatment that was considered ‘adequate’, the Commission found that opportunities for individual rehabilitation were being missed because care managers, care home staff and guardians were not always aware of the effects of an earlier  brain injury, or the possibility of alcohol related brain damage. They found ABI and ARBD were sometimes confused with dementia. Unlike people with degenerative dementia, people with ABI or ARBD can recover some of their skills and independence with the right treatment and support.

The small number of people who were receiving care and support from community based services, or who lived independently in a supported tenancy, reported the most positive experience and the best quality of life.  They were more involved in daily tasks, planning for the future and enjoyed active and meaningful lives. Some people with ARBD were rebuilding relationships with families and one was exploring a return to work.

Commenting on the findings Commission Director Dr Donald Lyons said ‘We think that people with alcohol-related brain damage need to be identified earlier. Expert assessment by people that understand ABI and ARBD is essential and we were disappointed to find that this did not always happen.  Of course, once people have been assessed the services need to be there to support them. Unfortunately, during our visits we saw too many people who were “stuck” in hospital or care homes because there was no other facility available. This is hard on the individual and on the professionals providing care. 

We don’t think this is necessarily about a lack of resources; it’s about getting resources in the right place and applying the existing principles of good mental health care.  We think Scotland needs a national network that brings together those with the expertise and experience to help focus services on the needs of people with ABI and ARBD and to help make the most of their opportunities for recovery.’

SAMH, the Scottish Association for Mental Health, is one of the community-based service providers visited as part of this project.  SAMH Chief Executive Billy Watson commented
“As one of the few providers of specialist ARBD services in Scotland, SAMH knows how important it is for people with this condition to get the right support. We’re pleased that the Mental Welfare Commission has investigated this area of care and we look forward to involvement in implementing the recommendations”.

Case study  – Ed’s story

Ed McBrearty, 42, is a service user at SAMH’s Tormusk service for people with alcohol related brain damage (ARBD). He has been using SAMH services since 2007.  In 2009 he moved into his own tenancy with the Tormusk service.  This is Ed’s story.

“I was drinking heavily for twenty years: my dad says I started when I was fourteen. I got into bad company and drinking was just the thing to do: it wasn’t seen as unusual.

I lost my mum during that time. After I stopped drinking and got out of hospital for the last time, my brother had to remind me how she had died: I couldn’t remember.  He also had to tell me that he had moved to England twenty years before: I didn’t remember that either. 
My family was really worried about me. My niece told me recently, “Uncle Edward, we didn’t know if you’d make it till Christmas”. But nobody could stop me drinking: I ignored all the advice I got.

I used to get seizures when I was drinking, and then I’d fall and have to go to hospital. But I never thought I was an alcoholic. Hospital was frightening: there were people having breakdowns. I needed the strength to stop drinking, and when I was finally ready to do it, the staff at SAMH got me through.

I don’t remember things now, because of my drinking. The staff will ask me things, like, do I know how to swim? And I don’t remember. I get frustrated, when I can’t remember things like that.

It was a big step to move to SAMH’s Tormusk service. Before, I wasn’t in control of my money: my brother just gave me what I needed. Now I pay my own bills and manage my cash.

People don’t realise what they’re doing to their brain cells when they drink. We need to change the way people think about alcohol: people think “I’ve had a hard day, I need a drink, I deserve it”. They don’t realise how much they’re drinking. People can wake up with no idea what they did last night, and that’s seen as totally acceptable.

I feel great now, I’m really happy here. But if I hadn’t had SAMH, where would I have ended up? I see people sleeping on the streets and I think – that could have been me”.

To download the Missing Opportunities report, visit; http://reports.mwcscot.org.uk/