Report on the findings of the Dorset Mental Health Forum Eating Disorders survey Carried out 1st December 2011 – 1st March 2012 Introduction

A small Eating Disorders (ED) Steering Group was set up by the Forum in partnership with Dorset HealthCare University NHS Foundation Trust (Dorset HealthCare) in the summer of 2011, in order to take forward ideas for improvements to local services.

This initiative was prompted by a shared wish to support and empower people with lived experience of eating disorders in Dorset. As Esther Osborne writes: "I have suffered with an Eating Disorder for many years and during this time have accessed and experienced many aspects of the Eating Disorders Service in Dorset. It was through my own lived experience and observations gained during this time, that I sought to gain the views of others with similar experiences with a view to effecting positive changes."

The steering group membership is currently as follows: Becky Aldridge – General Manager, DMHF Sue Forber – Development Manager, DMHF Esther Osborne – Peer Specialist, DMHF Susan Ward-Rice – Community Development Worker, Mental Health, Dorset HealthCare Access & Equalities Team Research Methods In order to develop a wide knowledge base about the views and experiences of people regarding ED services in Dorset, and to assist in identifying gaps and deficits in services, the steering group devised a questionnaire (see Appendix A) and distributed it widely, for completion (either online or paper copy) during a three-month consultation period.

The group recognised that the use of questionnaires as a method of data collection would have strengths and weaknesses. For example, as a group we were aware of the advantages of using questionnaires, which would allow respondents to complete the survey at their own convenience and would also offer assurance of anonymity, thus encouraging the respondent to perhaps be more honest and expressive about their experiences. In addition, the use of this survey method would enable the questionnaire to be widely distributed across the county of Dorset, as there is no defined area in which people with eating disorders reside.

In examining the weaknesses of using such a method, we were aware that it would not allow us to probe or seek clarification of questions, and we were also aware that we would be relying on the respondent’s motivation to participate in the survey. We were in agreement that the use of a questionnaire would provide both qualitative and quantitative data. In designing the questionnaire, the steering group agreed to use the web and in particular the DMHF website as the vehicle for an online questionnaire, with respondents accessing the web page and entering their responses directly onto the page. Online data collection is growing in popularity as more and more people have access to the internet, the invitation to click on a link is less intrusive than either a hard copy or a face to face conversation, and people can respond in their own time. The steering group also agreed that paper copies of the questionnaire should be available for people to use and these could be returned to the Forum. It was agreed that there should be a three month consultation period which started on the 1st December 2011 and ended on 1st March 2012. This report details the findings and key themes arising out of the survey responses, and sets out how we plan to work with local NHS commissioners and providers to co-design improved ED services for the future.

Publicity for the Consultation

In an effort to get as much publicity as possible, the steering group approached Grayling, the communication and PR network commissioned by Dorset HealthCare, who agreed to assist in publicising the consultation. As part of this process, articles appeared in the following newspapers: • Bournemouth Echo (two articles) • Dorset Echo • Bridport News (three articles) • Blackmore Vale Magazine • A View from Bridport • A View from Dorchester • Weymouth Echo (two articles) • Dorset HealthCare Trustlinks (January/February 2012) • Portland News

There was also an opportunity to do radio interviews with local stations Forest FM and Wessex FM. Esther Osborne did pre-recorded interviews for both stations and these were then repeatedly aired during National Eating Disorders Awareness Week (20th – 26th February 2012). In addition, Dorset HealthCare and Dorset LINks both had links from their website to the Forum website. Posters and information were also distributed to all Community Mental Health Teams (CMHTs) and to all GP practices. Posters were also distributed to partners within Dorset County Council, district and borough councils, and a range of community and voluntary organisations. During National Eating Disorders Awareness Week, members of the steering group had the opportunity to work with students from Bournemouth University who as part of their studies had organised the ‘BUrself 4 Life Event’. This event included the team having a display and information about EDs. The event was held in the main reception of the university and involved the team encouraging fellow students to sign up for a forthcoming ED awareness seminar, and to get students thinking about their lifestyle and what changes they could make. Questionnaires were also distributed to students during the event and at the university seminar.

Statistical and Demographic Data

The steering group has been ably assisted by Merrick Marshall, the Forum’s Website Developer, who set up the online survey and database and has produced the breakdown of statistical and demographic data from all the survey responses (including those completed in paper copy). Please see Appendix B for the detailed data (broken down by all respondents; respondents from BH postcodes; and respondents from DT postcodes). The headline data are:

 There were 97 respondents in total

 

 86% of respondents are female

 

 47% of respondents have direct personal experience ("lived experience") of ED

 

 72% have had experience of accessing an ED service in Dorset (either for themselves, or a family member/friend)

 

 55% of respondents are aged 40 or under

 

 87% of respondents are of White British ethnic origin

 

 54% of respondents travelled over 20 miles to access an ED service

 

 39 respondents have a BH postcode, and 27 have a DT postcode

Findings – Key Themes Travel distance

We asked people the following questions about travel: How far do/did you or the person you know have to travel to access eating disorder services? 0-10 11-20 21-30 31-40 41-50 51-60 Further than 60 miles

What were the reasons for the travel? Please tell us your views about this. As stated above, the majority of respondents reported travelling over 20 miles in order to access an ED service. 10 people reported travelling over 60 miles. The lack of services closer to home was a theme which attracted many comments. For example: Dorset is rural and spread out. Everywhere is hard to access. Most services are in the East of the county. In the West they are limited. The only unit available!!!!!!!!!! What choice is there?! [Travel distance 21-30 miles] Living at home with parent for support (and had nowhere else to live) in West Dorset (Bridport), while the nearest specialist centre is at Poole. As her carer, I had to take time off work to ferry her to the station at Dorchester or to take her into Poole. [Travel distance 41-50 miles] No other help available closer. This makes it even harder to deal with the situation. [Travel distance 21-30 miles] Helpful aspects We asked people: What was helpful about the services you or the person you know accessed? We received a wide variety of responses; however, 36 respondents said that having access to specialist care and advice was the most helpful. Other respondents found it helpful to have access to services such as: •Therapy services •Inpatient and day treatment services •Community Mental Health Teams •Accessing community organisations (including specialist ED charities) 

In addition, three people said that by accessing services it had saved their life. Four people had found nothing helpful about any services they had used and three people had accessed services privately. Comments:

The most helpful generally has been the structure and the access to psychological therapies to work through changing behaviours and thinking patterns but also to deal with the issues underlying eating disorders. Community help was good but not enough. Day treatment was fantastic and made a huge difference to me. Because I did not realise I had a 'problem' before being admitted I found it invaluable to realise I was not alone. I felt at the time that a 46 year old woman did not suffer from what I had always believed was a teenage illness - but how wrong I was. In the immediate moment, inpatient unit saved my life and got me back into normal eating. Day services helped continue this pattern with intensive support. The staff team supporting both my daughter and my family have been amazing. They have been great listeners and have responded appropriately when needed.

Unhelpful aspects

 We asked people: What was unhelpful about the services you or the person you know accessed? This section of the questionnaire attracted the greatest number of individual comments, and the majority of these indicated a high level of dissatisfaction with services. However, this feedback provides us with some really useful intelligence and learning points to help shape future services. The following themes were identified by survey respondents as being unhelpful aspects of ED services:

• Directly pertaining to the inpatient environment
• Difficulty accessing inpatient treatment in the first instance was a strong theme. Reasons cited included lack of beds, long waiting lists, not being taken seriously by GPs, and having to be "at death's door" before qualifying for admission; and a lack of scope for the effective treatment of eating disorders other than anorexia, for example, bulimia and EDNOS (Eating Disorder Not Otherwise Specified).
• Inpatient services were located far from many respondents’ homes, which resulted in a drain on time and expense for all involved, and a consequent reduction in family and friends’ ability to visit, offer support and play a more pivotal role in the sufferer’s immediate and ongoing treatment and recovery.
• Comments about inpatient services indicated that unhelpful influences arose from negative fellow patients, the institutional and "not real life" nature of treatment, and the fact that treatment revolved around an over-emphasis on food. Several respondents commented that the food itself was of poor quality, variety and freshness. The treatment was inflexible, and lacked individual focus due to blanket rules and policies, and was not sufficiently geared towards equipping the person for transition back to home and the skills required not just for eating, but more general 'life skills'.
• It was felt there was a lack of one-to-one therapy, poor organisation of groups and therapies, and a failure to include a wider support network within the therapies and groups offered.
• Some respondents reported themselves or their family member/friend being prematurely discharged due to a pressure on beds, and penalised for any weight loss, particularly when on home leave (the ultimate penalty being a premature discharge from the service). This was experienced as punitive, given the nature of the illness.
• Where admission to a general psychiatric ward had been experienced, this was felt to be a wholly inappropriate environment due to lack of specialist staff knowledge, which had long term repercussions for the sufferer, as did negative experiences of inpatient treatment which resulted in avoidance of future involvement in the services.

 

Services in general

 

 Lack of GP understanding and specialist knowledge, either in diagnosis or follow up care.

 Some respondents felt they were not taken seriously, left untreated, or in receipt of ineffective or inappropriate services for long periods of time.

 There were also reports of poorly trained staff in some services, with judgmental and disrespectful attitudes encountered, including in primary care, A&E, and CMHTs. One historical report of a physical assault and bullying by a staff member (no longer in post) was received, and the steering group responded to the individual concerned, requesting further details and then advising on possible courses of action.

 Disorganised, inconsistent and inflexible services which fail to work together, i.e., CMHTs and ED teams, to provide a comprehensive care package.

 Failure to involve patients, family and friends in decision making processes and in their own care plans, and issues around confidentiality were identified.

 Lack of training and education for CMHTs was a large problem, ignorance of psychologists specifically referred to, and in reference to multi-disciplinary teams, a lack of information sharing and basic ED training was reported, as was a 'pass the buck' culture.

 Post-discharge from inpatient or day patient services – poor transition, and vital information was not provided to the community teams who would be responsible for ongoing care.

 Many respondents felt that "the system" was not explained to them, it was up to them to work it out and it took time to develop their own understanding of how things worked. Use of 'lingo' and acronyms was a frustration and felt impersonal.

 There was felt to be a serious lack of carer support and peer support in the county generally. Some respondents reported a 'parent blaming' culture, and a lack of local staff-run groups, therapies or structured counselling. This was both post-discharge and for individuals in the community in general.

 Lack of provision for supported housing, occupational therapy, home-based support, training in life skills and self-management, help to access local facilities, e.g., education, training, benefits, employment, accommodation etc.

 Individuals were not given access to the correct services, reported a lack of crisis intervention & out of hours specialist advice/service with no clear signposting or good advice available.

 Inconsistent community staffing, no continuity, and a lack of resources dedicated to specialist ED services, with those on offer being severely time-limited.

Comments:

Unsympathetic or disbelieving professionals who aired their own thoughts/views which created anxiety with sufferer and caused further eating behaviour regression and self-harming (as well as depression and suicidal thoughts and sense of self-worth shattered). All services should CO-ORDINATE and offer a HELP PLAN, working with the sufferer to assist with care which the sufferer can manage - instead of sending them miles away from their home town, here and there, for service/treatment. Some of the professionals (from my experience) need regular, on-going training in how they work with their patient. Some certainly show little respect and one or two even came across as bullies. There was no one employed at that time that specialised in counselling eating disorders. I therefore had just a normal counsellor from the mental health team and he advised me to be terminated from my job as medically incapable and go on benefits. I got terminated but never went on benefits; it’s not in me not to work. I don’t believe the help I needed was there and wrong advice was given. Lack of information (verbal) for a carer/parent. Difficulty in speaking to member of staff on the phone when help was needed and nobody to turn to.

Important factors

Comments:

From the day the patient leaves the unit, there is insufficient follow up. Just because their BMI is up, does not mean they are well enough to be left to their own devices in the community. It seems to be a series of 'quick fix and out'. Then repeat! Compassion and understanding from professionals. Treating on an individual basis. Psychological treatments to deal with the problem at its core and not simply re-feed.

Anything else

 

We asked people: Ideally, what do you consider to be the important factors from a service in sustaining long term recovery (from crisis point through all stages to full wellness)?

46 respondents said that support throughout recovery was the most important factor (by far the most frequently cited important factor). Additionally, 25 respondents said that having person centred care was important, and this could include support with life skills such as building confidence to more practical skills such as training and education. 11 respondents said that having access to a variety of support including out of hours services, peer support, telephone helpline, crisis response were also important.

Furthermore, other considerations which would help in sustaining long term recovery included 13 respondents saying professionals needed to show more compassion, understanding and respect for the person with the eating disorder. Other responses included: • More localised services, rather than travelling to a considerable distance to access a service • Offering support to family and friends, both financially for families (who have to travel a considerable distance) and emotional support • Services being more responsive and intervening at an earlier stage Respondents were also keen to point out that not being severely underweight was used to exclude people from services and additionally a series of quick fixes and back out of the service did not help in terms of sustaining a long term recovery.

We asked people a final open question: Is there anything else you want to tell us about eating disorder services or other support you, or the person you know, receive or would like to receive? Please provide as much detail as possible - including your views on any gaps in services and suggestions for changes or improvements.

There was a wide range of comments in this section, but once again respondents said that support throughout recovery was vital and this could be through a variety of ways, including peer support groups, on line support, and support with life skills which could be through supported housing. Respondents also said that being able to access ED services even when their health was not at a critical point would also have help to aid recovery. A number of respondents also said that more work was needed in terms of raising awareness about EDs, especially with young people in schools and informal environments such as youth clubs. Others were also keen to see healthcare professionals including GPs receiving specialist advice and training. In addition, the following suggestions were made: • Establishing support groups for people living in North Dorset both for people with the lived experience and their carers/supporters • Looking at alternative therapies, for example hypnosis • Establishing services for people with EDs other than anorexia and bulimia Comments

There are serious gaps in services as far as 'meeting the criteria' goes. If you're not underweight enough they're simply not interested. Would be good to be able to refer in a short timescale to someone who could be a mix of assessor / educator / counsellor to tell sufferer more about the risks and indicators of the condition and possible support; but also to be able to offer similar help early on to relatives of the sufferer as it is such a hard thing to understand and as family members it is so easy for us to make things worse not better: and it can be a very lonely place for relatives. Kimmeridge court is a fantastic place. Made a huge difference to my life. The best way to improve and innovate is to ask the service users themselves (like you have) and then to ensure that the research is used to inform commissioning and services… Innovation needs to be participative and ongoing so that users feel ownership and responsible for their own care and those alongside and after them. I am really interested in this work and would welcome a chance to help out more. Providing meaningful activity and occupation is important in recovery - there has to be life and 'normal' living so life doesn’t become about eating disorders and fighting them alone - but shows the light and the hope of recovery. Break the silence!!!

Next Steps

Through our steering group, we plan to continue our partnership work with the NHS commissioners and the current providers of eating disorders services in Dorset, including sharing this report with them and working together on its findings.

Specifically, we will hold focus groups this summer of people with first-hand experience of eating disorders, and family members and friends, in order to influence the design and direction of a new, all-age eating disorders service across Dorset which is currently being planned (invitations to the focus groups will be sent out to Dorset-based survey respondents shortly). Looking further ahead, we also hope to facilitate peer support and peer-led initiatives by and for people with lived experience of eating disorders.

Conclusion

We wish to offer our grateful thanks to everybody who took the time and trouble to complete a questionnaire to contribute to our survey. Similarly, thanks go to everyone who has read this report. It will be published on the Forum website (www.dorsetmentalhealthforum.org.uk) and Dorset HealthCare (www.dorsethealthcare.nhs.uk) and copies are being distributed to everyone who completed a questionnaire and filled in their contact details, expressing interest in becoming part of a network of people with experience of eating disorders. We hope that, for many of you, this is just the beginning of a process of ongoing participation and genuine influence, as together we improve eating disorders services for the future.