Letter to my team. Help please. *UPDATED post 58*

[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.

[Stellata]

What if you asked if someone could sit down with you and help you draw an image or set of images that explain how things are for you?

[Sigma]

Or a meeting with everyone involved to map out a way forward? Good letter though! And make a formal complaint if you don't get a satisfactory response.

[ghosts in the machine]

I think this is a really good letter. The thing with the NHS is that you have to be direct, you have to be confrontational and 'pushy' (for lack of better words). They need to hear clearly what an effect this is all having on you and need to be shown how useless they have been so far in arranging any sort of appropriate care for you.

I don't think they'll hate you for it at all, nor think you're ungrateful or difficult or anything like that. I really hope you send this to them.

[startingagain]

Personally I'd add bullet points to the end to summarise what exactly you want the outcome to be from your letter. You could also mention contacting PALS.

[when.will.it.end]

Thank you for your replies everyone

I can't really see it clearly because I know these people personally. I think I'm attached to them and I see them as people before professionals. It's really helpful hearing what you think.

I think there is meant to be a meeting at some point, that's what my mum was saying about the CPA but I think it's unclear even who to invite.

[bitomato]

Hi Katie,
The letter from your mum and you seems straightforward enough. CPAs are meant to be held regularly anyway. I know that it would be another organisation to contact- but have you thought of contacting MIND Advocacy. They helped me alot when I had to contact the NHS. Complaints don't have to be taken as a negative. You are trying to make the service better and get the care that you need. If your health carers are professionals they would not take it personally, and it is clear that neither you or your mum are personally attacking them. You just want information and direction.

I don't know if you can control who attends the CPA- only what information you want and need. Which one is your key worker? They should be able to guide you best.

[PinQ]

Hi Katie, just wanted to say that I really hope you get the help that you deserve. It sounds like you've had a really tough time and as usual the NHS has failed to properly support. As said above I would mention PALS or maybe even include them at this stage. Try not to worry, professionals cannot react to you with such personal feelings and they may well agree that the right things have not been put in place for you.

[when.will.it.end]

Thank you both for taking the time to reply, I really appreciate it.

I can't imagine what would come from it, if anything. I've been let down by the NHS so many times I've come to expect nothing. I'm sorry so many other people have had a **** time with them as well.

I'll post what their reply is?

My key worker is 'C', she is my CPN and was meant to be arranging my CPA but hasn't. I think she is actually the one who knows least about whats happening.

I hadn't thought of PALS. My mum was thinking in terms of a complaint but I hadn't thought that far.

[roiben]

Letter is good and I can not see any reason for anyone hating you as a result.

It is worth sending a copy of the letter to PALS as they will help you take this forward. They can also assist in any formality should you go down the route of formal complaint.

Do try not to feel guilty for asking for the care you have been told you need, and deserve. Hopefully the letter will help in getting in for you.

Be gentle with yourself - I know that may not be easy right now, but it sounds like this is very tiring for you, and so rest and gentle care sounds like it would do you good.

Roiben x

[when.will.it.end]

Thanks Roiben.

I'll talk to my mum about contacting PALS.

I'm finding it really difficult to chill & be nice with myself. I'm a bit of a mess tbh.

[Sleepless123]

Hi

im sorry im a bit low on words and also just back from France so tired.

But i read all of this and wanted to reply even if im not much use.

i have been following your situation and threads [hope you dont mind] and it is clear you have been going through and are going through so much.

i think this letter is just so so brave by both you and your Mum.And that really what has been said really needed to be.

The services need to get themselves together quick smart cos you deserve better than all of this and certainly a CPA should be held as soon as possible too - i would have thought that essential.And if they dont kinow how to invite it might be hard but they need to start trying to work it out!The least you deserve is a CPA and effective care co-ordination and you should not have had to wait this long.

i dont think the services will hate you or your Mum for this letter and i know you are worried about it but i think you are both being very fair in what you have said and they should appreciate your input and the taking of your time to write.

i have never used PALS but also think this is possibly certainly something that might be positive for you to consider.And i also know you and your Mum definitely dont need the stress of considering a formal complaint right now and i hope it does not need to go that far but i hope you will consider that path if you do not get better treatment after trying these avenues cos you are valuable and deserve better.

Sorry this has been long and ramblind and no use but again i think youve been really brave.

Thank you for sharing the letter with us and please dont let us know how things go from here if you want to/feel able to.

Many many best wishes to you and i think you are doing fab to write this letter, engage with services at all [which actually it looks like you do rather well and how dare they say the opposite and not even to you directly but to your Mum] and attend uni etc despite all that has been and is happening.Personally i admire you and know it must take incredible effort and i hope you know i am here for you.

im also not surprised your feelling a bit of a mess to be honest.Things sound really hard but you are so strong.You have come through so much already and you can get through this too.Just please please know we are here.

xx xx

[when.will.it.end]

I don't mind at all! Kath, your reply means the world. I know you've got a lot to deal with as well. I really appreciate you taking the time to write and you said lovely things I hope you're okay lovely x

[not_so_insig]

I dont have anything to add, but I am pleased your mum is fighting your corner!

[when.will.it.end]

Me too. I'm lucky.

I've showed it to a couple of friends and they've all said I need to not be so nice I'm redrafting all of my part to try and be clearer about what I want and how things are for me.

I'm scared. But they are saying that the doctors are there for me and I should be expecting a service. They say I shouldn't be focusing on anything that I've done right or wrong.

[bitomato]

Quote:

Originally Posted by when.will.it.end

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 - definitely??? 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.

Katie while I do think it important to be honest, I agree with your friends that you are self depreciating in a lot of your section of the letter. Also, I hope that you realise that you do have a right to have goals of the service clearly laid out.

[when.will.it.end]

Thank you. I've edited my part, please let me know what you think:

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 concerned. 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. However, I think relaying the events in black and white shows that there have been mistakes with very serious consequences.

My Mum is most definitely 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 be 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 flashbacks, insomnia, the current intense issues with my Dad & sister and the fact I ended up sedated in Intensive Care for four days with no clear explanation or anything to prevent it from happening again. As I play down the reality of my daily life perhaps I’ll be able to write clearly here: I suffer constant flashbacks (in various forms) of rape, abuse and the like; I am continually exhausted from lack of sleep, food and the energy it takes to maintain emotional stability during these flashbacks; more often than not I’m too dissociated to retain any awareness of time, place or person and I’m plagued by obsessive ideas that I’m completely worthless and undeserving. I have vivid nightmares every night and as far as I can tell all night whilst I’m briefly resting enough to be more asleep than awake. The events of my childhood are replayed in my current life with the situation with my Dad and sister as I stand back and watch my sister develop the ideas I now can’t get rid off and express self hatred, whilst being completely powerless to protect her as much as she deserves, despite all my efforts. The knock on effect of all of this is that I am determined to control my body, as I seem to have so little control in everything else in my life, through food and weight loss yet here I am, as fat as ever. I watch my Mum suffer and even though she is so strong and does amazingly well to protect me and support me the way she does I still know and it hurts. To add to this not being able to control my consciousness and being vulnerable to the constant risk this entails in a traumatic way to live in itself. I lot has happened in this past year. Having said all of this I hope my intent and effort to recover is clear although I can’t prove this adequately in this letter.

I’m happy to be challenged effectively. If there is anything that I could immediately do differently that would be of benefit to my health then please say so, so we can discuss it properly.

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.Wright I think you manage that power dynamic extremely well and I don’t feel vulnerable with you in that way at all; I’m yet to find a way to articulate what this means to me.

I’m at a loss as to how to deal with all of this. I’m sort of in shock as to how anyone expects me to deal with these events unguided. I don’t understand why this wasn’t explored with more depth after Chapel Allerton and something was not put in place then. I feel in the middle of frequent outpatient appointments, trying to explain myself to each individual clearly, despite the barriers of dissociation, stress, panic, pure exhaustion etc. I think that each professional has a certain role and there isn’t anyone seeing the whole picture. I know everyone has made an effort to convert with each other but I’m left in the middle of it all. I also think with having more than one person involved, and nobody especially co-ordinating the overall care, it is very easy for responsibility to be passed from professional to professional without conclusive direction. I’m trying to take that role myself but it’s too much and I don’t think it’s appropriate. I feel quite isolated as a result. I’m trying hard but there are things that no matter how much psychological skill, will power and behavioural effort I exercise, I simply cannot manage alone.

I think it would be logical and beneficial for me to maintain a therapeutic relationship with one appropriate professional who can then liaise on my behalf, therefore reducing the amount of appointments I have so that I can focus on that relationship and that professional is able to withhold responsibility. I think this professional needs to be someone who has knowledge and experience in the problems I have and has access to outside referrals. I also think it is essential that therapeutic boundaries are maintained and respected. For a number of reasons (which I can explain further if needed) I think Dr. Wright is currently the most appropriate person for this role. If I’m involved with any other professional directly then the purpose must be clear and direct. I also think that it is vital that there is a stronger and more comprehensive understanding of my overall presentation and needs. From here a direct plan towards recovery should be made.

I should not have had to go through what I experienced in Intensive Care and frankly, I deserve better.


Thanks for reading,



Katie.

[when.will.it.end]

Do you think I should just cut my part out altogether?

[ghosts in the machine]

I think you should leave your bit in. It's well written and explains clearly what's happening for you, which you say yourself is something you struggle with at appointments amid the dissociation and other things.

[DannieGirl]

I think this is a really good letter. you won't be hated for it at all. if anything they'll be please you opened up!
good luck hun xx