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NHS Not Providing Treatment for OCD


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Hi,

 

My daughter has had OCD for a long time but it has been taking its toll on her and in January this year, she was suicidal. Fortunately one of her friends stopped her, for which I am eternally grateful.

 

Since then, my daughter decided that it was time to seek help. She has been actively engaging with the NHS but they have not offered her any real treatment except medication. Her OCD means that she cannot take medication. She spends hours washing her hands and has issues around associating certain places with not eating/drinking. For example, she cannot eat inside her London house and cannot eat food purchased from shops. So her weight has plummeted and she is underweight.

 

My daughter has been bounced around different teams and had more assessments then she's had hot dinners this year. She was denied the low-level CBT as being "too complex". She was denied the more intensive CBT as she hadn't had the low-level CBT (I apologise if I'm using the wrong terminology but it's how I understand it). She collapsed at the beginning of October with dehydration and was taken to A&E. She was then sent to a refuge but was discharged with no care plan. Ended up back in A&E where she stayed for a week before they found her a bed at the opposite end of the country. She was told that if she didn't accept the bed, she would be deemed as refusing treatment so she went. My daughter received no treatment during this time.

 

After ten days, she was returned to a ward in her home town. She has been placed on a ward that deals with acute problems such as schizophrenia, psychosis, etc.They have no idea how to treat her, apart from to offer her medication, which she cannot take. She has been there for three weeks and was able to eat and drink when she first went there but her treatment has been so awful that she cannot eat or drink there anymore. She has experienced bullying and mocking behaviour by the staff, sexual harassment by other patients, poor communication, the list is endless. My daughter does not feel safe there and has been threatened several times with detention under the MHA. My daughter is not dangerous to others, is not suicidal and can eat as long as she is not in the hospital.

 

I wrote a letter of complaint to the trust as I was so unhappy about things. The consultant then rang me and asked me to attend a meeting to discuss my daughter's care, which I did. During this meeting I asked them exactly what  they were planning with regards to detention under the MHA. They said that they would only do that in extreme circumstances, ie, my daughter being close to dying.

 

Today, they rang me again and asked me to go in tomorrow for another treatment plan discussion, this time involving a specialist in OCD. I agreed, as my daughter clearly needs inpatient care in a specialised unit. Yesterday, the ward manager rang me and wanted my husband's telephone number, so that he could "reassure" him about my daughter but my husband was in the room so that it wasn't necessary to give the ward manager my husband's details. This evening, a doctor from the ward asked for the details of her oldest relative. When questioned further, she said it was for "legal paperwork" and that they needed the details of my daughter's nearest relative. Now, I had already researched the MHA and know that this is usually to do with wanting to detain someone.

 

Does anyone agree with me, or am I paranoid because of the way in which my daughter has been treated? I am now trying to prepare myself for them to say that they want to section her (she hasn't eaten in a week and today was the first time she had any water since Monday evening, thanks to an incident with another patient intimidating her). The ward that she is on is completely inappropriate for her and the staff know this as the ward manager told me that he was trying to "educate his colleagues" in a unique condition.

 

I am just trying to get things straight in my head as to how to treat this meeting tomorrow. My husband, who is her nearest relative by definition, is unable to attend so it's just me, standing up for my (adult) daughter.

 

Does anyone have any advice?

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Hi Madwife,

I'm sorry to hear your daughter is suffering so badly and that she's not been helped by any of the treatment attempts so far. Hopefully that's about to change with the 'specialist' coming onboard tomorrow.

OCD is certainly not a unique condition, neither is the severity of your daughter's OCD and the knock-on effects it has had for her uncommon.

Ulimately your daughter needs CBT, whether low-level, high intensity, inpatient or outpatient. So it's good news that they're finally involving an OCD specialist. Don't be afraid to ask them to introduce themselves and explain what qualifications or experience they have which makes them a specialist.

OCD can make the world so scary that challenging it (doing CBT) can seem impossible, so I understand your daughter turning it down. All medication can really do is slow your racing thoughts which creates an opportunity to replace some of the OCD thoughts with more normal ones. Nobody should be forced to take medication if they don't want to. It's an option and an adjunct to CBT. It's not an alternative to CBT or a hoop to be jumped through to access other treatments (which is unfortunately how it's often presented.)

A regular psychiatric ward is a noisy, confusing, emotionally turbulent place - not ideal for treating someone with severe OCD. But the reality is it's often all that's available when someone isn't well enough to be treated at home.

In my opinion, the priority for this meeting tomorrow is to decide where your daughter will be treated, by whom, and on what basis (voluntary or sectioned).

Someone should only be sectioned if they are either

(1) a danger to others, or

(2) a danger to themselves

Not drinking and severe weight loss count as 'a danger to yourself' in psychiatric terms, you don't have to be directly suicidal. Their focus will be on ensuring adequate fluids and food intake before trying to treat the OCD. Paradoxically, it's treating the OCD which would help with the eating and drinking, so you'll probably have to negotiate on this. Keep pushing for OCD to be the focus of treatment (CBT) and the surroundings it's offered in conducive to taking on the challenges CBT poses.

Hopefully the OCD specialist will have lots of helpful ideas, and importantly be able to get your daughter on board with some of them.

Try to help her see that being sectioned or not is really just a case of she has to make a decision to help herself (accept CBT) or have the decision taken from her and be treated as the psychiatric team deem best. (Forced fluids, forced weight gain, possibly medication and then CBT.) Presenting it as a choice gives her a sense of control over her own destiny - something she's probably lost in recent weeks with the traumas she's been going through.

Detention under the mental health act (sectioning) doesn't require the consent of a realtive, so I'm not sure why they want other relatives' details. You're there as her support and advocate and that means you and your daughter together should be calling the shots tomorrow. Listen carefully to what's offered and then negotiate.

I'm going to draw your situation to the attention of Ashley. As CEO of the charity he might have some useful advice on getting her into a specialist centre for residential treatment of her OCD. Or if she agrees to try to eat and drink 'enough' at home then we can focus on her starting CBT.

Let us know how the meeting goes tomorrow and good luck!

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Hello, how was the meeting today?

I perhaps don't have anything to add really. There are specialist inpatient clinics for people with OCD but i'm not too sure yet on the best referral route for your daughter to my understanding they would not be able to take patients who are actively suicidal or on a section. So for now I will await any update on your meeting today and perhaps we may be able to offer more input after that. :)

 

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Thank you both for replying. I am so grateful to you both. To answer some questions:

  • my daughter is not suicidal (she was, briefly, but when her housemate stopped her, she realised that she wanted to live)
  • my daughter is not under section
  • my daughter is keen to undertake CBT and has already started with a book that was recommended to her

 

 

Unfortunately, the meeting went extremely badly. I arrived at the hospital very early, in order to take my daughter out to get something to eat and drink as she had asked me to. When I first saw my daughter, I was horrified as she was just grey all over, skin, lips, everywhere. We went to a coffee shop and she ate two huge slices of cake and drank a large drink. I thought that she was going to be sick as this was the first time she had eaten in eight days being as she was unable to eat/drink in the hospital. By the time my daughter had finished, her colour had returned to her face and she brightened up a bit. My daughter told me that her head was not good because she was tired. She was tired because she had been on 1-2-1 "care" which involved stripping her of all privacy (she was not allowed to close her room door to get ready for bed or to use her toilet - this was not the first time her privacy had been violated on the ward). It also involved a nurse waking her up every 15 minutes during the night to "ensure that she was still breathing". They hadn't bothered about this during the previous week, it was only because my daughter has declined health assessments (BP etc.) from them that day. However, during the night at some point the nurse had wandered off and my daughter was awoken by a male patient (who should not have been in the female area of the ward) poking her, my daughter screamed, another female patient saw the man, and fetched a nurse for my daughter. The nurse laughed at my daughter and told her that she had been imagining things. That made my daughter feel utterly insignificant and she was terribly upset about this, rightly so.

 

But the meeting. The OCD specialist asked my daughter all sorts of things, some seemingly irrelevant but we let that go. Both the OCD consultant and the ward consultant just kept repeating that she needed to take the medication (they had clearly collaborated on this beforehand). I reiterated that it wasn't a case of she wouldn't take it but that she COULDN'T take it. When my daughter first arrived at the hospital, she was happy to take medication but they scared her as at her first meeting with the ward consultant, she threatened to section my daughter if she didn't take the meds. The conversation rambled a bit about drugs and then my daughter said that she was struggling with the conversation as she was tired and unable to sleep. Their suggestion? Take drugs to help her to sleep!! My daughter lost it a bit at this point and said that the reason she couldn't sleep was because she had been woken up every 15 minutes through the night by their staff. Deathly silence from the consultants. They then made more mutterings about things and said how concerned they were about her as she wasn't eating and they were worried about "refeeding syndrome" (which I understood as reasonable). They then told my daughter that she could not be referred to a specialist ward as she had not met the criteria (3 x drug trials and 2 x CBT). I rather lost it at that point and pointed out that she hadn't been offered the CBT, despite her requesting it, and that she couldn't take the medication. I also told them that under the NHS constitution, she was entitled to appropriate care and had been denied that very care. So, it was completely obvious to me that they were not going to offer her CBT or counselling (which she needs for another reason) and that if she stayed there, she would actually be at very real risk of dying. They weren't going to negotiate, it was medication or nothing.

 

So I said that I was taking her home. End of, as she was not getting any help there. Medication was mentioned YET again but I said, no, I was taking her home. There were more remarks about her getting the right care (what a joke) but I said that my GP was excellent when she saw her in January, that we had mental health care where we lived and that she would be with her family who loved her and that we would manage somehow.

 

The ward consultant then said that she had consulted some team in the trust about detaining my daughter under the MHA. She didn't elaborate much on that and I am not convinced that they said that it would be lawful, being as she was already in hospital as a voluntary patient. My daughter had made no attempt to leave, despite the care being nothing short of negligent, as she wanted help with her OCD. My daughter is in a worse state now then she was when she went there, three weeks ago.

 

We were then asked to step out of the office whilst they had a discussion. I rang my husband and asked him to go immediately to register my daughter as a temporary patient with my GP. The surgery told him to ring on Monday for an appointment. They also said that if we needed help over the weekend then we should go to the local urgent care centre. The consultants then asked to see me alone and my daughter asked why but they didn't give a real answer. My daughter said that she was an adult and if people were going to be talking about her then she had a right to know what was being said. I backed her up and said that I would not discuss my daughter behind her back. They had another conflab and called us back in and suggested that I take my daughter to a local hotel for the weekend, so that she could have the bloods taken. I just said no because my daughter did not want to stay and I could get the bloods done locally to where I live (but also because I have other children to think about and I can't afford a weekend in a London hotel when I have perfectly good accommodation at home).

 

So we left. No discharge papers, just a letter explaining the situation around the bloods to "whomever it may concern". The ward manager just kept saying sorry to my daughter for letting her down. I said that the ward wasn't the right environment for her, it wasn't his fault that she'd been placed there but it wasn't the right place. The ward manager became very choked up at that point so I think that he understood. 

 

My daughter changed completely as we drove away, the stress and tension fell away and she said that she felt so relieved. We stopped for food on the way back (the meeting and everything had taken all day) and she ate, drank lots and was a different person by the time we got home. 

 

So now I guess that we have to start again. The good thing is that my daughter is safe and wants to undertake the commitment of CBT. We all know that this is not going to be easy but the last three weeks of more and more distressing phone calls have not been easy either. Her handwashing is not as extreme as it was last Christmas and she says that she thinks she can contain it to one bathroom. But we shall see. We think that we will have to get her a private therapist/psychologist/whatever she needs but we can access my husband's pension in order to fund that. She's safe and that's the important thing. As for the pension, well, it's only money and I am sure that we will manage somehow later in life for when it was intended!

 

And I have a lot more to add to my complaint. Including that they offered her a meeting with the psychologist that had just started there but that never materialised. Plus the 1-2-1 "care" that consisted of keeping my daughter awake all night (she went to bed early so that she'd be up in time to go to a coffee shop before the meeting). I just wish that I'd taken her home on Monday but they promised her the psychologist so she wanted to stay. There was a significant deterioration in her mental and physical health in those four days.

 

Sorry for the length of this. I am very relieved that she is safe at home. It was an eighteen hour day yesterday but so worth it. 

 

Edited by Madwife2009
typos
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I am so sorry to hear of your experience.  Sadly, I doubt that it is rare.  Not particularly just in relation to OCD sufferers but to treatment in Psychiatric Units in general.  Also the insistent and bullying methods used to enforce medication.  Thank Heavens she has a supportive Mum like you.  I'm sure you have enough on your plate right now ensuring you find the right support for your Daughter but I would, in the future, consider writing to your MP in a similar vein to your description above.  It makes my blood boil.

Wishing you both well.  I hope you start to turn a corner and that your Daughter starts to make improvement.  At least she'll feel safe :)

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Like Caramoole, I'm relieved your daughter has you, and her family, to care for her. What you describe isn't uncommon for psychiatic wards and the pressure to get people to take medication can be intense. I'm glad you resisted - and glad too your daughter managed to eat and drink twice already in your care. :)

Safe at home I'm sure she'll start to recover. Hopefully you'll be able to access CBT soon, even if you do have to go privately. It can be expensive, but you can make a start, take some time off to work on things, have a few more sessions...and so on, which can keep costs down if it takes more than a week to practise the homework and be ready for another session. Best of luck and well done for standing your ground! :yes:

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4 hours ago, Caramoole said:

I am so sorry to hear of your experience.  Sadly, I doubt that it is rare.  Not particularly just in relation to OCD sufferers but to treatment in Psychiatric Units in general.  Also the insistent and bullying methods used to enforce medication.  Thank Heavens she has a supportive Mum like you.  I'm sure you have enough on your plate right now ensuring you find the right support for your Daughter but I would, in the future, consider writing to your MP in a similar vein to your description above.  It makes my blood boil.

Wishing you both well.  I hope you start to turn a corner and that your Daughter starts to make improvement.  At least she'll feel safe :)

Thank you, I hope so too. For her sake more than anything as her life is currently in tatters, she had to suspend her university course.

 

Our MP is already on the case, I have made an initial complaint to the hospital but have much more to add. The "care" she received was truly awful. My daughter is fully aware of the hold OCD has over her life and is very keen to get her life back. I am also considering a complaint to the GMC about the ward consultant (whose bedside manner was completely absent) and complaints about inappropriate behaviour from two nurses  to the NMC. I am going to write to Jeremy Hunt as he is the chair of a MH parliamentary committee, plus numerous others inbetween getting my daughter to appointments. Luckily I have a supportive husband and supportive teenage sons. We are all relived that she is out of that danger and with us now.

 

1 hour ago, snowbear said:

Like Caramoole, I'm relieved your daughter has you, and her family, to care for her. What you describe isn't uncommon for psychiatic wards and the pressure to get people to take medication can be intense. I'm glad you resisted - and glad too your daughter managed to eat and drink twice already in your care. :)

Safe at home I'm sure she'll start to recover. Hopefully you'll be able to access CBT soon, even if you do have to go privately. It can be expensive, but you can make a start, take some time off to work on things, have a few more sessions...and so on, which can keep costs down if it takes more than a week to practise the homework and be ready for another session. Best of luck and well done for standing your ground! :yes:

Thank you. I was aghast when the two consultants suggested additional medication for her lack of sleep - I mean, REALLY? When the staff on the ward were instructed to basically keep her awake all night?  

 

With regards to getting her some treatment, I have no idea where to start so that's why we're off my GP first thing on Monday as at least she can signpost us in the right direction. And I know that CBT works as I've worked through it myself, although not for OCD. My daughter's hand washing is reduced but I think that it's transferred onto other things and she has so many rules about what she can and cannot do. She may struggle at home initially as I have three other children, two teenagers taking their A-Levels and an 8 year old who is home educated. She's been used to being in the centre of her own world that she may have lost some sight beyond that small sphere. My other children and husband also have needs, as do I, so she's going to have to acclimatise. She has her own space to escape to though.

 

But we'll have to see and play it by ear. She's been drinking and ate this evening (although she had to go out to eat, another thing that's going to have to stop as we can't afford to take her out three times a day for food - I didn't have an issue with it yesterday as I just wanted her to eat, anything but it's not sustainable in the longer term). She also wants to set some "ground rules" but she's going to have to accept some as well - last Christmas she had a habit of taking one of my sons away from his college work and he can't afford to do that this year.

 

 

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Just another short update, my daughter drank freely and ate really well yesterday (at home) after an initial hiccup or two and hopefully will have had a good night's sleep (I didn't hear her getting up at all but that's not an indicator of a good night). Her compulsions were not overly awful so we were able to cope with it yesterday. She does seem to need a lot of reassurance, which I gather is something not to engage with, so I didn't, other than an initial, "You're doing really well" after which I ignored any further "requests" for reassurance during each conversation. 

 

My poor daughter's head must be spinning with all of the self-imposed rules she has, such as not seeing food before she is about to eat it. So, she has been avoiding the kitchen unless she is going to sit down to eat. She wanted an ice cream but saw that we'd left the gravy granules out so that meant, according to her rules, that she couldn't have the ice cream. She started to get upset about this but I just said that we'd get rid of the ice cream and if she wanted the ice cream later then she could have it. She ended up eating something else. 

 

I'm going to get her a doctor's appointment today as she needs a care plan going forward (she had bloods taken at our local hospital over the weekend which showed that her blood biochemistry was not quite right from where she'd not been eating so they want daily bloods for ten days then reduced frequency once they have stabilised). Hopefully this will be the start of her recovery and I'm hoping that the GP or local MH service can recommend someone to help with therapy for her.

 

 

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Just now, Caramoole said:

How long has she been struggling with OCD?

For at least the last four years but it's been getting progressively worse since then. In early childhood there was a trauma that she had counselling for and seemed to be okay with. Four/five years ago it all came back to her, she tried counselling again but the therapist wasn't helping (my daughter said that she felt dirty afterwards and would come home, have a very long bath and change her clothes) so she stopped going and then the OCD (handwashing) started. My daughter thinks that she was using the OCD as a method of dealing with the childhood trauma and that they got tangled up together.

 

Good news is that she is sleeping, eating and drinking but has said that she's nervous about eating (and her hand washing/other compulsions are slightly worse today). I'm not pushing her about eating and drinking, she can have what she wants when she wants it.

 

Spoke to GP, have sorted out future bloods tests (which we were having to go to A&E for!!) and GP has referred to community MH team and is going to request my daughter's records. I have also organised an appointment with local IAPT team but that's not for two weeks, which made my heart sink but my daughter said, "Just TWO weeks?" I am going to see if the MH team can get her some CBT more quickly as she is ready and believes that she can deal with this, which, I think is a major breakthrough for her, hence the urgency to get her to a therapist, even if we have to fund it privately. 

 

The hospital I removed her from rang today, to see if they could "help" in any way, whilst also saying that she cannot be referred to a tertiary centre and that she needs medication. Shame that they didn't want to help when she was with them. Or maybe they are worried about the complaints I have made about them all. They are also going to make a referral the the local MH team and want my GP to make a referral to a dietitian. Not sure that's necessary as we know what food groups she should be eating. But, whatever! My daughter didn't speak to them and was mouthing to me, "Tell them to go away!". 

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Very possible that they are worried about their own role and are now quickly back peddling.  I'm horrified by the level of care in psychiatric hospitals if what you see and hear is accurate.  At best they seem to do very little.  Medication is a very personal choice, it may help, it may not and there is the added risk that it can sometimes significantly increase anxiety in the early days.

Your Daughter sounds to have had a good weekend in your care.  Let's hope that with your support she is taking the first steps towards recovery.  I hope you can find the support she deserves :)

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On 22/11/2021 at 21:35, Caramoole said:

Your Daughter sounds to have had a good weekend in your care.  Let's hope that with your support she is taking the first steps towards recovery.  I hope you can find the support she deserves

Keeping an eye on this thread. Nothing to add other than to second what Caramoole said. :)

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On 22/11/2021 at 21:35, Caramoole said:

Very possible that they are worried about their own role and are now quickly back peddling.  I'm horrified by the level of care in psychiatric hospitals if what you see and hear is accurate.  At best they seem to do very little.  Medication is a very personal choice, it may help, it may not and there is the added risk that it can sometimes significantly increase anxiety in the early days.

Your Daughter sounds to have had a good weekend in your care.  Let's hope that with your support she is taking the first steps towards recovery.  I hope you can find the support she deserves :)

Medication and my daughter just don't mix, unfortunately. The meds always make her feel suicidal and she was scared by the last lot as the pharmacy dispensed the wrong dose of tablets which scared her so instead of returning them to the pharmacy she thew them away. In fact, the ward consultant asked if I had issues with taking medications but I don't as I have to take rather nasty drugs to control arthritis. Why does someone always have to blame the parents? Luckily, our GP has made no attempt to persuade my daughter to take medication.

 

You're right about how psychiatric ward patients are treated, if the things my daughter says are anything to go by. I think that it's disgusting, they are treated as if they are not human and their rights are constantly violated. 

 

My daughter is still eating and drinking, complying with daily (!) blood tests that are looking for refeeding syndrome although I think that I am going to start questioning them about this one as they are struggling to get any blood out of her now, her arms are covered in bruises and her veins are runnning away from the needles! She had a bad day yesterday and I had to remind her that having mental health problems does not give her the right to shout at her family, who are doing their best to help her. I'm hoping that it's just where she is re-acclimatising to being in a family again (she's been away for over two years, first to uni and then in the hospital) and will calm down.

 

I have booked her in for a telephone consultation with the local IAPT for CBT, they have sent her some books to be going on with until they talk with her in a couple of weeks. I have also found some local private counsellors so will ring them to see if they are able to help her as well. Our GP talked to the ward that we removed her from and between them they are going to make the referral to the home treatment team so hopefully things will get moving for her. And in the meantime, I have a rather long complaint with the Trust to add to!

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4 minutes ago, Madwife2009 said:

Medication and my daughter just don't mix, unfortunately. The meds always make her feel suicidal and she was scared by the last lot as the pharmacy dispensed the wrong dose of tablets which scared her so instead of returning them to the pharmacy she thew them away

I sympathise with her completely.  I had exactly these sort of problems with all SSRI medications.  Could I get anyone to listen to me? Not flipping likely.  Even fellow sufferers.  I was under constant pressure from my GP to try another and had to be extremely firm with him.  The good news is that you can get well without medication.  It's the psychological and behavioural work that will make long-lasting changes.  You just need to get her through this very difficult period.  You sound to be supporting her fabulously.  Well Done :hug:

12 minutes ago, Madwife2009 said:

in the meantime, I have a rather long complaint with the Trust to add to!

Good on you.  It needs doing, only then will we ever (hopefully) see changes :)

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So, today my daughter had an assessment by the intensive MH team, who only offer support for a short while. They are going to refer her to their team psychiatrist and arrange a medical review and, I think, get in touch with her on a daily basis.

 

It didn't start well as she assumed that my daughter had an eating disorder. She doesn't, it's just her fear of contamination that stops her from eating in certain circumstances. She's been eating and drinking freely at home, with one day whereby she only ate once (but ate an enormous meal). The nurse went through the history of the OCD but after and hour and a half, hadn't got to the present time so is coming back out on Sunday to complete that. 

 

One good thing though, is that the blood tests can stop. My daughter's results are normal and have been since Saturday (and then only one mineral was slightly below the acceptable range) so they have been discontinued. That's an hour less each day of taking her to and from the surgery and less exposure to other people.

 

I did get (inwardly) very annoyed a few times. The first time was around the fact that my daughter has not had any Covid-19 vaccinations. We had planted the idea in my daughter's head that she have the vaccine and she wanted to book an appointment to get it done. I am clinically vulnerable as I take drugs that suppress my immune system (plus there are some theories that for people like me, the vaccines don't work as well). My eight year old can't have the vaccine as they are not approved for young children yet. My daughter will be coming in to contact with a lot of people, so it makes sense for her to have it. My husband had his booster yesterday and asked then if there was any reason why my daughter shouldn't have it, given her low weight, etc., and they said that she can and should have it. But the nurse yesterday just said that she shouldn't have it until she is "physically and mentally stronger". I nearly blew my top, I was so cross about this. My husband was furious about it. So now I'm going to have to seek advice from a "higher authority" than the nurse about it, in order to convince my daughter that she needs to do it.

 

The second time I got annoyed was because she said that my daughter "wasn't in the right place" for CBT. This I cannot understand, based on an hour and a half with my daughter. Guess what she suggested? Yep, medication. I was not best pleased as, having read this and other websites, and researched the NICE guidelines, I think that CBT is the right thing to do and what's the harm in trying? My daughter won't/can't take drugs so why not try the recommended treatment? I'm going to have to really push for this as I cannot see my daughter improving without something and we cannot spend my life doing everything for her because she won't use her hands (selectively - she'll use her phone but won't open a door, unless it's the door to her bedroom. She'll turn on taps but won't put her plate in the dishwasher) or prepare food or look at food (until she has to eat it) or do her laundry or . . . . . the list is currently endless of things she "can't do".

 

I was also irritated as there was an assumption that I would attend all of my daughter's appointments and be there for when she gets phone calls from the MH team. Um, no, that's not going to be possible all of the time because I have a life, a husband and three other children that need me as well. I cannot just re-arrange my entire life, it doesn't work that way, not in the real world. I have my own health issues, we are renovating our home, I have other commitments. I cannot - and should not have to - make my life revolve around my daughter's.

 

Yesterday was not a good day, as although she ate and drank, she spend a lot of time hand washing, after telling us that she had it better controlled. She was unpleasant to all of us (including my eight year old, who adores my daughter) so I had to tell her again to be kind to others. My daughter currently thinks that the world revolves around her and that we must all do what she wants, when she wants it. Unfortunately, there are five other people in this house, including two teenagers who are in the middle of their A-levels and an eight-year old who is home-educated. They all have needs, as does my husband. As far as I am concerned, she has to fit in with us and it shouldn't be a case of us fitting in with her. I suggested that she take some exercise, in the form of a short walk a couple of times a day but that didn't go down too well, even though we have some beautiful parks and lakes nearby, which would give her something else to think about for a while.

 

I've read that we shouldn't "indulge" her compulsions and I have no intention of doing so. I don't offer her constant reassurance beyond saying just once that she's doing well. If she asks again, I ignore it. My husband though, doesn't see eye to eye with me on this as he's worried that by not helping her, it will make things worse. Whereas I see it that by "helping" her, it WILL make her worse as it validates her thought processes. My daughter has also complained that she's fed up of people "treading on egg shells" around her, which greatly encourages my view that we should just treat her as we would have before her OCD got to this state.

 

Am I approaching this in the right way? And does anyone have any advice to add as to how I can persuade the NHS to get her some CBT asap? I was happy to pay for private therapy but so far, all of the therapists I have contacted are unable/unwilling to take her on.

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14 hours ago, Madwife2009 said:

Am I approaching this in the right way? And does anyone have any advice to add as to how I can persuade the NHS to get her some CBT asap?

:yes:  Perfect. You've got it sussed and are doing a brilliant job! :clapping:  I'm particularly impressed how you are determined to balance your own and your other family members' needs with those of your adult daughter.

Regarding the CBT I think you have to keep pushing the MH nurse for now and try to get her to see sense as that's the team that's dealing with her. I'd also suggest you speak to your GP, put the case for CBT and your concerns that the MH team's determined push for medication is only delaying the necessary. See if you can get a direct referral or maybe the GP would put some pressure on the MH team in support of treating with CBT as the first line approach.

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11 hours ago, snowbear said:

:yes:  Perfect. You've got it sussed and are doing a brilliant job! :clapping:  I'm particularly impressed how you are determined to balance your own and your other family members' needs with those of your adult daughter.

Regarding the CBT I think you have to keep pushing the MH nurse for now and try to get her to see sense as that's the team that's dealing with her. I'd also suggest you speak to your GP, put the case for CBT and your concerns that the MH team's determined push for medication is only delaying the necessary. See if you can get a direct referral or maybe the GP would put some pressure on the MH team in support of treating with CBT as the first line approach.

Brilliant, thanks for confirming that it's the right way to go about things. I have just shown your response to my husband so he's agreed to work with me on this. I know it's hard for him as she's his little girl, firstborn and all that and he just wants her to get better and be the girl she used to be. 

 

I am going to push hard for CBT as I think that she's determined to make it work. She rang the MH team yesterday - hey were meant to ring her but didn't  so she rang them and discovered that they had phoned her friend, I have no idea how they got her friend's number although her friend was listed as her NoK in her university town. Anyway, my daughter gave them a really hard time about CBT and that she wants to try it. They are coming out tomorrow so we'll work on them again.

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My daughter saw the MH team again today. I am, so far, not impressed with them. 

 

They were supposed to finish taking her history today and take her obs. The nurse who turned up today was completely unaware of this and asked why my daughter hadn't said something. My daughter and I looked at each other and I said that there appeared to be a communication problem within the team. Frosty looks were then given to me by the nurse. Well I'm sorry but I'm nothing if not blunt about these things!

 

The nurse expounded on several occasions about her own career history and how many years she'd spent in MH. Well, whatever, we don't care as long as you are competent. Which was doubtful from the rest of her speech. We asked again about CBT and the answer was that my daughter was "not ready" for it. When we asked for an explanation, we were told that her levels of anxiety were too high for it to be of benefit to her. That sounds like something the ward consultant from the hospital told them. 

 

How on earth they think that they can possibly know my daughter's MH status based on two hours with different team members, I will not even try to understand. My daughter told me that the 8+ other assessments she's had over the last nine months took between five and eight hours each. But apparently this team know everything about her in less than two hours with her, and half of that time was spent talking about the nurses' career history, a self-soothe box, ice-diving and medication. Oh, and they also want to try DBT with her, which, when I looked it up, didn't seem to be particularly appropriate for CBT (and NICE don't mention it as a therapy anyway). Hmmm.

 

Afterwards, my daughter said that there was no way she was going to "ice-dive" (dunking your face into icy water). Don't blame her, it sounds like a method of torture.

 

The only useful thing that came out of the appointment was that my daughter now has a 24/7 phone number to call when she needs to express herself. As we have told my daughter, we are not the right people for this, we know very little about OCD so at least she can now talk to someone who has a grasp of how to help her. If only she'd put the number into her phone!

 

More positives: she's still eating and drinking, sleeping well and wants to get some exercise. The nurse today told her that she shouldn't expend any energy on exercise but a I said, a ten minute walk to the local lake is going to do more good than harm. After all, exercise is supposed to be good for mental health as well as physical health. More importantly, my daughter seems happier (in that she smiles more and has been heard laughing) and looks healthier than a week ago.

 

She's supposed to be having a medical review and a psychiatrist assessment so we'll keep pushing for CBT.

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Hi Madwife,

It must be very frustrating being given the run-around regarding CBT. Next time they argue that your daughter's anxiety levels are too high for her to engage, point out that CBT begins with holding a normal, rational conversation and - despite her high anxiety- your daughter has shown herself capable of doing that through her assessments with them. I suspect what the psychiatrist is thinking (he seems to be the ringleader) is that she's not ready for ERP (exposure response prevention.) I'd agree with that, but C-BT is about starting with the cognitive side and she IS ready for that. If they believe CBT = just ERP without the cognitive part they aren't qualified to give it!

I agree with you that a short walk/ bit of exercise is of waaaay more benefit than saving 200 calories, especially now that she is eating again.

The ice-diving is a recognised treatment for depression and worth a try, though you're supposed to submerge your whole body in an ice bath/ outdoor lake/ cold shower. I think if it was me I'd consider I was being let off lightly with just plunging my face in the cold water and give it a go! Theoretically that could still have a beneficial effect, though less so than full body imersion. Every little helps!

DBT is a recognised treatment for a variety of disorders, including eating disorders. It's a variation of CBT and while it doesn't address the OCD directly as CBT does, it can be a useful adjunct for some people. It helps with emotional regulation and promotes better tolerance of anxiety and distress without reacting in self-harming ways (like not eating etc.) Hopefully that gives you a better idea if it might be suitable for your daughter as a starting point, with CBT for the OCD to follow on.

I'm glad she's happier and improving. I hope things go well with the MH team from this point on. :)

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1 hour ago, snowbear said:

The ice-diving is a recognised treatment for depression and worth a try

It is something that is warranting a lot of research.  I understand it to involve Vagus Nerve Stimulation which has been found to be beneficial for various things.  Worth having a quick read up on it, daft as it sounds.  I recently read a book by Wim Hof which explains quite a lot about it

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23 hours ago, snowbear said:

Hi Madwife,

It must be very frustrating being given the run-around regarding CBT. Next time they argue that your daughter's anxiety levels are too high for her to engage, point out that CBT begins with holding a normal, rational conversation and - despite her high anxiety- your daughter has shown herself capable of doing that through her assessments with them. I suspect what the psychiatrist is thinking (he seems to be the ringleader) is that she's not ready for ERP (exposure response prevention.) I'd agree with that, but C-BT is about starting with the cognitive side and she IS ready for that. If they believe CBT = just ERP without the cognitive part they aren't qualified to give it!

I agree with you that a short walk/ bit of exercise is of waaaay more benefit than saving 200 calories, especially now that she is eating again.

The ice-diving is a recognised treatment for depression and worth a try, though you're supposed to submerge your whole body in an ice bath/ outdoor lake/ cold shower. I think if it was me I'd consider I was being let off lightly with just plunging my face in the cold water and give it a go! Theoretically that could still have a beneficial effect, though less so than full body imersion. Every little helps!

DBT is a recognised treatment for a variety of disorders, including eating disorders. It's a variation of CBT and while it doesn't address the OCD directly as CBT does, it can be a useful adjunct for some people. It helps with emotional regulation and promotes better tolerance of anxiety and distress without reacting in self-harming ways (like not eating etc.) Hopefully that gives you a better idea if it might be suitable for your daughter as a starting point, with CBT for the OCD to follow on.

I'm glad she's happier and improving. I hope things go well with the MH team from this point on. :)

Took my daughter to the psychiatrist today and was pleasantly surprised to find that he talked about therapy/CBT before he mentioned medication! Although he did then expound upon the medication rather too much for my liking. And kept bringing the subject back to it but my daughter pretty much put that one to bed by saying that, due to her fears around contamination, she would not be able to take it consistently which would be a waste of money and her efforts to take it. 

 

I questioned him about a few things, including why they want to medicate - turns out it's about cost and getting my daughter through the waiting time for CBT as it's going to be January before the Recovery team can start to help my daughter. So she's staying under the intensive team for now, just so she has someone to fall back on.

 

He also said that my daughter needed to be at a particular point to be ready for CBT so I pointedly asked him what exactly defined the point for being "ready". He said that she needed to be able to talk to the therapist so I said (and thank you for the prompt, @snowbear) that my daughter was holding a rational conversation with him at that moment in time and what more could be required? He just nodded and agreed, which then gave my daughter the opportunity to give him a full rundown on why she felt ready for CBT. I think that we got the message across, loud and clear.

 

So, he then asked me for how I felt things were going so I explained that we had discharged her from hospital for her own safety and that she was better at home than in hospital as at least she was physically safe, eating, drinking and sleeping. I also said that the OCD etc., was taking its toll on the family as we were all so worried about her, that she'd been going around in circles for a year and that she needed help because of the issues around eating.

 

The psychiatrist then said that he would have a discussion with the intensive team and ask the recovery team to intervene asap and to get therapy organised as a matter of priority, without making promises about anything happening any faster. He also said that he'd refer to the primary care therapists (who are ringing on Monday) but a little push won't hurt there, either, if the waiting time is shortened.

 

To be fair to him, he was really quite positive about things, seemed to think that talking therapies could help her and that he would push for it. It's just a case of waiting the wait. But as I pointed out to my daughter, the wait for a private therapist is until the end of January anyway. It's just a case of getting her (and us) through until then.

 

Shame that his parting comment was, "but if you change your mind about medication, just let me know". Hmmm.

 

My husband took my daughter to feed the ducks and swans earlier which seemed to have a calming effect. She's eaten twice today and is discussing practical things, which is good as it's all been a bit taboo.

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The IAPT service rang yesterday and offered my daughter an online group CBT course. My daughter pointed out to them that she has a neurological problem that can cause difficulties with understanding so didn't think it suitable but they just kept reiterating that the course was all that they could offer until January, when they would do another assessment and then after that, if they felt that she needed 1-2-1 input then they'd add her to the waiting list. My daughter asked if she could be added to the waiting list now, instead of waiting another month to go on it but was told no. The waiting list is six months. 

 

However, I have found a private therapist (recommended by another therapist who had no provision) who will be ringing today or next week to talk to my daughter and see if she can help. If she can then the wait for treatment is only 6-8 weeks. We just have to get her to that point so that she will then feel something is happening.

 

On another positive note, my daughter announced that she had pushed an intrusive thought away yesterday during dinner. The thought apparently was that she shouldn't eat the sweetcorn on her plate, for whatever reason but my daughter said that she batted the thought away and thoroughly enjoyed the sweetcorn! Good on her. Yesterday was a good day as she was dealing with things and not panicking about it all.

 

On a more negative note, she is worrying about her landlord of her student accommodation. As she had to give up her course (temporarily) she gets no student funding, aka, no money so she can't afford to pay for the house. Her landlord implied that if she cleared out her room, he'd get someone else pretty easily so it seemed that the contract could be terminated and she'd only need to pay up until the point of moving out. So on Sunday DH and I went to London and cleared and then cleaned her room (it was pretty grim, DH spent an hour on his hands and knees, vacuuming the floor - I have arthritis and can't kneel down so it fell to him to do). The communal areas were like something from "The Young Ones". Not sure that any cleaning has ever been done there! My daughter told the LL that the room had been cleared, cleaned and the keys left there but he has not responded so my daughter is worrying about that now. That's nothing though as on the way to London we were hit by another car who decided to move into our lane without looking to ensure that the lane was clear . . . no-one hurt, we were still able to drive but the other party's car didn't look repairable.

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