Centre for Public Health

Liverpool John Moores University

Public Health Institute - Liverpool John Moores University

World Health Organization Collaborating Centre for Violence Prevention

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Bereavement following drug or alcohol use

31 July 2015 | Dr Gordon Hay

As a statistician I specialise in counting people, particularly people who use drugs such as heroin. I sometimes count deaths that are due to an individual’s drug or alcohol use, however rarely do I need to consider the individual behind the statistic or the people affected by the death.

Over the past few years I have been collaborating with an inspiring group of researchers at the Universities of Bath and Stirling, on a project about bereavement following drug or alcohol use. Details of the project are available at:

http://www.bath.ac.uk/cdas/research/understanding-those-bereaved-through-substance-misuse/index.html

Information about the main output from the project, a set of guidelines for professionals, can be found here. I would ask anyone reading this blog to disseminate the guidelines to professionals who come into contact with people bereaved due to drugs or alcohol.

The research project linked in with different support groups, too numerous to mention in this blog, but I want to highlight the work of an organisation that supported our research and is doing extremely valuable work with young people affected by alcohol or drug related bereavement.

http://www.drugfam.co.uk/how-we-help/bereavment/nicholas-mills-memorial-project-3/

They are hosting workshops, supported by the Amy Winehouse Foundation, in August and September and there are opportunities for young people aged 18 to 30 to participate in what promise to be worthwhile events.

The bereavement project has been an interesting project to work on, not least due to the interdisciplinary nature of the team. Prior to becoming involved in the project, I was unaware that there was Centre for Death and Society at the University of Bath, although I had previously worked with Linda Bauld and Jennifer McKell from the University of Stirling on projects looking at benefit uptake by drug or alcohol users.

My colleagues at the Centre for Death and Society were from more of a sociological background and I learned a lot over the course the project working with those who, while researching the exact same issue, came from a completely different background.

The culmination of the project was the launch of the guidelines at an event in London in June. It was held in the main hall of Friends House, a room originally designed for Quaker annual meetings and it was a fitting setting for such an inspiring day.

My input was probably the least taxing of the project team. While colleagues were presenting the findings of the study or getting the audience to think about how the guidelines could be used in practice, I was asked to introduce a performance by a drama group from Glasgow.

I have to admit that it was one of the most emotional experiences of my academic career so far. The Drama was called Chap at the Door and was performed by a group of women who are part of FASS, a confidential support service for parents and adult family members affected by or concerned about a loved one’s drug or alcohol use. Details of the Drama, and the group are available at

http://www.fassglasgow.org/chap-door

I felt I had to say something interesting in my introduction to the Drama so I said a few words about myself and the work that we do at the Centre for Public Health. In front of an audience of about 100 people, I discussed how I had personally been involved with one alcohol-related death and one drug-related death over the last few years. The alcohol-related death was a family member who drank heavily throughout their life and died of liver cancer in a hospice in their sixties. The drug-related death was someone in their twenties who died suddenly of a methadone overdose. I had never met them, but they were a nephew of a close friend of mine and I was privileged to be in a position to support the family at the coroner’s inquest. The point I wanted to make was that, at the start of the bereavement project, I would have said that these two deaths would typify the alcohol or drug related deaths we would include in the study, with alcohol deaths being predominantly in older people who experience chronic issues due to their life-ling alcohol use whereas drug-related deaths would be more sudden, predominantly affecting younger people. This difference made me question the appropriateness of one study looking at, what to me, would be two clearly different types of death.

However recent work that I have been involved with in the Centre for Public Health has challenged my view of that. In the RADAR project, where we evaluated an innovative pathway which takes turning up at A&E with alcohol related issues directly into residential rehab, I was struck (as was the interview team) with the number of people who died soon after leaving rehab. It was a small number, and the RADAR project was overwhelmingly successful and cost-effective, however I wasn’t prepared for trying to carry out a follow-up interview with someone with an alcohol problem to be told that they had died, particularly due to the age of the individual.

What is also becoming apparent in the work that we do in the Centre for Public Health is that people who use drugs such as heroin are dying due to reasons other than overdose. In effect, many opiate users are now at an age where they are dying of diseases that are sadly predominant in communities experiencing social exclusion, such as heart disease, stroke or cancer, but dying at a younger age.

It would be wrong to suggest that the dichotomy between drug-related deaths and alcohol-related deaths does not exist, with drug-related deaths impacting more on younger age groups (to the extent that drug use could be contributing up to third of excess deaths when comparing Scotland with England, as one of my previous papers suggested), however I think the lines will become more and more blurred in the future.

The emotional part of the experience was watching the drama, listening to the real story that the members of the group face, or dread facing. Many of the participants had experienced bereavement of a family member, however one stated that she is still waiting for the ‘chap at the door’. Prior to coming to Liverpool, I lived in the east end of Glasgow (where the drama was set) and was a member of the Children’s Panel for that area, (the legal tribunal responsible for the care and protection of children in Scotland) which was mentioned in the drama.

It was difficult saying anything after the drama had finished, although it was my job to go back up onto the stage and thank the group and field questions. While I coped with that (and extricating the microphones from the drama group), afterwards when taking the microphones up to the gallery to the audio-visual guy, I just had to sit by myself, trying to keep it together.

The bereavement project is coming to an end soon, although the core team at Bath and Stirling are trying to get funding to continue the dissemination of the guidelines.

At the start of the project we were privileged to have Joan Hollywood as a key member of project team. Joan’s son died in 2008 as a result of his drug and alcohol use. Unable to find support, Joan and her husband founded Bereavement Through Addiction (BTA) in Bristol. A tireless campaigner for people bereaved though substance use, Joan was a key inspiration for the research and it was a great loss to the project when she suffered two strokes and died a few weeks later on 10th March. The guidelines are dedicated to Joan and her passionate commitment to improve support for people who have lost a loved one to drugs and alcohol.