Why is an NHS trust stopping me from receiving potentially life-changing treatment?
Having always had a difficult relationship with food, weight and exercise, a decline in my health during the pandemic led to me becoming anorexic and losing a lot of weight.
At that time I still weighed over 9 stone, but I would check my weight three or four times a day and see myself limit the amount I would drink in case it made me heavier.
Things have since become worse, and I now weigh under 6 1/2 stone, with a BMI of around 13.
I truly want to get better, but for so many reasons putting weight on is difficult.
Firstly, it's the mental battle. A slight increase in my weight terrifies me - it makes me scared that I'm out of control and will become fat again, rekindling feelings I had as a teen. I sometimes take out half a spoon of rice from my meal to calm myself down.
But my needs are even more complex because I have severe IBS and Functional Neurological Disorder which makes it really painful to eat as my nerves are ultra sensitive.
I find eating solid foods so difficult, and after dinner I tend to stumble up to bed and collapse.
Moreover, when I do manage to put some weight on, it causes my IBS to become unmanageable and I soon lose the will to keep going in the face of constant diarrhoea.
I've reached out repeatedly for help. I tried different psychological treatments with the AEDS (Adult Eating Disorder Service) team at Addenbrooke's but found them unhelpful - indeed, I think their attempts to support me actually contributed to my weight loss.
Desperate to get better, I volunteered to go into a medical setting for help even though it scared me so much I wanted to end my life. All I asked was the chance to plan ahead so I knew what to expect, but also to advise how my additional needs could be accommodated.
Despite this, I was told I had two days to get myself into hospital or I would be sectioned. I had no information on what treatment I would get or how long I would be there for. And when I did get there, I received no help and was told I was free to leave at any time.
The whole episode was traumatic- my IBS and nerve pain went into overdrive and I received no pain relief.
On exiting hospital, I was offered some more psychological support but I informed the AEDS team that I had no confidence in them, and that I didn't believe I could make long-term progress without getting help for my IBS.
Addenbrooke's response was to refuse to co-operate with gastroenterology, to not take seriously the likelihood that I have autism which may be a contributory factor to my problems, and to then discharge me.
To say this has had a negative impact on my family would be an understatement. They are petrified I'm going to drop dead.
Recently, despite my previous traumatic experience, I expressed willingness to try again with another NHS provider if they could offer me holistic care encompassing my anorexia, IBS and pain. A referral was sent off to the Maudsley Hospital who have a team of experts with experience of managing IBS, FND and anorexia, but this is now being blocked by Addenbrooke's who insist I have to be re-referred to them.
This is despite the fact I have absolutely no trust in them, have been discharged by them already, and have a legal right to choose which hospital to attend. Understandably, this has left my family in pieces and now fearing that all hope is lost. I, too, can't see a way out.
The reason I'm writing about this now is because there is still a slight window of opportunity. FND has left me struggling to walk or leave the house. It has sapped me of my strength, energy and the ability to function even close to what a person my age should be able to.
The IBS makes things doubly difficult, as my stomach is a car crash.
But I remain defiant and don't want to give up. And while that defiance flickers I want to expose the roadblocks I face now rather than when it's too late.
We know how bad eating disorder services are right across the country - https://www.bbc.co.uk/news/articles/c897g3d748zo.
I just hope my story isn't added to the list of those who have already lost their fight, as all we will hear are the words 'opportunities lost' and 'lessons learned'. And they will provide no comfort to anyone.
WHY on EARTH is Addenbrookes blocking your referral to another hospital where you HOPEFULLY will get the life saving help you need! I'd have thought that at the very least that is illegal. Make a great deal of noise; go public, newspapers, radio, TV. Can your MP help? Take 'em to court!. Get some initial free (pro bobo), advice from a solicitor. This is dobsonflicky@gmail.com speaking!
ReplyDeleteReading this is so sad because I know all too well how awful this service is and how obstructive they are not only whilst under their care, but even after discharge when they still attempt to block any future attempts to seek help. I had some very similar experiences with them that have traumatised me and left me terrified of ever being referred back to them. I can easily believe that you feel the same way. They also threatened to section me and promptly followed it up by discharging me because I'd "been in crisis too many times". I'm also autistic and, similarly, asked for a contingency plan multiple times, but they refused to give me one. My GP is currently trying to refer me to another ED service at the moment, but I'm so scared that the referral will be blocked much like yours.
ReplyDeleteThe sad thing is that I know that you and I are by far not the only ones who have suffered i.e. are suffering because of AEDS's judgemental attitudes and total failure to take any proactive steps to support their patients before a crisis occurs. In particular, the unwillingness to take co-morbidities even marginally into account is very frustrating. The enthusiasm with which patients are pushed towards DBT instead or are slapped with an EUPD label without any clinical rationale is disturbing. Like you, I've lost any trust that I once had in them and don't think that it is a clinically safe service.
I so hope that your referral to the Maudsley can be successfully received before it's too late. I've signed the petition
Thank you for the reply and I'm sorry it's taken so long to get back to you. I'd like to find out more info if it would be possible to speak to you?
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