This leaflet is aimed at:
•The carers of people with alcohol and drug problems (substance misuse) who provide continuing help and support, without payment, to a relative, partner or friend.
•The addiction specialists and other professionals involved in the care and treatment of the person with these problems.
It suggests ways of improving communication and partnerships when the person has first been diagnosed with a substance misuse or dependence disorder.
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For the carer
About substance misuse and dependence
Substance misuse harms a person’s health. Dependence occurs when there is physical and/or psychological addiction, and the person will have withdrawal symptoms if they do not use the substance. Their lives are dominated by getting and using the substance. People use many sorts of substances. These can be legal (alcohol, tobacco, and solvents), or illegal (cannabis, heroin and cocaine). Some prescribed drugs are addictive (eg, diazepam). Substance misuse and dependence is increasing in the UK, especially among the young.
Changes in the person’s behaviour
As a carer you may notice that the person is:
•More concerned with getting their substance than dealing with other things.
•Angry if confronted about their substance use.
•Secretive and evasive.
•More often intoxicated, or appears to be under the influence of something.
•Tired, irritable and looks less well.
•Less interested in everyday things.
•Unable to say ‘no’ and has a strong desire for the substance.
•Using more and more of the substance to get the same effect.
•Involved in criminal activity.
•Anxious, depressed or shows symptoms of other mental health problems.
Making a diagnosis
A diagnosis is made by talking to the person about their substance use, looking for signs of withdrawal, examining the person and asking them to perform certain tests. These can include urine-screening tests for drugs and, in the case of alcohol abuse, liver function tests.
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The goal of treatment ranges from controlling consumption, to detox and giving up drinking or drugs completely. Psychological treatments are common for all forms of substance misuse, and for opiate (drug) addiction methadone and buprenorphine treatment. Medication is also available for both drug and alcohol addiction to help prevent relapse.
As the carer you may feel
•Frustrated and hurt.
•Unsure how to help.
•Concerned for the person’s safety and well-being.
•Worried about what will happen in the future.
•Angry if your help and advice are not accepted.
•Afraid the police will be involved.
•Frightened by the person’s behaviour.
•Feel that the person is beyond help.
•Worried about the effects on the rest of the family.
•Worried about financial consequences.
Tips for carers
(In partnership with your addiction specialist and other professionals.)
Good communication between all those involved in the person’s care is important, but takes time and effort. Forming a positive relationship with all those involved is important in helping to control or stop the substance use. You may be invited to become involved in treatment plans and in supporting the person. The professionals you may come across are:
•GPs and other specialist doctors
•Staff from various non-statutory services
Support groups e
Castle Craig Hospital
Littledale Hall Therapeutic Community
Find support near you ▶
Questions to ask the doctor
•What does the diagnosis mean?
•Can you explain it in a way that I will understand?
•Are there any treatments?
•Where can I get information about medication and possible side-effects?
•Are there other things we can do to help ourselves?
•What can we expect in the near future and over time?
•Will the person be able to continue to work or in education?
•Is it safe for the person to drive?
•Will the person I care for get better?
•Is an addiction for life?
•How often should I come and see you?
•How can I best support the person?
•What are the risks of accidental overdose?
•Can you give me an ‘out-of-hours’ emergency telephone number?
•Do you have any written material on this disorder? If not, who does?
•Is there anything that we can change at home to make things easier or safer?
•Are there any organisations or community services that can help?
•Which health service worker is my main contact for guidance and advice?
Remember to arrange your next appointment before you leave.
Advice which will help you prepare for follow-up visits
Before your visit
•Keep track of changes in behaviour and reactions to medication in a notebook, along with any concerns or questions since your last visit.
•Look at the information you have collected and write down your top three concerns. This will make sure that you remember to talk about the things that matter. Your concerns may include questions about:
•changes in symptoms and behaviour
•side-effects of medication
•general health of the patient
•your own health
•additional help needed
During your visit
•If you do not understand something, ask questions. Don’t be afraid to speak up.
•Take notes during the visit. At the end, look over your notes and tell the healthcare professional what you understood. This gives them a chance to correct any information or repeat something that was missed.
Further tips for carers when dealing with healthcare professionals
Healthcare professionals can be reluctant to discuss a person’s diagnosis with the carer, as there is a duty of confidentiality between the professional and the patient. However, they will usually want to hear what you have to say. If the person is under 18, there is a balance between confidentiality and the need to share information.
If the healthcare professional is unwilling to involve you as a carer, there are a number of things you can do
•Ask the person you are caring for if you can stay with them during the visit. If the person agrees, the doctor is less likely to refuse.
•Talk with other carers as they may have some helpful suggestions.
•Try to talk to other members of the team involved in the person’s care.
•If you are not satisfied, use the Trust’s complaints’ procedure.
Don’t forget to look after yourself as well
•Share your worries with trusted friends and family members.
•Don’t bottle your feelings up – there is nothing wrong with a good cry.
•Try to keep in touch with friends.
•Go to see your own doctor if you cannot sleep, are exhausted, anxious or depressed.
•Make sure that you find time for yourself and do some simple exercise.
For the professional
As a professional working with people with substance misuse problems and dependence and their carers, we hope that the following is a helpful guide to good practice.
When doing an assessment, do you:
•Try to see the person with the substance problem and the carer separately, as well as seeing them together?
•Consider doing a home visit?
Do you allow yourself enough time to:
•Listen, ask, listen?
•Obtain a life history?
•Leave time for questions and discussion?
•Explain how you arrived at the diagnosis and the need for change?
•Talk about the prognosis?
•Assess the safety of children, carers and others?
In the management of the illness, do you:
•Discuss possible treatments?
•Talk about the possible side-effects of medication?
•Spend time asking about the carer’s health – physical and emotional?
•Discuss how to meet the care needs of both the person with the substance problem and the carer?
Points to remember
•Carers have their own needs and may need respite.
•Communication with everyone involved is important.
•Give easy to understand verbal and written information.
•Give contact telephone numbers.
•Remember issues relating to consent and confidentiality.