Healthwatch in Greater Manchester: Pathways to CAMHS

Healthwatch in Greater Manchester have released a major new report that shines a light on the experiences of people trying to access Child and Adolescent Mental Health Services (CAMHS). 

This substantial project gathered data from across all 10 Greater Manchester boroughs, seeking out views from children and young people, parents and carers, local groups, and health and care and education professionals. It was publicised and shared in each borough and in total almost 1200 people’s stories contributed to the comprehensive report, released today. 

Parents, carers, and young people told us that waiting times and uncertainty around who to contact were among the main barriers to accessing support, with a significant number of families waiting over one year between assessment and intervention leading to children’s deteriorating health. It also became clear that parents play a pivotal role in getting their children care, facing effects on whole family wellbeing, finances, and even their ability to work. 

Professionals themselves called for improvements across the board, and most rated their experience of the referral pathway as poor. 

Healthwatch in Greater Manchester have made a number of recommendations which they believe will lead to better outcomes for the children and young people in desperate need of care, as well as their families, and provide much needed information for professionals struggling to support patients on the pathway. 

Key Findings   

• The main barriers to accessing services cited by both parents/carers and children and young people were waiting times, uncertainty around who to contact, appointment times/availability and concerns around communication between staff.
• Most parents, carers, children, and young people told us it was difficult to find out how to get support and they were dissatisfied with information provided about the available options for support.
• The parental role is pivotal in getting a child access to care. Many parents we heard from were the driving force behind ensuring progress along the pathway.
• Accessing the CAMHS care pathway can have an overwhelming impact on the wider family's emotional health and wellbeing and can also negatively impact their work and financial circumstances.
• 95% of parents/carers were not kept up to date with the progress of their referral.
• We were told services were disjointed which resulted in contradictory, out-of-date information being shared, missing or incorrect information being passed between professionals and parents having to repeatedly share their story.
• Large proportions of families waited over 1 year between assessment and intervention, and lack of communication and support during the waiting period had significant impacts such as deteriorating health and missed schooling.
• Almost 80% of parent/carers told us they either accessed or considered accessing private care.
• Over two thirds of professionals told us their overall experience of the pathway was poor.
• Professionals call for improvements in an array of areas including communication, wait times, the referral process and more.

Recommendations

Improve awareness of mental health support services available to enable all stakeholders to make informed choices about where and how to access help and support

• Providing clear information about what support services are available (including CAMHS), what they do, what the thresholds are, and who they are appropriate for will ensure families are directed to the most suitable services in the first place. This will help to reduce challenges in accessing the pathway and in turn lead to fewer inappropriate referrals, which can result in unnecessary demand on some services. 
• Each Greater Manchester borough should make available a list of provision in their area. This local directory should also include details of self-help materials and support groups as well as information about the option to obtain a private assessment.
• A commitment to continued support by professionals for children and young people and parents/carers if a referral is rejected.

Provide clear information for families and other professionals on what the CAMHS Pathway is and what can be expected

• The majority of both parents/carers and children and young people told us it was difficult to find out how to get support, and over half of children and young people told us they didn’t understand what to expect at each stage of the pathway. Having easily accessible information available to both families and professionals will help to manage the expectations families have around what will happen. This in turn should ease families’ experiences and ensure staff working at various stages along the pathway can devote time and resources more effectively.
• Information should include how complaints/queries should be handled.

Action needed to ensure equal access to the care pathway

• Our findings suggest both families and professionals are concerned about the accessibility of the pathway. As well meeting young people’s accessibility needs, parental needs should be considered as we have identified the huge part the parental role plays in navigating care. More flexibility and adjustments should be considered in terms of the environment in which referral appointments take place and the times available. Care should be taken to ensure information and communications are accessible for families with additional needs. 

Create a Single Point of Entry for Greater Manchester 

• Having a Single Point of Access for children and young people, parents/carers and professionals, agreed by all providers, would help to resolve many of the issues reported; families not knowing where to go for support, services having been found to be disjointed, families having to repeat their story numerous times, issues with missing or inaccurate information being passed between services and issues with contacting CAMHS. A specification should be co-produced for this service to ensure the needs of all stakeholders are met. 

Improve communication and support during the waiting period

• The majority of parents told us they weren’t kept up to date with the progress of the referral and lacked support with their child’s health during the waiting period. 
• Communication was cited by parents/carers as being key to their ongoing understanding of the process. Good communication reduces frustration and allows for more informed choices (for example, if the likely wait time was felt to be too long). It also reduces the likelihood of parents/carers feeling overwhelmed. 

Treat parent/carers as equal partners in their child’s access to the Pathway

• We heard from many parent/carers who felt they had not been listened to or believed and had been ignored. We also heard how many felt they were not involved in decisions made about their child’s care. Addressing this and involving families in the care for a child or young person can have a positive impact on outcomes and in turn, ease the process for many families.