The Hertfordshire Community Eating Disorders Service is a county-wide NHS service which initially covered the west of the county and in 2006 expanded to cover the whole county. The team was set up to provide high quality, specialist, community care and treatment for people with eating disorders. As the team developed, one of our goals became to reduce hospital admission for our patient group.
What We Did
As the team developed, one of our goals became to reduce hospital admission for our patient group. As admission to a specialist inpatient eating disorder unit is costly, with units charging about £520+ a day, any reduction in the length of admission or avoidance of admission altogether will obviously have a financial benefit. In addition, in Hertfordshire, all specialist eating disorders admissions are out-of-county which means the experience of the service user is of having to leave their home, family and social supports in order to receive treatment for the physical dangers of an eating disorder. A reduction in the number or length of inpatient admission for these individuals will mean they are able to retain their social, familial and functional supports, building on the positives in their lives rather than having to move away from them. Therefore, one of our primary aims is to provide safe and effective treatment for these service users within the community when possible; both saving money and promoting recovery by attending to the service user holistically.
Members of the team were part of the East-of-England expert reference group which, in collaboration with Commissioners, developed guidelines for community eating disorders services across the region. The team subsequently received significant investment from Commissioners on a spend-to-save model with the aim to reduce eating disorder hospital admissions by improving the level of community provision. The result was a community team that is able to provide comprehensive treatment for its service users and hold them safely for longer out of hospital.
Since 2010, the team’s active caseload has increased annually from 170 to 350, which means that more people with eating disorders in Hertfordshire are gaining access to this specialist service. Additionally, most eating disorder services in the country operate from 1 or 2 bases; our team offers treatment in 8 towns across the county to meet the needs of our service users.
The multi-disciplinary service has more than trebled in its establishment since 2006 and now includes specialist mental health nurses, psychologists, psychological therapists, psychiatrists, a dietician and support workers. The multi-disciplinary team allows us to attend to the physical, psychological, dietetic, social and financial needs of service users and their carers or families in the county. The service is a ‘one-stop-shop’ where the vast majority of service users are care coordinated and receive all their treatment from within the specialist service. For a small proportion of service users, we have shared care arrangements with other services such as community mental health services, learning disability and older adult services if such a partnership better meets their needs.
INTENSIVE COMMUNITY MANAGEMENT (ICM)
Our service developed a specialized initiative, called Intensive Community Management (ICM), to aid the reduction of inpatient admissions. Service users in high risk situations and very low weight (who would meet the criteria for hospital admission) are managed intensively in the community. As dictated by the protocol, each service user in ICM can receive up to 6 face-to-face contacts from team members per week (e.g. consultant psychiatrist, individual therapist/specialist nurse, dietician, support worker x 2; family therapist) typically for up to eight weeks. After this period of time the service user will either be out of immediate danger and able to continue their recovery journey in a less intensive way in the community or it will be clear that they are unable to progress without an inpatient admission. In our study of this intervention, 17 of 23 service users who met the criteria for hospital admission were intensively managed in the community successfully. This yielded a saving of 1889 bed days and an estimated £1 000 000 over recent years. The savings have continued since the period studied.
The following quotes are from a service user who received ICM;
“Even though I asked for admission, I understand now that that was the right thing (ICM) for me. It provided a nice balance between enough support and maintaining my independence. I was worried about losing contact with friends and family and this option helped me to keep the contact whilst I recovered.
I just wanted to say a thank you for all the support you have given me over the past 3 months. You have helped me face my fears and given me the encouragement and the means to start living my life again. You have also helped me recognise my unhelpful thoughts and guided me to the tools l can use to challenge these in all areas of my life. Thank You.”
Another of our patients who was facing inpatient admission with a Body Mass Index (BMI) of 13 and losing weight has now been discharged. She is now at a much healthier BMI of 17 and has secured a three year research scholarship which she now feels confident to take up. Although she may need further help in the future she has made huge progress and in particular is no longer unwilling to access therapy and open herself to her feelings. Hopefully she will continue her progress into full health but even if she relapses, she is now open to and aware of the benefits of asking for help and making use of therapy. She was able to make these changes without hospital admission.
In line with the Care Act, the wellbeing of those who care for our service users is of vital importance to our team. We routinely offer carers assessments which can lead to carers’ grants. Below are some examples of how carer’s grants have been used to improve the lives of carers: parents used the money to mend a downstairs toilet so that they no longer had to carry their daughter with anorexia nervosa upstairs; mindfulness classes for a mother to cope better with stress of being a full time career; a bicycle for a father so that was more able to look after his own health, giving him greater resources to look after his daughter with an eating disorder
We are able to provide this particular support due to having Support Workers in our team. As far as we know, this professional group is not very common in other eating disorders services across the country. (They are invaluable, offering support work to our service users as well in the form of eating out socially, help ensuring they have the correct benefits, return to study applications and recently the support workers have become part of the team providing guided self-help for those with Binge Eating Disorder.)
As a method of support to those affected, we also run monthly Family and Friends (Carers’) Groups in two locations in the county. These are open to family and friends of all our service users and to families of those who have been discharged and as well as other Hertfordshire residents. The groups offer information and teaching but perhaps most importantly, they offer peer support; letting parents and partners know that they are not alone. These groups provide the space to share ideas as to what is helpful when living with someone with an eating disorder.
Our service completed an audit cycle of its compliance with 49 NICE recommendations applicable to the out-patient treatment of adults (18 years +) with eating disorders. Actions were taken throughout the audit cycle (and are still continuing) to enhance compliance and ultimately improve the care and experience of service users and carers.
The re-audit highlighted adherence to the majority of recommendations for the majority of service users. The following actions were implemented to address noncompliance:
(New) clinicians’ awareness of the NICE guidelines for eating disorders is routinely raised through in-house training; A ‘Welcome Pack’, leaflets and website were developed to improve information provision (e.g. on the treatment and management of eating disorders, carers groups, advising service users with osteoporosis to refrain from activities that increase the likelihood of falls, etc.); Two carers groups were developed to run monthly and in parallel across the county; Protocols and ‘template care plans’ (e.g. highlighting the need for physical monitoring of service users with diabetes or pregnancy; suggesting regular dental reviews for service users who vomit; template requests for GPs to monitor blood pressure, pulse and carry out ECGs and blood tests as appropriate) were developed to reduce variations in clinical practice for service users and to augment (electronic) evidencing of compliance with NICE; A template ‘Alert’ regarding the side-effect risks of medication was developed which clinicians routinely “cut and paste” onto the electronic personal records of service users with Anorexia Nervosa; Recruitment and training deliberately focussed on enhancing therapists’ capacity to offer the range of evidence-based psychological therapies (i.e. Cognitive-Analytical Psychotherapy, Cognitive-Behavioural Therapy and Interpersonal Psychotherapy) to ensure choice and accommodate service user/carer preference across the county.
Our team works closely with many other services and partner organizations, both within Hertfordshire and further afield:- GPs; Wellbeing services (Increased Access to Psychological Therapies, IAPT); Community Drug and Alcohol services (Spectrum); Local schools; The Hertfordshire University Counselling Service, (contact Eileen Smith, Head of Counselling Centre, University of Hertfordshire); Inpatient Eating Disorders’ Units -in particular ward S3 at Addenbrookes in Cambridge, the Chelmsford Priory and the Glasgow Priory; Beat -the leading national eating disorders charity which is very patient focussed, awarded us accreditation in 2012; Eating Disorders teaching on the CBT Masters Programme at a local University and Regional GP trainees Teaching Programme; Bariatric Surgery Unit at the Luton and Dunstable Hospital; he service has partnered with GPs in Watford to do a trial for a group treatment of people who suffers from morbid obesity.; Our service is committed to sharing our learning with local and international communities in order to improve the experiences and treatments offered to people with eating disorders; Our team provided consulting services (e.g. on the development of their service user satisfaction surveys) to Montrose Manor, a specialist inpatient user eating disorders unit in Cape Town, South Africa which offers private treatment to UK and international service users; We collaborate on research in India with the Eating Disorder Unit (Leicester), Loughborough University and Children First (India); The service has taken part in five doctoral research studies with our service users as participants.
We aim continually to learn from service users and carers in order to ensure that our service is the best it can be. To this end we: Hold regular service user/carer evening focus groups; Established a training afternoon which involved the entire team engaging with service users experiencing anorexia nervosa, bulimia nervosa and binge eating disorder and two carers, to provide a unique insight into their experience of the illness, their treatment and our service. This was attended by administrative, managerial and clinical staff alike to promote consistency and understanding among all team members; Include service users and carers on our interview panels for staff recruitment; Regularly conduct service user satisfaction surveys; Have service users and carers participate in service events, including speaking at the Trust Public Board meetings, our Family and Friends groups, in our team showcase to other staff within the Trust and have had ex-service users speak at the initial session of our binge eating group in order to give hope to those just beginning their recovery journey; Are building a database of contacts of those service users who would be happy to talk to others or be represented in meetings; Developed a recovery peer support group in response to the needs expressed by our patients. The group aims to inspire, bring hope, help connect patients and offer support towards the end of treatment;
Offered, and will again offer in future, a weekly art and craft group that provides patients with the opportunity to develop skills, be creative and form identities separate from that of the eating disorder. This offers the opportunity for patients to connect with others suffering from an eating disorder, sharing their experiences and reducing isolation; We applied for and won a lottery grant to fund training for patients and carers to run two parallel self-help groups. This undertaking was inspired by the requests of our service users. These groups are now running independently of us and providing support to Hertfordshire residents.
Feedback from our service users is routinely elicited in the following ways: Patient satisfaction telephone surveys (96% of patients would recommend the service to family and friends); Focus groups; Family and Friends’ groups; The Trust’s ‘Having your Say’ feedback forms; Complaints and Compliments.
Based on the NICE-guidelines, risk management and patient and carer feedback the service focuses specifically on the needs of the following sub-groups of patients: All high risk/low weight and pregnant patients (due to risks to the unborn foetus) are discussed weekly in team meetings; Young people (age 17 ½) have a formal six-month to a year transition phase jointly managed between the child/adolescent services and the adult CEDS to manage risk and to ensure a positive handover experience for all parties.
Repeat service user satisfaction surveys are invaluable ways of identifying shortfalls in service delivery, monitoring of performance and quality in services and to ultimately put service users and carers at the centre of service development. Against this backdrop, our service wanted to find a routine way to obtain specific and detailed feedback on the experiences and satisfaction of service users with eating disorders.
We also wanted to make sure that we are hearing the views of as many service users as possible not just those who feel able to talk to us directly. As a result, it was decided to collect service users’ feedback through telephone surveys due to the literature suggesting that telephone surveys yield better response rates than either mail or web surveys. Telephone services are comparable to face-to-face surveys, although face-to-face surveys rely heavily on the respondent being able to travel to a location to meet the interviewer.
Satisfaction surveys often tend to be one-off events with limited information provided on how subsequent service delivery was influenced. In order to avoid these criticisms, the service conducted a pilot and a follow-up telephone survey, with further surveys planned.
Importantly, participants were randomly selected from the active treatment list and independent researchers (University students) conducted the surveys on behalf of the service, giving anonymity to the respondents. The randomisation and anonymity made it as likely as possible that we were hearing the honest views of our service users rather than what they thought we wanted to hear.
The results showed that service user satisfaction was very high in both surveys, where 96% of participants rated the overall quality of the service as good/very good. Similarly, 96% of service users indicated that they would recommend the service to family and friends
Based on the satisfaction feedback from service users, the team has taken several steps to improve the quality of the service and the overall service user experience: Service users are now routinely triaged soon after receiving a referral and offered a choice of appointment times and locations across the county for the first assessment; Similarly, at assessment, service users are offered as much choice as we are able, in terms of the gender of the therapist, locations and times of treatment, although our priority remains rapid access. In conjunction with their assessor they will discuss the evidence-based treatments most appropriate to their needs (e.g. psychiatric input, specialist mental health nursing, dietetic information and guidance, support working and a choice between 5 NICE recommended psychological therapies we offer).
Carers are also routinely offered a separate carers assessment. Occasionally, service users are discharged from or refuse to engage with our service and some carers have requested ongoing support. In order to address this request, the service and Trust policy is that carers are entitled to support in their own right and can attend the monthly carers groups for as long as they see fit, irrespective of whether their loved one is still engaged with the team.
In collaboration with the Child and Adolescent Services joint protocols were developed to ensure smoother transitions and better communication and liaison between services for young adults with eating disorders and their carers. The NICE guidelines highlight that transition periods between services are times when service users with anorexia nervosa (especially those with the binge-purge subtype) are at increased risk of self-harm and suicide. A handover period happens over 2-6 months when service users are 17 ½ years old and allows the service user and family to retain key relationships with existing clinicians whilst developing new relationships with staff in the adult service. We are now looking into the effectiveness of teams that offer an all age service and aim to see if we too can develop a way to eliminate the transition process.
All clinicians are encouraged to ensure that service users feel involved in the decision making about their care and that this is reflected in their Care Plans. Our service is offering earlier and later appointments to accommodate service users who prefer to be seen after working hours.
The Trust has invested in new buildings and the team has recently moved into new buildings which service users describe as ‘posh’ compared to the old buildings. The new venues have computers in every consulting room which means that therapists can incorporate multimedia/the Internet in therapy as well as look at outcome and progress graphs with the service user in the consulting room to improve treatment experience.
Lessons Learnt/Challenges Overcome
In the team’s formative years, we did not have a permanent consultant psychiatric post. Different locum postholders did the best they could but it has since become clear that having a permanent consultant within the team has promoted an environment where we are more confident in safely holding the risks our service users face and are able to work collaboratively to prevent hospital admission.
Then again, the physical risks associated with eating disorders mean that admission is sometimes unavoidable. In these circumstances, our service users would benefit tremendously from having our own inpatient unit and day service. This way, we could continue to work with our patients throughout their admission and ensure that they stay in hospital no longer than is necessary. In this scenario, both the physical and psychological treatment could have continuity across community and inpatient care, promoting the patient’s trajectory towards recovery.
Additionally, we continue to further involve service users and carers in all aspects of the development of this service. Whilst service users and carers are often used on recruitment and interview panels we would like to involve them more in the business, leadership and management aspects of our development.
A significant challenge we overcame was enabling the staff to believe they could effectively hold this risky population in the community and prevent admission. The risks, particularly associated with anorexia nervosa, are so complex that the consistent input of a confident and knowledgeable consultant psychiatrist has allowed our team to make safe but challenging clinical decisions.
Many other community eating disorder teams are more limited in terms of the various professions employed within them. Due to the diversity of the service, we have experienced tensions between the different staff groups and we had to work hard to break down silos between professional groups in the multi-disciplinary team. This has required us to explore boundaries and appropriate divisions of labour. The process illuminated a need for extra training, alterations in the staffing structure and the development of a team culture which acknowledged the value and contribution of all members of the team. Through this transition, individual staff members were enabled to use their skills more fully and productively for the benefit of the patients.
Like most other teams, we are subject to the continual financial pressure on the NHS. Subsequently, we have had to reduce some of our staffing costs and make changes to ensure that we continue to provide high quality treatment at a reduced cost.
The changes in inpatient provision have impacted our relationships with the inpatient providers and reduced the accessibility of beds. Although we aim to work with people in the community, when necessary, admission is usually needed almost immediately. We continue to liaise with commissioners and build new relationships with providers to ensure we are able to access beds as needed.
The team has developed a culture of being safe, effective, caring and responsive over several years and this will continue even when individual team members leave the organisation. The service as a whole is committed to community eating disorder care and treatment, as is the NHS Trust.
Policies and protocols have been developed which are embodied by our entire team. All disciplines are now aware of the importance of physical health monitoring, including those that previously worked more purely with the mental health of the patient. This has given our team a greater awareness of risk and when this can continue to be managed outside of hospital. Our team has a keen understanding of the roles of the multiple disciplines that operate within it. This ensures an awareness of what each individual is able to contribute to the team. In the event that team members move elsewhere, the ethos of the team is already sufficiently robust that it can be communicated and shared with new team members. This has been proven over the last year when the team values and quality of service provision has remained the same despite senior and longstanding members leaving the service through retirement and promotion to other services.
The Leadership and Management Group (LMG) has it as their responsibility to ensure that a culture of positive practice is developed and maintained in the service and new staff members are closely supervised and acculturated. In this regard, the LMG has been expanded to include more members of the team in order to have more people taking responsibility for the sustainability of positive practice in the service.
Outcome measures are used by all members of the team to evaluate the effectiveness of the interventions offered by the different professionals who work with each service user. This ensures continuity across discipline and ongoing monitoring of progress. Trust feedback forms are routinely administered so that we would continue to receive anonymous feedback from our service users and carers.
Finally, we believe our sustainability is supported by ensuring that staff continue to have high morale, feel valued and enjoy working for the service. This is achieved through building strong relationships and through developing and enabling team members to work to their strengths.
Beat Accreditation – We achieved accreditation and Beat Assured status from Beat, the leading UK eating disorders charity in 2012. Beat uses a robust framework for assessing services and their standards consider the entire treatment process, from the initial referral, through treatment to discharge and the support is provided afterwards to maintain recovery.
RESEARCH – Our service is committed to further research, exploring the service users’ experiences, both of living with eating disorders and treatment interventions. In this regard, the following four research projects have been conducted in the service by Doctoral students in Clinical/Counselling Psychology:
Service users’ experiences of receiving a diagnosis of an eating disorder; Mothers with eating disorders’ experiences of feeding their children; The experience and meaning of ‘Feeling Fat’ for women with a diagnosis of Anorexia Nervosa; A Single Case Design Study Evaluating the Impact of a Values Based Positive Self Affirmations Intervention on Eating Disorder Symptoms in Women with Bulimia Nervosa
This research and the learning that comes from it is disseminated so that clinicians in the eating disorders field can continue to develop their understanding of what the needs of service users are. For example, based on service user feedback Doctoral research projects (presented at international conferences in March/April 2015) highlighted the need for: extra support for mothers with eating disorders regarding feeding their children. more clinician empathy when delivering the initial diagnosis of an eating disorder to patients. We aim to implement these recommendations, as they are reflective of the needs of our service users.
Compliments and qualitative feedback
The service routinely keeps records of all compliments and qualitative feedback from service users and carers. Examples of such feedback include: “Treatment was the best thing I’ve ever done, it’s changed my life. I read a quote like this on a website before I came and didn’t believe it, but now I’m saying it! I found it really helpful to be able to talk openly, to not be judged, and to be given advice where needed, gain knowledge and information I was terrified of being weighed, but it was really helpful to my treatment.”
“For 15 years I have been convinced I was fat, nothing else mattered. Now eating, weight, and shape is 10% of my day, 90% is friends, family, work, and life!”
“Treatment was the best thing I’ve ever done, it’s changed my life!”
A mother said in family therapy after her daughter had begun to make progress: “When we were about to give up hope, you kept believing in us and that recovery was possible” Another said “Thank you is not a big enough word in response to all you have done for my daughter and our family”
A patient rang to thank us. She said that initially “she was quite critical of the group ending and she didn’t felt it helped her”. However, she found that it has “given her the tools to go on and she could see how that has worked.” She’s not binged for at least 2 months although she has stopped counting and it could be more. She has lost a stone in weight. Her relationships at home have improved and she feels less angry and better able to cope with difficult situations. She said that this was because through the group she’s been able to stand back and look at herself objectively and has used the self-talk technique. She said that she’s re-read through the material we gave out and this has helped it sink in much more. She’s spending more time with her daughter who’s said to her she feels like she’s got her old mum back. She feels so positive at the moment that she intends to reduce her antidepressant medication (under medical supervision) because she feels she can now cope! She said that the group helped put her in the right ‘mind-set’ to tackle all her problems.
We continually do internal audits, looking at physical health monitoring and NICE compliance and have carried out two patient satisfaction telephone surveys. We are currently undertaking a carer satisfaction survey.
Although there has been no formal staff engagement evaluation, we were asked to showcase our team’s work and one of the factors remarked upon by the audience was just how many of the team were involved in the presentation and how much we appeared as a united team. Staff initiatives are always considered and often taken up; allowing each team member to experience their unique valued and use their skills as fully as possible. Two staff members have been awarded Trust Inspire awards. The response of one was: ‘I am overwhelmed by this surprise and feel blessed to have a job I love and a team/manager that are so supportive’
We were honoured to be one of the finalists and ‘highly commended’ at the National Positive Practice Awards (2014) in the ‘Patient Experience Award’. The service was also shortlisted as a finalist for the 2105 HSJ Value in Health Care Awards (Category: Value and Improvement in Specialist Services).
EATING DISORDERS POSITIVE PRACTICE LEARNING EVENT
The service feels honoured to have hosted the Eating Disorders Positive Practice Learning Event with 3 other eating disorders services.
Dissemination of learning within Hertfordshire Partnership University NHS Foundation Trust
Over recent years, the service has shared many of the team’s developments through oral and poster presentations at the Trust’s annual ‘Sharing Good Practice’ conferences. The service has also recently successfully presented a ‘Showcase to the Trust Public Board Meeting, and a further ‘Showcase’ to senior management in the Trust, detailing our clinical strengths, unique range of expertise amongst our team as well as our contributions to the field of eating disorder research and development at large.
Presentations at national and international eating disorders conferences
Over the past 6 years the team has delivered oral and poster presentations at 2 national and 7 international eating disorders conferences where we have shared our experiences and initiatives with others in the eating disorders field.
The service has also published in several journals. For example:
Viljoen, D. & Kelly, B. (2014). The quest to adhere to the NICE guidelines for eating disorders in an adult community eating disorders service. Clinical Psychology Forum, 260, 40-45
Winter, L., Jarvis, S., Viljoen, D &.Benson, E.. Telephone surveys and client satisfaction: Reflections from an adult community eating disorders service. Clinical Psychology Forum.
Symptoms, Investigations and Treatment in Eating Disorders: A quick reference guide for all ED professionals Dr Murali Sekar