I received an email a little while back, stating that my DNA was being shipped to Milton Keynes. I had largely forgotten that, a good 5 years ago now, I participated (donated? I’m not entirely sure what the correct term is) in a wider project named Charlotte’s Helix. Charlotte Bevan sought to collect samples from over eating disorder 25,000 sufferers in a bid to begin prioritising the need to research one branch of mental illness which is demonstrating itself to be evermore genetic. Charlotte passed away in 2014, and the project has slowly continued in her absence.
I think my DNA is now in Milton Keynes (sort of exciting). From what I gather, the NHS National Institute for Health Research has asked BioResource centres to transfer DNA collections to a different location, and connect different pools of data for a wider field of research. It sounds like things are (hopefully) progressing.
Once I’d investigated the email enough to decide it wasn’t spam, having really forgotten my 2013 trip to the King’s College Maudsley NHS trust, I’ve been pressed to write a little more about my own experience with the NHS. It’s a love hate relationship, as you will come to discover. I gave my DNA in to Charlotte’s Helix, hoping that one day, we will have the knowledge to combat mental illness from a point of prevention and preparation. Following the same line, although dissociating from genetics, I also really hope that one day, the NHS might be better set up as to red flag people who require treatment, and provide an improved service, as to increase the chances of recovery, in cost effective methods which have already been researched by BEAT, and will be provided below.
Under NHS England waiting times targets for eating disorders, under-18s who are classed as an emergency should receive treatment within 24 hours, urgent cases should be seen inside a week and non-urgent cases within four weeks. I’m not entirely sure what the exact categorisation for ‘urgent’ is, but I’m guessing that it is developed established according to a critically low bmi, and life threatening vitals. These targets are largely not being met. Barbara Keeley, Labour’s shadow cabinet minister for mental health, has continued to voice disapproval surrounding the lack of direct funding to mental health sectors, drawing attention to the 2016 BEAT report mentioned below. BEAT is honestly a blessing in the campaign for awareness, recognition and funding towards all forms of eating disorder.
Now I’m definitely approaching this more from the eating disorder point of view, over anything depression/OCD related (else this blog post would end up well over 10,000 words, and I’ve already been told you get bored if over 800, and/or in the absence of pics…)
I was lucky to get into treatment for these other issues mainly on account of how low my weight was, and went on to receive private treatment thereafter.
A little researching shows that referrals for depression are commendably improving; 88% of people are waiting less than 18 weeks for a referral to talking therapy, with the 2016/2017 performance statistics showing a reduction in waiting times and improvement in recovery rates.
I think however that I will lead you to BEAT’s somewhat sobering statistics, tied in with my own experience.
- People wait on average 3 ½ years between falling ill and starting treatment
- Only 14% of people are referred within four weeks of their first GP visit. Even if you, or a carer, implores the GP for a referral on to a specialised centre of care, it isn’t happening unless your weight is low enough, so for many sufferers, it’s a case of starving a little bit longer before you can be seen.
- Gender is particularly appalling. Males wait on average 28 weeks on average for a referral, vs 10 weeks for girls.
- 27% of sufferers did not begin receiving treatment for over 3 years post initial referral
- It isn’t even smooth sailing once you get a referral. The time between initial GP appointment and referral is usually another 12-18weeks.
- As if these delayed statistics were not bad enough, every stage and delay is doubled for those over the age of 19, no longer under CAMHS’ wing.
Before I continue, I just want to say that I really don’t hate the NHS. I’ve just had some really interesting and variable experiences. I was told that I wasn’t sick, nor that thin, a few times before getting my own referral (if I get as far in my lifetime as raising a little bit of awareness in how to engage with and respond to even symptoms of disordered eating, particularly in commenting on the weight of someone exhibiting sign of a hugely competitive illness, I will be incredibly happy).
I’ve endured quite a lot of torturous and disorganised CAMHS therapy, and been passed between about 12 employees in total. Outside of mental health issues, I’ve had some really bad and outdated advice over the contraceptive pill, and a poor, googled false diagnosis of plantar fasciitis. All this aside, 6 years of treatment for depression, anxiety, and eating disordered related treatments – according to calculations provided below – puts me at a debt of over £500,000.
Were I not quite so lucky, in America for example, my access to treatment would have been all the more limited. American statistics place a 30 day stint inpatient at around $30,000, with many inpatient clinics running for 90 days – and then bearing in mind that many sufferers will end up inpatient on multiple occasions. The entire recovery process ends up taking several years, on average. Inpatient, followed by extensive outpatient treatment and support easily places the individual in hundreds of thousands of dollars of medical expenses. BEAT suggests that this cost doesn’t just sit on the individual.
Carers end up with an average annual cost of £32,672, taking into account time off work (the most evidence based supported form of treatment for eating disorders is family based), and specific foods such as high calorie Ensures (trust me you’d rather have peanut butter).
2015 BEAT calculated eating disorders to cost the UK economy £15billion per year, £4.6 bil directly to the NHS. This is obviously a huge and ever-increasing figure, particularly when considering the current pressure to cut NHS expenditure (figures show that whilst the Government states mental health spending is at new, record levels, the actual income of mental health trusts in England is currently lower than it was in 2012, when taking inflation into account).
Whilst this extremely expensive inpatient, treatment should generally be regarded as a last resort (replaced instead with the solid support of specialised outpatient clinics), services in the UK are so strapped, that children often end up being sent hundreds of miles away from home. Cherry on the cake sort of trauma, when on top of battling a life-threatening illness, they end up isolated in some far-off part of the country.
For all the faults I find in the NHS’s current approach to dealing with eating disorders (minimum bmi required for any treatment, over a year long waiting lists, the greying GPs from the dark ages who are still insistent that mental health is really all fabricated, and that they’ve seen skinnier so you’re fine), I am extremely glad for the safety net and treatment that we do receive under the NHS – as is my mum for not getting us into half a mil of healthcare debt.
The NHS is not always good, it’s definitely not perfect, but the services are (in the long run) there for sufferers, and hopefully with recognition and awareness we can work on improving the treatment services provided.
BEAT puts forward two comparable patients, to demonstrate the effectiveness – both in terms of cost and, more importantly, psychological assistance and recovery – of a faster method of response and treatment to an initial diagnosis of eating disorder. I wish I was savvy enough to make little graphs or flow charts to demonstrate their paths, but unfortunately my GCSE IT lessons were dropped for CAMHS (I use this excuse whenever someone tries to get me to use spreadsheets).
Loosely, BEAT stipulates that the current and painfully slow system of treatment costs more than twice as much in the long run, as well as obviously taking far longer to assist the sufferer back to recovery.
I’ll save you the extended details, but my experience looks not dissimilar to patient number 1, other than my mother fighting tooth and nail to prevent me from being sectioned; hence no inpatient, just an extra 5 years of family based and individual therapy added on. Much in the same way as patient 1, I was not that unwell when initially referred. Still extraordinarily sad, dysfunctional, and vehemently in denial, but probably at a bmi of around 17. The first response my family had from taking me to multiple GPs was a very finite ‘she’s not skinny enough’. I feel like some things, even for those completely obtuse to mental health, are self explanatory – calling someone even potentially borderline, or undiagnosed, ‘not unwell enough’ is pretty obviously included. It triggers a ‘not yet’ type of clause, which the sufferer will then often be pushed to achieve.
So, to conclude, I do wish the NHS was funded adequately, and that enough of those resources were pooled towards mental health. I wish sufferers didn’t have to wait as long, and suffer the consequences of being shifted from service to service. I wish those services were more up to date, and that even GPs were trained more in how to assess and deal with disordered patients as the first port of call. I am however still deeply grateful to the blanket of care provided by the NHS, and hopefully, with charities such as BEAT working hard to disclose and promote awareness surrounding better paths for treatment, we can work towards a more efficient and swifter form of treatment, which in turn should prove to be a cost-cutting method with more benefits for the patient at the end of the day.
Please do check out Charlotte’s Helix!
Either for any donations (I’m still trying to persuade people to do the 3 peaks challenge with me…), or as a sufferer/past sufferer of anything eating disorder related, OR even as someone related to a sufferer, if you’re willing to give some DNA for a great cause!