[when.will.it.end]

My mum has written a letter to my team & I've added a bit at the bottom. I'm really really really scared about it; I don't want them to hate me, or turn me away because of it. I don't want to piss them off or for them to think that I'm a complete bitch. If anybody doesn't mind, can you tell me what you think? And if you reckon there is any way they could...hate me for it? I'm terrified. I don't want to be out of order. Any feedback would be great, thanks. Sorry it's long x

Dear Ms C, Dr P and Dr W,

Katie was discharged from X Hospital on 11th April having spent 4 days in the ICU. At the time of discharge the ICU team were of the belief that what had led Katie to needing this treatment was self harm by overdose. It was clear however at this point that Katie did not take an overdose or self harm in any way- her blood tests were clear, we were able to account for all her prescribed medication, and Katie was clear she had not hurt herself. It also was not the first episode of this type that Katie has experienced, only this one had become much more serious.

As it was not self harm, it means that the cause for Katie’s time in ICU is unknown. Theories have been put forward by Dr P (stress and poor nutrition) and Dr W (severe dissociation). However these are theories, there having been no follow up cardiology or neurology despite requests for further tests by ourselves to establish the cause.

The ICU staff told me that the notes from the A and E department who had first seen Katie on the night/early morning of 6th April said that her heartbeat was irregular and of concern, and her breathing was also of concern. That led to the decision for her to be intubated. Whilst Katie was on ICU the staff, on at least 3 occasions, tried to extubate her. The first time they lightened the sedation on Katie, she responded and they did remove the tube. However after about 6-7 minutes they had to intubate her again after heightened concerns about her breathing. The next 2 times they lightened her sedation, Katie did not respond appropriately and so they did not attempt extubation again.

They let Katie rest and then lightened the sedation again. This time Katie began to make independent respiratory effort and so later they successfully extubated her. Once Katie was conscious and breathing however, she then developed severe muscle spasms that lasted several hours and were managed by diazepam. They seemed to be a sign of anxiety but also, to a lay person, also appeared to possibly be some kind of seizure. Katie certainly was unable to control them. These abated and despite us expressing concern at the persistance of the staff to label this as an episode of self harm, Katie was discharged to the care of her GP and CMHT with no other medical follow up agreed at all.

Katie then saw Dr W who advised that a CPA meeting was needed and he would make a referral to the Liaison Psychiatry team who could offer specialist help. To date, there has been no CPA and Katie has not received any contact from Liaison Psychiatry.

Both Katie and myself have spoken with Dr P, Dr W and CPN C. Katie has also seen Psychologist G. I have expressed my serious concerns that Katie has no explanation for what caused her to pass out, have irregular heartbeat and respiratory distress requiring 4 days of intensive care, and has had to live with this fact for over 7 weeks now.

Concern was expressed to me by C that Katie does not “engage well” with services and it is therefore difficult to help her. I find this a worrying perspective at this point after Katie has been attempting to live her life, manage university, and moving house. This is on top of the numerous repetitive appointments she is asked to attend by all the professionals involved where Katie is asked to go over the same information repeatedly, is asked to engage with 5 different professionals, who have not, in our view, provided anything substantial in the way of care planning, coordination or meaningful understanding of the complexity of Katie’s life, needs and emotional and physical symptoms to date. Frankly, there seems a whoeful oversight of the mix of both physical and psychological symptoms Katie experiences and to feedback that Katie does not engage well is both unhelpful and an oversimplification of the situation which takes us nowhere. As I have stated, Katie is being asked to engage with 5 professionals (now down to 4 through Katie’s exhaustion and subsequent decision to withdraw from the support offered by the university disability service).

A CPA is urgent in our opinion. Why there is no progress in this after 7 weeks requires an explanation and a quick remedy. C spoke and agreed with Katie on 4th May but Katie has subsequently heard nothing from C.

And to make it clear- Katie has achieved, despite both huge physical and psychological hurdles and challenges, to move forward in her life. She has completed 2 essays and 2 exams at uni. She is managing her relationships with family and friends. She has managed to attend the majority of appointments she has been given by professionals. But her medical needs have still not been met in any more than a superficial way during this period. It is completely unsatisfactory. You should also be clear that Katie continues to be very unwell. She is managing this by the only way logically left open to her. By minimising it, telling herself there isn’t anything wrong really, and that the lack of action and proper coordination and planning by her medical team actually just confirms that. So to be concerned that Katie is not helping herself, that she does not open up to professionals, that she seems to be managing anyway should be taken in the context of all the above.

We actually think we are at the point of a formal complaint. However that is not our priority. What is is to ensure that a CPA is help a soon as possible and that Katie is seen by the Liaison Psychiatry service as soon as possible. It is also entirely unhelpful to continue with a routine of several appointments with different professionals who progress nothing. That exhausts and depresses Katie even more.

Talk of a referral to Eating Disorder services has also been made. Apparently however that has not been progressed either.

Should you feel our requests to be inappropriate, then I would ask that you put your views and reasons into writing to Katie at the earliest opportunity.

Yours sincerely,

(Mum).


I would just like to add that this letter makes me incredibly anxious but I do agree with everything it says; I’m just not strong enough to say it. I’m extremely reluctant to be as frank about the situation as my Mum has been because I am aware that you are all essentially good people who are trying to help; I don’t think it’s a lack of good will on anyone’s part that things haven’t been more effective. After some of the previous experiences I’ve had with professionals and with men/people throughout my childhood, professionals being humane with me is still a shock and I have a hard time processing the idea that anyone would want to help rather than hurt me. These core beliefs weaken my ability to see the situation clearly; I’m so busy being grateful that you all haven’t manipulated, abused or neglected me that I am inclined to overlook any other problems there might be just to make the situation as easy as possible for everyone. At the heart of it all I do not think I deserve any care, attention or help so asking for it feels often impossible even if it actually is my right. I am blinded by confusion and gratitude. And I feel like I’m at risk of turning you all against me by raising any issues like this.

My Mum is most defiantly an anxious Mother who is terrified about the fact her daughter ended up on life support, understandably, but I don’t think this (or her own difficulties) have affected her ability to see the situation clearly. If I had the strength or ability to step back from the situation I am sure I would saying the same. I’m very grateful for her support in this.

I am exhausted. It’s becoming clear that my often indifferent attitude to the severity of my experiences and current health, along with the dissociation, is literally necessary to survive emotionally day to day. I have no idea how to process daily flashbacks of rape & abuse, severe insomnia, the current intense issues with my Dad & sister and the fact I ended up sedated in Intensive Care for four days with clear explanation or anything to prevent it from happening again. I hope my intent and effort to recover is clear.

I don’t want to piss anyone off, appear ungrateful or ‘difficult’ in any way. I am intensely aware of the typical power imbalance professional/patient relationships and how I am in an extremely vulnerable position, very open to potential manipulation. I’ve seen it and experienced it before and I have no intention of it happening again. For example if something isn’t working with the patient, the professional gets offended that their efforts and knowledge aren’t enough and turns it round on the patients lack of ability to work with what’s there regardless of how appropriate it is. I am not saying that any of you would do this but it’s what I’m scared of. Actually, Dr.W I think you manage that power dynamic extremely well and don’t feel vulnerable with you in that way at all.

I’m happy to be challenged effectively. If there is anything that I could immediately do differently, or if indeed you think I am being difficult or not engaging in services then please say so, so we can discuss it properly.
I don’t have any answers and I don’t know where to go from here. I feel in the middle of frequent outpatient appointments, trying to explain myself to each individual clearly but think that each professional has a certain role and there isn’t anyone seeing the whole picture. I’m trying to do that myself and make appropriate decisions but it’s too much. I feel quite isolated in the middle of it all. I don’t have any direct requests or suggestions because it is all so complicated. I don’t expect a miracle but some clear direction would be great.

Thanks for reading.

Katie.