Engagement Report. Child and Adolescent Mental Health Services in Surrey

Engagement Report Child and Adolescent Mental Health Services in Surrey November 2014 Authors: James Holden Caroline Bedford Commissioning Project Officer, Surrey County Council CAMHS Project Officer, NHS Guildford and Waverley Clinical Commissioning Group 1

Executive Summary The Surrey Clinical Commissioning Groups and Surrey County Council are working in partnership to improve child and adolescent emotional wellbeing and mental health services in Surrey including prevention, early intervention and support through to clinical services. Prior to recommissioning our child and adolescent mental health services (CAMHS) in 2015 we undertook a stakeholder engagement process to what is working well and what could be improved. A broad range of stakeholders were invited to share their views and to give feedback about the current emotional wellbeing and mental health needs of children and young people in Surrey, the existing service provision and what is needed for the future. Engagement activities took place with children and young people; parent/carers; professionals working with children and GPs (as both key providers of healthcare but also as lead commissioners through CCGs). Views were sought through four targeted online surveys aimed plus a number of open engagement events. The engagement period ran from 30th July until 14 th October 2014. Stakeholders gave a detailed picture on the current need, how they thought current services were performing to meet that need and offered ideas that could improve meeting the emotional wellbeing and mental health needs of children and young people in Surrey. In total 428 stakeholders responded to the surveys. This was made up 237 to the multi-professional survey, 97 to the GP as Commissioners Survey, 68 parents and carers and 26 children and young people. 117 stakeholders also attended one of eight engagement events. This report details what we heard and highlights that children and young people in Surrey reported a wide variety of need. Stakeholders reported that CAMHS needs to provide a flexible service that can meet these wide-ranging needs. GPs as Commissioners felt areas of need that should be a particular focus for CAMHS were deliberate self-harm, psychotic disorders and anxiety disorders. Access to CAMHS was a key theme running through all the engagement data. Children, young people and their parents and carers emphasised the need for a service that provided appointments that were at a time that suited the young person. This often meant they wanted appointments in the evening and at weekends. Through the survey data schools seemed the most appropriate place to base CAMHS, however some children and young people were cautious of this as they felt it may draw attention to those accessing the service further stigmatising access. CAMHS is considered under resourced by the majority of stakeholders. Only 7% of GPs as Commissioners felt current funding for CAMHS was sufficient. It was thought that under resourcing had resulted in thresholds for accessing CAMHS being too high ; and many stakeholders commented on how they felt there was a significant level of unmet as a result. Stakeholders also stated a number of priorities for the service going forward. The majority of GPs as Commissioners felt that a single point of access for all mental health referrals was vital. Support for parents to help them manage behavioural needs that occur due to Autistic Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD) was seen as a high priority by the majority of stakeholders. Parents said that would like more information on what services were available and how to access them. Finally, the importance of partnership working was stated by stakeholders to achieve the best possible outcomes for children and young people. To meet all the needs of children and young people communication needs to improve between agencies and a holistic approach taken when assessing the need and providing services. Authors: James Holden & Caroline Bedford 04/11/14 2

Contents Page Introduction 4 Overall Responding Cohort 5 Comparison of Surveys 5 Multi-professional Survey 13 Children and Young Person Survey 17 Parents and Carers Survey 18 GP Survey 23 Key Headlines 26 Themes Identified 28 Access to CAMHS 28 Service Quality 28 Future priorities 29 Partnership Working 29 Annex 1: Detailed Engagement Event Analysis 31 Annex 2: List of Attendees at Engagement Meetings 37 Authors: James Holden & Caroline Bedford 04/11/14 3

1. Introduction 1.1. NHS Guildford and Waverly Clinical Commissioning Group (representing all CCGs in Surrey) and Surrey County Council are working in partnership to improve child and adolescent emotional wellbeing and mental health services in Surrey including prevention, early intervention and support through to clinical services. 1.2. Jointly we are aiming to re-procure child and adolescent mental health services (CAMHS) across Surrey during 2015 and this provides an opportunity to consider concerns and issues about current arrangements and how the service could be improved. 1.3. NHS Guildford and Waverley CCG led a public engagement between 30 July and 14 th October 2014, in collaboration with the other Surrey CCGs and Surrey County Council, to identify key priorities of GPs as commissioners of CAMHS, multi-professionals, parents / carers and service users. The approach has been as inclusive as possible with a webpage produced to inform commissioners, professionals and the public of engagement sessions taking place. Geographically, we have delivered engagement sessions in the East, Centre and West of Surrey combined with the promotion of online surveys for specific stakeholder groups. 1.4. There were six GP engagement sessions (one in each CCG area); nine engagement meetings (x5 for parents/carers, x3 for professionals and x1 for CAMHS providers) were held across the County in Reigate, Runnymede, Guildford and Leatherhead. The CAMHS Rights and Participation Team held a session for CAMHS Youth Advisors (CYA). Respondents were also given the opportunity to send responses via post or e-mail to the managers leading the engagement process. 1.5. A total of 428 responses were received to the four online surveys. The online surveys were created for the following stakeholder groups and the responses from each were: GPs as commissioners (97), Multi-professionals (237), Parents / Carers (68) and CAMHS service users (26) 1.6. A broad range of stakeholders were invited to share their views and to give feedback about the current emotional wellbeing and mental health needs of children and young people in Surrey, the existing service provision and what is needed for the future to inform the re commissioning process through a number of engagement opportunities during September 2014. At these events, stakeholders were asked to respond and discuss three topic areas. What are the current mental health and emotional needs of children and young people in Surrey? Consider mental health and behavioural disorders. Does the service provision as currently established and delivered, actually meet these needs? What are the gaps? How can we ensure that future services meet the needs that you have identified? What does good look like? What would it feel like? What, if anything, needs to change? What are the main priorities for 2015 and beyond 1.7. This report investigates similarities and differences between the responses from different stakeholders. Authors: James Holden & Caroline Bedford 04/11/14 4

Survey Analysis 1. Overall Responding Cohort The table below details the number of respondents to each of the four surveys. The multi-professional s survey had the most respondents with 237. 26 children and young people responded. The report from this point will rely heavily on percentages. When interpreting the percentages it is important to consider the differing numbers of respondents for each survey. One respondent to the children and young people s survey for example makes up 3.8% of the total cohort. One respondent of the multi-professional survey makes up 0.4% of the total cohort. Those stakeholders with smaller numbers of respondents are more vulnerable to statistical error. Not all question responses sum to 100% as on some occasions multiple responses were allowed. Number of Responses 250 200 150 100 50 0 237 97 68 26 Children and young people Parents/Carers Professionals GPs 2. Comparison of Surveys The following section compares those questions on the four surveys that were the same or very similar so we can compare the responses from each of the four stakeholders. 2.1. Emotional Wellbeing and Mental Health Needs 2.1.1. Children and Young People and Parents/carers Responses Figure 2 and 3 details how children and young people and parents/carers responded when asked do you have any of the following? and In the last 12 months, has a child or young person you care for had one or more of the following emotional wellbeing or mental health needs? respectively. The five most common needs reported by children and young people were Anxiety Disorders, Behaviour, Sleep Problems, Low Mood and Deliberate Self Harm. Parents/carers were more likely to choose a greater number of needs. Anxiety, ASD, Behaviour, School Issues and Self Esteem were the common needs reported by parents/carers. Authors: James Holden & Caroline Bedford 04/11/14 5

7 6 5 4 3 2 1 Children and Young People Parents/Carers 35.0% 3 25.0% 2 15.0% 1 5.0% Children and Young People Parents/Carers 2.1.2. Multi-professionals responses Multi professionals were asked In the last 12 months which of the following emotional wellbeing and mental health needs have been present in the children and young people you work with? As multi-professionals are likely to have worked with many children and young people this was displayed on a separate chart. Unsurprisingly multi-professionals have reported a larger selection of needs. ADHD, Anger, Anxiety, ASD, Behaviour and Self Esteem were reported by over 80% of multi-professionals as needs that have been present in the children and young people they work with. Authors: James Holden & Caroline Bedford 04/11/14 6

10 9 8 7 6 5 4 3 2 1 2.1.3. GP as Commissioners Responses GPs as Commissioners were asked a different question Pathways for which of the following conditions would you like CAMHS to provide a service? Over 90% of GPs as Commissioners felt that CAMHS should be providing a service for deliberate self harm, psychotic disorders and Anxiety disorders On the other end of the scale only a small proportion of GP respondents felt that CAMHS should be providing a service for toileting problems, developmental disorders and relationships 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Authors: James Holden & Caroline Bedford 04/11/14 7

2.2. Opening Hours of CAMHS 2.2.1. Daytime All respondents were asked Opening hours (Daytime Mon-Fri) what are your preferred opening hours for CAMHS? 10am-6pm was the most common response from each of the stakeholders. This was especially true of children and young people with 62% of respondents from this stakeholder choosing this time. 70% 60% 62% 50% 40% 30% 20% 10% 8% 10% 8% 7% 27% 28% 29% 21% 16% 18% 12% 12% 36% 31% 36% 13% 13% 8% 8% CYP Parents/carers Professionals GPs 0% 8am 4pm 9am 5pm 9.30am 5.30pm 10am 6pm None of these 2.2.2. Extended All respondents were asked Opening Hours (extended) - what are your preferred opening hours for CAMHS? 10am-8pm was the most common response for all stakeholders except GP s as Commissioners. This was especially the case for children and young people. Approximately a third of parent/carers and multi-professionals and 39% of GPs as Commissioners felt 9am 7pm was their preferred time Authors: James Holden & Caroline Bedford 04/11/14 8

60% 54% 50% 40% 39% 36% 33% 39% 40% CYP 30% 20% 10% 15% 19% 20% 15% 14% 21% 26% 12% 12% 5% Parents/carers Professionals GPs 0% 9am 7pm 9.30am 7.30pm 10am 8pm None of these 2.2.3. Weekend All respondents were asked Opening Hours (weekend) what are your preferred opening hours for CAMHS? The majority of all stakeholders felt that Saturday 10am 4pm were their preferred option. Children and young people had the largest variance between responses. 58% wanted Saturday opening times while 39% wanted the Sunday option. A large proportion of GPs as Commissioners (45%) wanted none of the times suggested in the survey 80% 70% 75% 72% 60% 50% 40% 30% 20% 10% 0% 58% 53% 43% 39% 23% 13% 16% 12% 5% 4% Sat 10am 4pm Sun 10am 4pm None of these CYP Parents/carers Professionals GP 2.3. Age Range of CAMHS All respondents were asked Age range for the service CAMHS is currently a service for 0-18 year olds. Would you support CAMHS based on the following age range(s)? Most of stakeholders felt CAMHS should be available for the 0-25 years age range, especially children and young people. 45% of GPs as Commissioners and 35% of other multi-professionals felt CAMHS should be based on the 0-18 age range only Authors: James Holden & Caroline Bedford 04/11/14 9

90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 77% 65% 49% 45% 43% 35% 21% 15% 10% 9% 7% 4% 6% 4% 4% 6% 0-18 Years 0-25 Years No Preference Other CYP Parents/carers Professionals GPs 2.4. Location of CAMHS All respondents were asked Location - where do you think CAMHS should be based? The parent/carer survey did not have this question. However the GP as Commissioners survey did in the appropriate format for this question. Children and young people were the most likely to tick multiple responses wanting the CAMHS services based in lots of different locations. Schools were the most common response with nearly 70% of children and young people wanting the CAMHS service based there. This was also the most common response for multiprofessionals. GPs as Commissioners were the least likely to tick multiple responses. They felt community hospitals were the best place for CAMHS to be based. 80% 70% 60% 50% 40% 30% 20% CYP Professional GP 10% 0% GP practices Schools (0-18) Colleges (16-18) Universities (18-25) Children s Centres Community Hospitals Hospitals Authors: James Holden & Caroline Bedford 04/11/14 10

2.5. Waiting Times 2.5.1. Urgent 45% 40% 35% 30% 25% 20% 15% 10% 5% 0% All respondents were asked Urgent Waiting times/referrals to treatment: Once an urgent referral has been accepted by CAMHS, what do you think is a preferred minimum waiting to be seen by CAMHS for treatment? The most common response for each of type of respondent was 1 day. Very few respondents felt the minimum time waiting for CAMHS for treatment should be more than 5 days. I day 2 days 3 days 4 days 5 days 6 days 7 days 8 days 8 days+ CYP Parents/carers Professionals GP 2.5.2. Routine All respondents were asked Routine Waiting times/referral to treatment: Once a routine referral has been accepted by CAMHS, what do you think is a preferred minimum waiting time to be seen by CAMHS for treatment? Nearly 90% of children and young people felt 3 weeks was the preferred minimum waiting time to be seem by CAMHS for treatment. The majority of parents/carers and multiprofessionals agreed with this. GPs as Commissioners were more likely to respond with 6 weeks as their preferred minimum waiting time for a routine CAMHS referral. 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 3 weeks 6 weeks 9 weeks 12 weeks 14 weeks 16 weeks 18 weeks 18 weeks+ CYP Parents/carers Professionals GP Authors: James Holden & Caroline Bedford 04/11/14 11

2.6. Transition All respondents were asked How would you rate current services for young adults requiring Support beyond the age of 18? A large majority of those respondents that had knowledge of these services felt they were inadequate. A large number of all stakeholders did not have the knowledge to answer the question however. 70% 60% 63% 50% 40% 30% 20% 10% 0% 45% 39% 39% 35% 35% 12% 12% 12% 4% 0% 1% 2% 3% 0% Excellent Good Adequate Inadequate Don t know CYP Parents/carers Professionals 2.7. Behavioural Needs Parents/carers and multi-professionals were asked an additional question Behavioural needs do you consider parenting support and behaviour management for children with ADHD and ASD to be:... Behavioural needs were seen as a high priority by nearly 60% of both Parents/carers and multi-professionals 70% 60% 50% 58% 60% 40% 30% 20% 10% 21% 28% 12% 8% 9% 4% Parents/Carers Professionals 0% High priority Medium priority Low priority Don't know Authors: James Holden & Caroline Bedford 04/11/14 12

Analysis of Individual Stakeholder Surveys and Events Not all questions on the four surveys were the same so comparisons cannot be made the following section presents and analyses the questions that were unique to each of the surveys. 3. Multi-professional Survey 237 multi-professionals responded to the multi-professional survey 3.1. Responding Cohort A wide variety of multi-professionals responded to the survey. The largest group were the other category. These were made up of professions such as speech therapists, voluntary sector organisations and school counsellors. Some of these could have responded in the more defined categories. 31% of respondents were a multi-professional from a health source. 84% of respondents came from public sector organisation 61 multi professionals attending the engagement events 1. Which profession do you work in? Answer Options Response Response Percent Count Health - Health Visiting 1.3% 3 Health - Nursing 8.9% 21 Health - GP 1.3% 3 Health - other 19.0% 45 Education - Teacher (including head teacher) 9.3% 22 Education - non teaching staff 5.5% 13 Education - Support Staff (e.g. educational psychologist) 8.0% 19 Early Years 2.1% 5 Social Care - Children's Services 8.0% 19 Social Care - Adult Services 2.1% 5 Housing 1.3% 3 Police 3.4% 8 Youth Support 5.9% 14 Domestic Abuse services 0.8% 2 Other (please specify) 23.2% 55 answered question 237 2. Which sector do you represent? Answer Options Response Response Percent Count Public 83.5% 198 Private 5.1% 12 Voluntary 11.4% 27 answered question 237 Authors: James Holden & Caroline Bedford 04/11/14 13

3.2. Referrals to services Multi-professionals were asked Which service do you most refer children and young people to? Multiple responses were allowed. Nearly 60% of multi-professionals referred children young people to CAMHS (Surrey & Borders Partnerships NHS Foundation Trust) Youth Counselling Service and Primary Mental Health Service were the next most common services that referred into by multi-professionals 63% of Education, Health and Social Care multi-professionals have referred into CAMHS (Surrey & Borders NHS Foundation Trust). Police and Youth Support multi-professionals have referred into this form of CAMHS less often. 7 6 57.8% 5 4 3 2 20.3% 20.3% 19.8% 14.3% 14.8% 1 9.3% 3.8% Primary Mental Health Service (Surrey & Borders Partnership Foundation Trust) CAMHS (Surrey & Borders Partnership NHS Foundation Trust) CAMHS Community Nurses Parent Infant Mental Health Youth Counselling Service Specialist CAMHS (eg Eating Disorder service, Learning Disability service) Don't know Other (please specify) 3.3. Children and young people s needs Multi-professionals were asked Do you agree that local CAMHS services are meeting the needs of the children and young people you work with? Sometimes was the most common response. However the scale did not include often or most of the time which may have been helpful to further categorising these responses. Very few respondents responded with Yes always or Never Authors: James Holden & Caroline Bedford 04/11/14 14

7 6 60.3% 5 4 3 32.9% 2 1 3.0% 3.8% Yes always Sometimes Rarely Never 3.4. Priorities Multi-professionals were asked about whether they felt three areas were a priority. The majority of all multi-professionals felt all the areas identified were a high priority. Support for parents of children with emotional wellbeing and mental health needs is an area especially where multi-professionals felt need to be a high priority. 8 7 66.8% 6 5 50.6% 59.5% 4 3 2 1 19.6% 27.4% 28.3% 14.3% 7.7% 7.6% 8.0% 6.0% 4.2% High Priority Medium Prioty Low Priority Dont know Support for parents of children with emotional wellbeing and mental health needs psychiatric input e.g. assessment, medication, therapeutic intervention) to support children with neurodevelopmental difficulties Parenting support and behaviour management for children with ADHD and ASD Authors: James Holden & Caroline Bedford 04/11/14 15

3.5. Qualitative Data from Survey and Engagement Event Surrey CAMHS Engagement report 2014 An initial sweep of the key themes was carried out on the open-ended responses What aspects or strengths of the local CAMHS service are valuable to you as a multiprofessional? (Open ended response) Advice and support was one of the most valuable aspects of the CAHMS Services to multiprofessionals Accessible and approachable service was also deemed as one of the main strengths of the CAMHS service quoted by some respondents Psychiatric and psychological assessments and expertise Multi-professionals valued the expertise and assessments CAMHS provided in regards to psychiatric and psychological needs of children and young people Liaising with schools multi-professionals felt CAMHS relationships with schools was a great strength of the service Peer Support Service Multi-professionals felt the chance for children and young people to share their experiences with peers and CAMHS youth advisers was invaluable Name one positive service aspect you would like to see more of Joined up working - Many respondents said the CAMHS service could work on its relationship with paediatric, disability and neurological services so it can meet the needs of children with a variety of complex needs. Collaborative working with paediatric speech and language services for difficulties such as selective autism and stammering when anxiety and self-esteem are often part of the picture would be useful Training for multi-professionals many multi-professionals valued the advice they got from CAMHS. They would also value the opportunity to learn about emotional wellbeing and mental health issues through training so they are less reliant on the service Timely Intervention CAMHS need to be able to treat urgent issues immediately. Name one service aspect that needs to change to make services more effective Criteria and early intervention the criteria for accessing CAMHS was consistently mentioned as the one thing that needed to change. Below are some of these direct responses I always hear that the child does not meet criteria. If left unsupported then these children often then meet the criteria months later The threshold is too high. More should be done to engage young people who are difficult to engage Lower the thresholds for referral, more flexibility to enable more referrals to be accepted Autistic Spectrum Disorder and learning disabilities Supporting those children and young people with autism or a learning disability was seen as a current weakness of the service Better communication communication was a key theme that was needed improvement. Examples of this include telephones being answered and communication between partners. Authors: James Holden & Caroline Bedford 04/11/14 16

More Staffing Multi-professionals argued that CAMHS do not have the capacity to meet the needs of the whole population. Children and young people that are very anxious often miss out on a service. 4. Children and Young Person Survey 26 children and young people responded to the survey 4.1. Responding Cohort Most respondents to the children and young person survey had accessed CAMHS before or were currently accessing CAMHS. 4 respondents had no experiences of the accessing the CAMHS service 73 respondents were 16-24 1. What are your experiences of accessing CAMHS services? Answer Options Response Response Percent Count Currently accessing CAMHS 19.2% 5 Accessed CAMHS within the last 6 months 26.9% 7 Accessed CAMHS over 6 months ago 34.6% 9 Experiences of family accessing CAMHS 3.8% 1 No experience of accessing CAMHS 15.4% 4 Other (please specify) 0 answered question 26 2. How old are you? Answer Options Response Response Percent Count Under 8 years old 0 8 to 11 years old 7.7% 2 12 to 15 years old 19.2% 5 16 to 18 years old 38.5% 10 19 to 24 years old 34.6% 9 Other (please specify) 1 answered question 26 Authors: James Holden & Caroline Bedford 04/11/14 17

4.2. Qualitative Data from Survey and Engagement Event Surrey CAMHS Engagement report 2014 The young people often reported having a positive experience with CAMHS. They talked about the good relationship they had with their worker and enjoyed that they got the time to feel better and leave when I am ready. CAMHS staff were described as caring, understanding and very kind by the children and young people that responded to this survey. Another young person described CAMHS as reliable, equitable, respectful and individualistic. CAMHS Youth Advisor groups were highlighted as a positive aspect that children and young people valued. A service that can reach more young people was requested by a number of the respondents of the survey, not just a service that works with those children and young people with the highest need. Shorter waiting times were also an area where young people felt improvement could be made. A 24 hour helpline service was requested by two respondents in the survey. 5. Parents and Carers Survey 5.1. Responding Cohort The majority of respondents were parents 1. Are you a parent, carer or family member? Answer Options Response Response Percent Count Parent 91.2% 62 Carer 1.5% 1 Family member 7.4% 5 Other (please specify) 1 answered question 68 5.2. Support Services Parents were asked in the last 12 months, where and who have you sought help from? Multiple responses were allowed. Help from GPs was accessed by nearly 75% of parents and carers this was followed by help and support from CAMHS (66%) and Schools (57%) Authors: James Holden & Caroline Bedford 04/11/14 18

8 7 6 5 4 3 2 1 74.6% 9.0% 7.5% 13.4% 56.7% 3.0% 10.4% 3.0% 6.0% 25.4% 9.0% 65.7% 32.8% Parents were asked an additional question Which of the following services does your child or young person access most frequently CAMHS (Surrey and Borders Partnership NHS Foundation Trust) was the most frequently used service by the young people of the responding parents. A large proportion of parents responded with Don t know 35.0% 31.8% 3 25.0% 27.3% 25.8% 2 15.0% 12.1% 1 5.0% 6.1% Primary Mental Health Service (Surrey and Borders Partnership NHS Foundation Trust) Community CAMHS (Surrey and Borders Partnership NHS Foundation Trust) 3.0% CAMHS Community Nurses (Virgin Care Ltd; First Community Health; CSH Surrey) Parent Infant Mental Health (Surrey and Borders Partnership NHS Foundation Trust) CAMHS (Surrey and Borders Partnership NHS Foundation Trust) Don't know Other (please specify) 5.3. Service meeting Need Parents were asked whether they felt their Local CAMHS service was meeting the needs of their child or young person Sometimes was the most common response. Compared to multi-professionals who were asked a similar question parents and carers were more likely to respond with never. Over 30% of parents and carers responded never compared to 4% of multi-professionals. However multi-professionals are likely to have worked with a number of children and young Authors: James Holden & Caroline Bedford 04/11/14 19

people and are therefore less likely to respond with the yes always, and never as the CAMHS service may have met the needs of some Children and young people they work with but not others. 45.0% 4 35.0% 3 25.0% 2 15.0% 1 5.0% 40.9% 30.3% 19.7% 9.1% Yes always Sometimes Rarely Never 5.4. Experience of Care and Support Parents were then asked a number of questions about the planning of their child or young person s support and their role in it. The first question was did you feel involved in your child s or young person s care plan? Nearly an equal number of parent and carers responded yes and no to this question. 45.0% 4 35.0% 3 25.0% 2 15.0% 1 5.0% 4 38.2% 21.8% Yes No Partly Parents were then asked if they agree with the following statements above. The highest response for each of the statements was disagree Only 17% of parents and carers were offered a parent/care assessment as part of the care planning process 47% of parents and carers felt their needs were not taken into account at the care planning stage Authors: James Holden & Caroline Bedford 04/11/14 20

5 45.0% 4 35.0% 3 25.0% 2 15.0% 1 5.0% 34.5% 47.3% 18.2% I felt my needs as a parent / carer were taken into account at the care planning stage 17.6% Surrey CAMHS Engagement report 2014 44.1% 38.2% I was offered a Parent/Carer's Assessment as part of the care planning process Parents were then asked if they felt they were kept up to date with changes to their child or young person's care plan Slightly more parents and carers responded no compared to yes. Agree Disagree Neither 45.0% 4 35.0% 3 37.3% 41.2% 25.0% 2 21.6% 15.0% 1 5.0% Yes No Partly 5.5. Help and Support Parents were asked What would help you to feel more confident about supporting your child or young person with their emotional wellbeing and mental health needs? Multiple responses were allowed Information about services and how to access/options for referral including self referral was the most common response. The least common response was support to set up and manage a self-help group or network Authors: James Holden & Caroline Bedford 04/11/14 21

8 7 74.1% 70.4% 6 5 5 4 38.9% 3 24.1% 2 1 Information about services and how to access / options for referral including selfreferral Information about specific emotional wellbeing and mental health needs More access to guidance and consultation from CAMHS professionals Signposting to selfhelp resources (websites, apps, helplines) Support to set up and manage a self-help group or network 5.6. Qualitative Data from Survey and Engagement Event Parents and carers valued the help and advice they received from the CAMHS service. Many respondents valued that the service allowed for their child or young person to speak freely to someone where they are not judged. They appreciated the understanding and caring nature of staff and their multi-professionalism when taking a child-centred approach Other parents and carers had a more negative experience of the service. Parents said that availability of the service was poor and there were long waiting lists. They said that though staff intentions were positive the service was understaffed to meet the need and demand there is in the community. Consistency was a theme that came up regularly. Parents had good experiences with some parts of the service while bad experiences with others. Some parents felt the service was always looking for excuses not to accept referrals and the eligibility criteria means more children in the end had to access tier 4 services Support for children with Autism Spectrum Disorder was a gap that was again identified by parents who wanted a service that could meet the emotional well-being and mental health needs of children and young people with this disability. The lack of support for parents and carers was also noted, Parents and carers found supporting a child or young person with a mental health issue was often very isolating. Authors: James Holden & Caroline Bedford 04/11/14 22

6. GP as Commissioners Survey 97 GP as Commissioners responded to the survey 6.1. Responding cohort GPs as Commissioners were asked where do they work 37% were based in the Surrey Downs CCG 4 35.0% 3 25.0% 2 15.0% 25.8% 37.1% 18.6% 1 5.0% 7.2% 6.2% 5.2% Guildford and Waverley CCG North West Surrey CCG Surrey Downs CCG Farnham GP East Surrey CCG Surrey Heath CCG 6.2. CAMHS Funding GPs as Commissioners were asked Proportionality - CCGs currently spend approx. 9 million a year (Specialist CAMHS and Targeted CAMHS) across Surrey, this represents approximately 6% of the total Mental Health budget. 7% felt this was a sufficient amount of funding. 71% of GP respondents said this was insufficient or wholly inadequate 6 5 52.7% 4 3 2 18.7% 22.0% 1 6.6% More than sufficient Sufficient Insufficient Wholly inadequate Don t know Authors: James Holden & Caroline Bedford 04/11/14 23

6.3. Priorities GPs as Commissioners were asked for following questions above about their priorities The most common response for both questions was high priority, but there was also a sizable number of GPs as Commissioners that responded with medium and low priority for the question about the CAMHS telephone support service for GPs as Commissioners Having a single point of access for all mental health referrals for children and young people in Surrey was seen as a high priority for over 60% of the GP as Commissioners respondents 7 64.4% 6 5 4 36.4% 3 2 28.4% 28.4% 21.1% High priority Medium priority Low priority No preference 1 8.9% 6.8% 5.6% 5. GP support - considering the current 6. Referral route - considering the current financial envelope, do you consider a financial envelope, do you consider a Single 'CAMHS Telephone Support service for GPs' Point of Access for all mental health to be: referrals for children and young people in Surrey to be: GPs as Commissioners were also asked about the following priorities 6 5 51.8% 56.5% 47.1% 4 3 2 1 24.7% 10.6% 30.6% 38.8% 4.7% 5.9% High priority Medium priority Low priority Improving Access to Psychological Therapies Support for Parents that have Children that do not engae with mainstream services Psychiatric input for children with special educational needs and disabilities Authors: James Holden & Caroline Bedford 04/11/14 24

Improving access to psychological therapies had the highest number of high priority responses by GPs as Commissioners Support for parents who have a child who is not engaged with mainstream services has the least amount of GPs as Commissioners responding as high priority, however a large number felt it should be a medium priority. 7. Looked after children GPs as Commissioners were asked Looked after Children how would you rate the current emotional wellbeing and mental health support available for looked After Children in Surrey? No GPs as Commissioners felt that provision for looked after children were excellent. Excluding don t knows the most common response was inadequate 6 5 49.4% 4 3 32.2% 2 1 13.8% 4.6% Excellent Good Adequate Inadequate Don't know 7.1. Outreach GPs as Commissioners were asked Outreach - how do you rate the effectiveness of current Surrey-wide outreach support (i.e. specialist support to manage patients more effectively and reduce unnecessary admissions)? Nearly 45% of GPs as Commissioners felt that current outreach support was inadequate. Only 15% felt that current outreach services were adequate or better Authors: James Holden & Caroline Bedford 04/11/14 25

5 45.0% 4 35.0% 3 25.0% 2 15.0% 1 5.0% 2.3% 12.8% 7.2. Qualitative data from Survey and Engagement Events Surrey CAMHS Engagement report 2014 GPs as Commissioners were asked considering the current financial envelope, please mention the top three things you want CAMHS to achieve for your patients: A rapid review of the data suggests that quicker referral times is one of the frequent responses by GPs as Commissioners as well as the capacity to support a wider range of children and young people, This is similar to other stakeholder responses in the other surveys. Some direct quotes related to themes are detailed below. increase provision for young people with low grade mental illness - we have no help for children for mild moderate depression low self esteem anxiety - there is a large cohort of patients we are not helping Early face-to-face assessment of patients following referral 44.2% 40.7% Excellent Good Adequate Inadequate Don't know Consistency seems to be a common theme. Many GPs as Commissioners say that would like a single key worker for each child young person and their family and for the frequency of this changing to decrease. Key Headlines 1. Children and young people report a wide variety of needs. The most common are low mood (40%), Anxiety Disorders (32%), Behaviour (32%), Sleep Problems (32%) and Deliberate Self Harm (32%). A smaller proportion of parents reported deliberate self-harm as a need suggesting that this is something that children and young people hide from parents and carers. Parents and carers are more likely to report Anxiety disorders (59%), ASD (45%) and behaviour (48%) compared to children and young people 2. Multi-professionals also report seeing a wide variety of needs with the children and young people they work with. ADHD (83%), Anger (82%), Anxiety Disorders (86%), ASD (83%) and Behaviour (89%) were the most common responses reported by multi-professionals. 3. Over 90% GPs as Commissioners felt the CAMHS should be able to deliver a service for anxiety disorders, psychotic disorders and deliberate self-harm. 4. 71% of GP as Commissioners respondents said current funding for CAMHS was insufficient Authors: James Holden & Caroline Bedford 04/11/14 26

5. Daytime opening hours of 10am-6pm was the most common response for all stakeholders. Saturday was also deemed the most appropriate day to open at weekends. The qualitative data suggests that stakeholders believe CAMHS should be a flexible service that can adapt to the needs of Children and young people, therefore opening times should reflect this 6. Children, young people (69%), parent and carers (61%) felt a school environment was the most appropriate location for CAMHS to be based. Community hospitals were also a common response for Children and young people (61%) and GPs as Commissioners (60%). 7. The preferred minimum waiting times for urgent referrals was 1-2 days for the majority of respondents (58%) and 3 weeks (65%) for routine referrals. Many respondents said the current length of time children and young people have to wait for a service is too long. 8. Transition services are described as inadequate by children and young people, parents and carers and multi-professionals. 9. Support for parents in behaviour management for children with ADHD and ASD is a high priority for multi-professionals, parents and carers 10. Multi-professionals were critical of current thresholds for accessing CAMHS. They felt a group of children were not having their needs met due to the high thresholds. The service needs more investment so CAMHS staff have the capacity to meet the emotional well-being and mental health needs of a larger cohort of children and young people 11. 47% of parents and carers felt their needs were not taken into account at the care planning stage and very few were offered a Parent/carer assessment during the care planning process (18%). 41% said they were not kept up to date with changes to their child or young person s care plan. 12. A single point of access was considered as a high priority by the majority of GPs as Commissioners (64%). Improving access to psychological therapies was also considered as a high priority (51.8%). 13. Current outreach services and services for looked after children are considered inadequate by GPs as Commissioners. 14. Early help is deemed vital by GPs as Commissioners. No help for mild and moderate issues means that in the future more children and young people enter tier 3 and 4 services. Authors: James Holden & Caroline Bedford 04/11/14 27

1. Key Themes Identified The next section details the summarises the key themes identified through 1.1. Access to CAMHS was a key theme running through all of the engagement data. This was made up of four sub themes. 1.1.1. Opening Hours All respondents to the online survey were asked about opening hours of a daytime, extended and weekend service. Children and young people conclusively felt 10am -6pm was the most appropriate opening hours for CAMHS, with the extended service being open until 8pm. The majority of other respondents agreed with the 10am 6pm day time opening hours, however were more likely to state 9am to 7pm as their preferred extended opening times. The majority of all respondents also felt CAMHS should be available on Saturday. The qualitative data also concluded that the CAMHS service should be available in the evening. One parent when asked Name one service aspect that needs to change to make the service more effective responded more appointments available after school 1.1.2. Thresholds one of the most common themes in the qualitative data from the engagement event and the survey was the thresholds when accessing CAMHS. Many stakeholders felt that the thresholds were too high and in turn there were a large number of children and young people that CAMHS was not reaching. One multiprofessional said I always hear that the child does not meet the criteria. If left unsupported these children often then meet the criteria in a few months. Referrals for issues such as severe anxiety were not accepted by CAMHS, but there is large and increasing demand for support due to increasing pressures on children and young people due to the internet and exam pressure. 1.1.3. Location Children and young people felt that CAMHS should be available in a variety of different locations. For both children and young people and multiprofessionals schools were deemed the most appropriate place for the CAMHS to be based with 69% and 61% of respondents for two different types of stakeholder respectively. Children and young people and GPs as Commissioners were also in favour of basing CAMHS in community hospitals. Schools were often seen by respondents as important tier 1 services in meeting the emotional wellbeing and mental health needs however they needed communication from CAMHS about how best to support students. 1.1.4. Reduce stigma The qualitative data from the engagement events demonstrated that there was a need to reduce stigma to increase access to CAMHS. This could be achieved by more online services for kids and parents and to educate multiprofessionals about what is already available such as Young Minds. More community based services - that 'normalise ' the access for help - churches / community hub. One parent commented that she had not followed through with a referral as she did not want her child to access a service that had mental health in the title. 1.2. Service Quality The next key theme was service quality. Many respondents said that they felt there were problems with the quality of the current service offer and offer solutions about how this can be improved. 1.2.1. Waiting times many respondents felt that children and young people had to wait too long for CAMHS. One multi-professional said Waiting times must be improved by increased funding for more consultants who must have also have adequate Authors: James Holden & Caroline Bedford 04/11/14 28

administrative support to maximise the time they can spend with service users. Respondents were asked what should be the minimum waiting time from referral being accepted to treatment. The majority of all stakeholders felt urgent referrals should receive treatment within 2 days and routine referrals seen for treatment within 3 weeks. 1.2.2. Autism Spectrum Disorder (ASD) Some respondents felt the service was not able or did not want to meet the mental health or emotional wellbeing needs of children and young people with ASD. A parent said they need to be more willing to help those with ASD and not use it as an excuse not to treat and support. 58% of parents and 60% of multi-professionals felt that offering parenting support and behaviour management for children with ADHD and ASD should be a high priority 1.2.3. Under resourced many respondents commented on the good intentions of CAMHS staff but felt they were overworked and the service was understaffed. This had a number of consequences for children and young people who were receiving a service. A CAMHS employee stated that we aim to provide high quality services to all families to see, but pressure on clinician time means we are sometimes having to offer short term intervention, and discharge people early on in treatment. We are resilient and resourceful but severely under staffed. Only 7% of GPs as Commissioners felt that current funding for CAMHS was sufficient. 1.3. Future Priorities Respondents were also asked about a number of priorities as well as volunteering the information during the engagement events and open response survey questions 1.3.1. Single point of Access 64% of GP as Commissioners respondents felt that a single point of access for all mental health referrals for children and young people was a high priority. During the engagement the importance of multi-professionals knowing where to refer was made clear as some said the current services cause confusion who and when should refer into CAMHS or other services. 1.3.2. Support for Parents many respondents from all cohorts felt that support for parents should be a high priority. 67% of multi-professionals said that support for parents of children with emotional wellbeing and mental health needs. The Care Act 2014 will mean from April the service will have to provide assessments for parents and carers. Parents sometimes felt they were made to feel responsible for the emotional well-being and mental health needs of their child. The current service was accused by a few respondents of not listening or believing parents. One parent summed up these feelings CAMHS multi-professionals believing what parents say and being open to some parents doing their best and not being the root cause of their child s problems. Over 70% of parent and carers said that what they would value is information about services and how to access/options for referral including self-referral and more access to guidance and engagement from CAMHS multi-professionals. Only 24% said they would value support to set up and manage a self-help group or network 1.3.3. Outreach work - The effectiveness of current Surrey wide outreach support is considered as inadequate by the majority of GPs as Commissioners who were informed enough to have an opinion. By increasing investment and the quality of outreach work it is argued that universal services will be made more aware of those children and young people 1.4. Partnership Working Many respondents raised the issues about how the service interacted with other organisations Authors: James Holden & Caroline Bedford 04/11/14 29

1.4.1. Communication Better communication was seen as vital between CAMHS and other agencies. A number of multi-professionals commented that they often did not know of CAMHS involvement with a child or young person they were working with. The inadequate communication between paediatric services and CAMHS was one area that was referenced frequently throughout the qualitative data. 1.4.2. Rejected Referrals Multi-professionals especially said they would like to have the reasons for refusal of referrals better explained. As well as this they feel CAMHS should at least offer some guidance about how to meet the emotional wellbeing and mental health needs of these children and young people even if they are not eligible for CAMHS. One multi-professional respondent summed up this theme succinctly clearer explanation of why referrals are refused and how best to support children in these circumstances. 1.4.3. Complex needs The importance of joined up and collaborative working was deemed especially important for meeting the needs of children and young people with complex needs. For example working with speech and language services for difficulties such as stammering when anxiety and self-esteem are part of a child or young person needs. Authors: James Holden & Caroline Bedford 04/11/14 30

Annex 1 Detailed Engagement Event Analysis Surrey CAMHS Engagement report 2014 The data for the engagement events was analysed separately in detail. These responses have been included when developing the key themes in the previous section. GP feedback key questions: What are the current mental health and emotional needs of children and young people in Surrey? Consider mental health and behavioural disorders. The GP s considered a number of mental health and emotional disorders and the following were commonly mentioned; Asperger s and ASD, anxiety, self-harm, body image, suicidal thoughts, addiction smoking, alcohol, drug misuse, anger management, exam pressure, sexuality, sexual behaviour, bullying and cyber bullying, eating disorders. Does the service provision as currently established and delivered, actually meet these needs? What are the gaps? The GP s felt that lack of early intervention and hence reactive/crisis response and more children presenting at A&E with drug, alcohol problems, self-harm was a big issue. These children aren t always assessed by a CAMHS team and so are discharged back to their GP rather than Tier 3 services follow up. Access issues to CAMHS clinics due to high thresholds was seen as an issue. GP s wanted clear guidelines regarding the requirements of the service to avoid patients being batted about between services. GP s thought that introducing an IAPT (Improving Access to Psychological Therapies) service for children would be helpful, as it has proved for adult mental health. GP s agreed that a single point of access was most important, responsible for making sure the child is directed to the right part of the service. A GP cited increase provision for young people with low grade mental illness - we have no help for children for mild to moderate depression, low self-esteem, anxiety - there is a large cohort of patients we are not helping A GP felt there was very poor support at present for late teens / early 20's who have learning difficulties, or were not picked up at school. They encounter problems when out in the real world. How can we ensure that future services meet the needs that you have identified? What does good look like? What would it feel like? What, if anything, needs to change? What are the main priorities for 2015 and beyond? The majority of GP s agreed that the age should be extended to 25 years; or at least 21, with the transition to adult service to be addressed. It was felt that the service provider should organise the transition, instead of young people being sent back to their GP by CAMHS, to ask for a re-referral to adult mental health services. It was felt that a single point of access which is responsible for making sure the child is directed to the right part of the service is needed. The majority of GP s at the GP engagement event (57%) responded that ASD and ADHD referrals should go to CAMHS for initial diagnosis, with behavioural pathways addressed. Authors: James Holden & Caroline Bedford 04/11/14 31