Catch 22

[Rockieplace]

I feel my daughter is in a Catch 22 situation with her "treatment" and I'm not sure we can do anything to help her.

She was in crisis for around 8 months and sectioned a number of times up until February of this year.  After a change of medication at the end of November she started to appear a lot better and more in control of her emotions although obviously still ill and prone to the typical Emotional BPD symptoms of impulsiveness and poor executive skills but at least the terrible self-harming stopped.  She also became much calmer and in control of her medication.

Her latest discharge was made on the understanding that she would be immediately referred to groups in the community (Stop and Think, Moodmasters were specifically mentioned).  The consultant at the time expressed surprise that she hadn't already been included in these groups.  My BPDD told the consultant that she had been told by her community team that she wasn't suitable for group work as 'she was too complex'!  Three sessions of 'assessment' psychotherapy were also scheduled to start in 2 weeks from the date of her discharge.

My BPDD then went home and, rather than being referred to the groups she was told (I can corroborate this as I speak regularly to her care co-ordinator) that the groups were part way through and my d would need to wait for a) the results of the assessment and b) the start date of the groups again if they were deemed appropriate.  She accepted this at the time.

The psychotherapy sessions were delayed by three weeks (partly due to my d having a big work tribunal scheduled on the same day as her 1st psychotherapy session and partly due to her co-ordinator going on 2 weeks leave).  Now my BPDD got very agitated with this delay and said that, from the conversations with her care co-ordinator, she believed that, even after these sessions, she would not be getting any therapies because she needed 'a sustained period of stability'.  This sent my d into a downward spiral and she proceeded to get very angry and aggressive to this co-ordinator and sent her a series of pretty angry, accusatory texts.  I felt very worried about my d's state of mind and wrote a letter to this same co-ordinator keeping very respectful and polite, but also sharing my d's concerns about the effect this delay was having on her state of mine.

My d told me yesterday that she was hospitalized again this week after a serious cutting/self-harming event.  She was so apologetic and said she was so ashamed.  I tried to respond as well as possible and, despite being extremely upset by this new turn in events, managed to keep calm and in wisemind.  It was tough.

My BPDD is now wanting to discharge herself from her community team whom she accuses of doing nothing and making her ill again.  She is exhibiting all the extreme traits of crisis 'splittiing' 'black and white thinking' and anger and a certain amount of paranoia most of it aimed at her care-coordinator.  My d is very clever and also very articulate and can be extremely hurtful when she is targeting someone in this way.  (I know, believe me I know).

This coordinator has reacted quite defensively to my d's accusations and appears to have more or less 'taken her ball home' where her treatment plan is concerned.  She has seemingly refused to take calls from my d, has told her that she cannot receive any treatments or therapies until she has a sustained period of stability which has enraged my d even further.

Now, I decided to speak to the co-ordinator myself yesterday to try to a) provide some verification of the facts and b) to try building some bridges.  I believe that the best way of getting my d the help she most desperately needs is by nurturing a positive relationship with her care team.  The coordinator did seem a little defensive but told me that my d did indeed need a period of stability and that DBT wasn't suitable for her in a current frame of mind.  It appears to be Catch 22.  My d hasn't got the skills to be stable and she seemingly needs the treatments to get the stability required to get them!

I wondered if my d was being somewhat paranoid but she does indeed seem to have antagonized her care team to such an extent that it is now being somewhat obdurate about her treatment.  We have had this problem before as, my d was a mental health professional before losing her job and therefore can appear extremely condescending (some would say arrogant) about the competence etc of her care team.

I don't know what I can do to help her if anything.      :'(

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[wendydarling]

Hi Rockieplace

I'm so sorry your daughter is not gaining access to treatment she wants and deserves and that she was hospitalised this week after all her hard work to be well.   My daughter was very anxious during her time on the waiting list and was hospitalised a number of times, the last time she refused to be discharged and they sent her to a non medical crisis home for over 2 weeks. 

That does sound like a catch- 22, well done for staying in wise mind and building bridges with her care coordinator. Are you able to speak to her Dr in the mental health team, who if not already should be shortly aware of this weeks hospitalisation.  Sounds to me from what you say the care coordinator has withdrawn her/his duty of care following your daughters behaviour.  If so, who have they passed her case to? Where have the three assessment psychotherapy session dates gone, did they give her/you new dates?  Is it through those they expect her to gain the stability to enter group sessions/DBT? They have a duty of care and that includes the step of getting her stable for treatment (although I have never heard of that before).

Yep, too many questions from me ... .as you say it does not add up.

You've had a tough week, big hugs from me   

WDx

[Rockieplace]

Thank you WD!

My d did in fact get her 3 sessions of psychotherapy with a delay of first one week then a two week gap between the 2nd and 3rd where are state of mind deteriorated dramatically due to her reaction to the delay.  (She self-harmed the night before this last session).  The last one descended into a sort of debacle by the sound of it with my d accusing her care-coordinator and the whole team of failing to deliver on their promises, incompetence etc etc. The outcome seems to have been that she was deemed not stable enough for therapies / treatments because of this.

As a mere layperson I am baffled.  I just don't see the logic that these therapies are intended for stable people!  When I spoke to the cc on Friday she repeated a couple of times that they did things differently in 'our' area - even from a nearby area where my daughter was sent on her last hospital admission (which is funnily enough part of the same NHS trust).  My suspicion is that there is no DBT Community therapy in this area and they are just fobbing us off but I might be wrong about this.  Surely, as my d seems to believe, they can't be punishing her for confronting them in this way?     

[Dibdob59]

I think it is unlikely they will be 'punishing' her (although I am sure to her it could seem that way) - it is more likely that they are unable to cope and are out of their depth.

I too am in the UK and have been on these boards for a number of years. I rarely post when it comes to treatment available here in the UK as I sound jaded and cynical, something that many do not need to hear. However, my personal experience in seeking mental health treatment for family members with BPD has been truly shocking. Many practitioners either do not know what BPD is or do not respect it as a diagnosis. We are very rural, no cities for over an hour in any direction and DBT just is not on the NHS agenda.

From talking to many mental health professionals locally, BPD is not often diagnosed and if it is, there is very little treatment available that is designed to deal with it.

[Lollypop]

Hi Rockieplace

There you go, I've put up my silly post and now I read yours and it settles my mind to what really matters. My heart goes out to you.   

Your daughter sounds very similar to my Bpds. His relationship broke down with his long term drug counsellor, black/white thinking. Theres no moving him once his mind is set a certain way. He's also articulate and arrogant, he sounds like a machine gun rattling out his opinions.

What a horrible situation for you all to be in and like WD I've more questions than answers. It just seems so very unfair.

It seems to me like this.  You're in the process of her getting what she needs. They've said no.  You need to find out exactly what their requirements are.

"what exactly will it take for my daughter to get the treatment?"

Of course, you may not like hearing the answer but it's something to build on from there.

How is your daughter today and, importantly, how are you feeling?

[wendydarling]

Hi Rockieplace

Thanks for clarifying.  Its frustrating when people don't explain to us clearly, which seems to be the case.  You are left with many unanswered questions and understanding of the next steps.

Sounds like 'stable' means your daughter agreeing to boundaries and limits of acceptable behaviour towards staff ahead of joining a group for therapy.  It's baffling as you say they have not explained how your daughter gets help from where she is now to 'stable' and in treatment. Have you thought about going back to them and asking?

From your first post 'referred to groups in the community (Stop and Think, Moodmasters were specifically mentioned)' would indicate there are no treatments for BPD within your NHS area/s, have they confirmed that?  Can they confirm this is the way your NHS trust works, it uses external providers? Can you ring these groups to see if they offer DBT for NHS patients or advise who does? 

Too many questions again 

WDx

[Lollypop]

I think it is unlikely they will be 'punishing' her (although I am sure to her it could seem that way) - it is more likely that they are unable to cope and are out of their depth.

It occurred to me as I re-read RP's post. It seems like the UK is in a period of infancy regarding BPD and more general mental health disorders. It would make sense then that they have less experience.

I've only had one conversation with a mental health assessor on the phone and, personally speaking, he took a very firm stance and used the words "needs to take full responsibility for himself".   If somebody is sick and out of control how can that be a realistic requirement?

I'm positive that DBT is designed to cover getting people stabilised and out of crisis, before the real work begins.  I'm sure I've read this in the worksheet book I've got.

I'm lost for words and just don't have the experience to help you rockieplace. But I will say sharing your story is extremely important for us all as we see the challenges ahead.

Big hugs to you

L

[Rockieplace]

Thank you for all of your comments and suggestions. We live 'up north' and not in a big city and I think that this exacerbates the problem. We have had 4 different consultants give 4 different recommendations for care plans for my d. Only one of them who was in the private sector gave my d hope by prescribing intensive DBT. His recommendations were ignored. My suspicion is that they were too expensive. I, too, am getting jaded and cynical about nhs mental health services in the UK.  Maybe in the London area there is a better provision.

I am trying to be pragmatic in order to get the best treatment options available. I am meeting with the care coordinator and my daughter in the morning. I'll report back. Fingers crossed. Thanks again.

[Rockieplace]

 I meant to add. I wish I was still 'only' worrying about the tattoos!    

[Lollypop]

Hi

I'm just throwing this in here.

Is it possible to do DBT by Skype?

I'm wondering if there's any where that does this?

Also, extremely importantly, if we don't have access to DBT in our area what's the next best choice as far as therapy goes?

Can each aspect be dealt with separately with the best therapy available, successfully?

Is any therapy better than no therapy?

As a minimum, has anyone out there got any experience of your BPD using meditation? 

Sorry for all the questions

L

[SAAT]

Hi Rockieplace, so sorry to hear about the difficulties you and your daughter are experiencing... it sounds incredibly frustrating. I am in a capital city in Australia, fortunately DBT is reasonably accessible ... .that is in the private sector. I am not sure about waiting times in public centres. Although expensive there are options for government rebates for private DBT as well as cover by private health funds. My BPD24D has been seeing a DBT therapist fortnightly for over three years and I credit this with providing a lot of stability. During this period my daughter has cycled through many highs and lows... .the point being the DBT has provided her with coping skills during crises or difficult times. That is the point isnt it? When this happens she goes on a weekly basis.

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[lbjnltx]

Hi

I'm just throwing this in here.

Is it possible to do DBT by Skype?

I'm wondering if there's any where that does this?

Yes:  www.lvcounselling.co.uk/

Combining Skype sessions with www.dbtselfhelp.com and attending Yoga classes could be a very beneficial process.  One would have to be self motivated though.  Self motivation is the key to recovery no matter the method.

lbj

[Rockieplace]

Update on the meeting:

It went as well as it could have under the circumstances.  My d's care coordinator immediately offered my d a Moodmaster's 12 week course, one to one (one hour once a week at my d's home).  She said that the groups weren't suitable for my d and that might help her to stabilize enough to prepare her for DBT therapy.  She also said that she would arrange another psychotherapy session as the last one had not been 'successful'.  My d seemed fine with this and then apologized for her behaviour towards the cc!  I was so pleased that she did this and think it must have taken a lot for her to do so.

[Rockieplace]

Sorry - I pressed 'post' before I had finished.

So we felt that progress had been made and that maybe my d kicking off had had some effect.  I think that my letter might have also helped to galvanize them into putting something into place.

In the car on the way home my d told me some of the awful things she had said to this care coordinator which she hadn't admitted to before!  No wonder the cc had said that she was abusive.  Thank goodness she apologized.

[Rockieplace]

Thank you for the 'on-line' therapy suggestions by the way. I will suggest them to my d when the time feels right.   I asked in the meeting about some 'apps' that I had read about on this site for helping to avert self-harming etc and the cc said that they would be a good idea.

My d, while wanting treatment, often wants a quick fix with very little effort on her part. I think this is going to be an impediment for the DBT therapy as it sounds to me as if it is quite hard work and needs perseverance which is really not my d's strong point.   

[Lollypop]

Hi rockieplace

You must be feeling a lot calmer about the situation now. I think your letter must have helped get something in place quickly. It must have taken a lot for your daughter to apologise and it shows she has taken responsibility for her behaviour. Its hard to accept and have faith in the decisions the professionals make but, at the end of the day, there's little choice if we only have a limited service and can't afford or even access a private arrangement.

My Bpds had two months of DBT and found it hard going but he enjoyed the group sessions, the opportunity to compare his traits and feel he wasn't on his own. His concentration span isn't great and, like your daughter, he can't persevere. Hopefully, as the therapy progresses, she will feel she's improving thus increasing her self-motivation. She will become stronger. You know that she wants to feel well, she wants to feel normal and she's on the right path.

L

LBJ: thank you for the information. I'll file it away for the day I may need it.

[Rockieplace]

Update on my daughter's situation but not good news I'm afraid. After said meeting above we were hopeful that at least things were starting to move forward on the treatment front. Nothing has been put in place to date believe it or not and when my d got frustrated - her mental state has deteriorated badly between times - her 'team' told her that she could no longer contact them except by letter. When asked about the mood masters course they seemed to have forgotten all about it!  I have written again expressing our frustration and my fears for my d's mental health and am awaiting a reply. I am losing all confidence in the nhs service and feel that if something doesn't happen soon I will be formally complaining.

Re-reading the above -thanks Wendy- I think I am going to have to enquire about services out of area etc too. They are still giving the old line about my d needing a sustained period of stability before recommending DBT. Grrrrr

[Lollypop]

Hi there good friend

It's all just bloody frustrating. Apologies for swearing.

It seems every step is a battle. As you know, I wait patiently for my BPDs to seek treatment and your stories really help me understand the hard work is only just beginning.

Keep on going RP.

L