Drug & Alcohol related Bereavement & PEER SUPPORT “Disenfranchised grief” Drug & Alcohol related Bereavement & PEER SUPPORT ARUK Conference 2017 Oliver Standing (Adfam) & Jo Dickie (BEAD Volunteer)

Some stats 2015: 8,758 alcohol-related deaths in the UK (ONS) 2015: 3,674 drug-related deaths in England & Wales (ONS) 27% drug deaths have alcohol also on death certificate (Ghodse et. al., 2013) In UK alcohol-related death rates have not changed in recent years Majority of deaths (65%) among males For both sexes rates were highest for 55-64s Strong correlation between drug/alcohol mortality and social inequalities

Project overview Adfam and Cruse partnership 2013–17 Funded by Big Lottery First year focused on research & consultation Years 2-4 focus on delivering peer support: Trained 42 families & friends bereaved through drugs and alcohol Who: Offer structured 1-2-1 support using Cruse model Offer informal befriending Run peer support group in Ldn (3 rounds so far) Contributed to new website! www.beadproject.org.uk

Our research Findings from the online survey (n=100) Wide breadth of experience (substances, patterns of use, timescales vary hugely) Drugs cited as most common cause of bereavement (40%) with alcohol/drugs next (30%), then alcohol (35%) Family & friends, family support group best forms of support med-long term after bereavement Police, victim support, social services least effective forms of support med-long term

Experiences of bereavement Stigma - others make judgements ‘As it is very different from other bereavements. It is very stigmatised. I have not wanted to tell people both my parents died through addiction – people see it as self inflicted.’ Self-blame ‘You carry a certain amount of blame, not necessarily correctly, but you will think that you should have done more to address the addiction.’

What people told us “Friends didn't know what to say or do, people don't understand the loss of an alcoholic or drug addict, they think it's self inflicted. So friends avoided me rather than just be there for me.” “To be honest some times it is a relief to know it’s an ending.” “It is a double bereavement and therefore complex. You have already lost your loved one to drugs or alcohol so the grieving process may have already started.”

Disenfranchised grief “Disenfranchised grief” – term coined by Kenneth Doka initially used to describe grief felt by those in relationships which not recognised by society (eg gay relationships) Since then expanded to cover grief from types of death not fully recognised or accepted by society, including substance use

What does the peer support look like? Peer support is authentic, supportive, non-judgemental 1-2-1 support uses Cruse model: 6-8 50 min weekly sessions Informal befriending is 4-6 months Group is 8 structured sessions over 8 weeks with peer co-facilitators All clients are assessed by trained assessor (therapist) All volunteers are supervised

Does it work? Yes! ‘It felt like a bit of a godsend really… being able to speak with someone who has lost a partner because of alcohol as well, so a lot of the feelings of guilt she could understand…’ (Family member supported by BEAD) ‘It was connecting to people who had experienced the same things and connecting with them and supporting each other.’ Male (1)

‘The two facilitators had also been through it as well and that was important. If you had had people who knew nothing about it, it would have been ridiculous.’ (Group Attendee) First group have started Whattsapp group - organic ongoing peer support in action

What’s next? We are trying to get more money to keep everything going and expand the offer Website is good legacy: www.beadproject.org.uk Bath/Sterling Unis – good-practice guidelines Supporting support groups around the country focused on this already (5 we’ve found so far) Thanks - get in touch: O.standing@adfam.org.uk @OliverStanding

Jo’s story Jo is a brilliant peer support volunteer who’s run two rounds of our support group

Questions for group What’s so good about peer support? What’s special about bereavement through substance use? Would alcohol-related bereavement bring up different issues to drug-related deaths? What does a recovery journey look like from substance use related bereavement? Can working as a peer volunteer play a part in a bereavement recovery journey? What difference might gender play pre/post bereavement? What might meaningful support for bereaved people with alcohol issues look like? Does this kind of project overlap with other agendas you are working on locally? Can you promote wider understanding of this issue?