NETWORK A national newsletter on substance misuse management in primary care
Elizabeth Burton-Phillips highlights the difficulties faced by families bereaved by addiction, and how to support them. Ed.
Bereaved by addiction: understanding and supporting the ongoing issues around the death of an addict
Following the death of my son Nicholas Mills in 2004 as a result of his heroin addiction, I set my story down therapeutically (with the full support of my GP and counsellor) in the book ‘Mum, can you lend me twenty quid? – what drugs did to my
family’ published in 2007. I founded the Nicholas Mills Foundation which was officially launched as the charity DrugFAM in 2008. Our activities have centred primarily on offering ongoing telephone and email support, and signposting for those whose loved ones are actively involved in addiction.
As a result of going public with the devastation addiction caused my family, it has become apparent from the thousands of letters and emails I have received that there is a need for specialist bereavement support for those affected by this type of loss. After the success of DrugFAM’s first Bereaved by Addiction Conference in November 2009 a monthly focus group was set up to research the needs of bereaved families to determine requirements for a potential bereavement support programme and to initiate a communication platform for bereaved families. The data gathered also comes from telephone conversations, contact by skype, emails and personal visits to the bereaved. The full details of the research will be discussed at the second Bereaved by Addiction Conference in November 2010.
DrugFAM’s research suggests that there are two types of bereavements that families, friends and carers face. The experience of a ‘first loss’ of their loved one to the disease of addiction compounded by the stigma society puts on them during its active phase; then the worst of all their fears is realised with death, the second loss, which sets them apart from other bereaved parents. This is possibly because society mourns with those families who lose their children to war, illness, accidents and natural tragedies but where addiction is concerned compassion may fail.
The stigma of addiction is a huge problem during the life of the addict and it can continue after death, often amongst immediate friends, other family members and society in general. Some of those bereaved reported how they were treated differently to ‘ordinary’ bereaved families with a lack of understanding that their sense of loss is just as acute as with any other death. Many felt there was little appreciation of the emotional trauma involved for them, particularly if they themselves had found the body. Some of the other problems identified were poisonous press reports, coupled with their own fear, shame, guilt, embarrassment, and believing ‘I can cope on my own’.
Families also experienced a basic lack of support and guidance on the practical aspects of managing the death process. Some families reported that they had to fight for help and attention expecting professionals to have something in place to support them, but there was nothing. Others reported being unable to get any counselling for 11 months which is a long time to wait.
Some families emphasised that they had nothing but praise for their GPs and the partnership with the various drugs teams. Many GPs are clearly taking the lead in breaking down the barriers which result in stereotyping addicts and their families. GPs were identified as a positive strong link to help bridge the gap for families who need more comprehensive help and advice in all the areas which need to be faced following the death.
Many families felt that a key issue following bereavement was the required medical investigations and reports. Families want much more explanation of police and other procedures following the death. They reported that they did not know what to expect, they had very little information other than drugs or alcohol as the cause of death and the time of death.
Families said that they would like practical guidance on the coroner’s approach and report. Many families believed that they should be pre- warned if a coroner is going to call with information. For example, one coroner rang and spoke to a mother who was on her own and she was completely unprepared for what she heard. Understanding the details of the coroner’s report was another area identified for help and support. The issues surrounding substance abuse in death means that the contents and description in a coroner’s report can be very traumatic. Some families reported wanting to open the report but being very scared to do so whilst others said the details which were gruesome and a shock as no one had warned them or advised them in advance of what would be in the report. Some families reported that the toxicology reports took a long time to be completed.
Most families are extremely apprehensive and completely unprepared for the inquest. There is a clear need for more realistic information regarding the inquest and what might be expected. Families wanted to be able to prepare emotionally and to be supported during and following the inquest. The inquest sometimes gives families traumatic details. There is often little consideration in the media about communicating the circumstances of death:
“We didn’t know he was using heroin, so to suddenly hear he had not only died, but how he died... ... That was an incredible shock”.
The way forward
As an ambassador for those bereaved by addiction my charity has a five year plan to set up a national bereaved by addiction support network which will involve working with GPs amongst other professional bodies. Those who are bereaved through addiction have much to share with practitioners so that we all might learn from one another.
Elizabeth Burton-Phillips www.drugfam.co.uk
Founder and Figurehead, Ambassador for those bereaved by addiction
For more details on DrugFAM’s Bereaved by Addiction 2nd Annual National Conference Living with the reality of Loss Saturday 27th November 2010 Buckinghamshire, COST £25 contact Elizabeth@drugfam.co.uk
by 31st Oct
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