To the best of our knowledge, there is not currently a resource such as the Treatment Journal in existence whereby young people and families under the care of a specialist eating disorder team are provided with a resource which contains information advice as well as allows them (if they want to), to document specific elements of their care. This resource forms an active part of treatment such that it houses care plans, goals for intervention, outcome measures to monitor and track progress, section for therapeutic notes/ leaflets etc. Furthermore, the Treatment Journal has involved a high degree of co-production with young people and parents and carers who are active service users as well as those who have been discharged from the service writing and helping to develop the resource.
Please briefly describe your project, group, team or service, outlining what you do and why it makes a difference.
When a young person and family first access the Hampshire CAMHS Eating Disorder service, there is a lot of information to take on board and many elements to a family’s care. This can feel overwhelming and confusing. Following completion of regular quartile service evaluations which involve gathering qualitative feedback from young people and their families about their experiences within the team, it was identified that communication from the team directly with young people and families was an area for development. Specially, families fed back that the volume of information was at times overwhelming and it was hard to understand or retain information relating to all the varying aspects of care being implemented or offered. Furthermore, as there are often multiple clinicians involved within a young person’s care, it can sometimes be difficult for clinicians to be aware of what information families have been provided and in what format. As a result of this, the ‘My Treatment Journal’ project was developed.
Every young person and family that is assessed and accepted into the service for further intervention is provided a Treatment Journal. This folder has different sections containing all kinds of information, both generally about the Eating Disorder service and specifically about their care. The aim of the folder is to provide a useful and complete resource which not only provides information and advice but also contains details about their specific care and allows them to, at a glance, access any information about the various aspects of their care. Families are advised to keep the folder safe and bring it with them to each appointment so that it can be updated, e.g., information or therapy worksheets can be filed, outcomes and goals can be rated, any changes to the care plan or menu plan documented, physical health observations monitored.
The different sections of the folder include; A welcome, team locations and contact numbers, Care plans, Goals and Routine Outcome Measures, Meal Plans, Resources, Hints tips and information, Parent Programme, Group Programme, Appointments, Space for Therapy Notes/ handouts etc. The Treatment Journal concept was initially proposed by a clinician, however young people and parents accessing our service and those who have graduated/ been discharged from the service helped to co-produce the Treatment Journal and were involved from the outset; agreeing whether this was a viable project to develop and pursue then co-working on the concept and design then leading on the production of the content and supporting with the delivery and evaluation of the project. Although the project was only officially launched in May 2019, feedback from young people, parents/ carers and clinicians is hugely positive that this is an accessible, valuable and helpful resource.
Some of the specific feedback from young people ad parents/ carers include comments such as: “ I know exactly what I can expect when I come to my appointments. I know who is doing what and I know what I’m working towards” “ I like having everything in one place, it makes everything feel more manageable and that the team have got all bases covered” “I can see that young people and families feel empowered by having access to information and recordings of their work with us such as their goals, outcomes, care plans and menu plans”. The advantages and benefits of the folder include; – Consistent, high quality information, advice and guidance is provided to all young people and families. Ensures all families are aware of the support and services available rather than relying on using flyers in the waiting room, email correspondence or on clinician memory to inform them. – The content of the folder was written by young people and parents/ carers so contains information that is useful from a service user perspective not just from a clinical perspective. – If multiple clinicians are involved in a young person’s care, each clinician, regardless of discipline or role, can easily support progress and contribute to care plans, monitor and track goal progress (without having to check digital records which currently are not accessible to young people and require printing out each time). – Young people and families report feeling more proactive and empowered in their care.
What makes your service stand out from others? Please provide an example of this.
To the best of our knowledge, there is not currently a resource such as the Treatment Journal in existence whereby young people and families under the care of a specialist eating disorder team are provided with a resource which contains information advice as well as allows them (if they want to), to document specific elements of their care. This resource forms an active part of treatment such that it houses care plans, goals for intervention, outcome measures to monitor and track progress, section for therapeutic notes/ leaflets etc. Furthermore, the Treatment Journal has involved a high degree of co-production with young people and parents and carers who are active service users as well as those who have been discharged from the service writing and helping to develop the resource. Here are some of the unique and specific features of the Treatment Journal: The sections include; – Welcome to the team; who we are and what we do as well as a welcome and orientation to the folder. This information was written by a parent with lived experience and contributed to by clinicians within the team.
There is also a welcome to the service for young people, written by young people who have accessed the service. This section also includes some frequent FAQ’s which have been responded to by young people, parents/ carers and clinicians. – Team Locations and Contact Numbers. This includes useful information about parking at different clinic sites (and even what shoes to avoid in the rain!) – Care Plan; This section would include a copy of the young person and family’s individualised care plan which states all agreed components of care that the family, EDT and others may contribute to, along with review dates for care plans. This section also includes information about who is in the individual’s care team, their job role (with explanation) and contact details. – Goals and Outcome Measures; This section includes routine outcome measure tracking sheets such as goal-based measures (CAMHS IAPT routine outcome measures), which young people (or families) can track regularly at each appointment they attend. If other outcome measures are used (such as session rating scales or outcome rating scales) copies are kept within the file to ensure young people and families are able to see and keep track of their progress. This section also includes an encouraging and motivational letter from a young person which talks about not giving up hope, having goals and dreams and to strive for living a life free of the eating disorder. – Menu Plan; This section includes the current eating plan that a young person may be required to follow along with any other dietetic advice or guidance. If there are changes to the plan, new and updates plans replace the old plan within this section. – Parent Support; This section provides information about the different parent support programme we have in place. This includes details of; parent support groups (including times, dates and locations for the year), free parent psychoeducation mornings (including times, dates, locations and details of how to book on), free parent skills 2-day workshop (including time, dates, locations and how to book on).
This section also includes details of sibling support that is available within the service. This section was written by parents with lived experienced who facilitate the parent support groups and also co-facilitate the psychoeducation morning and skills workshops. – Resources; This section includes lists of different types of resources for young people ad families including; books, websites, apps, podcasts (of parents with lived experience talking about different topics), videos (of eating disorder clinicians talking about a number of topics) and downloads. This section also includes a link to a short film which was made by young people accessing the service. Seven young people worked with a professional film company; they wrote the storyboards, created the resources, write the script, did the voice overs, chose the backing music, chose the film title and completed the filming. (The professional film company did the edit only). The link to the film is: https://vimeo.com/306136147 – Hints, Tips and Information. In this section, there are also some specific information sheets that were written by young people open within the service for young people on topics including; how to manage and what to tell your friends if you have an eating disorder, how to manage school or college, how to manage exercise and activity during recovery, what you need to know if you need to go to a paediatric ward, what you need to know if you need to go to a mental health hospital. – Parent Programme and Sibling Support;
This section includes information on all aspects of parent and sibling support including but not limited to; parent support groups, sibling support groups (times, dates, locations), parents psychoeducation sessions, parent skills workshops and the online parent resources that our service has produced. All parent support is facilitated or co-facilitated by parents with lived experience. This section of the folder was written by parents with lived experienced who facilitate the parent support programme. – Young Person group programme; This section provides details of all the different groups that are offered within the service. This includes but is not limited to; body image and self-esteem, anxiety management, The Decider (an emotional coping skills group), Snack Out (a social eating group) and Flexible Thinking (a cognitive remediation therapy group). There are leaflets on each group which explain the purpose, an overview of the content and the advantages of how these groups can help. Explanations about when young people can access the groups (i.e., at what stage of recovery) as well as comments from previous attendees about how they found the groups. These leaflets were co-produced with young people open to our service who have taken part in the group programme. – Appointments; There is also an appointment sheet which can be filled in so that families are aware of where and when their next appointment is and who the appointment is with.
How do you ensure an effective, safe, compassionate and sustainable workforce?
Young people (and their families) who experience eating disorders are some of the most vulnerable; research and evidence highlights both the complexity and risk with the shocking and sad statistic that eating disorders are associated with the highest mortality rate of any psychiatric disorder. Therefore it is imperative that we offer a high quality, safe, evidence based and effective service. It is also imperative that our staff (both clinical and non-clinical) engage in regular supervision and also training and CPD opportunities. As an NHS service we have clear policies and expectations that we adhere to relating to staff attending training, and receiving regular clinical and line management supervision. This is reflected in our CQC grade of Good and outstanding for care.
Within the eating disorder team we have created several opportunities for team learning and supervision also which include; weekly team meetings, once a month team reflective practice session, once a month a shared learning slot (whereby team members can present on any training they have completed or journal articles they have read), monthly visitor slot (whereby external professionals are invited to share with us information about their service/ practice). We also have a monthly team shared lunch as promotion of staff wellbeing, team cohesiveness and working is vital for wellbeing. Regular team away days which focus on service development and delivery as well as staff wellbeing are held throughout the year. Hampshire CAMHS also has a collaboration with Hampshire Cultural Trust and opportunities to engage in ten week wellbeing initiatives such as singing lessons, art classes and drama classes are available for free to staff working within Hampshire CAMHS. Eating Disorder team members are encouraged to attend and complete regular training which is identified in monthly line management and monthly clinical supervision as well as during annual appraisal in line with personal and professional development objectives. This includes both mandatory and additional specific training related to eating disorders and mental health more generally. As our service is part of the CYP IAPT programme, we have had clinicians complete the following IAPT courses; Transformational Leadership in Child and Young People’s Mental Health Services and CYP-IAPT Family Therapy for Eating Disorders. All team members have completed the National Maudsley FBT for Eating Disorders as per the Access and Waiting Times Standard document of best practice for CYP Eating Disorders. Members of the team are also completing the Sussex Partnership Hampshire CAMHS Level 1 in Family and Systemic Therapy, which is a primary therapeutic approach in the treatment of eating disorders.
Recruitment of staff is important to us as a service; fostering creativity and remaining open and thoughtful to the strengths that all individuals can offer is important. We were the first team within Hampshire CAMHS to employ a parent with lived experience of an eating disorder as a parent support worker. Her role is unique in that she leads of the parent programme and offers individual as well as group parent support plus facilitates and delivers the parent psychoeducation and skills workshops. Our parent with lived experience also recruits other parents with lived experience to work on projects such as the Treatment Journal. For our young people, we recruit graduate young people (those who have been discharged) as ACE (Advice, Consultancy and Experience) participants to work with us within service. This role includes, sharing their journey with young people and parents/ carers, co-facilitating teaching and training with clinicians to other professionals and parents/ carers, supporting with recruitment of new staff (e.g., sitting on interview panels), participating in service development and delivery (such as making resources, reviewing resources, providing and collating feedback on the service, advising on the service). Young people and parents who work with us in this capacity are all informally interviewed to consider their health and wellbeing. This is reviewed regularly before understanding any project or initiative. Support/ supervision is offered throughout to all participating by the Lead Nurse of Lead psychologist.
Who is in your team?
Assistant Psychologist B4 1WTE CBT Therapist B7 1WTE Consultant Psychiatrist 0.5WTE Dietician B7 0.8WTE Family Therapist B8A 1WTE Family Therapist B8A 0.8WTE Clinical Psychologist B8A 0.6WTE Clinical Psychologist (BANK) B7 0.2WTE Nurse Specialist B6 1WTE Nurse Specialist B7 0.8WTE Nurse Specialist B8A 0.8WTE Nurse Specialist B8A BANK Occupational Therapist B7 0.8WTE Senior Support worker B5 1 ST 6 Child Psychiatrist 0.8 Support Worker B4 BANK Team Manager B8A 1WTE Admin B4 1WTE Admin B3 1WTE
How do you work with the wider system?
As a virtual team that covers Hampshire including all 8 of the Hampshire CAMHs localities and clinics, we work closely with our Tier 3 generic CAMHS colleagues, particularly to support young people and families that may need to access both services. To support transition or joint working we ensure; having a link clinician attached to each Tier 3 team, consultation, joint initial assessments, regular CPA’s are held. Young people with eating disorders are often physically compromised, we work closely with a number of paediatric and health care settings across Hampshire. We have produced accessible literature and resources for services about; how to spot an eating disorder, the NICE guidance on medical management of young people with eating disorders as well as produced promotional material about our service; that anyone can refer (inc self-referral) and details of our consultation line.
We work with and alongside many different organisations and agencies for collaborative care, including but not limited to; social care, education, statutory organisations and voluntary sector organisations. We ensure that all young people and families have care plans and risk assessments which, with consent, are shared with relevant others to enhance and facilitate joint working for the best interests of each young person and family. We also offer regular and free training and support to parents/ carers and professionals (both those open to the service as well as anyone else who would be interested in or benefit from training) on ‘How to support a young person with an eating disorder’ and ‘how to boost body image and self-esteem’. These 45minutes long workshops have been filmed and are available for anyone to freely access via our website: hampshirecamhs.nhs.uk
Do you use co-production approaches?
The Treatment Journal project involves a high level of co-production with both young people and families of those accessing our service. Young people and parents accessing our service were involved from the outset; agreeing whether this was a viable project to develop and pursue then co-working on the concept, design, content, delivery and evaluation. Focus groups were held to explore and decide the content and design. Parents with lived experience wrote the following sections; Welcome to the Treatment Journal and the service, Information about the team, Resources, Hints tips and information and the Parent programme. Young people produce the following literature; Welcome to the Treatment Journal and to the service, a letter to young people about goals, ambition, hope and recovery, Resources, Hints tips and information and the Young Person group programme. Within the resources section, a link to a film made by young people for young people is included. Seven young people worked with a professional film company; they wrote the storyboards, created the resources, write the script, did the voice overs, chose the backing music, chose the film title and completed the filming. (The professional film company did the edit only). The link to the film is: https://vimeo.com/306136147
Other sections of the Treatment Journal which included standardised service proformas and documents (e.g., menu plans, care plans, outcome measures) all had forewords and explanations of the sections and paperwork written by young people and parents with lived experience. We were the first team within Hampshire CAMHS to employ a parent with lived experience of an eating disorder as a parent support worker. Her role is unique in that she leads the parent programme and offers individual as well as group parent support plus facilitates and delivers the parent psychoeducation and skills workshops. Our parent with lived experience also recruits other parents with lived experience to work on projects such as the Treatment Journal. For our young people, we recruit young people (those who have been discharged) as ACE (Advice, Consultancy and Experience) participants to work with us within service. This role includes, co-facilitating teaching and training with clinicians to other professionals and parents/ carers, supporting with recruitment of new staff (e.g., sitting on interview panels), making resources, reviewing resources, providing and collating feedback on the service, advising on the service. Young people and parents who work with us in this capacity are all informally interviewed to consider their health and wellbeing. This is reviewed regularly before understanding any project or initiative. Support/ supervision is offered throughout to all participating by the Lead Nurse of Lead psychologist
Do you share your work with others? If so, please tell us how.
All quartile service evaluation reports are shared with commissioners and stake holders. We are part of QNCC network and regularly take part in peer review exercises which include sharing of our performance and activity data, pathways and resources. We have also presented our work at the National Child and Young People’s Eating Disorder Conference in London 2018 and the International Eating Disorder Conference in London, 2018. We are also signed up to Life QI (https://www.lifeqisystem.com/) which is an online platform originally developed as part of the South West Patient Safety Collaborative but is now a national platform. It assists frontline health and social care staff in running quality improvement projects and to share ideas for improved service user experience and service delivery. We have logged the Treatment Journal as a quality improvement project which means that all other users of Life QI are able to access, share and benefit from this project; seeing it’s conception, the rational, driver diagrams, outcome measures and evaluation. In 2018 we ran a year-long targeted campaign called The Everybody Campaign which sought to; – Raise awareness and promote understanding of eating disorders; the signs and symptoms, the impact and where and how to access specialist eating disorder help and advice – Promote compassion and empathy for those living with an eating disorder and those caring for someone with an eating disorder This campaign involved a number of inclusive, innovative and aspiring projects and events which sought to engage as many young people, members of the public and professionals as possible.
Examples of initiatives included; producing “what to look for” resources around signs and symptoms which were disseminated to every school, GP practice and school nursing team in Hampshire, monthly newsletters for schools with articles and ideas of activities to engage young people which address and help discuss important health and wellbeing topics (such as self-esteem and self-image), a primary and secondary school aged conference, a Professionals conference as well as many more creative and fun projects. All resources and activities as part of the campaign are freely available on our website. The Everybody Campaign was “highly recommended” at the National Positive Practice Awards in 2018.
What outcome measures are collected, how do you use them and how do they demonstrate improvement?
For the Treatment Journal a subjective feedback questionnaire was developed. Feedback focused on: Utility (i.e., how useful is the folder; does it aid your treatment), accessibility (i.e., is it pitched at right level and is there enough information/ detail?), likeability (i.e., do young people and families like the folder as a resource and therapeutic aid?), features of the Treatment Journal that are most liked, Suggestions and recommendations for improvements. Since the Treatment Journal launched at the beginning of May 2019, 10 young people have been assessed and accepted for treatment within the clinic & provided with a Treatment Journal. 100% of young people and parents and carers rated the folders as ‘very useful’ or ‘quite useful’ in aiding their treatment. 90% of young people parents and carers rated the information being pitched at the right level ‘very much’ or ‘quite a lot’. 100% of young people and 100% of parents/ carers liked the folders ‘very much’ or ‘quite a lot’. Features that were most liked ; information about what to expect from the service, the personal touches from other young people, the hints and tips sheets and having everything/ all the information in one place.
Comments included; “ I know exactly what I can expect when I come to my appointments now I’ve read the folder. I know who is doing what and I know what I’m working towards” “ I like having everything in one place, it makes everything feel more manageable and that the team have got all bases covered” “ So helpful to not have to try to remember everything as everything we need is in one place” “Such thoughtful touches, you can tell whoever has written this has been in our shoes which gives hope that there is light at the end of the tunnel”. Suggestions and recommendations for improvements include; – Some “What to do if my child won’t eat” guides in the resources section – More information on other associated mental health difficulties such as depression, anxiety, low self-esteem, poor body image. In respect to outcome measures and evaluation in the team more generally, we use a number of standardised psychometrics and routine outcome measures including; RCADS (Revised Child Anxiety and Depression Scale), SDQ (Strengths and Difficulties Questionnaire), EDE-Q (Eating Disorder Examination Questionnaire), Score-15 (a systemic based measure), the CHI (a patient satisfaction questionnaire) and the EDI-3 (The Eating Disorder Inventory).
A number of other psychometrics are also used for specific presenting difficulties if indicated. A number of session by session measures as also used within clinical practice which include; goal based measure (way of tracking weekly progress of goals), Session Rating Scale (a subjective rating of how useful the session was) and the Outcome Rating Scale (a subjective measure of how life is going week on week). These measures are tracked regularly (depending on frequency of appointments) and are kept within the Treatment Journal so young people and parents/ carers are able to monitor and view their progress. Tracking regularly allows young people and parents/ carers to identify when things are going well as well as any problems/ barriers which can be discussed in clinic to find a way forward. At care planning review meetings, the goals are reviewed to ensure that progress is being made or to make new care plan actions to address any difficulties identified. Use of goals and outcome measures also helps with discharge planning.
Has your service been evaluated (by peer or academic review)?
Our service is reviewed and assessed both internally and externally through CQC and QNCC. The organisations recently received “Good” overall and “Outstanding” for care. QNCC is a peer review framework which we are active participants.
How will you ensure that your service continues to deliver good mental health care?
Regular evaluation of the service performance is critical; this not only includes productivity and outcome data through clinician systems monitoring reports but also the subjective qualitative feedback by those who access the service, those who work with the service and those for work for the service. The Eating Disorder Team completes quartile service evaluation reports which includes this level of qualitative feedback. The data and reports generated are shared with senior managers and commissioners and other stakeholders which in turn help to think about development of service provision. Having clear targets and strategies which a number of people contribute to helps to ensure we are delivering effective, safe and high quality care.
There is a clear leadership and supervision structure within the eating disorder team with; a team manager and lead clinicians for all disciplines including; a lead nurse, lead Clinical Psychologist, lead family and systemic psychotherapist and lead psychiatrist. This scaffolding ensures that any chances within the team are supported by a platform of qualified and experienced clinicians. External to the team, there is a solid and clear leadership structure involving, general manager, head of service and clinical lead. There are regular meetings between the lead clinicians and senior management to share good practice, areas for development, challenges and for general communication and support. In respect to sustainability of the Treatment Journal, there is a project lead (Dr Emily David) and its implementation is supported by a number of other clinicians as well as parents and young people who have a participation role within our service.
What aspects of your service would you share with people who want to learn from you?
The challenges in respect to the Treatment Journal have included finding the time and protecting the time to co-ordinate and facilitate the different facets of the journal. The process of having a number of people involved in developing the content has protracted the estimated time we had wanted to launch the project. There have been challenges when there have been differences of opinion about how to present information or what should be included. This led to regular consultation to additional young people or parents/ carers to ensure that feedback was representative and inclusive. There was an acknowledgement that this is a new project which would require on-going development to which everyone was accepting and understanding.
Commissioner and providers
Commissioned by (e.g. name of local authority, CCG, NHS England):
Provided by (e.g. name of NHS trust) or your organisation: Sussex Partnership NHS Foundation Trust
Brief description of population (e.g. urban, age, socioeconomic status):
Hampshire is the third largest county in England with a population of 1.2 million, 87% live in urban areas although only 10% is classified as urban. The population of Hampshire is estimated 1,276,800 (Office National Statistics 2014) Hampshire is the tenth least deprived principal authority in England (out of 149). However Havant and Gosport together with the unitary authorities of Portsmouth and Southampton are ranked in the bottom half of the rankings therefore higher local deprivation. There are pockets of local deprivation in the Leigh Park area of Havant, Fareham, Gosport, New Forest and Rushmoor. (Hampshire County Council Environments Department, 2014) Additionally of interest in Hampshire, at any one time, there are approximately: • 4,200 young carers, under age 18. (Hampshire County Council Children’s Services) • 12,500 young people who have experienced a significant bereavement (Simon Says, Child Bereavement Support Charity) • 18,000 of those aged 5-16 will have a diagnosable mental health problem. (Joint Hampshire Strategy for Emotional Wellbeing and Mental Health 2014-17, Hampshire Children’s Trust) • 1,000 Looked-After Children, in the care of the local authority.
Size of population and localities covered: As above. Hampshire Specialist Eating Disorder Team serves all of Hampshire and works from all 8 Hampshire CAMHS clinic bases; Aldershot, Basingstoke, Andover, Winchester and Test Valley, Eastleigh, New Forest, Fareham and Gosport and Havant. Between March 2018-March 2019 the team received 359 eating disorder referrals.
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