Can I dispute discharge summary after NHS therapy? (TW)

[BabyMariesBow]

(TW for various) and I am sorry this is long but I am so devastated.

I am so upset and have basically had a weekend of absolutely spiralling and trying not to SH (something I haven't done in a good few years)

I have various MH issues and am diagnosed AuDHD.

I have had CBT therapy online (like studying anfbanswering questions alon and online via video multiple times. I have been struggling a lot after an extremely traumatic event about 5 years ago so GP refered me for F2F talking therapy and it was with a CBT counsellor.

So anyways. I have an NHS diagnosis of OCD and this is what I wanted help with most.

The therapist said that to deal with the practicalities of putting systems in place to deal with everything she felt I needed talking therapy first because if the amount of trauma I was packing from childhood and repeated adult incidents.

So we did 12 hours of face to face talking therapy.

I discussed my childhood trauma (extreme physical violence, emotional neglect, verbal abuse, many incidents of sexual inapproriateness with adult males (though no physical sexual abuse) and then the incident that occurred 5 years ago which I don't want to go into but I believe I have PTSD and CPTSD from both.

So in these session we talked A LOT about my OCD. How the intrustive thoughts work, how they affect me. The physical responses I have to the thoughts (having to move or check things repeatedly) The magical thinking (which is documented 20 years back on my NHS file!! - having Compulsivethoughts about my kids being kidnapped and not being able to do the school runs because I believed they would be missing when i called to collect them) The compulsions (including washing my hands till they burn and burning my head with a hair dryer)

All these things have been discussed prior with a practitioner and i have an official OCD diagnosis on my file.

Not once did my therapist question my OCD. She refered to it consistently and how it affects me. How we will tackle it when I come back for another 12 sessions.

We never had a discussion about 'IF' I have OCD or not, it was just a given with my diagnosis and what I deal with every day and she seemed to be so understanding about it.

(I even told her things I haven't told other people like the way I have to remove the washing from the washing machine 5 or 6 times because I think my cat is going to be in the washing machine - so i have to see the cat, out in the hall, remove each piece of clothing and carefully put it back in, pressing down so i can feel there is no cat and then shut the door with my eyes on the cat. Even then some days its really hard to press 'start' incase the cat is in there)

A big part of OCD is self doubt. And not being able to trust your own thoughts.

So getting a diagnosis was a huge relief as for years I was told I was just 'anxious' and depressed but I knew there was more going on.

So I got my discharge summary on Friday and this is what was written...

__

Our focus was / Outcome:
Babymarie referred into the service for difficulties with checking and compulsions which looked
like OCD symptoms. Through assessment we swayed away from OCD and understood her
difficulties as low self esteem. Babymarie has a very low perception of herself which causes a lot
of critical thinking, blame and disproportionate responsibility.

BM is always looking for threat and has a high baseline of anxiety.
BM made good improvement and progress in recognising the patterns and beliefs,
however more work is needed to improve confidence and self esteem.
BM was engaged in the sessions and worked hard throughout - it was a pleasure working
with her.

Recommendation or follow up:
BM is to have 3 months consolidation period to use skills and techniques and practice
self compassion. Another set of CBT is recommended to build up confidence and tackle her
low self esteem and anxiety.

__

I am so upset because she is saying 'which looked like OCD symptoms and we swayed away from '

That is not true at all. I do not have OCD symptoms. I have OCD. I am diagnosed.

And she said we swayed away from that and understood my difficulties as low self esteem??

So my childhood abuse, the traumatic event from 5 years ago, my OCD all that is low self esteem?

I am so mad that she has reduced everything I opened up to her about to low self esteem and anxiety after I told her I have spent years fighting to get proper help and not to just be labelled as anxious, like women always are!!

I am just so upset because she was so supportive and didn't talk to me about any of this! She didn't mention anxiety or low self esteem or her questioning my OCD to me at all!!

Then she presents it as 'we'!! Like we have come to this conclusion together.

I know its just one summary but I have been waiting for this therapy for years, a tier 3 talking therapy and now I just don't want to go back for the 2nd half. I don't trust her. I don't trust them.

Now it just looks like all my issues are just down to me being a little anxious when the scope of what has caused this is so much greater and has so many more factors and layers :(

When I read that report I honestly wanted to seriously hurt myself. I was so crushed at the flipancy and misrepresentation.

Can I complain about this?

Your interpretation isn't how I'm reading it.

I'm reading that she dug deeper into the source of the OCD symptoms being displayed and the source was anxiety and low self esteem.

However I'm sure you can ask for it to be changed if you disagree.

"Which looked like OCD symptoms/ we swayed away from OCD"

That reads as it is not OCD.

If you went in for treatment for a pulled muscle in your back but they found out it was broken they would say

"Symptoms that looked like a pulled muscle but we swayed away from a pulled muscle and understood her difficulties as a broken back"

"Symptoms that looked like a pulled muscle but we swayed away from a pulled muscle and understood her difficulties as a broken back"
Well this is possible but it doesn't take away original presentation of pulled muscle.

It's up to you, it's your notes. But considering she did no work on the OCD and did work on the self esteem and anxiety and it helped, I'd say she does know what she was talking about.

It is difficult to summarise multiple sessions.
It is far easier to outline the facts eg “I saw X 3 times for 45 mins and they made limited progress”
A short summary can be analysed from multiple points of view to have included the important historical facts or to have spoke about where someone is now. It’s rare that it talks about childhood trauma for example but I doubt she would deny the importance of this in anyone’s life, including yours. Often the summary is to cover your history from when she met you, to when she wrote the summary. To talk about what was discussed or what the work you are doing should achieve.

I agree this summary does not summarise your total history. I would argue that they are not doing that. They are writing to the people who read the summary. So they are writing to their ?supervisor/ your GP and as a medical summary note. Each of these may have conflicting benefits of what information should be included.

Do you have low confidence/ self esteem?
Lots of people with OCD do, it makes a person doubt themselves so often, eg “did I close the door?” that they get less and less confidence in themselves/their memory, which in turn affects treatment/ recovery.

My reading of this was that she said your checking and compulsions were OCD.

Whether the summary is changed or not. I would try to trust yourself that the consultations were what you remember and don’t let this stop you continuing with the treatment that you obviously are working hard on.

PS this is not me saying don’t get it changed but just another perspective

I'm not understanding it as you are either. Although it's not particularly well written I'm understanding it more as "has ocd but we focused on underlying low self esteem in sessions" but you could just ring and ask to speak to therapist for a conversation about it.
It's difficult when there's so much going on for someone to summarise it and if you aren't happy with the discharge letter it's ok discuss it.

if a doctor said 'it looks like you've broken your arm' it doesn't mean you haven't broken your arm or that they don't believe you. You probably HAVE broken your arm but they won't say so definitely until you have an X ray.

İn your case, the therapist says it 'looks like OCD' because they believe you have it but haven't specifically assessed/ focused on the OCD diagnosis because they were working with you on the other areas. İt would be unprofessional of them to diagnose it or state you have OCD if that's not what the work you did together was about.

How would it be unprofessional of her to reference an already documented and diagnosed issue?

Why 'OCD like symptoms' why not 'her OCD'

So my childhood abuse, the traumatic event from 5 years ago, my OCD all that is low self esteem?

I absolutely don't understand how you interpret thedischarge summary as discounting yout childhood trauma and the trauma of the more recent event. For one thing, the low self-esteem has to come from somewhere: I imagine your therapist viewed it as being intimately connected with the terrible things you have experienced.

Similarly, she may perceive the OCD symptoms as being a product of the immensely high vigilance you have developed as a result of your trauma and anxiety.

Full-blown OCD has, I think, a significant biological causation (in addition to, or alongside, the psychological factors that help to embed it). If your therapist is indeed moving away from that account of your difficulty, I would see it as her giving weight to the enormity of your trauma and its effects on you: she is seeing your distress more in terms of life events than biology.

None of this diminishes the seriousness of your distress. I don't know where you get the idea that the professionals are saying "just anxiety" in a way that trivialises your siuffering. There is nothing trivial about anxiety.

I want to ask, why is the OCD diagnosis important to you? Is it because you see this diagnosis as providing more confidence that the professionals see how severely you are suffering and how much you need and deserve help? I think that would be a mistake. You can be suffering just as intensely with a different causation of your symptoms. Or is there a particular medication/behavioural strategy that only becomes available with an OCD diagnosis?

I have at times experienced the level of vigilance that you describe, and I don't feel that atributing it to trauma and anxiety, rather than OCD, diminishes the perception of the distress involved.

Just to add, the thing that gives me the most confidence that what I suffer during my most intense anxiety is not, in fact, OCD, is that there is always some sort of logical relationship between my fears and my checking behaviours, even if I am taking them both to ridiculous extremes. E.g., in your case, checking the washing machine is actually logically connected to keeping the cat safe. Do you have any purely irrational 'magical' rituals, like, say, reciting all the prime numbers netween one and a hundred to keep the cat safe, or always touching the back of your hand when you enter a room?
Regardless, what actually matters is that you get effective treatment. Don't worry about the diagnostic terms used UNLESS they are a bureaucratic barrier to a specific form of treatment that you have reason to believe will help you.

Because the symptoms looked like they were your OCD and on further investigation weren't.

Same as "X looked like they had stomach ulcer symptoms but on further investigation it was IBS".

Op - I can understand why this feels upsetting and invalidating. If it's any help, these NHS services (I'm guessing an IAPT service) are directed to provide 'formulation-driven' therapy rather than focus on specific diagnoses. It does sound like the focus was on low self-esteem with the hope of better understanding how this feeds into / worsens your OCD/PTSD symptoms.

What's on offer in these services (12 sessions) isn't generally enough to tackle multiple problems / diagnoses, so the therapist (and you) have to choose a focus. I'm sure this doesn't means s/he was questionning your OCD diagnosis.

Sorry this has been so upsetting for you- it sounds like you've done really well to engage in the therapy. If you re-engage later, please do try to discuss this with them and hopefully they'll be able to explain things.

I’m not sure why it matters. Whether you have OCD or symptoms presenting as such the aim of CBT is to develop strategies to overcome them. The sessions were not about discussing the trauma or previous diagnoses and this summary is not negating them.

I would interprete it the way you have and I agree it’s frustrating. I would ask for a follow up call for clarification.

"The sessions were not about discussing the trauma or previous diagnoses"

Thats exactly what the sessions were about. It was talking therapy and all we discussed was my trauma, my diagnosis', how I feel they affect me day to day. My OCD behaviours and thoughts and what happened in my childhood and 5 years ago.

Then I was told to come back for another 12 to have CBT.

I was refered for CBT therapy for OCD but she said that 12 sessions of talking therapy were more appropriate and that is what was talked about.

And it does matter to me because I feel confused because nothing she has written tallys at all with what happened in the sessions.

Short answer to your question - yes you absolutely can ask for clarification and review the letter together.
i also wonder whether you had a care plan or treatment contract with her where you agreed what you would work on? They might be worth referring to with her too.
I suspect she isn’t questioning the diagnoses but is looking at the factors that drive the symptoms - and seeing whether they can change a bit and relief the symptoms. have you been offered ‘exposure and response prevention’ for which is cbt specific for ocd?

That reads to me like the therapist is trying to look at the causes of the OCD. By recognising that you have experienced trauma, she is trying to help you see it’s not your fault and it’s understandable you might doubt yourself given how badly you have been treated in childhood.

The medical model labels collections of symptoms as “diagnoses” and places the pathology within the person - you have a “thing” and it needs fixing. This can be helpful and reassuring for some people, and feel unfair and disempowering for others.

Sometimes therapists try to create a formulation instead, to understand how the things you went through are contributing to an understandable set of reactions, behaviours, feelings in you.

It sounds a bit like she was trying to help you reduce self-blame. It’s important that mental health professionals meet the client ‘where they are’ thus if you are someone who prefers a label and finds it helpful, the therapist could work a bit harder to honour that in her style
of writing. Ask for a follow up conversation, I would bet she has not meant to invalidate you and getting your feedback might be useful to her.

This is just how counsellors write their notes. They are not qualified to diagnose and they often aren't concerned with or even particularly knowledgeable about diagnoses, so they try to swerve writing them as fact. If she hadn't seen official written evidence of OCD then she won't have written it in your notes. A tier 3 counsellor isn't a clinical psychologist - if you want 'accurate' labels you need tier 4. In reality there's not a neat line between OCD and anxiety anyway - mental health diagnoses are just constructs to make it easier for clinicians to decide on treatments. It's not like physical illness. Try to focus on whether the work was helpful and not worry too much about the notes or the diagnosis.

Just a little update because I emailed my counsellor and explained how I was feeling about it and she said that she read it back and absolutely understood why I would feel that way and that it was poorly worded. She sent an email to my GP asking them to disregard the first draft and did a 2nd one that went into much more detail and confirmed my OCD and acknowledged the things we discussed.

We had a quick chat about it and she was really nice about it.

I know my reaction is an extension of my mental health right now but she was gracious enough to put my mind at ease and rewrite it. Which I am grateful for.

I’m really pleased you got that sorted. I don’t think many people understand how important these things are to individuals.