Parallel Lines. A Report on Dual Diagnosis Service Provision in Croydon

Transcription

1 Parallel Lines A Report on Dual Diagnosis Service Provision in Croydon

2 Acknowledgements Parallel Lines This report was produced through partnership working between substance misuse services in Croydon (the Lantern Hall Involvement Coordinator, Representatives, and the WDP Dual Diagnosis Practitioner) and Hear Us (Croydon s mental health service user group). On behalf of all the project partners, we would like to express our sincere gratitude to everyone who has contributed to this report. Many thanks to the Hear Us Linkworkers and Representatives who were instrumental in developing the research model and who have supported clients to complete surveys and focus groups, in order to allow them to be open in expressing their views about service provision. We would also like to express our gratitude to mental health and substance use services who opened their doors and took part in the project, supporting us to hear the voices of their clients so that recommendations for improvement could be made. Our specific thanks to: Lantern Hall, WDP, PLUG/Plugettes and Tamworth Road Resource Centre. This report provides an insight into the experience of dual diagnosis clients when accessing mental health and substance use services. Without the openness and honesty of the clients surveyed, this report would not have been possible. We hope we have done justice to their words and are humbled by their innovativeness, honesty and ability to articulate the breadth of their experience. Report By: Liz Barnes (WDP Croydon) Karen Handy (Croydon DAAT) Allie Cairnie (Hear Us) Tim Oldham (Hear Us) 2 A Report on Dual Diagnosis Service Provision in Croydon

3 Contents Page Parallel Lines Acknowledgements 2 Introduction 4 Executive Summary 6 Methodology 9 Findings 11 Conclusions 24 Recommendations 25 Closing Remarks 28 Glossary of Terms 29 A Report on Dual Diagnosis Service Provision in Croydon 3

4 Introduction This report aims to provide an insight into the experiences of service users accessing both mental health and drug and alcohol services, in Croydon with a specific focus on the experiences of service users who identify as having a dual diagnosis (this includes both those service users who have formal mental health diagnoses and those who self-identify as having mental health needs). Project Aims Through questionnaires and focus groups, the project sought to explore the following questions: 1. What is the proportion of service users who identify as having a dual diagnosis in both mental health and drug and alcohol services? 2. What was the service user experience of gaining access to mental health and drug and alcohol services, and what was their experience of treatment within those services? 3. What are the barriers to accessing services and the gaps in service provision for both mental health and drug and alcohol services? 4. What recommendations could be made to mental health and drug and alcohol services to better serve the needs of their service users, in particular those service users who have a dual diagnosis? This report presents and summarizes the voice and experience of the participants in their own words. Project Background Parallel Lines Croydon has made a commitment to working with dual diagnosis clients in the recent past. An Integrated Care Pathway for Dual Diagnosis was developed by a team of professionals from both adult mental health services and adult substance misuse services in This clearly set out who would take the lead in working with dual diagnosis clients, and what to do in case of disagreements about which service a client would fall under. It aimed to develop clear care pathways in order to ensure that clients did not find themselves bouncing between services or falling through gaps in service provision. It also called for the use of a dual diagnosis forum for case discussions and to provide clinical support around working with dual diagnosis clients. Since this document was produced, several changes have occurred in the borough; mental health and substance misuse services have been restructured. There was previously a specific dual diagnosis post based within substance use services, but the funding for this position was lost. Additionally, the dual diagnosis forum is under-attended and under-used; this forum could be a very important resource, but staff need to be released from duties in order to attend. The lack of attendance suggests that service managers do not view the forum as a priority task for staff members. The above factors are likely to have contributed to a loss of focus on dual diagnosis in Croydon, and a resulting reduction in clarity about care pathways, as well as a lack of communication and interagency working between mental health and substance use services. 4 A Report on Dual Diagnosis Service Provision in Croydon

5 There has not been any recent research into the experiences of dual diagnosis clients in Croydon. This report aims to explore the situation in greater detail and to make recommendations about how services could be improved in light of the evidence. It also aims to give a voice to individuals with a dual diagnosis who often feel isolated and stigmatized, and to allow them to speak out about what they would like from their treatment services. Partnership working This report was a developed in partnership between the Lantern Hall Involvement Co-ordinator, Representatives, the Hear Us Linkworker Manager, Hear Us Linkworkers, and the WDP Dual Diagnosis Practitioner. The Linkworking Project recruits current or ex local service users (Linkworkers) to visit mental health services and conduct consultation sessions with service users. Through these sessions, Hear Us provides an opportunity for service users to raise their concerns, issues and needs as they arise, which can then be fed back to the service providers (via the Linkworkers). We were also able to utilize the service user peer support groups in substance use services, PLUG and Plugettes, and the Hear Us Forum in mental health services. This meant that we were able to use the existing mechanisms that were in place to access dual diagnosis service users and to consult with them about their experiences. Through the support of Linkworkers and Representatives, we were able to use the model of peer-to-peer support and user focused monitoring to encourage service users to share their experiences. We also used the coproduction model, as Linkworkers, Service User Representatives and individuals who identified as having a dual diagnosis were involved with developing the research perameters, designing the questionnaire and deciding in which services the research should be carried out. In substance misuse services, Service User Representatives are recruited from current or ex local service users, and these individuals inform service providers on their perspective of using treatment services. They are also involved in consulting with other service users about their experiences. In conducting research into the experiences of dual diagnosis service users, we were able to draw on the expertise and support of Representatives and Linkworkers, who were instrumental in conducting the questionnaires with clients. A Report on Dual Diagnosis Service Provision in Croydon 5

6 Executive Summary This report aims to explore the experiences of dual diagnosis clients when accessing mental health or substance misuse services in Croydon. The intention is to discover whether services are meeting the needs of this client group, and if there are areas where provision is lacking, to develop recommendations for improvements. The strategy This report was developed in partnership between between the Lantern Hall Involvement Co-ordinator, Representatives, the Hear Us Linkworker Manager, Hear Us Linkworkers, and the WDP Dual Diagnosis Practitioner. The project partners main aim was to engage service users in a dialogue around the following questions: 1. What is the proportion of clients who identify as having a dual diagnosis in both mental health and drug and alcohol services? 2. What is the client experience of gaining access to mental health and drug and alcohol services, and what is their experience of treatment within those services? 3. What are the barriers to accessing services for dual diagnosis clients and what are the gaps in service provision for both mental health and drug and alcohol services? 4. What recommendations could be made to mental health and drug and alcohol services to better serve the needs of their clients, in particular those clients who have a dual diagnosis? Parallel Lines Using the Hear Us Linkworking Project and the Representatives the project partners were able to reach current clients of both mental health and substance use services. A mixture of quantitative and qualitative data was gathered using questionnaires and focus groups. This report summarises the voices of the survey and focus group participants in their own words. The data was then analysed through the identification of categories and common themes emerged. The Findings 1. Overlap between mental health problems and drug and alcohol use just under 50% of people identified as having both a mental health and drug or alcohol problem. A significant number of these clients were not receiving support for both problems, and questions were raised about whether services were equipped to meet the needs of the dual diagnosis clients they were working with. However, it was also found that information on the dual problem was being provided by both services to a large number of clients 2. Barriers to accessing drug and alcohol services concerns were raised about long waiting times, lack of information about available services, and suitable services not being commissioned eg. For binge drinkers. Clients also raised the issue that their mental health was a problem when accessing drug and alcohol services, as they had to do too many separate things. They also felt that it impeded their treatment journey as access to suitable rehab options was limited. 3. Improvements to drug and alcohol services Clients would like to see 6 A Report on Dual Diagnosis Service Provision in Croydon

7 improved access to detox and rehab, support with mental health, more group treatment options and increased access to their keyworkers. 4. Positive experiences of drug and alcohol services 32 clients said that they did not need any additional support from services, and several individuals praised the treatment providers and the quality of care they received. 5. Barriers to accessing mental health services a large number of individuals had been refused mental health treatment, and some of these stated that they had been told it was due to their drug or alcohol use. It was identified that thresholds for receiving a service are extremely high, and that in some cases high risk situations have to develop before individuals are offered treatment. Concerns were raised that mental health professionals were not understanding of their clients needs and that they did not listen to them. Some clients found that even when they were offered a service, it was inadequate and did not meet their needs. 6. Improvements to mental health services Clients identified that improvements were needed in the following areas: greater access to talking therapies, increased support from CPN s, more practical support, a more streamlined and quicker assessment process, and clearer communication about diagnosis and reasons for refusal of treatment. Clients wanted professionals not to make judgments about their substance misuse and the interaction between this and their mental health, prior to meeting them. They felt that there was a lack of support for people with a personality disorder, and that this led to these individuals turning to substances in order to cope. 7. Positive experiences of mental health services 22 clients felt that their mental health treatment was adequate and did not want any additional support. Clients valued their relationship with their CPN more than any other treatment offered. 8. General recommendations for services Clients said that they mainly wanted to feel listened to and taken seriously. They wanted increased contact with professionals, including doctors where relevant. Other recommendations were faster access to services, increased group and social support and better information on how to access services/ available service provision. 9. Focus groups Themes identified from the focus groups were: The difficulty of getting a referral into mental health services; clients felt that GPs were not taking their problems seriously enough. The clients stated that they were frequently told that their mental health was due to their drug or alcohol use, when they believed the opposite to be true. Some clients identified that they were discharged from drug and alcohol services before being drug or alcohol free, and that this was due to their needs not fitting in with service timelines, as they did not recover from their drug/alcohol problem quickly enough. Clients felt that they were stigmatized and judged for either their mental health or drug/alcohol use, and that this made it hard to be honest with professionals. They stated that they needed time to build a relationship and learn to trust a professional. A Report on Dual Diagnosis Service Provision in Croydon 7

8 They found the assessment process too brief at times, and stated that they needed space to open up about their difficulties. They echoed the questionnaire responses as they found that waiting times were too long. Additional support the focus group participants would like to see is increased access to talking therapies, social/peer support groups, regular medication reviews and more information about the support available. Recommendations This report presents nine recommendations to Croydon s mental health and substance misuse communities, including commissioners, service providers and local community organisations. The recommendations to improve dual diagnosis service provision are as follows: Recommendations for both mental health and drug and alcohol services 1. Each team to have a named point of contact for dual diagnosis who would attend the dual diagnosis forum. This could improve communication between teams and resolve disputes about care pathways. 2. More group treatment options clients wanted greater access to peer and social support, as well as longer term treatment and practical support. All this could be achieved with a greater range of group treatment. 3. Assessments should include reference to both drugs/alcohol and mental health and clients should be encouraged to be open about both problems. Recommendations for drug and alcohol services 4. A specialist Dual Diagnosis Worker to be appointed at Lantern Hall. This would facilitate the process of referral into mental health services for drug and alcohol clients. 5. Increased understanding of mental health needs and the experience of dual diagnosis clients by drug and alcohol staff. This would allow them to offer clients more appropriate advice and information, and it would enable them to refer clients on appropriately as well as facilitate their treatment journey into detox/rehab where appropriate. 6. Increased access to psychological therapies/counselling within drug and alcohol services this would improve the treatment experience for clients and reduce the gaps in service provision. It would enable clients to address the underlying causes of their substance misuse prior to becoming substance free. Recommendations for mental health services 7. An improved understanding of the needs of dual diagnosis clients and their experience, for example, staff not making the assumption that the clients drug/alcohol use has caused their mental health problem. This would enable professionals to be more empathetic to clients experience, which would in turn encourage clients to be more honest about their drug/ alcohol use. 8. Increased access to psychological therapies this was one of the main ways clients thought mental health 8 A Report on Dual Diagnosis Service Provision in Croydon

9 services could be improved. Waiting times are currently very long for these services, at around 18 months. 9. Increased staff contact and improved communication clients valued time with staff very highly. They also felt that communication was poor, and were confused about the reasons for treatment decisions, and what their diagnosis was. Methodology Research design The purpose of the study was to find out about the experiences of clients accessing mental health and drug and alcohol services, and any barriers that they encountered when trying to get support for these issues. Clients were also asked about areas where services were performing well, and times when support could be improved. The respondents were asked to provide information about their drug/alcohol use and any mental health problems they were experiencing, in order that data could be collected about the experiences of clients with a dual need, or dual diagnosis. This includes both clients who have a formal mental health diagnosis, and those who self-identify as having both mental health and drug/alcohol problems. Questionnaires were developed by a team of two service user involvement workers, one dual diagnosis worker and four peer support volunteers, some of whom themselves identified as having a dual diagnosis. Data Collection 42 questionnaires were collected at service user groups for drug and alcohol users. 16 questionnaires were collected at a statutory mental health service. 21 questionnaires were collected at a statutory drug and alcohol service. 23 questionnaires were collected at a voluntary drug and alcohol service. 3 questionnaires were collected at a housing service. 10 questionnaires were collected at a mental health service user forum. This information details where the questionnaires were carried out, but in fact many of the clients questioned are accessing more than one of the above organizations in order to fulfill different needs. Clients were supported to complete the questionnaires in order to improve accuracy of responses, and to ensure that they were able to read and understand the questions. The individuals carrying this out were either peer support workers where possible or staff who did not work in the service where the questionnaires were being carried out, in order to allow respondents to feel comfortable to answer A Report on Dual Diagnosis Service Provision in Croydon 9

10 the questions honestly. The questionnaires were kept anonymous for the same reason. Two focus groups were carried out, with 6 participants in each group. All of the clients that participated in the focus groups identified as having a dual diagnosis. The clients were asked ten questions (see appendix) about their experiences of having mental health and drug/alcohol problems, and accessing services for support with these issues. These responses were recorded by writing up statements on a flip chart, in order that clients could see what was being written and make corrections if necessary. They were also recorded on a digital recorder for increased accuracy. Limitations of the report Respondents did not always answer every question fully, for example, they might be accessing several different services, but put down one or two on the form. Some of the missing data could be gathered from their responses to other questions, but because of this the numbers do not always tally correctly. In addition, some of the questions asked about potentially sensitive material, and respondents may have been reluctant to answer fully, despite the questionnaires being anonymous. For example, the question about why people were accessing mental health services was not answered in full by many of the respondents. This was also a problem in the focus groups, as some of the participants may have been reluctant to share personal details in a group setting. Conducting one-to-one structured interviews rather than focus groups could have resolved this difficulty. 10 A Report on Dual Diagnosis Service Provision in Croydon

11 Findings Parallel Lines Findings Through an analysis of the data gathered using focus groups and survey questionnaires, a range of complex themes and issues were identified. The research yielded both qualitative and quantitative results, and the below findings are a presentation of the themes that emerged. 1. Overlap between mental health and drug and alcohol services 2. Barriers to accessing drug and alcohol services 3. Improvements to drug and alcohol services 4. Positive experiences of drug and alcohol services 5. Barriers to accessing mental health services 6. Improvements to mental health services 7. Positive experiences of mental health services 8. Focus groups The findings offer an insight into the experiences of clients who self identify as having both mental health and drug and alcohol problems, when accessing treatment services in Croydon. These findings inform the recommendations in this report. A Report on Dual Diagnosis Service Provision in Croydon 11

12 Overlap between mental health and drug and alcohol services There is a large degree of overlap between drug and alcohol use and mental health problems 19 people (or 44%) receiving a mental health service were using drugs or alcohol problematically, and 42 people (or 45%) receiving drug and alcohol services identified as having a mental health problem. Clients with drug or alcohol problems who tried to access support for their mental health had done so for a variety of reasons, including depression, feeling suicidal, PTSD, psychosis, bipolar d/o and personality d/o. This suggests that there is no pattern around a particular mental health condition being linked to a drug or alcohol problem. The degree of overlap between drug and alcohol use and experience of mental health difficulties suggests that staff in each service should be working closely together to support these clients, and communicating frequently. 2 mental health service clients who had a drug or alcohol problem were unsupported by substance use services. 16 people who were accessing drug/alcohol services had tried to access mental health services but were receiving no support, either statutory or voluntary. There were an additional 13 people receiving drug/alcohol services that identified as having a mental health problem, but had not tried to access any support with their mental health. If I m honest about my drug and alcohol use they treat me differently. They (service providers) judge by what they see on computer screens.. These findings highlight that assessments should include reference to both mental health and drugs and alcohol, and that clients should be encouraged to be open about both problems. Clients were asked how honest they felt they could be about both their substance use and mental health. Some did not feel able to be open because they felt judged There is access to counselling at Lantern Hall, but there is no provision for psychological therapies. This may result in clients missing out on an intervention that could be key to their recovery. Others worried about the consequences of honesty: I tried to access counselling at Mind, I put alcohol use on the form and they wouldn t see me. If you tell them everything they just want to section you. Srevice User The dual diagnosis quadrant model states that people with mild/moderate mental health problems should be supported through substance use services, however this is only effective if substance use services are equipped to meet these needs. I went to Lantern Hall (drug/alcohol service) - there was no support for my mental health, they mentioned counselling but I never had any. However, on the positive side 26 clients felt that mental health services had supported them around their substance use, and 30 clients were receiving support for their mental health through drug and alcohol services. This demonstrates that 12 A Report on Dual Diagnosis Service Provision in Croydon

13 staff in each service are engaging with clients around both these issues in an effective way. 42 people had received advice from their mental health worker about their drug or alcohol use. The average score service users gave the usefulness of this support was people had received advice from their substance use worker about their mental health and the average score service users gave the effectiveness of this advice was 5.2. This demonstrates that mental health workers are knowledgeable about drugs and alcohol, but drug and alcohol workers could improve their knowledge about mental health treatment. This may be because mental health is a broader area, and often requires greater specialist knowledge in order to address it effectively. In addition, drug/alcohol workers may not see mental health as part of their remit or responsibility. Barriers to accessing drug and alcohol services 37% of people who identified as having a drug/alcohol problem stated that they had faced barriers to receiving support with their drug/alcohol use. Of those who had faced barriers to receiving support, the largest group were those who felt that there was a lack of available support in the community that met their needs. Specific problems faced included long waiting lists: They took a long time to see me. Feeling that services were unhelpful: Not knowing what services were available: Some organisations did not want to help or know. And lack of support for those using alcohol problematically, but not dependently: Not knowing or seeking the help that was out there. People also felt that their mental health needs had been a barrier to their drug or There is no help for binge drinkers. alcohol treatment, and having to access multiple services was challenging: I m having to do all these separate things. Mental health problems a barrier as harder to access services. Clients said that they used substances in order to cope with their mental health difficulties. This then complicated their treatment. Diagnosed with BDP [borderline personality disorder] and know many others in the same situation. Most with PD s [personality disorders] turn to drugs as they receive inadequate MH [mental health] care, and use substances to simply maintain normality and deal with crises. You can t drink while you re doing therapy, but I was drinking to cope with therapy. Lack of access to rehab or detox was a barrier for several people, and aftercare following detox was also seen as an important gap in service provision. This A Report on Dual Diagnosis Service Provision in Croydon 13

14 is particularly pertinent as mental health services often ask people to stop using drugs or alcohol before they can access support for their mental health. They may also find it difficult to stop using drugs or alcohol, as they cannot get access to detox/rehab or alternative aftercare. Clients with mental health problems are sometimes required to attend specialist rehab facilities, which are more expensive. They may also find it challenging to attend the required appointments that are necessary to get funded for detox, such as a pre-detox group, because of their mental health symptoms. Barriers to accessing drug and alcohol services 37% of people who identified as having a drug/alcohol problem stated that they had faced barriers to receiving support with their drug/alcohol use. Of those who had faced barriers to receiving support, the largest group were those who felt that there was a lack of available support in the community that met their needs. Specific problems faced included long waiting lists: They took a long time to see me. Feeling that services were unhelpful: Some organisations did not want to help or know. Not knowing what services were available: Not knowing or seeking the help that was out there. And lack of support for those using alcohol problematically, but not dependently: There is no help for binge drinkers. People also felt that their mental health needs had been a barrier to their drug or alcohol treatment, and having to access multiple services was challenging: I m having to do all these separate things. Mental health problems a barrier as harder to access services. Clients said that they used substances in order to cope with their mental health difficulties. This then complicated their treatment. Lack of access to rehab or detox was a barrier for several people, and aftercare following detox was also seen as an important gap in service provision. This is particularly pertinent as mental health services often ask people to stop using drugs or alcohol before they can access Diagnosed with BDP [borderline personality disorder] and know many others in the same situation. Most with PD s [personality disorders] turn to drugs as they receive inadequate MH [mental health] care, and use substances to simply maintain normality and deal with crises. You can t drink while you re doing therapy, but I was drinking to cope with therapy. support for their mental health. They may also find it difficult to stop using drugs or alcohol, as they cannot get access to detox/rehab or alternative aftercare. 14 A Report on Dual Diagnosis Service Provision in Croydon

15 Clients with mental health problems are sometimes required to attend specialist rehab facilities, which are more expensive. They may also find it challenging to attend the required appointments that are necessary to get funded for detox, such as a pre-detox group, because of their mental health symptoms. Ways drug and alcohol services could improve support offered Additional support that clients wanted included: improved access to detox/rehab - with aftercare following detox, support with mental health (such as counselling), and practical support (such as housing and benefits issues). More group work: More groups during the week for distraction. Increased contact with keyworker: More regular and frequent support More one to one and group sessions Some ideas for other support were drop in care - disappointed at the lack of on the spot care when I ve needed it, and referrals and information about other services. Positive findings about drug and alcohol services Many clients felt well supported by drug and alcohol services, when asked what additional support they would like to see 32 people said they did not need any additional support. Clients also made many positive comments about the service they had received, such as: This service (WDP) is precious to us as all who suffer, God bless you all x WDP have given me a lot of support within their service and referrals. I have felt excellently supported by Lantern Hall. Very good and fast access to service. Overall I m really happy with the support I have received, I have had a very positive experience and high quality care. Barriers to accessing mental health services 35 people, or 44% of those who identified as having a mental health problem, felt that they had faced barriers when trying to access services for their mental health. 16 people, or 32% of those who had tried to access mental health services, were receiving no support with their mental health, either from statutory or voluntary services. There were an additional 13 people who identified as having a mental health problem, but had not tried to access any support with their mental health. 22 people, or 44% of those who had tried to access mental health services, said that they had been denied a mental health service in Croydon (some of these people may have gained access to a service at a later date). The main reasons people gave for having been denied a service were their drug and alcohol use and the lack of services or available resources. A Report on Dual Diagnosis Service Provision in Croydon 15

16 Psychologists/psychiatrists pass the buck to keep to their budgets. One individual wanted To have the resources put in place and not have to keep going to GP. Another said: Further counselling denied due to cost and limitation of NHS. Been d/c due to lack of doctors. Not good enough. High thresholds for services were also thought to be an important factor in denial of services, as people were told they did not need or qualify for a service. One individual commented: Do not fall into threshold for various services. Another reported, I was having a breakdown, suicidal. Got assessed then left. No help. This was also a problem for those whose mental health conditions were deemed too severe. There were people with specific mental health conditions who were not able to access therapy because of this. I was denied talking therapy with a psychologist a few years ago as I have psychosis, so I had to fight for it. Denied therapy as my condition was considered too severe when I was assessed. Two people said that they had been given no explanation for why they had not been offered a service, and stated: No reason, only got help after people got hurt They never gave me counselling and they ignored me. This suggests that one client found it so hard to get a service, that his/her needs were only addressed after someone got hurt. This is problematic, as service thresholds may have reached a level where high-risk clients are being denied services. The other most significant barrier to getting support from mental health services was drug and alcohol use: I need to stop drinking before I can get help. I got refused treatment by Purley Resource Centre three times because I was on drugs. They might say my mental health is down to the drink, but I know something s not right. I was on crack so I couldn t get mental health support. Two people pointed out that this problem was exacerbated as they could not get funding for detox/rehab either, and so were struggling to manage their addiction as well as their mental health problem. Six people found that there was a lack of understanding from mental health professionals, and felt that this had prevented them from accessing mental health services: A Report on Dual Diagnosis Service Provision in Croydon 16

17 One stated doctors don t listen. Another said Very little help from psychiatrist - who to turn to? This suggests that even when someone was offered a service they felt that this was inadequate, and that no further support was forthcoming. Two people said that long waiting lists were a barrier, one would be waiting for 2 years for therapy, but they were already 63, and the other said: No one specifically deals with it, the long wait with no contact when I gave my number, still no contact. Ways mental health services could improve support offered The area which the most clients identified as needing improvement was talking therapies. They said that they would like access to therapy, counselling or at least someone to talk to on a one-to-one basis. Clients also wanted to have more support with practical matters such as housing, benefits and managing finances. One client said: Support around physical wellbeing and homelessness. Clients wanted a clear idea of their diagnosis or formulation following assessment, and for assessments to take place in a timely manner. They also wanted their problems to be taken seriously and did not want to be denied an assessment. They felt that professionals should not make judgments about them before meeting them. Actually checking the facts rather than accusing me of drug use/addiction. Yes an assessment before things got too bad. Not being refused help. Clients would also like increased support from their CPN, including long term support: More visits from care coordinator. Long term catch ups to see if you are ok. More time for patients. There were also comments about dual diagnosis and the additional problems this brought up for service users, one person commented: [I] keep getting help with drug abuse when wanting help with mental health. He/she would like services to help with this: By seeing if my substance misuse is to do with my mental health. Another client identified that he/she would like to see: Faster access to detox/rehab for motivated people. Mental health diagnosis - even while drinking alcohol. A Report on Dual Diagnosis Service Provision in Croydon 17

18 This highlights the common problem faced by people with a dual diagnosis; that they cannot get support from mental health services while using substances, but in turn it is harder to get treatment and to stop using substances while their mental health is untreated. Another client pointed out: There is a massive problem of PDS [personality disorder] and substance misuse which is not addressed as it s deemed too time-consuming/ challenging etc. There are a number of possible reasons for this client s experience; it could be that personality disorders require a long term intervention, and are not always effectively treated within mental health services, as was highlighted in Personality Disorder: No Longer a Diagnosis of Exclusion. Alternatively, this could be because the recommended treatment for personality disorder is talking therapy, and this is not often offered to individuals using substances. Positive findings about mental health services 22 clients were happy with the support they had received from mental health services, and did not want any additional support. Some statements clients made about the services they were receiving suggest that they valued contact with workers more than any other form of support: After being sectioned I was given advice and support. Cc contact/ telephone contact, both once a week, Star worker. Overall I m really happy with the support I have received, I have had a very positive experience and high quality care. General recommendations for services The number one priority for clients of both drug and alcohol and mental health services was to feel listened to. They wanted staff to spend time with them and to feel that their needs were a priority. They felt that workers should care about their clients, and be knowledgeable and understanding. Some changes clients would like to see were: Listening to patients more, recommending a wider range of help. Have people that understand about MH problems and they need to support MH patient more. More time and understanding / care. I would like my key worker to listen to me more and not constantly put me on hold. This was also important for doctors: They come around to see how I am getting on and they talk to me. GPs need more training. Psychiatrists need a regular MOT. 18 A Report on Dual Diagnosis Service Provision in Croydon

19 To be reassessed throughout my recovery. To be listened to by doctors. On a similar note, clients also wanted increased contact with workers, including doctors. This is positive, in that it demonstrates that clients value the time that workers spend with them, and shows that this support is an important part of their recovery. However, it also speaks to a lack of resources and large caseloads meaning that workers have less time to spend with their clients. Some comments were: See Dr. more often at Tamworth Rd. More one-to-ones. More time for patients. A need for long term support was identified. This did not have to be the same level of support, but they wanted to know that there was help available if they needed it. This suggests that clients have found that for recovery to be successful long term, either for mental health or drug/ alcohol problems, they need to have long term support systems in place. Nothing available for those who have been clean for some time. Ongoing support is essential. Keeping in touch and support in recovery. I could have done with different support towards the end of my treatment. For both drug and alcohol and mental health services, length of waiting times was a problem. Clients would like faster access to services, speedier assessments and quicker prescribing. I think people need to receive their prescriptions much quicker. Assessment is too slow. IAPT has not responded to referral form from 2011 [this was reported in 2013]. Croydon Health Service say that referral was sent and will resubmit but haven t heard anything for a couple of months. One client said that his/her experience of accessing support was: Long and drawn out. Clients wanted to have access to groups and places where they could meet and socialise with others. This suggests that social contact and peer support is a valued part of service provision. Clients would like to see: More groups - places to go for friendship - to learn life skills. Groups more than once a week. Not enough places to go to get advice & friendship. Not able to cook & sew but need to learn. Embarassing not being able to do these things. Don t like to ask but would like to know where to go. A Report on Dual Diagnosis Service Provision in Croydon 19

20 Clients also wanted to be given better information on how to access services. They said that the process of finding out about services was not always easy, and that it should be made more straightforward: Was difficult to find out at the beginning - doctor wasn t very helpful. Should be a lot easier than it is and there should be more info and support. Focus groups During the focus groups, the participants made the largest number of statements about the topic denial of services. Some of these responses related to the attitude of GPs, and the difficulty of getting an initial referral into mental health services through your GP. They said: I struggled at the GP, they wouldn t refer me to mental health services. They brushed me off and said you re not that bad. Another GP then referred me. I was begging my doctor for help. Service User It depends on the GP you ve got and what borough you live in. The GP said if I self harm I should present to A&E and show them my wounds. I felt very pissed off. They also felt that the threshold for access to services was too high. This led to increased risk as services were not received in a timely manner. They felt that some problems could have been avoided if they had received help sooner. If something drastic happens they will help you. You have to nearly kill yourself before you get help. They d rather wait until something bad happens than give you a service - it s frustrating. I m worried about having another psychotic episode, and the help won t be there. There were also a large number of statements made about mental health services being denied due to drug/alcohol use. Clients felt that they were told their mental health problems were due to their drug/alcohol use, but they experienced this differently. The people that turn you away don t understand that drink/drugs might not be the reason you are depressed in the first place. At first they thought my mental health problems were all down to drugs. I got help when I started cutting myself. They felt that when you have a dual diagnosis You are thrown from pillar to post. And additionally: They don t want to help you if they think you re on drugs. 20 A Report on Dual Diagnosis Service Provision in Croydon

21 Being refused mental health treatment was particularly problematic when clients were also prevented from continuing with drug/alcohol treatment. When clients do not address their drug/alcohol use within a particular timeframe they can be told to return to services when they are ready to address this. At times this may be an appropriate response, however services do not always recognize that clients with mental health problems may find it more challenging to address their drug/alcohol problem and may need additional support for unmet mental health needs. One client said: In drug and alcohol services, when you ve been there for a long time, they won t let you come back. Clients felt that it was very important for staff to be understanding and nonjudgmental. They made numerous statements which suggest that they frequently feel judged, and have a sense of being stigmatized due to their mental health or drug/alcohol problems. They said: People assume you walk in the middle of the road and are a bit nutty. You feel like people are going to judge you and think you re a nutcase. They laugh at you. They [service providers] judge by what they see on computer screens. Service User Family want you to get a job You are labeled. Alienated. Vulnerable. Told to pull your socks up and sort yourself out - they don t understand. Clients were reluctant to be honest about either their mental health or drug/alcohol problems: I m honest and I get put down and judged like a useless waste of time. I ve never properly talked to anyone about being depressed. And they found that the relationship with the staff person was a big factor in enabling them to be more open: I opened up about my feelings. You build relationships and then workers leave. I tried to tell the psychiatrist how it really was, but I was only there for 10 minutes and they said I was normal. Being able to trust the particular worker was identified as important, and this may be related to anxiety about how professionals would react if they were honest and open. A point raised by several people was their fear of being sectioned if they were open about their mental health. They wanted staff to be passionate and genuinely caring and to understand their difficulties. They wanted to be listened to. A Report on Dual Diagnosis Service Provision in Croydon 21

22 People don t understand how you feel. [I m] not being heard. Some professionals don t understand - it s the luck of the draw who you get. It s not the outside that counts - it s what s going on inside. Another area that the focus group participants felt was important was assessment. They felt that assessments were too brief; that workers did not want to spend time with them, and therefore that they were not able to get the correct support. This may be due to the sensitivity of the information being asked, and clients finding it difficult to answer the questions. This also relates to the earlier point about trust and the need to build a relationship with the worker before being open and honest. Clients said: They don t ask the right things, it s like they can t wait to get you out of there. They don t assess you - they ask you what you think your diagnosis is. I had an assessment with a psychiatrist that lasted 5 minutes. Waiting for an assessment was a worry in itself. Explaining to the GP - they ask questions I don t know the answers to. You come out feeling worse. This shows that assessment is a daunting process for clients, and that they may feel confused by some of the questions asked. They do not always have the confidence to speak up about this during the assessment, and so leave without having spoken about the true nature of their difficulties. In addition, staff carrying out mental health assessments sometimes focus more on the drug/alcohol problem. This does not give the client the opportunity to explain what mental health difficulties they are experiencing, and does not allow the professional to get a clear picture of the clients needs. Clients felt that having to go to different services to meet all their needs was unhelpful, and that their difficulties were exacerbated by this complex process. In drug and alcohol services you should get your mental health assessed at the same time. People don t know how to get help. Now I ve got sober I have to go back to the GP to get support with my mental health. This added to the increased distress they felt due to having both mental health and drug and alcohol problems. They acknowledged that often their substance use was a way to cope with an untreated mental health problem, which made it more challenging for them to become drug/alcohol free. You have to use alcohol or drugs to cope with your mental health problems. Drink/drugs are like a medication. 22 A Report on Dual Diagnosis Service Provision in Croydon

23 An additional area for improvement was waiting times, clients felt they had to wait too long for an assessment, and that this could lead to increased risk at times. They stated that they were told to access emergency services if things got worse, but they did not feel that this was adequate. No information was offered about bipolar self help groups. I wanted to be advised on treatment I needed. It s a 2 month wait to see a psychiatrist. You are told if anything happens to you they can fast track it. I m still waiting on a psychiatrist assessment - it s a long winded process. It s a long wait for a diagnosis. Quicker and easier access - you have to be suicidal before they do anything. Further support clients would like to be offered included talking therapy, social support, including peer support and regular medication reviews. This echoes many of the responses from the questionnaires. There is no support with social networks - before I was going to the day centre or drop in centre. Social networks and meeting people with similar problems keeps your mind away from your mental health problem. They also wanted to be given more information about available support: You need to be told the options available - they hold things back. A Report on Dual Diagnosis Service Provision in Croydon 23

24 Conclusions The findings indicate that the clients we surveyed are seeking a clear improvement in the quality of service provision for those with a dual diagnosis, both in mental health and substance misuse services in Croydon. The report identified that there are numerous clients in Croydon who see themselves as having a dual diagnosis, and that not all of these clients are receiving adequate care for both their difficulties. Services that are receptive to the needs of dual diagnosis clients, and empathetic, non-judgmental staff would be likely to result in better outcomes for dual diagnosis clients. Parallel Lines clients, a series of actions should be taken by commissioners and senior management within drug and alcohol and mental health treatment services. Those steps are summarised in the list of recommendations below, and are based on suggestions and solutions to problems identified by clients. Dual diagnosis clients spoke about their frustration at the difficulty in getting access to treatment services, and the fact that they had to attend two different services to address both their needs. They found that lengthy waiting times and challenging assessment processes made the process of getting help for their problems seem even more daunting. Clients stated that they find it frustrating when they are told that their mental health problems are caused by their substance use, when their experience is that the mental health difficulty preceeded the substance use problem. The clients were able to come up with a comprehensive list of changes that they would like to see implemented, in order to improve service provision and eliminate some of the gaps in services. It can be concluded that, in order to improve treatment outcomes for dual diagnosis 24 A Report on Dual Diagnosis Service Provision in Croydon