1 Contents Introduction………………………………………………………………………………………………………………………………………3 What are co-occurring mental ill- health and substance use conditions (dual diagnosis)?...4 National Guidance……………………………………………………………………………………………………………………………7 Support for you…………………………………………………………………………………………………………………………………10 Support for your loved one……………………………………………………………………………………………………………..21 Advocating for your loved one……………………………………………………………………………………………………….22 Resources and useful contacts.…………………………………………………………………………………………………….26 2 Introduction This toolkit has been produced by Adfam to support loved ones of those who are having difficulties with mental health and substance use. Whether you’ve just found out that your loved one uses drugs or alcohol and has mental health problems, or have been supporting them for many years, getting the support that you need can be challenging. This toolkit contains suggestions and resources for anyone affected by someone else’s co- occurring conditions. Much of the information in this toolkit is drawn from guidance from professionals, including those working to support families on a daily basis. However, it is not intended as a substitute for professional or peer support where this would be beneficial, and we would urge you to seek additional help and support. You will find a directory of local family support services at https://adfam.org.uk/help-for-families/finding-support/search- for-local-support Details of mental illnesses, descriptions of drugs and their effects, and treatment options are outside the scope of this toolkit. Further information can be found on the NHS website or at www.talktofrank.com © Adfam Copyright Conditions. No part of this material may be reprinted, reproduced, photocopied, altered or utilised in any form or by any electronic, mechanical or other means invented, without prior permission in writing from Adfam. Permission will not be unreasonably withheld. 3 What are co-occurring mental ill- health and substance use conditions (dual diagnosis)? Dual diagnosis is often not diagnosed… That is, it’s complicated, under diagnosed, difficult to diagnose. People don’t fit into ‘nice’ categories. One problem magnified another- e.g. a mental illness will make an addiction worse and vice versa. Family member Co -occurring mental ill- health and alcohol and/or drug use conditions refers to a broad spectrum of experiences. It is often also called ‘dual diagnosis’. Dual diagnosis originally referred to “Adults and young people who have a clinical diagnosis of psychosis with coexisting substance use”1 National Institute of Clinical Excellence (NICE) guidelines However, in practice, the term is often used much more broadly than this to encompass a range of mental health problems alongside substance use. We are using the term ‘co- occurring mental ill- health and substance use conditions’ as it more accurately describes the experiences of families we have spoken to. Often the loved ones of families we speak to may not have received official diagnoses, and often they are struggling with complex health needs – not just a ‘dual’ problem. However, we recognise that ‘dual diagnosis’ is a common shorthand. Where it is used in this toolkit it can be seen as synonymous with ‘co-occurring mental ill- health and substance use conditions’. We use these phrases to mean: “Any individual (adolescent or adult) who is experiencing mental ill-health and is using alcohol or illicit drugs or misusing prescription medicines to the extent that it is impacting on their wellbeing” For ease of use, and in line with Public Health England’s guide for commissioners2, we have shortened this to ‘co-occurring conditions’. This toolkit is aimed at family members of those with co-occurring conditions. For the person themselves, there is lots of helpful information about the services that can help on the Mind website: https://www.mind.org.uk/information-support/types-of-mental-health- problems/drugs-recreational-drugs-alcohol/dual-diagnosis/ 1 Coexisting severe mental illness (psychosis) and substance misuse: assessment and management in healthcare settings, NICE guideline, 2011 2 Better care for people with co-occurring mental health and alcohol/drug use conditions. A guide for commissioners and service providers; Public Health England, 2017. 4 The potential experiences of someone with co-occurring conditions Each experience can be redefined as a need that treatment, counselling, and support can help with. Substance use e.g. addiction, self-medication, prescribed medication, etc. Mental health Neurodiversity difficulties e.g. ADHD, being e.g. depression, on the Autistic psychosis, spectrum, trauma, etc. Dyslexia, etc. St igma and shame Adverse e.g. social stigma, childhood childhood shame, experiences self-stigmatisation, e.g. insecure low self-esteem, attachment, etc. trauma, etc. Physical health difficulties e.g. liver damage, being HIV positive, etc. Source: Peter Cartwright 5 Substance use and mental health Although both mental illness and substance use can occur in isolation, it is very common to find that someone is affected by both. Around one in three people with an enduring mental health problem also has a substance use problem. The relationship between the two can be complicated. It may be impossible to determine whether substance use has caused, triggered or made a mental health problem worse, or whether a mental health problem has led to substance use. For example, someone with anxiety may take drugs because it helps them feel calmer. This is known as ‘self-medicating’. Someone else may experience increased anxiety or other mental health challenges as a result of drug use. Co-occurring conditions may also differ in their severity. It’s possible to have a serious, chronic mental health problem and substance use that is not dependent but is impacting on the person’s (mental) health; or someone may be dependent on a substance alongside a mental health issue that is not considered to be serious enough to warrant a diagnosis. Many individuals have also never had a full assessment or sufficient contact with services to receive a diagnosis. Both mental health and drug use can fluctuate over time, so people with co-occurring conditions may have good and bad days; stable and less stable periods; times when they are using substances heavily and times when they feel well. It can be particularly hard for people with co-occurring conditions to access and engage in treatment, either because of the symptoms of their illness or because services are not able to meet their multiple needs. In addition, they and their families often face stigma and discrimination. Fortunately, there is increased awareness in society of mental health problems and the association with substance use. In recent years, national guidance on best practice in supporting patients and their families has been published and the key points are outlined below. 6 National Guidance Relatives often know more than is thought about causes and could help in the recovery if considered for interview Family member Se veral pieces of guidance have been produced in the last few years and it can be difficult to understand what is relevant. Some of the main points regarding families of people with co- occurring conditions are outlined below. We have highlighted the sections that relate specifically to families. Findings.org.uk have summarised the key legislation and you will find links to their summaries below, from which the extracts are taken. Psychosis with coexisting substance misuse: assessment and management in adults and young people. This guideline covers the assessment and management of people aged 14 and older with a clinical diagnosis of psychosis plus coexisting substance misuse. It aims to help healthcare professionals guide these people to stabilise, reduce or stop their substance misuse, to improve treatment adherence and outcomes, and to enhance their lives. People with psychosis and coexisting substance misuse should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If the person agrees, families and carers should have the opportunity to be involved in decisions about treatment and care. Families and carers should also be given the information and support they need. When working with adults and young people with known or suspected psychosis and coexisting substance misuse, take time to engage the person from the start, and build a respectful, trusting, non-judgemental relationship in an atmosphere of hope and optimism. For most adults with psychosis and coexisting substance misuse, treatment for both conditions should be provided by healthcare professionals in secondary care3 mental health services such as community-based mental health teams. https://findings.org.uk/PHP/dl.php?f=NICE_120.txt&s=eb&sf=rel 3 Secondary care is NHS services which generally require a referral from a GP. Examples of secondary mental health services are hospitals, some psychological wellbeing services, community mental health teams (CMHTs), crisis resolution and home treatment teams (CRHTs), assertive outreach teams and early intervention teams. This differs from primary care, which is often the first point of contact for people in need of healthcare. Primary care describes professionals such as GPs, dentists and pharmacists. Drug and alcohol services, whilst sometimes provided by the NHS, do not sit within this tiered system. Someone can self-refer to a drug and alcohol service, or be referred by a GP or another service. 7 Coexisting severe mental illness and substance misuse: community health and social care services. At first contact with services, aim to meet these service user’s immediate needs, wherever they present. This includes looking out for multiple needs (including physical health problems, homelessness or unstable housing) and remembering that stigma may make it difficult for them to access services. Provide direct help, or get help from other services, for any urgent physical health, social care, housing or other needs, and ensure their safeguarding needs and those of their carers and wider family are met. Ensure that the focal patient is referred to and followed up within secondary care. Mental health services should take the lead in assessment and care planning. Mental health services should adopt a person-centred approach to reduce stigma, address any inequity in access to services, and undertake a comprehensive assessment of the person’s mental health and substance misuse needs. On the patient’s acceptance at a secondary care mental health service, provide a care coordinator working in mental health services in the community to act as a contact for the patient, identify and contact their family or carers, and help develop a care plan with the patient and coordinate it. Care plans should also take into account the concerns of the patient’s family or carers… If they agree, share a copy of the care plan with the patient’s family or carers and (in line with local information-sharing agreements) with other services as needed. Mental health services should ensure carers are offered an assessment of their own needs. Based on this assessment, advise the carer that they may be entitled to their own support, for example, using a personal budget to buy care or to have a break from their caring responsibilities. Give information and advice on how to access services in the community, for example, respite or recreational activities or other support to improve their wellbeing. https://findings.org.uk/PHP/dl.php?f=NICE_58.txt&s=eb&sf=rel Better care for people with co-occurring mental ill- health and alcohol/drug use conditions: a guide for commissioners and service providers4. Everyone’s job. Co-occurring conditions are the norm rather than the exception, and commissioners and providers of mental health and alcohol and drug use services have a joint responsibility to work collaboratively to meet the needs of people with co-occurring conditions. No wrong door. Providers should have an open door policy for people with co-occurring conditions, supported by commissioners that enable services to respond collaboratively, 4 People with co-occurring conditions: commission and provide services, 2017: https://www.gov.uk/government/publications/people-with-co-occurring-conditions-commission-and-provide-services 8 effectively and flexibly to presenting needs, offering compassionate and non-judgemental care centred around the person’s needs, accessible from every access point. Collaborative delivery of care. Care may be provided by the same person or by relevant practitioners/services working in close collaboration. This requires accountability and clarity of role, information-sharing agreements, and shared care planning, with the individual at the centre of the process. Care that supports and involves carers and family members Carers have needs in their own right. As part of delivering timely, compassionate and effective care to people with co- occurring problems, practitioners should identify carers and family members who may have unmet needs, making appropriate referrals for carers’ assessments and/or to family support services. This may include: considering the impact of caring on their mental and physical health; that carers may not be aware of or included in any plans or decisions made by the person; the extent to which the carer can/will meet the person’s support needs; and the need to create support networks. Therapeutic optimism. Practitioners should demonstrate a genuine belief in the possibility of recovery, and all interaction and engagement with people using services should be undertaken in a spirit of optimism, with a clear commitment to helping them achieve recovery. Episodes of intoxication are safely managed. People can be at risk of harm to self and/or others when experiencing a mental health crisis, and the risks are heightened if they are intoxicated. Services need to ensure that they are equipped to respond, which means having staff able to identify the signs of intoxication, and responding appropriately to the associated risks such as not being able to maintain one’s own safety, physical risks and disinhibition. https://findings.org.uk/PHP/dl.php?f=PHE_83.txt In 2019 NICE published a set of quality statements5 aimed at improving the quality of care for people with co-existing conditions. The statements are as follows: Statement one: “People aged 14 and over with suspected or confirmed severe mental illness are asked about their use of alcohol and drugs.” Statement two: “People aged 14 and over are not excluded from mental health services because of coexisting substance misuse or from substance misuse services because of coexisting severe mental illness.” Statement three: “People aged 14 and over with coexisting severe mental illness and substance misuse have a care coordinator working in mental health services when they are identified as needing treatment from secondary care mental health services.” Statement four: “People aged 14 and over with coexisting severe mental illness and substance misuse are followed up if they miss any appointment.” 5 Co-existing severe mental illness and substance misuse Quality Standard [QS188], 2019: https://www.nice.org.uk/guidance/qs188 9 Support for you What has helped the most? Joining Families Anonymous and working my own programme. Learning about addiction and mental illness. Counselling support. Supporting others. Family member Family members of those with co-occurring conditions consistently tell us that seeking support for themselves has been crucial. Often, family members are so concerned for their loved one’s welfare and keen to get support for them, that they neglect their own needs and wellbeing. Support Groups It was really good hearing other people’s experiences- you really learn a lot. You realise you’re not the only one. Family member Most people supporting someone with co-occurring conditions focus on how they can help their loved one’s recovery, but your own mental and physical health are important too. If you haven’t yet considered a support group, you might be surprised at how helpful it can be to talk to others who have had experiences of supporting someone through co-occurring conditions. Organisations such as Al-Anon, SMART, and Mind hold regular support groups for families of people affected by substance use, mental health problems and co-occurring conditions. You can also find a list of local support groups on Adfam’s website. https://adfam.org.uk/ How can support groups help? Although support may differ from area to area, groups are usually led by a family support worker or someone who has lived experience of caring for someone with co-occurring conditions. Groups are informal and may be held weekly or less frequently. Since the Covid- 19 lockdown, many groups meet online via Zoom or other video call platforms. Some groups may also have a closed Facebook page or a WhatsApp group. The common factor is that peer support groups offer the opportunity to talk about your experiences and share the experiences of others. 10