In late March of this year, the Scottish Government released a report that reviewed the current state of eating disorder services available in Scotland. This review was announced in 2020 by Clare Haughey, Minister for Mental Health, following the eating disorder review carried out by the Mental Welfare Commission for Scotland. This review was published in September 2020. At the end of the year, I participated in one of many workshops designed to get the opinions and experiences of those with lived experience of an eating disorder; whether they are the individual themselves or a carer of one. These operated alongside workshops for clinician, in order for facilitators to receive a well-rounded response.
This report delivered fifteen recommendations.
The review found that currently services are heavily underfunded and often people struggle to access a service close to them, or the available services are not equitable in comparison to others, leaving people with eating disorders without appropriate or effective services. That is if they get into services at all due to the long waiting lists, and focus on severity of the eating disorder i.e. very low weight, being in a very sick state etc., People who were transitioning services, namely CAMHS to Adult, experienced difficulties in adapting or receiving a continuation of support and treatment. It was also found that anorexia nervosa is highly focused upon by services, therefore leaving people who don’t have this eating disorder, or any other complexity or co-occuring condition, with difficulties in getting appropriate help.
Carers felt unsupported and uninformed to the point of being excluded.
And, despite the fact, early intervention has been pushed and pushed and pushed, there has been such little evidence of it in practice, with the essential training lacking.
These are issues that have been ongoing and continually brought up by both clinicians and people with lived experience. Yet, we have seen hardly any change; with services actually being reduced or disappearing altogether. So, I appreciate the recommendations delivered by the review, and will go through them in this post. Some of these are more short term and will be achieved more quickly than others, but there is an ambitious and hopeful estimation that these recommendations will be put into practice within the next ten years.
Recommendation 1: COVID-19 response.
This aims to be carried out over the next 12 months to likely compensate for the fallout of this pandemic. COVID-19 has caused increasing mental health difficulties, distress, and diagnoses, with many who were receiving treatment now no longer receiving it at all or to its full extent. When life returns to normal, it is expected that the mental health services, particularly eating disorder services, will be overwhelmed and be even more beyond capacity than before. There is expected to be increases in eating disorder severity and a greater urgency for treatment and support. Therefore, with all of this taken into consideration, there will need to be immediate work put into bolstering and improving the services. So, there aims to be well-needed emergency funding in place, which will allow quick expansion and extension of healthcare disciplines e.g. medical, nursing, dietetic, therapeutic etc., With this funding, there should be a reduction and prevention in hospital admissions; beneficial, as we come out of COVID-19 and to prevent people getting to a stage where hospital admission is required. Additionally, it will aim to stabilise patient’s physical health and also support the patient to be discharged appropriately, efficiently, and successfully.
Recommendation 2 and 3: Implementation Planning / Co-ordination of national activity and data collection.
Here, we have recommendations of two taskforces with the aim of one handing over to the other. Implementation Planning involves the set up of an Implementation Group, who will put the meat on the bones of these recommendations as it were. In other words, they will in charge of preparations and planning for areas like service development, training etc., They will focus on the direction of the recommendations and have foundations for the vision this review has. What is hopeful here is that they will aim to have a timeline in place and clear plans rather than general overviews so to develop quality service standards. They will also be responsible for finalising the cost of these changes, so there is an understanding of where the funding will go, and, with hope, not just funding existing services that are not working. Throughout this they will have consistent data collection to allow reflection and continued development and improvement to be possible. Consistent data collection will then be continued by a National Eating Disorder Network (NEDN; Co-ordination of National Activity and Data Collection.) This taskforce will be funded and established by the Scottish Government like the Implementation Planning, and will take over from the Implementation Group. NEDN will be the taskforce responsible for recommendation implementation on a more long term basis. This allows for the developments to be upheld, continued and improved. One of the things I appreciated the most in the third recommendation is the creation of a national website run by NEDN, which should allow for online training and awareness; an efficient way to improve peoples’ knowledge around eating disorders, and perhaps improve detection. Not only this, this recommendation aims to support training at undergraduate and postgraduate level, as well as specialist services. I find this to be incredibly beneficial and advantageous to people who would likely come in contact with people with eating disorders, as they seek and receive help. The sooner the training and awareness starts the better. In my opinion, there is no point in leaving training until the person wants to specialise or goes further into education. It is helpful to have that training available. I just hope that in undergraduate level, and possibly postgraduate, it is isn’t incredibly vague or a tiny part of the course materials no matter the degree.
Recommendation 4: Lived Experience Panel
Okay, when I read this title I simply wrote “!!!!” in my notes. This has been a long time coming, as we have left out of the conversation since the start pretty much. Services, research, and training have been developed for us but it’s been without us there. As a result, we have been failed time and time again. In the age of social media, people with lived experience have been given this opportunity to raise our voices like we haven’t been able to do before. We’ve been able to discuss what works and what doesn’t, and we’ve been shouting from the rooftops to be included. In fact, during the workshop, it was a common theme of having lived experience voices heard, and heard in the places where it makes a difference. This recommendation details a lived experience panel, which will advise he Implementation Group and then will continue to work in the implementation of recommendations with NEDN. So, it appears we won’t be used once, at the beginning, in an attempt to appease us, and then never consulted again. The lived experience panel will hear from patients, families, and third sector representatives, so there will be a more well-rounded set of voices. This answers the current experiences of carers who feel left out, and, in my opinion, having third sector involved is very important, as they are essential to people’s support, whether that’s support workers, recovery workers, online groups etc., I would like to know what third sectors would be involved whether they will involve specialist third sector, general third sector, or both, because I think having both involved allows for an understanding of what the gaps in service language and training are. Additionally, the panel will aim to be diverse, including those often left out of the discussion e.g. greater variety of diagnoses (not just anorexia nervosa), males, LGBT+, ethnic minorities etc., This also appears to be a direct answer to the overt focus on stereotypical demographics and the diagnosis of anorexia nervosa. This lived experience panel will then continue to be consulted and provide their insight in all eating disorder national changes. Now, while I love this recommendation, I hope they fulfil it and it’s not just lip service. We need to be part of the changes.
Recommendation 5: Public Health
Here, public health aims to work with a wider audience in order to improve a variety of issues and predisposing factors in eating disorder development, such as poor self-esteem and body image. The strategy will work with parents, schools, higher education, sport and fitness organisations, the food industry, the fashion industry, and healthy eating programmes. By targeting these areas, you are engaging with environments where eating disorder and disordered eating development can develop and be maintained. Therefore, people who engage with these services may feel safer and more supported in their physical and emotional/mental wellbeing. It will allow people to perhaps engage in healthier activities without practicing unsafe behaviours involving their eating and exercise. I hope it leads to less body-shaming, less focus on weigh-ins, being a certain weight, eating a certain number of calories. I hope it leads to a better approach to healthy eating and exercise without the previous detrimental focal points. I hope we don’t start weighing children in school at least…
Recommendation 6: Self help resources available to all
This recommendation will allow for funding to third sector organisations, and a range of community services. It is thought that this will give the Scottish public materials they can access to self-help materials and programmes, which may ease the strain on current waiting lists and encourage greater successes in early intervention and prevention of hospital admission. There are also calls for development of peer support, and emotional and practical support, which can be provided by third sector. It will be beneficial for third sector to receive the appropriate training, and have these self help programmes and materials on hand so we can assist in providing that support. This may involve cooking, buying food in a supermarket, eating out in cafes etc., It will also be advantageous for carers if appropriate third sector organisations are able to bolster the carer’s current supportive tactics, as well as provide support for the carer. As someone currently employed in a third sector position, I would see this as helpful in strengthening eating disorder recovery, as we are often there more frequently and directly in areas, such as the person’s home environment, than other disciplines.
Recommendation 7: Early Intervention
This is a big one! Early intervention has been on the table for a while now. In fact, it was the theme of Beat’s Eating Disorder Awareness Week in 2017. It has been four years, and, as mentioned earlier, there is still such little evidence that eating disorders are not being detected early enough thus people are being left with their illness until they become very sick. It is evident that the earlier an eating disorder is detected the higher the chance of a successful and long lasting recovery. So, in having this as a recommendation, I hope we see it implemented properly, and actually get some positive results from it. This should hopefully result in less hospital admissions, sooner access to treatment, and less chance of long-lasting physical and psychological damage. If our professionals, whether healthcare or otherwise, have the ability, the knowledge, and the awareness to detect eating disorders, then support can be made available right at the start, because genuinely why should we wait until the person is very malnourished and really rooted into their eating disorder before they get help? This recommendation is likely a long term one. I am sceptical of it, however, as I know how long people have been talking about the need for early intervention, and that’s both the public and in parliament.
Recommendation 8: Primary Care
When people first seek help, their usual port of call are primary care services like GP surgeries. However, this is also where many meet numerous barriers, or support that is too general, lacking the specialist knowledge needed to provide effective advice and help. Often, GPs and other disciplines featured within primary care services find their hands are tied, and unable to give appropriate information and treatment lest they provide unsafe medical advice. And, consequently, people with eating disorders can feel failed or a need to get sicker to get the help they really need and want. Recommendation 8 proposes appropriate training for primary care settings, with a better provision of specialist support. This will hope to promote early intervention, as the primary care clinicians will be given the training to improve their awareness and detection of an eating disorder in order to then provide effective and appropriate treatment. This training will aim to be ongoing, which is very important to do so, as research is constantly evolving, therefore what you learn now may not be relevant in five years. This should mark a change from the current limited and outdated knowledge held by primary care services, due to the unfortunate lack of awareness and training. Additionally, this recommendation observes that there needs to be increased support from specialist services in some areas such as physical monitoring i.e. weigh-ins, meal plans, bloods. This is to strengthen and alleviate the current geographically inequitable services, in which people live further away from specialist services or have moved away for a time i.e. university term-time. This allows for appropriate boundaries and medically safe practices, which is particularly important for more severe cases of eating disorders. So, if both primary and specialist services worked in tandem then recovery should continue to progress positively, especially in so-called geographically inequitable.
Recommendation 9: Safe Medical Care
Like mentioned in Recommendation 8, Recommendation 9 wants to improve the boundaries within medical aspects of care. While a multi-disciplinary is important and should be continued, it’s equally as important to ensure responsibility for certain aspects of medical care so as not to blur lines and lead to poor practice. This can be ensured by the appointing of a named eating disorder medical lead for every health board i.e. NHS Greater Glasgow and Clyde, NHS Lanarkshire, NHS Grampian etc.,. Having this lead means that there are clearer lines of responsibility in healthcare teams, and therefore clearer and more consistent treatment approaches. It will also mean that this lead (and a team likely) will be able to gather data for their health board which is to be sent on to NEDN. This will strengthen the multi-disciplinary approach, as the lead works with areas such as Acute Medicine, Paediatrics, and GPs, and utilises the expertise of each discipline involved.
Recommendation 10: Investment in Specialist Eating Disorder Services
Here, it is recommended that there be funds put into specialist community-based services. This funding and commissioning should allow for fair and equal services across the boards and regions. Currently, services are not considered equitable with many being failed by the system, particularly those in rural and working class areas as well other non-stereotypical demographics. So, with more funding and development of services to ensure they are equal and fair, then a wider variety can receive treatment so to enter and then maintain recovery. This includes all types of eating disorders, not just anorexia nervosa which was the highly focused upon eating disorder in services. We’ll see all ages and genders receiving equitable treatment hopefully. Self referral is recommended to encourage a more equitable service, especially so you don’t have to be at a very sick level to get help, threatening your life, both physically and mentally, even more. This recommendations also suggests that using digital technology known as telehealth may be advantageous in regional teams to bridge the current inequitable gap. It will reduce hospital admissions and help the person to remain at home, living more independently and thus getting used to recovering within a home environment. So, there is limited need to travel further afield. However, my concern is, while this moves with the times, I hope it is not the complete replacement to face to face support while already more established services remain to receive face to face support. Moreover, this may not honour the patient’s choice of treatment methods. Not everyone may want to use telehealth consistently, or be left with it being one of their only choices; maybe even their only choice. With the recent Scotland’s Mental Health Partnership manifesto calling for patient’s treatment choice to be honoured, whether they want digital or not, I hope it is not ignored.
Recommendation 11: Workforce
This is a pretty short recommendation but a very essential recommendation and one to be taken as seriously. This recommendation observes that the workforce must improve. You can’t have good quality services if you don’t have a stronger workforce. You can’t expect improvement and a flourishment of services if there is no one there to provide the service. So, by improving recruitment in such services, and also working on staff retention, then there will be better practice and, in turn, safer medical care, and more appropriate and effective treatment responses. Providing consistent training can mean that employees feel more supported and informed, therefore feeling more comfortable and confident in providing treatment responses.
Recommendation 12: Education and Training
This is key to improving the workforce and the services overall! What is even better is that the training is recommended to extend to professions outside of healthcare, particularly where eating disorders may be prevalent. Training equips the workforces with the knowledge to identify and support eating disorders. This will improve early detection and intervention. It’s important that training remains an ongoing thing, moving with the research and the state of services and eating disorders in general. It shouldn’t be a one and done sort of thing, because we’ve still got so much more to learn, so much more to expand upon. Early interventions is, unfortunately, not as simple as people would like to think. It may take practice. It’ll be interesting to see this training in action, whether it’ll be similar to the Mental Health First Aid in Scotland. Training looks to be more catered to the relevant roles, so you may not get the exact same training if you are third sector compared to a sports coach. However, the training and education is extremely helpful and should be emphasised and encouraged, as I know eating disorders are too easily left out of the conversation, which has an obvious negative impact to the person with the eating disorder.
Recommendation 13: Families and carers
As noted in the Lived Experience Panel, and in the current opinion of services, families and carers are an important part of eating disorder recovery, particularly with younger people. But they are so often ignored and left out of the person’s support and treatment. In this recommendation, there is expected to be a higher level of support provided to the family and carers from the beginning and as long as is needed. This is hopeful, as, so often, the need for longer and more consistent support gets a negative rap; effectively punishing the person for needing continuing help. However, if a person is getting support for their eating disorder, and their home environment is a big part of their life, or a part of their life that affects the person, then not providing the support for the carer can be damaging to the person’s recovery. Yes, recovering, at the heart of it, is someone one person needs to do, but it can be a team effort. The families and carers are an essential part of that person’s life, if they are involved in that way particularly, so by not giving them the emotional and practical support… it’s setting the whole dynamic up for a fall. By including them in Lived Experience panels etc., then you are getting a broader picture of what the person with the eating disorder needs to ensure longer-lasting recovery.
Recommendation 14: Inpatient Eating Disorder Services
Similar to Recommendation 10, having a more equitable field of services across Scotland would be highly beneficial and is very much needed. This is especially true for inpatient services. As it stands right now, people experience the postcode lottery when it comes to accessing services, particularly those in rural parts of Scotland. There are people out there not getting the treatment they need, or a certain standard, just because of where they live. And, that’s simply not fair. The limited access to services can be significantly detrimental to community services, which could overwhelm them, and, perhaps, cause the workforce involved to feel unconfident and uninformed in providing a level of support they aren’t always equipped to cater for. This recommendation indicates that inequalities should be addressed by the Health Boards where inequalities often are featured so they are able to work more closely on these issues. Hopefully, we see some collaboration from more established services in other Health Boards. And, so we can understand the impact of this recommendation and the work to be implemented, there will be smaller reviews for inpatient services in the next five years. This will assess the inpatient provisions regionally and nationally. Five years is a nice amount of time to see a marked change, and hits the halfway mark of the proposed end of the timeline.
Recommendation 15: Eating Disorder Research in Scotland
Research is one of the foundations to service development. Without research, there would be limited, if any, understanding of eating disorders and their treatment. So, by promoting the funding of eating disorder through NHS Research Scotland, there is a greater chance of improved research with wider scopes. We will get to understand what treatments are more beneficial, instead of relying on treatment that may be gold-standard due to its wealth of research, but it’s not effective for everyone and everything. What I especially appreciate in the details of this recommendation is the call to fill gaps in the research. As I mentioned, treatment can fall into a one-size-fits-all trope, because the research is extensive in this treatment type. However, this can lead to several people being failed here if they don’t fare well in that treatment. Not everyone does well in a particular treatment type, and that’s not necessarily the person’s fault. To add to this, research in eating disorders, whether to better understand the disorders, or the treatment, is heavily rooted in the stereotypical demographic. So, we have an overt focus on anorexia nervosa, particularly severe cases, females, younger people etc., Therefore, specifically targeting the research gaps allows for our understanding of eating disorders to evolve and grow, giving people a better chance at recovery. I hope to see research with Scottish populations, males, LGBT+, eating disorders other than anorexia nervosa…
These recommendations are hopeful, and, yes, while they are ambitious, I would rather they were, because it provides encouragement. I believe that someone of these will take longer than ten years, particularly if we have ongoing problems with COVID-19, but if we see strong foundations laid with some substance to follow soon after, then I take that as a positive.
However, it’s important that we don’t take our foot off the gas here. These are recommendations, and not actions, so we have to keep shouting to ensure these recommendations don’t fade into the background, leaving us with the same service, or an unfortunately worsening one.
I took part in this review, as someone failed by the services, and failed by the adults around me, as no one noticed my eating disorder. No one intervened, and I was left with it for 2 years in high school followed by unnoticed relapses. I did not receive the help I needed, and I don’t want that to happen to anyone else. I don’t want anyone who is receiving treatment to feel lucky just to be receiving treatment. They deserve the best treatment possible for them, and not be expected to like it or lump it.
The review is encouraging, but I hope that’s not all it remains to be.
If you want to read the full review, check it out on the Scottish Government website here.