Network No 30 (September 2010)
Families Special Edition
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Gloria P tells her powerful story of how Al-Anon, a 12 step organisation which supports the families of people with alcohol problems, helped her.
Mary Hepburn argues that drug services may be failing to support women to plan for healthy pregnancies.
Patricia Boydell describes the important work of Harbour, a family support group.
Vicky Brooks highlights the impact caring for grandchildren can have on grandparents and the family as a whole.
John Westhead takes us through some basic therapeutic approaches practitioners can adopt to improve the service we provide to families.
Samantha Perry and Carole Hunter describe how the families, friends and carers of drug users can play a crucial role in preventing drug related deaths by being involved in a programme that includes administering naloxone.
Joss Smith outlines Adfam's five key challenges to delivering support to families of problem drug and alcohol users.
Elizabeth Burton-Phillips highlights the difficulties faced by families bereaved by addiction, and how to support them.
Is it possible for public sector organisations to have a family centred approach? Phil Merrick, Debbie Lloyd, Barbara Jones, outline how Telford and Wrekin's Family Intervention Project are meeting this challenge, and Sophie Kershaw describes how a Family Drug and Alcohol Court pilot in London is pioneering a new family centred way of working with offenders.
Jo-Anne Welsh highlights the effects of parental substance use on children, and approaches to working with children to build their resilience and improve their outcomes.
Elsa Browne outlines the National Treatment Agency's approach to families in their business plan.
Chris Ford is Dr Fixit to a GP who is supporting the mother of someone who is using crack.
See our top tips for working with families.
Carole Sharma and Oliver Standing describe the latest developments in family services workforce development.
See the latest courses and events.
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We are pleased to publish this Families Special Edition of Network and would like to thank Adfam and FDAP for all the help they have given us to produce it. The process has made us even more aware of the importance of this issue, in particular how hidden and unrecognised families' needs can be. We hope that this edition helps to improve the service we provide for the families of drug and alcohol users - which may well have the result of improving the service drug and alcohol users receive themselves.
We are publishing this edition to coincide with our 5th National primary care development conference, Innovation in an austere climate in Newcastle on 15th October. If you are unable to make this event, watch out for the presentations on our website. We are launching our logo "refresh" at our conference and on this edition. We hope you like it!
A date for your diaries - the RCGP 16th National Conference The public health agenda: making patient centred care the imperative will be in Harrogate on 12th and 13th May 2011. Don't miss it! ...And we encourage you to put in a poster, paper or film/other media with an example of good practice - you could win a free place at the 2012 conference.
SMMGP will be working hard to provide guidance in these uncertain times. Whatever happens, we are confident primary care will remain a central part of drug and alcohol treatment.
The effects of an individual's drug and alcohol problem on their family can be catastrophic, and is a large but often a hidden problem; as many as 17% of the population are likely to have been affected by a loved one's substance use, and between 8-12% of children are affected by parental drug and alcohol use (Ref 1, Ref 2). The range of issues faced by families includes dealing with guilt, isolation, bereavement, harassment, domestic violence, extreme social stigma, and financial difficulties. This can result in chronic stress in one or more members of the family leading to mental and physical health problems.
The anger, shame and embarrassment family members can experience often means that help is not sought and the problem remains hidden from those able to offer a way forward (Ref 3). This hidden problem can be compounded by practitioners' lack of confidence, knowledge, training and guidance in this area of work, and as a result family members' needs can fail to be addressed. This special edition of network, which is a joint collaboration with Adfam and the Federation of Drug and Alcohol Professionals (FDAP), will highlight the key issues for working with and supporting the families of people who use drugs and alcohol problematically.
Primary care can play a unique role in supporting the families of substance users. As family members are often registered at the same practice, practitioners can offer support and health care interventions both to family members and the drug and alcohol user. But often the family member will not present directly with the issues affecting their health by saying "I am stressed because of my son/daughter". Instead they will present with vague symptoms, for example low mood, aches and pains, and trouble sleeping.
"The anger, shame and embarrassment family members can experience often means that help is not sought and the problem remains hidden from those able to offer a way forward"
Evidence suggests that family and carer involvement helps substance users at all stages of the treatment journey and is associated with positive outcomes, both drug-related and social (Ref 4). However family members have distinct needs, separate and different from the family member who is using drugs and/or alcohol. There is evidence that support to family members improves their own outcomes, resulting in reduced physical and mental health symptoms, better coping mechanisms, and improved quality of life, leading to better outcomes for children in the family (Ref 2, Ref 3).
Families need support in their own right, and at times it may not be appropriate for them to support the family member with a problem, and two articles in this edition powerfully describe this issue. Vicky Brooks describes the specific needs of grandparents and Elizabeth Burton-Phillips champions the needs of families bereaved by addiction. We must not see family members simply as a means to improving the outcomes of drug and alcohol users, but as individuals with their own needs.
Despite the evidence of the benefits to supporting families in their own right, coverage of services is patchy. Perhaps as a result of this, many of the organisations offering support have been set up by families themselves, making it an incredibly positive community movement of people reaching out to support others who are having, or who have had, the same experiences. Two articles which strongly evidence this, are Gloria P's description of her experiences with Al-Anon, and Patricia Boydell's article which describes the important work of a family support group, Harbour.
It is important to be aware that substance using parents can present specific harms to their children (Ref 5), although substance use alone does not result in poor parenting. In this edition we have not gone into detail regarding issues around child protection (though we would advise readers to revisit Martin Weatherhead's excellent article on this subject (Ref 6)). However the effects of parental substance use on children, and approaches to working with children to build their resilience and improve their outcomes is thoughtfully covered in Jo-Anne Welsh's article.
There has been increasing emphasis on the needs of families of substance users, and the potential role they can play in improving treatment outcome in policy and guidance in recent years (Ref 7, Ref 8, Ref 9, Ref 10). However though there has been an increase in the numbers of services commissioned for families of drug and alcohol users, there remain geographical inconsistencies. Joss Smith outlines Adfam's five key challenges to delivering consistent levels of support to families of problem drug and alcohol users.
In the current climate it is increasingly important for services to prove that they are providing value for money and the National Treatment Agency (NTA) recognises that outcome measures for services for families are difficult to monitor. They suggest that outcome monitoring could include numbers in contact with services, repeat contacts and levels of service provided, self-reported measures of progress and data and targets relating to specific undersupported groups. Adfam's We Count Too (Ref 11) provide some useful quality standards for services providing support to family members for services and commissioners. Commissioners should also build families' needs into needs assessments, identify gaps in services, involve families in treatment planning, and ensure that the workforce is competent to work with the myriad of issues working with families can bring.
Services (including those that work with drug and alcohol users) often fail to assess and work effectively with families of substance users due to lack of knowledge, training and guidance. In order to address these barriers, adequate training must be put in place and Carole Sharma and Oliver Standing describe the latest developments in family services workforce development.
Many services treating drug and alcohol users also need a cultural shift to work with service users as family members, rather than as individuals with no family ties - one in three of the drug treatment population have a child living with them for some of the time. Services also need to work more closely with other agencies to improve the needs of all family members. Elsa Browne summarises the National Treatment Agency's approach to addressing these issues as outlined in their business plan, and there are examples of how services are meeting this challenge with the Family Intervention Project and the Family Drug and Alcohol Court Pilot.
Improving our services for families does not have to involve large structural changes. Sometimes it can simply mean changing our approach. John Westhead takes us through some of the basics to improve the service we provide, and Chris Ford is Dr Fixit to a GP who is supporting the mother of someone who is using crack. See our top tips for working with families.
We must not forget the important role primary care can play in supporting family members. Interventions can include harm reduction measures such as hepatitis and HIV screening and immunisation for hepatitis A and B. Primary care is increasingly playing a role in involving family members in preventing drug related deaths by being involved in programmes administering naloxone such as Samantha Perry and Carole Hunter describe. Primary care can also play an essential role in reproductive planning and sexual health, as Mary Hepburn argues. Finally, primary care is well placed to provide the setting for the multi disciplinary work that is needed in the often complex area of working with the families of drug and alcohol users.
It is essential for all primary care practitioners to be aware of the benefits of working effectively with the families of drug users, particularly as GPs become increasingly involved in commissioning services. Support services for the families of drug and alcohol users fulfil many of the coalition government's agenda including supporting a community approach, emphasising the families' role in society, and promoting the voluntary sector as a way forward in social care. In this period of austerity we must ensure that these services continue to prosper and grow.
1. Velleman R and Templeton L (2005) Alcohol Use and Misuse. In Ewles L (ed) Key Topics in Public Health. Oxford: Elsevier
2. Velleman R and Templeton L (2005) Drug Use and Misuse. In Ewles L (ed) Key Topics in Public Health. Oxford: Elsevier
3. Copello A, Velleman R and Templeton L (2005). Family Interventions in the Treatment of Alcohol and Drug Problems. Drug and Alcohol Review 24:369-385
4. Copello A, Velleman R and Templeton L (2005). Family Interventions in the Treatment of Alcohol and Drug Problems. Drug and Alcohol Review 24:369-385
5. Advisory Council on the Misuse of Drugs (2003) Hidden Harm: Responding to the needs of the children of problem drug users HMSO
7. Her Majesty's Government (2008) Drugs: protecting families and communities The 2008 drug strategy
8. National Treatment Agency (2006) Supporting and involving carers: A guide for commissioners and carers
9. Department of Health (England) and the devolved administrations(2007). Drug misuse and dependence: UK guidelines on clinical management. London: Department of Health, Scottish Government, Welsh Assembly Government and Northern Ireland Executive.
10. National Institute for Clinical Excellence (2007) Drug misuse: Psychosocial interventions Clinical guideline 51
11. Adfam, (2009) We Count Too Good Practice Guide and Quality Standards for work with family members affected by someone else's drug use, 2nd Edition
Al-Anon is a 12 step organisation which supports the families of people with alcohol problems. Gloria P tells her powerful story of how the organisation helped her. Ed.
When I was asked to write this article about 12 step/mutual aid recovery for families of addicts (and particularly alcoholics in my case) I started to think about what being involved in recovery has meant to me personally: it has changed my thinking and outlook on life completely and I would like to share my story with you.
I married my husband when I was 21. I knew he drank a little too much at times but I thought I could help him. Just months into our marriage he took an overdose of Heminevrin and cider. He was minutes away from dying before the ambulance arrived, which resulted in him being admitted to a psychiatric ward. His psychiatrist at the time advised me to look after myself and not my husband. It took another 13 years to actually do this.
My husband was a binge drinker which meant he could leave alcohol alone for weeks, sometimes even months on end. As a result however, I was always left feeling anxious, never knowing when the next episode of chaos was going to happen.
My behaviour eventually became extremely damaging. For example I would attempt to monitor what he drank, pour his drink down the sink, buy his drink for him (quantity control!) and even drink it with him. I thought that if I joined in there would be less for him to consume. Then violence entered our marriage. I have smashed bottles over his head and on one occasion I almost blinded him. I tried to suffocate him in his sleep and would often provoke him into hitting me so I could justify my actions and feelings. I almost lost my life on several occasions due to the situations we found ourselves in. I also did a lot of damage to my children due to my behaviour and them witnessing a lot of the madness.
Both my husband and I sought help from our GPs. I was given tranquillisers and antidepressants, my husband received more psychiatric input, electric shock treatment, Antabuse and various detoxes. None of which worked. After 13 years I knew I needed help other than medication and eventually called the Samaritans, who suggested I tried Al-Anon.
At the first meeting I went to I heard about step 1, that I was powerless over alcohol and that my life had become unmanageable. I recognised my powerlessness over alcohol, but it took me a lot longer to admit that my life was unmanageable, having expended so much energy for so long trying to control everything. I told my husband I was powerless over his drinking, as everything I had tried had failed. A week later he went to his first Alcoholics Anonymous (AA) meeting.
"There is a saying in Al-Anon that we (family) didn't cause alcoholism, we can't control it and we can't cure it"
I learned to let go of my husband and to allow him to face up to his own actions and the subsequent consequences. I "came to" and eventually I came to believe there was a power greater than myself looking after me. I struggled at first with the concept of God or higher power, as mentioned in the 12 steps, as I had no religious beliefs. I now understand and I think it is important to emphasise that 12 step programmes are a spiritual way of life, and not religious.
The family home quickly became a peaceful place to be as I had begun to look at my behaviour and take responsibility for my actions. There is a saying in Al-Anon that we (family) didn't cause alcoholism, we can't control it and we can't cure it. This takes the burden of feeling responsible for the alcoholic away from family members and allows them to get on with their lives.
After just 5 years in AA my husband died of cancer. I knew I had to keep going back to meetings to stay sane and it helped me cope with being a widow at 39 with two children of 15 and 12.
My life has changed beyond my wildest dreams for the better. I am not the same person I was when I walked through the doors of Al-Anon 27 years ago. I learned to change my attitudes and behaviour by looking at my own shortcomings and flaws, I have made amends to those people around me I have harmed, I keep an open mind, through personal inventory I can admit quite readily when I am wrong, I continue to develop my relationship with my higher power and practice the principles of 12 step recovery in all my affairs. I do all I can to help others who live or have lived with alcoholism.
I remember my GP telling me that the best thing I could do was leave my husband, but it's not as easy as that when you love an alcoholic. Despite his alcoholism he was a very caring, humorous, and what appeared to be a very laid back man. However, I now know that his laid back attitude was actually a front to hide fear and insecurity.
I am thankful that I married an alcoholic because otherwise I would not have embarked on the journey that has brought me the peace I have today.
Families Anonymous helpline 0845 1200 660, website www.famanon.org.uk.
Readers may find a new resource, "Drugs, Alcohol and Parenting" by Mary Glover useful. You can find out more at: www.exchangesupplies.org.
Are drug services missing an important opportunity to support drug using parents and their children? Mary Hepburn argues that we may be by failing to support women plan for healthy pregnancies. Ed.
Women with problem drug use have high risk pregnancies with increased mortality and morbidity among mothers and babies. Adverse outcomes include increased rates of prematurity, low birth weight and intrauterine growth restriction. The drugs used, whether prescribed or illicit, may cause neonatal withdrawal symptoms and the use of drugs and tobacco together with the disadvantaged backgrounds of the majority of female drug users increases the risk of sudden infant death. Furthermore poorly controlled drug use together with chaotic lifestyles can compromise parenting abilities and lead to adverse social outcomes.
Women with problem drug use often have unplanned but not necessarily unintended or unwanted pregnancies. However the timing of their pregnancies is often inappropriate. Addressing the problems related to drug use when a woman is already pregnant is stressful and the scope for improving outcomes is limited; many of the adverse medical and/or social outcomes of pregnancy experienced by drug using women could be avoided or minimised by appropriate planning and management of their drug use and related problems before conception.
The concept of pre-pregnancy counselling and treatment is not new. While it is envisaged as valuable for all women its routine introduction has proved impossible since many women have unplanned pregnancies and the scope for improved outcomes among low risk women is limited. However the benefits for women with major medical problems have been recognised for some conditions, for example the provision of pre-pregnancy advice to young diabetic women is now widespread. Recognition of the potential benefits of pre-pregnancy care is largely limited to women with medical conditions that can increase mortality and morbidity for the mother and/or baby. The potential benefits for women with problems caused or exacerbated by social circumstances that increase the risk of poor social outcomes is less widely recognised. The failure to provide pre-pregnancy care for women with problem drug use is one such striking example.
There is currently pressure to adopt increasingly hard-line approaches to management of drug using women who have children. There are some who argue that treatment of problem drug use is costly and unjustified and that those who use drugs should be able to "just say no". There is an even harsher public perception of drug using women who are widely perceived as irresponsible individuals who are unfit to have children. The underlying problems that lead to drug use are inadequately recognised and many drug using women lose custody of their children, often with justification but sometimes because there are inadequate services to support such women and help them develop adequate parenting skills.
"Disappointingly the opportunity to discuss reproductive plansÖ is often squandered and pregnancies occur to the surprise of both women and services!"
Given the adverse social outcomes and potentially long lasting effects on the children, it is sometimes argued that drug using women should not have children, the ultimate expression of this view manifest in the campaign offering women money in return for undergoing sterilisation. This view is not expressed with regard to other women with high risk pregnancies, even when lifestyle contributes to poor outcomes as in the case of obesity. Drug using women do not differ from other women in their aspirations to have children and it is important to recognise that many of the poor outcomes are caused by poverty directly or indirectly and are merely exacerbated by their drug use. Denying drug using women the right to have children is therefore simply punishing them for being disadvantaged! Management of women with high risk pregnancies should be similar whether the risk is of medical or social aetiology. The aim should be to address problems before conception and to help women to have pregnancies that are wanted, planned and timed to ensure optimal medical and social outcomes.
Provision of multiagency addictions care is now well established in the UK and primary care services have made and continue to make a major contribution in this field. While service content, design and delivery varies, it is now the case that a majority of women with problem drug use who attend for maternity care in the UK are already in contact with services, medical and/or social that provide addiction care. Disappointingly the opportunity to discuss reproductive plans afforded by this contact is often squandered and pregnancies occur to the surprise of both women and services! This is of particular concern given that any treatment of addiction whether pharmacological or psychosocial may increase fertility either directly or indirectly so, apart from the obvious social benefits, from a purely medico-legal point of view any addictions treatment should be accompanied by information and advice about contraception. While many addiction services now offer contraceptive advice this is often perceived as an optional extra aimed at pregnancy prevention rather than pregnancy deferment until relevant problems have been addressed.
Services working with drug using women should make reproductive healthcare, including both contraception and family planning, an integral part of the care provided to both drug using men and women but especially to women. In this vulnerable group of often hard to reach women this contact affords an opportunity to ensure cervical screening is up to date and to undertake screening for sexually transmitted infections as appropriate. As for all women, treatment with folic acid to reduce the risk of neural tube defects should be commenced 3 months prior to conception and continued until 12 weeks gestation. For drug using women contemplating pregnancy, stability of drug use is a priority. Opioid substitute medication where prescribed should be appropriate for pregnancy and both methadone and buprenorphine are acceptable although switching from Suboxone to buprenorphine would be advisable. The need to reduce and if possible stop using other drugs such as benzodiazepines and cocaine for which there are no safe and effective substitutes should also be discussed. The additional benefits of breast feeding for babies of drug using women should be explained and starting the dialogue before conception will improve breast feeding rates. The opportunity should also be taken to address social issues that could compromise parenting and lead to poor social outcomes.
Instead of trying to prevent drug using women from having children (which will be almost invariably unsuccessful) a more profitable approach would be to help women to address their problems, to explore their aspirations with regard to having children and to ensure any pregnancies they do have are intended and optimally timed for the best possible medical and social outcomes. Primary care services are ideally placed to play a leading role in this area with enormous potential for reducing the impact of problem drug use on the children of drug using mothers and reducing the intergenerational effects of health inequalities. It is an opportunity which should not be missed.
Patricia Boydell describes the important work of Harbour, a family support group. Ed.
Harbour Project is a voluntary organisation in Bolton, Lancashire which offers support to anyone who is concerned about another's substance misuse. Harbour began over 15 years ago when two mothers whose sons were using heroin couldn't find any help or support for themselves. They applied for financial help, obtained a room for meetings - and that was the beginning of Harbour. Over the years Harbour has grown, providing support and advice to many hundreds of families. We are currently funded by Bolton Adult Services. Referrals are received from local drug agencies, probation, FRANK, doctors, police, and others through word of mouth and personal recommendations.
What can Harbour offer?
The primary aim of Harbour is to support those who are affected by another's drug or alcohol misuse. Parents and carers need and are entitled to help in their own right - not as an appendage to the substance misusers' treatment, but simply because families are important and need to take care of themselves. Harbour provides a refuge where people can share experiences, get issues off their chests and discuss their problems with others who are experiencing similar emotions and difficulties. As well as providing in house drug awareness training we organise various self help courses and arrange holistic therapy sessions. We apply for a special grant to enable parents to take respite breaks such as a meal out or a theatre trip. We invite a variety of speakers to group meetings to talk about aspects of their work which may be useful to our members. We also keep up to date by undertaking relevant training and regularly attend conferences to meet with likeminded people and to share good practice. We have a newsletter and a seven day telephone helpline which is manned by a trained volunteer. Everything we undertake at Harbour is to help parents feel less stressed and to arm them with knowledge that will help them cope more easily with their situation.
"So much blame and guilt is attached to having a son or daughter who is using drugs"
Why do parents need support - what is happening in their lives?
When a parent first discovers their child is using drugs they often feel the worst possible thing has happened. They panic, deny it is happening, and get angry with the child and with themselves. They focus all their attention on the user. The health of a parent may suffer greatly with many experiencing stress related illnesses, anxiety and insomnia. They no longer socialise, they're not sure if friends understand, and they feel they can't trust others with their secret.
Parents feel guilty, ashamed, stigmatised, and isolated. So much blame and guilt is attached to having a son or daughter who is using drugs. Meanwhile, life can become a roller coaster with the substance user demanding money causing huge financial problems. Some parents spent thousands, because in their own way they are trying to keep the drug user out of trouble. But despite this many still get arrested for drug related crimes. A number of Harbour members have had a family member in prison and we have supported them through what can be a traumatic time especially when, on release, there is no accommodation for their family member and parents feel pressurised into accommodating them once more in the family home with all the problems that this can bring. Sometimes parents reach a state where they feel as though they can't bear any more but it is surprising how they do. They gain the ability to rationalise and tolerate things that were once unthinkable, widening goal posts to accommodate the user's increasing chaotic behaviour. These are just some of the emotions and problems parents face.
What are the benefits of belonging to a support group?
Most parents arrive at Harbour at the end of their tether. Some want a magic cure, but unfortunately there aren't any and becoming free from drugs or alcohol can be a long and complicated process. Harbour helps parents to recognise this and with support and encouragement helps them learn to live in a different way. Just knowing there is someone there who completely understands can be an enormous help, and parents learn and grow along side each other and no longer feel isolated. We never cast blame or judge but we do advocate setting clear boundaries, to try to refuse their family member's demands for money and encourage members to take more care of themselves. The problem may stay the same but parents learn better coping strategies and try to handle the situation in a more positive way, and as a result they become less stressed and more able to take control of their own lives. Another significant factor of belonging to a support group is the many special friendships that are forged within the group.
For the future, we hope that different agencies and organisations can work together to maximise their various skills and resources instead of working in semiisolation. We might then see a change for the better because all families really want is an end to their ongoing problems, hope for the future and the opportunity to live a more fulfilling life.
Many children of drug and alcohol users live with their grandparents. Vicky Brooks highlights the impact this can have on grandparents and the family as a whole. Ed.
Hidden Harm, a report into the needs of children of problematic drug users indicates that 200,000 to 300,000 children in England and Wales come from families where one or both parents have serious drug problems. Only 37% of fathers and 64% of mothers from these families are still living with their children (Ref 1).
It has been estimated that there are more than 200,000 family and friends carers (a carer who is either a family member or a friend) in the UK, most of whom are grandparents bringing up their grandchildren under formal (for example fostering) or informal arrangements, because the parents are no longer able to fulfil that role (Ref 2).
Grandparent carers face many complex difficulties in their lives, and typically place their own needs behind those of their grandchildren (and perhaps the substance using birth parent too). Practical difficulties include the financial cost of bringing up a child at a time when income is likely to be reduced (in retirement or due to the need to reduce the hours worked due to the carer role) and navigating through the legal processes involved in care proceedings. Specialist agencies such as the Family Rights Group and Grandparents Association can help by advising on these issues. Grandparents may experience housing issues - property is often too small, children share bedrooms and homelessness is common in the case of the drug user - and often have to fight for council accommodation.
Support networks are typically poor. Feelings of stigma and shame are associated with approaching others for support, and grandparents can feel uncomfortable around other parents, as they are often much older and feel stigmatised by the substance misuse. Their social life often diminishes as friends are unlikely to be in the same situation, and compared to their peers they have reduced energy levels, and reduced money for socialising at a time when their peers often have more.
Grandparents have to cope with the emotional issues of their grandchildren, such as a sense of rejection, abandonment and loss. Grandchildren are at a greater risk of problematic drug and alcohol use and of bullying at school and there is potential for negative impact on a child's educational attainment. There may also be issues of domestic violence. Grandparents experience uncertainty about how much the grandchildren know about the family situation, and face dilemmas over what children should and should not be told. Guilt may lead grandparents to overcompensate with grandchildren in an attempt to make up for their perceived failings as parents.
"Guilt may lead grandparents to overcompensate with grandchildren in an attempt to make up for their perceived failings as parents"
Families have to manage complex family dynamics and shifting family roles; grandparents become parents again, parents become children again, and grandchildren care for their drug using parent until they are placed under the care of the grandparent. Many grandparents are still heavily involved in supporting the user - and even when the user is absent, their use still impacts on the wider family. Conflict is common. For example siblings are sometimes resentful of the time, energy and attention given to the user and they may blame themselves. When there is substance misuse in a family relationships often break down, and people take sides. Grandparents often agonise over whether they are doing the right thing by caring for their grandchildren.
Grandparents' relationship with their birth children is often fraught with problems: the user may blame the grandparent and their upbringing for their use and the grandparent may feel exploited, conned and kept in the dark by the user. This may be compounded by a substance user's involvement in the criminal justice system, mental health difficulties, or involvement in sex work. There are often divided and changed loyalties for the grandparent; the priority that was once the child, changes to the grandchild.
There may be conflict with the parents or grandchildren over contact: grandchildren may not want to see their parent; parents may not want to see their children; parents may fail to turn up for arranged visits; parents may fight grandparents for custody; and there may be conflict due to grandchildren's desire for contact with parent/s when this is deemed unsafe by the grandparent.
There are increased physical demands when bringing up a child in later life and deteriorating health impacts on ability to care for grandchildren. There are risks to health from drug use and drug using behaviour, such as blood borne viruses and violence and some grandparents may even be disabled or raising a disabled child. Families experience worry over the practical implications of the grandparent dying or becoming unable to parent.
Experienced emotions (for example depression, stress, anxiety, worry, loneliness, desperation) may also be somatised.
As they are no longer a grandparent, but are now a parent again grandparents may also experience pain, loss and bereavement for their own hopes and expectations due to loss of retirement or career, and for hopes and expectations for dependents, whilst sometimes grieving for a child who died through substance use (and in some cases delaying or inhibiting the grieving process to care for grandchildren).
However, it is important to note that grandparents commonly feel a sense of pride in bringing up their grandchildren, are glad their grandchildren are loved and valued, that they can provide them with moral guidance, cultural connection and identity, security, love, routine, they consider themselves to be the next best thing to the birth parent(s), feel relief knowing grandchildren are safe, and have "fun" raising them.
For more information on the Adfam Grandparent Carers Project please visit the Adfam website.
1. Advisory Council on the Misuse of Drugs (2003), Hidden Harm, Responding to the needs of the children of problem drug users HMSO
2. Estimate from the Family Rights Group cited in Saunders and Selwyn (2008). Supporting Informal Kinship Care. Adoption and Fostering Journal, 32 (2): 31-42.
Practitioners can feel they lack the skills to work with families. John Westhead takes us through some of the basics to improve the service we provide. Ed.
When supporting those affected by other people's substance misuse, it is important to adopt a positive attitude, to recognise that they have considerable expertise in responding to their family member and that the actions of the family are seen as the best efforts to manage the situation (Ref 1). Recognise that families do not cause people to use, but that sometimes their attempts to deal with use by loved ones can compound the problem (Ref 2). Be clear about confidentiality with families (Ref 3) and remember that listening and advising families does not mean sharing confidential information about the individual user. Avoid any attempts to be drawn into taking sides or arbitrating within families (Ref 4). Remember that people around the user might also be drinking or using themselves and that they too will have a whole variety of attitudes towards substances.
From the perspective of those in the support network, they are often desperate for help and yet uncertain about how they should respond to the substance use. If they have known the person before they used they are often grieving for the person they knew. At the same time the person is still part of their life and the family often think they could "return" to them if they chose to stop using problematically. Using is often perceived as a personal rejection by those around the user, so anger is often mixed with sadness and hurt.
Professionals can perform a valuable task simply by listening, though "opening up" for family members can be difficult, especially if they have received unhelpful advice elsewhere. Once a clear understanding of the situation has been developed it might be appropriate to give information about effects of and treatments available for the user. When giving information elicit what they want to know, give relevant information, and then elicit how they might use this information (Ref 5).
Vellememan (Ref 4) describes three common responses to substance use in the family. The first is to engage the user in an attempt to deal with the problem often involving throwing alcohol away or using active attempts to prevent their use of drugs. This can give the family member a sense of doing something, but on the other hand may lead the user to become more secretive and to experience increasing resentment. The second response is to tolerate the drinking, but attempts to manage their use in such a way that reduces the social embarrassment, reduces the risk to the user and minimises the impact on the rest of the family. This might include buying the substance for them. Tolerating the drinking can be seen as pragmatic and a way of reducing arguments, but can also lead to resentment amongst family and friends as they come to feel they are being used to support the habit. The third strategy is to withdraw from the user to minimise the impact on their own life and allow the person to experience the negative consequences of their own behaviour. Withdrawing from the user can protect the family to some extent and may produce a positive reaction from the user, but it might instead increase the sense of abandonment by the user, and make it more difficult to resume family roles on stopping use, as the family has learnt to function without them.
Support networks might try all three strategies over time and an opportunity to examine the pros and cons of each approach might provide a valuable chance to think through some of the conflicts for the family member. A shift in strategies might not be easy for a person as their existing approach might be supported by much wider beliefs about family relationships, their culture, their own self-esteem and their assertiveness skills.
Many treatment approaches focus around encouraging the family to communicate clearly and positively and actively coach the family in the use of clear communication skills such as listening to each other, making positive requests, problem solving and expressing feelings in a non-confronting way (Ref 1, Ref 4, Ref 6). When used well, these communication skills can reduce the stress levels in the family, thereby reducing the likelihood of relapse.
Both users and their social networks can be helped by identifying and utilising other people who can support them. This might mean contacting both old and new supports and sometimes professionals can enhance this by discussing who might be helpful and how best to contact them (Ref 7, Ref 8). Remember that Al-Anon, Families Anonymous and Adfam offer valuable support to many families, and that Alcoholic Anonymous and Narcotics Anonymous offer a useful support, especially if the user lacks any non-drinking social contacts. Involving social networks has also been found to increase the success of substance misuse treatment, by helping families support treatment goals, involving families in relapse prevention work and making abstinence more rewarding (Ref 6, Ref 9).
1. Falloon, I. R. H., Fadden, G. Mueser, K. Gingerich, S., Rappaport, S., McGill, C., Graham-Hole, V. and Gair, F. (2004) Meriden Family Work Manual (3rd Ed.) Birmingham, Meriden West Midlands Family Programme
2. Copello, A. ,Orford, J., Velleman, R.,Templeton, L ., Krishnan, M. (2000). Methods for reducing alcohol and drug related family harm in non-specialist settings. Journal of Mental Health, 9: 3 329-343
3. O'Farrell, T. J. and Fals-Stewart, W. (2006) Behavioural Couples Therapy for Alcoholism and Drug Abuse, London, The Guildford Press
4. Velleman, R. (2001) Counselling for Alcohol Problems (Chap 10), London, Sage
5. Rollnick, S., Miller, W.R. and Butler, C. (2008) Motivational Interviewing in Health Care: Helping Patients Change Behaviour, London, The Guildford Press
6. Copello, A., & Orford, J. (2002). Alcohol and the family: Is it time for services to take notice of the evidence? [Editorial], Addiction, 97, 1361-1363
7. Graham H. L. (2004) Cognitive-Behavioural Integrated Treatment, (C-BIT) A Treatment Manual for People with Severe Mental Health Problems, Chichester, John Wiley and Sons, Ltd.
8. Orford, J., Hodgson, R., Tober, G., Barrett, C.(2002) Social Behaviour and Network Therapy: Basic Principles and Early Experiences, Addictive Behaviours, 27 345 -366
9. Miller, W.R., Meyers, R.J. and Hiller-Sturmhofel, S. (1999) The Community Reinforcement Approach, Alcohol Research and Health, 23 (2) 116-120
Can We Reduce Drug Related Deaths in Scotland?
A Glasgow initiative which involves families and friends
Samantha Perry and Carole Hunter describe how the families, friends and carers of drug users can play a crucial role in preventing drug related deaths by being involved in a programme that includes administering naloxone. Ed.
Drug related deaths have generally been on an upward trend across Scotland in the past 20 years as heroin use has become more widespread. In recent years Greater Glasgow and Clyde has consistently accounted for around 30% of these deaths, 326 deaths over a three year period from 2005 to 2007 (Ref 1). The majority of deaths involved a combination of drugs with heroin, benzodiazepines, methadone and alcohol being most commonly detected at postmortem (Ref 2) (see Chart 1).
Chart 1: Main drugs involved in drug related deaths Greater Glasgow 2003-2005
(General Records Office Scotland [GROS] 2006)
The principal cause of death following an opiate overdose is respiratory depression culminating in respiratory arrest and death. This is exacerbated if other respiratory depressants such as alcohol and benzodiazepines have also been taken.
A high proportion of overdose events take place in a home setting and are often witnessed by other drug users, their friends and family members (Ref 3). In the majority of cases people who witness an overdose are willing to intervene (Chart 2) as opposed to the popular myth that overdose victims are left to their fate. However many of the interventions are inappropriate and contact with the emergency services is often delayed for a variety of reasons, including fear of police involvement (Ref 3).
Chart 2: Actions taken during an overdose (Ref 3)
- 44% CPR
- 6% Recovery position
- 21% Inflict pain, cold shower, cold water
- 38% No intervention attempted
- 82% Ambulance called
- 81% Dead on ambulance arrival
Naloxone is a competitive antagonist for the mu opiate receptor and can temporarily reverse respiratory depression during an opiate overdose. It is effective when given by the intramuscular, intranasal, intravenous and subcutaneous routes. It has been used by health care professionals in both pre-hospital and hospital settings to reverse the effects of both accidental and iatrogenic opiate overdoses for years (Ref 4).
In 2005 a change in section 7 of the Medicines Act 1968 reclassified naloxone to a medicine which could be administered by any person in the event of an emergency to save life. The Advisory Council on the Misuse of Drugs report on drug related deaths was of the view that as a matter of principle naloxone should be made more widely available to drug users but careful consideration should also be given to prevention, first-aid and resuscitation (Ref 5). Research in Europe and North America also supports the rationale for the supply of naloxone as a means to reduce drug related deaths (Ref 6, Ref 7).
A multidisciplinary working group was set up in Glasgow in 2006 to explore how naloxone could be made available to the drug using community and their friends and families. The group's work involved the development of a robust training programme, which could be delivered in less then 2 hours, together with supporting literature, and the development of a Patient Group Direction to allow nursing and pharmacy professionals to supply naloxone. In summary the aims of the Glasgow naloxone programme are not to merely supply naloxone but also to give comprehensive advice on minimising the likelihood of an overdose occurring and to recognise an overdose state when it occurs. Participants are also taught how to manage and assess an unconscious person, perform basic life support, inject naloxone safely and place the unconscious person in the recovery position. Emphasis is given throughout the programme to the vital importance of calling the emergency services as soon as possible.
The budget for the initial pilot of 300 naloxone supplies was approximately £12,000, and did not include evaluation of the programme. Maximum use was made of existing resources. The programme became affiliated to Heartstart, who supplied initial resuscitation equipment and permitted the issue of a recognised qualification to participants. Evaluation of the pilot phase was conducted by the Scottish Drugs Forum and was very positive (Ref 8). Since the programme's beginning in 2008 over 100 instructors have been trained and 800 drug users have successfully completed the training. There have been 33 reported appropriate uses of naloxone with no reported adverse outcomes.
Training sessions were initially confined to the Glasgow Drugs Crisis centre but are now rolling out across NHS Greater Glasgow and Clyde to addiction services, homeless services and other voluntary agencies in contact with drug users. The aim is to reach more at risk individuals and to make the training sessions and naloxone supplies available locally.
Critics of the programme claim that providing naloxone may lead to more risky drug taking. Evidence from research does not support this and may even indicate a positive effect, with increased entry into treatment and contact with harm reduction agencies for drug users (Ref 9). Naloxone is a drug of low toxicity (Ref 10) and its main adverse effect is to precipitate acute withdrawal. There have been adverse reactions reported in world literature, but most of these are minor and were thought to be related to the effects of hypoxia and acute opiate withdrawal (Ref 11, Ref 12).
It is too early to conclude that naloxone has impacted on drug related deaths in Glasgow and with an estimated excess of 12,000 problematic drug users in the city it is very much a work in progress. All of those involved in the programme are confident however that the supply of naloxone with overdose awareness and resuscitation training can only have a positive effect on drug related deaths in the city.
Samantha Perry FRCP FCEM, Consultant, Emergency Medicine Glasgow and Carole Hunter, BSc (Hons),BA, MSc, MRPharmS Lead Pharmacist Greater Glasgow & Clyde Addiction Service
1. General Records Office Scotland (2008) Drug related deaths in Scotland 2007.
2. General Records Office Scotland (2006) Drug related deaths in Scotland 2005
3. Scottish Executive (2005) National Investigation into Drug Related Deaths in Scotland 2003
4. Dollery C (Ed) (1991) Therapeutic Drugs. Edinburgh: Churchill Livingstone
5. Advisory Council on the Misuse of Drugs. (2000) Reducing Drug Related Deaths. London:HMSO,2000;80-1.
6. Dettmer K, Saunders S, Strang J. (2001) Take home naloxone and the prevention of deaths from opiate overdose: two pilot schemes. BMJ 2001;332:895-896.
7. Maxwell S, Bigg D, Stanczykiewicz K, Carlberg-Racich (2006) Prescribing naloxone to actively injecting heroin users: a program to reduce heroin overdose deaths. J Addict Dis 2006;25:89-96
9. Join Together (2005, 4th November) Harm reduction cuts OD deaths in San Francisco:
11. Yealy DM, Paris PM, Kaplan RM, Heller MB, Marini SE (1990). The safety of prehospital naloxone administration by paramedics. Ann Emerg Med. 1990;19 (8):902
12. I, Naess AC, Jacobsen D Bros O (2004) Adverse events after naloxone treatment of episodes of suspected acute opiod overdose. Buajordet Eur J Emerg Med. 2004;11 (1):19-23
Adfam outline the five key challenges to delivering support to families of problem drug and alcohol users. Ed.
Adfam engaged key partners across the country and held 9 regional consultations from October to December 2009. Representatives from across the partnerships attended and audiences included family support providers, drug and alcohol professionals, commissioners, children's services representatives, criminal justice workers and healthcare professionals. The strong common themes from these consultations form the basis for five key challenges affecting the delivery of family support.
Challenge 1 - Supporting families in their own right
Where family support is provided and accessed, families report significant benefits and improvements in their well being and that of the drug or alcohol user. Unfortunately there still remain many local areas where there is no support for families in their own right.
Challenge 2 - Involving families in treatment
There remains limited guidance and support for practitioners on how best to engage families safely and appropriately. Not all families are supportive or are appropriate to be involved in someone's treatment and practitioners need to be skilled in how to deal with this. We need to encourage a common sense application of confidentiality that respects the service user and the family.
Substance use doesn't happen in a vacuum and for a long time treatment services have worked solely with the substance user. It was expressed that there needs to be a culture shift to focus beyond the substance user and to look to the wider context. It was felt that for this culture shift to work there had to be full strategic support at all levels.
Challenge 3 - Monitoring effectiveness
It is important to be able to monitor the effectiveness of family support and ensure consistency of delivery across all areas and to consider that in some ways family support currently has the opportunity to be innovative and responsive without being constrained by overall arduous administration systems. It was felt that what is needed is a balanced approach to implementation of any system.
Challenge 4 - Public services thinking family
Public services play a key role in engaging and supporting families and it is essential that those services are aware of the needs of families. Family members often comment that their GP is the common point of access for support and sometimes they feel their needs have not been recognised. All public services have a responsibility to look beyond the patient's presenting problems and be aware of the impact of a loved one's drug or alcohol use, especially when treating children. There is currently a lack of consistency in practice, with some examples of families' needs being dismissed.
Challenge 5 - Commissioning effectively
Historically family support has been poorly funded and is either provided through community or individual goodwill or sporadically offered surpluses at the end of funding cycles. This inevitably leads to, in some areas, no provision or where it is provided, an insecurity which means it is a continual struggle to meet the need and develop further.
We would ask that commissioning processes reflect the broad functions and agendas that the provision of family support can meet. Housing, drugs and alcohol, health, crime - these agendas need to be considered when assessing the needs of communities and pulled together to form a coherent strategy.
We must ensure that family support remains a long term objective and becomes embedded within longer term provision and not an added extra to current service delivery. It is clear that the new government intends to continue to work with the needs of families. One of their key principles in the coalition agreement highlights the needs of families with multiple problems and the development of the Children and Families Taskforce. However the task remains for those who come into contact with these families to recognise their needs and concerns and work to improve their quality of life.
Elizabeth Burton-Phillips highlights the difficulties faced by families bereaved by addiction, and how to support them. Ed.
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 prewarned 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.
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 2010.
Is it possible for public sector organisations to have a family centred approach? Phil Merrick, Debbie Lloyd, Barbara Jones, describe how Telford and Wrekin's Family Intervention Project is meeting this challenge. Ed. For the full article see our Other Resources section.
Partnership working is pivotal to the strategic direction of Think Family, a cross departmental programme run by the previous government which has encouraged the formation of Family Intervention Projects (FIP) and a team around the family approach. In Telford & Wrekin FIP works due to the marrying of Children and Adult Services - FIP has a Substance Misuse Worker and Mental Health Workers to assess, offer interventions and provide a bridge to mainstream services. Telford & Wrekin has four FIPs:
- Youth Crime Action Plan
- Housing Challenge Anti Social Behaviour
- Women Offender
- Children In Care - returning home
A family with multiple problems will typically cross services ranging from universal to targeted. They are responsible for a disproportionate amount of time and effort required from public services such as police, schools, social care, and health due to issues such as offending, anti social behaviour, domestic violence, truancy, and poor parenting. FIP works with the consent of the family; it is voluntary. The following are believed to be key to ensuring its success:
Whole family working whole family as well as individual assessment of need, family agreements/contracts to secure commitment to change and a team around the family approach to multi professional working
Family key-workers with the skills to work in a respectful but persistent way with families and small and protected caseload (6 families per 12 months)
Assertive support and sanction approach using appropriate sanctions/legal measures as a form of behaviour management control that will harness support and ensure positive lifestyle changes.
Alongside a variety of backgrounds (police, housing, children's services) with relationships to partner agencies, the approach is one of working with families where they are and working with family need proactively, persistently and truthfully. Family need is met promptly with the aim of the family becoming independent of statutory intervention - we focus very much on capabilities of families whilst recognising and addressing needs. The approach is one of family need, not of professional or service alignment. FIP Workers support families flexibly using their 37 hour employment time to deliver support over 7 days a week to meet the needs of the family, often seeing the family several sessions per week.
What we need to work on
FIP is a pilot project and is providing learning for family work. It has been fully operational for four months now and we're looking at how we can mainstream our support for families with partner agencies. We have drawn up protocols for working with both Adult and Children Services - our challenges are around organisational silos and supporting those with statutory responsibilities to think family.
Is it possible for public sector organisations to have a family centred approach? Sophie Kershaw describes how a Family Drug and Alcohol Court pilot in London is pioneering a new way of working with offenders. Ed. For the full article see our Other Resources section.
The Family Drug and Alcohol Court (FDAC) is based on a model widely used in the US for the last 12 years. An American evaluation found outcomes were better for families attending specialist drug and alcohol courts; more children were reunited with their parents and quicker decisions were made for out of home care if reunification was not possible. The results were attributed to the fact that more parents took up and completed substance misuse treatments than in traditional courts and services.
District Judge Nick Crichton, in collaboration with the Local Authorities Camden, Islington and Westminster, found funding to set up a three-year pilot. The pilot's funding came from the Department of Children Schools and Families, the Ministry of Justice, the Home Office and the participating councils. The government recently announced that it is extending the pilot's funding until April 2012 as they are impressed with the innovative work we are doing.
How does FDAC work?
FDAC offers parents with substance misusing problems:
- Help to stabilise or stop using drugs/alcohol;
- intensive assessment and support from the specialist team;
- quicker access to community services;
- better coordination between child and adult services;
- help from "parent mentors";
- a problem solving court.
The pilot court is supported by a multi-disciplinary team (the FDAC team) which includes professionals from social work, nursing, substance misuse and psychiatry. This is provided by the Tavistock and Portman NHS Foundation Trust and the charity Coram, who coordinate the process and intervention plans.
The parent mentor is an innovation of the FDAC. Parent mentors give the families support, encouragement and advice. They are not trained professionals - just people who've been through similar experiences. They can share invaluable informal and practical support. They will understand the issues the families are facing and have a good knowledge of the treatment services, the court and social services.
Strengths of the FDAC model
The FDAC team believe that the strength of their model is that it emphasises the parent's strengths. They believe that, with the right support, provided quickly and effectively, parents can change their substance misuse. The combination of the court, the specialist team and the parent mentors motivates parents to address their difficulties in the timescales of the child.
If you are interested to find out more about FDAC log onto the Tavistock and Portman website.
...And for the Research reports go to: www.brunel.ac.uk
Jo-Anne Welsh outlines the effects of parental substance use on children, and approaches to working with children to build their resilience and improve their outcomes. Ed.
Brighton Oasis Project (BOP) is a womenonly drug treatment provider. Since its inception over 13 years ago it has recognised the need to provide child care to allow women to access treatment and has met this need with provision of a créche. This placed BOP in a position to observe the effects of problematic parental drug and alcohol use on children. In response to the need these children presented with, a therapeutic service for children affected by familial substance misuse, Young Oasis, was developed. There has been a growing body of knowledge identifying the potential harm of parental substance misuse on children and highlighting the role of adult treatment providers in safeguarding. However the focus on recognising children's needs does not often extend beyond meeting child protection responsibilities. Hidden Harm (Ref 1) notes that despite the fact that most children of problem drug users do not meet the threshold for compulsory social services intervention, their experiences are characterised by a "pernicious lack of attention, care and interest that undermines these children's wellbeing and development."
Estimates of the extent to which parental substance misuse is a factor in child protection varies but a figure of around 70% is generally accepted. It is also important to consider the impact of problem substance misuse by other family members including siblings, parents' new partners and other members of the extended family. Young Oasis works with children both in the community and on a one-to-one basis from the projects' premises to strengthen their resilience. Resilience in this context indicates a process or characteristic that improves the chances of a child bouncing back even when the odds are stacked against them (Ref 2).
So how does parental substance misuse impact on children's emotional wellbeing? Many parents believe they protect their children from the knowledge they use drugs by avoiding obvious use in their presence. In reality, children will often be aware that there is a problem with substance misuse in the family and the parent's desire to protect them from this can add to the burden the child carries; children can perceive at an early age that their family has a secret that is not to be shared (Ref 3). This secrecy can add to the child's problems as it makes it impossible to discuss their fears and concerns.
"children will often be aware that there is a problem with substance misuse in the family and the parent's desire to protect them from this can add to the burden the child carries"
At an early age children become aware of the potential involvement of the authorities, in particular social services. For some who have already experienced the impact of formal child protection procedures they may be particularly conscious not to disclose information that could result in their removal from the family home. One 8-year-old attending Young Oasis disclosed in her therapeutic sessions that she was lying awake at night worrying about her mum overdosing. In the following week's session she immediately stated "mums not doing that stuff anymore". This sums up powerfully the child's need to share their concerns but at the same time protect and care for their substance misusing parent. Young Oasis works with children and young people to find a language for their emotions. Giving children a voice is the beginning of the therapeutic process. Interventions that bolster a child's ability to recognise and name feelings, as well as to express them and ask for help, will enhance their resilience.
Much of the focus on the impact of parental substance use on children is based on concerns around attachment. Parents' function as an attachment figure has been described as protecting and comforting when children cannot do so for themselves (Ref 4). If their carers are impaired by substance misuse, there is a risk that a child's ability to form secure attachments could be damaged, and that could have long-term effects on their emotional health. When discussing their parents, some of the children at the project have spoken of "talking to a wall" or "not knowing what mood they're in". A parent's emotional unavailability, whether they are unwell, pre-occupied, on medication, or using or withdrawing from drugs or alcohol, can adversely affect a child's identity, selfesteem and ability to form attachments. Within the therapeutic relationship they may experience acknowledgement of their achievements, fostering of interests, the holding of boundaries, be shown self regulating techniques and be encouraged to ask for support when needed.
Young Oasis offers weekly one-to-one sessions for 5-18 year olds affected by familial substance misuse, in the first instance for a period of 16 weeks. However, we are conscious that many children are cared for by adults who find attending regular appointments difficult, and for this reason the service has much more flexibility than might be provide in adult therapeutic services. One of the therapies offered is integrative arts psychotherapy; this provides a confidential space for a child to explore difficult feelings alongside a therapist using the arts including clay, sand tray, puppets, image, metaphor, and music. Often children coming from a culture of collusion and secrecy have never told their story and they are confused. Integrative arts psychotherapy helps children to find a language for their emotions.
We have identified ways of working with children in schools and youth centres. In the past year we have worked with children aged 11-13 using a drama therapy approach. Far from the problem of parental substance misuse being hidden, the school could easily identify children affected by this issue. Parental substance misuse can affect children's education and performance. Problems include poor concentration as thoughts are frequently dominated by anxiety and worry about their parents. Children are often required to take on levels of responsibility inappropriate for their age and this can result in poor attendance and a general loss of the spontaneity and freedom associated with childhood. Working within a school setting has been an excellent way to access groups of children who may never have had the support and resources to attend regular appointments. Peer support has reduced the children's isolation. Feedback from the school has also indicated that after attending the group children were much more willing to approach a teacher to discuss their fears and ask for support.
The needs of children of substance misusing parents has quite rightly received greater attention in recent years. However, aside from child protection services, there has been patchy development and investment in services for the children of substance users. It is our experience at Young Oasis that the provision of relatively low cost interventions can greatly enhance a child's chances of achieving better outcomes. The therapeutic relationship can provide the child with encouragement, much needed attention, consistency, a sense of stability and the tools to develop meaningful relationships in future. Having the opportunity to find out about how other people respond to them and to explore their interests and skills safely are all important in forming a sense of identity.
Children who are able to see themselves as separate from their families' problems, rather than part of them are likely to have better outcomes. Helping them to make sense of where they have come from, mapping out a career, and exploring choices and different options can support this. If they are able to imagine plans for their future, they are likely to do well - with and without the rest of their family.
1. Advisory Council on the Misuse of Drugs (2003), Hidden Harm, Responding to the needs of the children of problem drug users HMSO
2. Auman, K and Hart, A (2009) Helping Children with Complex Needs Bounce Back: Resilient Therapy for Parents and Professionals London
3. Barnard, M and Barlow, J (2003) Discovering Parental Drug Dependence: Silence and Disclosure Children and Society Volume 17 ( 2003) pgs 45-56
4. McKinsey Crittenden, P (2008) Raising Parents Attachment, Parenting and Safety Willan Publishing
Elsa Browne outlines the National Treatment Agency's approach to families in their business plan. Ed.
Substance misuse by parents is a risk factor to children fulfilling their potential - particularly in terms of educational achievement - and is a frequent source of referral for child protection. On the other hand, having children is a motivating factor for adults who are experiencing problems with their drug and alcohol use to seek treatment, and having a parent in treatment is a protective factor for children. Parents do as well, or better, than the general treatment population.
The National Treatment Agency's (NTA) updated business plan for 2010/11 (Ref 1) puts adult drug and/or alcohol users in the context of being part of a family, rather than as single individuals with no support or responsibilities. One in three of the treatment population have a child living with them for some of the time; more are parents but do not necessarily live with their children. Clearly, the adult drug treatment workforce is already working with this group. Adult substance misuse services and children/family services need to collaborate with each other on a range of interventions - from identifying need, through to assessment, referral, support and treatment progress - with the aim of improving the outcomes for families and children.
The NTA are working with the Department for Education (DfE) on this significant piece of work by mutually funding posts and sharing work programmes. Joint guidance was issued last year to encourage the development of local protocols between drug treatment and children/family services. An audit was undertaken recently which revealed that of those that responded, 38 (26%) of partnerships already had protocols for working together in place, and another 66 (44%) are expected have systems for joint working in place by the end of this year. In addition, a number of areas have operational agreements.
Regional NTA teams are involved in assisting with the acceleration of this process, including the assurance of quality provision, by identifying examples of good practice and making these available.
A cultural shift, currently in progress, will reorientate services to have a strong focus on the whole family, rather than a focus only on treating individuals. The NTA and DfE are working together and provide strategic leadership to collaborations between drug treatment and family work, with a view to embedding a whole family approach within systems. The NTA has provided evidence to the Munro Review (Ref 2) which will publish its report in April 2011 and has as a key objective the removal of bureaucracy from social work practice and will also consider effective and co-operative ways of working with other professionals. Safeguarding and family interventions will be embedded in the revised Models of Care for the Treatment of Adult Drug Users document.
Support will be provided for partnerships in determining local priorities for drug misusing parents, and opportunities for developing the skills and confidence of the drug treatment workforce will be maximised. The NTA business plan's ambition for this area of work acknowledges the coalition government's agreement to develop a new approach to families with multiple problems (including substance misuse) and to strengthen families and protect children by ensuring that people who come into contact with the treatment system benefit from a whole family approach.
We have summarised points of policy and practice to outline some top tips when working with the families of drug and alcohol users:
- Think family! If a patient presents with low mood, stress, or poor sleep, ask not only about their drug and alcohol use but about that of other members of their family.
- Provide advice on the impact of substance misuse on families to patients, if they are a substance user, or a family member.
- Assess the family member in their own right - how is the substance use impacting on them? Explore and promote problem solving. Remember to assess their own substance use.
- Remember that family members' needs will be distinct, and may conflict with the substance user's needs.
- Be careful not to breach confidentiality.
- Remember that the family member may not want to support the person using substances, and may not be in contact with them.
- When working with drug users, remember to discuss reproductive planning.
- Avoid taking sides.
- Provide information about self-help and support groups in your area for families and carers.
- For those with family members in treatment, provide information about treatment and the settings in which it may take place.
- Where possible and appropriate, involve family members in the treatment of drug and alcohol users. Make your service as family friendly as possible.
- Remember harm reduction. Give families advice about overdose, hepatitis and HIV transmission, and hepatitis A and B vaccination. Advise them of local naloxone schemes where they exist.
- When working with a drug user, consider behavioural couples therapy - NICE recommends this should be considered for people who are in close contact with a non-drug-misusing partner and who present for treatment of stimulant or opioid misuse (Ref 1).
- Consider whether a carer might be eligible for more structured support. Under the Carers and Disabled Children Act 2000, all carers who provide "regular and substantial care" are entitled to receive a local authority carer assessment, which should lead to a care plan and possibly access to relevant support and funding where carers meet the Fair Access to Care criteria. Some carers of people who have refused help will be eligible for an assessment. Carers also do not have to ask for an assessment; they have the right to be offered it by local services.
- If services for families are patchy in your area, campaign to improve them!
- Remember that families have the strength and expertise to deal with many of their problems but sometimes need help to recognise it!
1. National Institute for Clinical Excellence (2007) Drug misuse: Psychosocial interventions Clinical guideline 51
FDAP and Adfam keep us up to date with the latest in family services workforce development. Ed.
Four national charities - Adfam, The Alliance, DrugScope and EATA - have formed the Drug Sector Partnership to support community and voluntary sector organisations working in the drug and alcohol sector. The Drug Sector Partnership has Department of Health funding for three years.
Adfam is carrying out the Partnership's workforce development project. Oliver Standing of Adfam is working with Carole Sharma of Federation of Drug and Alcohol Professionals. Together we are looking at ways to support the development of a competent and trained family support workforce in the drug and alcohol sector. Phase one ran from January - August 2010 and was concerned with: a policy review of available literature; a review of relevant National Occupational Standards; a review of relevant qualifications (both at National Vocational Qualification [NVQ] and degree level); a review of role profiles from the sector; an online questionnaire; and consultations with practitioners and service-managers. Using the evidence gathered in phase one, role profiles based on National Occupational Standards (NOS) were developed for practitioners working with families affected by drugs and alcohol and a drug and alcohol worker working with families. These will be used as the basis for the second phase on the project. Of the family support organisations surveyed:
- 43% had 5 or less members of staff
- 44% of staff were full-time employees, 25% volunteer and 22% part-time
- 62% identified as voluntary sector organisations, 26% as statutory and 12% as private
- 33% of staff were educated to NVQ level, 21% to diploma level, 16% to degree level and 3% of staff had no qualifications.
Phase two will use the evidence from Phase one and look at developing a qualification and accreditation scheme for family support workers. We will use the role profiles developed in phase one when meeting with awarding bodies to make the case for a new qualification mapped against NOS. We will also look into the possibility of developing an accreditation scheme for family workers to receive accreditation in return for demonstrating competency and subscribing to a professional code of behaviour.
If you would like to know more about the project please email Oliver Standing or phone 0207 553 7656.
Chris Ford is Dr Fixit to a GP who is supporting the mother of someone who is using crack. Ed.
Dear Dr Fixit, I wonder if I could ask for your help with a patient of mine? Susan McDonald is 46 years old and has recently become a frequent attendee at the surgery, usually with low grade stress and chronic chest problems. She smokes between 20 and 30 cigarettes per day and says she is unable to stop because she feels it helps her with her stress, which is mainly to do with her son, Michael, aged 22 years who lives at home. Until recently he was paying his way but lost his job about 3 months ago due to absenteeism. Since then he sits at home and spends most of his time smoking crack. He keeps saying he will get another job and hasn't started to claim benefits. Susan works in a supermarket and doesn't earn well but she tells me that if she doesn't pay for his drugs, Michael goes out to steal to pay for his habit and she is terrified he will end up in prison.
Susan tells me that she has encouraged Michael to get help; twice she has even taken him to a local drug service but he hasn't engaged. I know the boy's father was alcohol dependent and had left the family when the boys were young. Susan blames herself and feels Michael's problems are a result of his childhood. She is torn as to what to do, especially in terms of money, but she knows that "enabling" him to use crack is also not the answer. Susan keeps coming back and I feel at a loss as to how to help her and whether I can get Michael into treatment - can you help?
Firstly I must congratulate you on your care of Susan so far. You obviously have a good relationship with her and she is getting invaluable support from you. As I am sure you are aware, addiction of all sorts is a family disease. When one or more members of a family are using substances or being troubled by another addiction, the whole family is affected. GPs are uniquely placed to manage individual addictions of family members, but as is common, Michael doesn't want our help at the moment and we can do no more than continue to offer to support him. But we can support the family, as you are doing in Susan's case. As Adfam's Manifesto for Families states, families need support in their own right (Ref 1).
"In primary care we are ideally placed to support the whole family as it is common that most family members are registered with the same practice"
The Drug Policy Commission suggest that at least 1.5 million adults are affected by someone else's drug use (Ref 2) while Velleman and Templeton (Ref 3) report there could be up to 8 million affected by someone else's drug or alcohol use. Addiction in the family can have serious negative consequences on the family including social, financial, mental and physical health problems. The family becomes dysfunctional and can stop being a working unit and move towards chaos or crisis.
Degrees of co-dependency, which are unhealthy patterns of relating between the problem substance user and their family member/s, and a lack of intimacy in relationships can develop. Co-dependents may develop compulsions of their own. Family members such as Susan develop compulsive behaviour, perhaps smoking in her case, in order to cope and survive in a family experiencing such pain. Families can also set up a pattern of denial, refusing to accept that an alcohol or drug problem is developing and/or to acknowledge the extent of that problem. In trying to help, family members, just as Susan is doing, try to "support" but actually "enable" substance use, making it easier for the substance user to continue with their disease. Many of us may choose to think we are helping by providing money to a loved one for drugs but by doing this we are enabling and the user can then avoid the consequences of their actions. Michael can continue his drug use, secure in the knowledge that Susan will always be there to rescue him from his mistakes. Enabling is not helping: it is doing something for someone that they could, and should be doing themselves. I think the key in this situation is to support Susan to care for herself. Support her to decline further hand-outs to Michael and to consider that he leaves the home until he is in control of his drug use. Susan will need your ongoing encouragement to do this and may need additional help.
Treatment for people who have drug problems has improved in recent years and services have begun to recognise the importance of family, particularly in policy (Ref 4) but often people who use are still seen as a "drug user" in isolation and there is still a lack of interventions and support for families. We are very fortunate to have an excellent family therapy service nearby but this is not available in all areas. There are also groups such as the 12-step Families Anonymous and other family self-help groups, which Susan could use. Find out what is available to your area. We know where family support is used, families experience significant improvements in their wellbeing and of the person who is using.
Some family members don't want to use these services, often because they don't recognise their own needs and because of their own feelings of shame and social stigma but encourage Susan to do so and explain that most of the people using the groups will have similar feelings. If she still declines, continue to see her and allow her to work through these feelings. In primary care we are ideally placed to support the whole family as it is common that most family members are registered with the same practice. We need to use our everyday skills: listen, support and ask for help when we need it. Families' responses to problem substance use can be remarkably similar and by supporting them to see addiction as a family illness and to explore possible avenues of help, we can guide them to take an enormous first step to improve their situation.
Encourage Susan to see that the best way to support Michael is by giving him clear boundaries and a firm recommendation that he finds his own flat. Support her to be able move forward for herself and continue to love, yet not enable, her son. From my experience in families such as the McDonalds, Michael will come and ask you for help and I know you are well equipped to do that!
1. Adfam's manifesto for families 5 key challenges for supporting families affected by drugs and alcohol use Adfam 2010
3. Velleman R & Templeton L (2007) Substance misuse by children and young people: the role of the family and implications for intervention and prevention. Current Paediatrics 17 (1); 25-30
4. HM Government (2008) Drugs: protecting families and communities The 2008 Drug Strategy
DrugScope Annual Conference 2010 - Facing the Future
Date: 3 November 2010
Addiction: The Case for Recovery in a Changing World
Date: 17 November 2010
RCGP 16th National Conference - The public health agenda: making patient centred care the imperative
Date: 12-13 May 2011
Adfam's Carol Concert
Venue: St Bride's Church, Fleet Street
Date: Thursday 9 December 2010, 6.45pm
Please contact firstname.lastname@example.org for tickets, or call 020 7553 7640
Network Production Group
Dr Chris Ford (Clinical Director SMMGP)
Pete McDermott (Policy Officer, Alliance)
Elsa Browne (SMMGP Project Manager)
Susi Harris (Clinical Lead for Substance Misuse, Calderdale)
Jean-Claude Barjolin (SMMGP Associate)
SMMGP Project Manager
80 London Road
London SE1 6LH
Tel: 020 7972 1980
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Network ISSN 1476-6302.