Fear And Confusion

[Sandstone]

One more thread in the endless rigmarole. You must all be as sick of reading about me and the NHS as I am of dealing with them. if I was able go private, I would, but I'm not well enough to work and so can't pay.

Today I'm stuck because there is nothing tangible to contest. It all seems so vague and unclear that there seems to be nothing to do but go passively along with it , and find myself somewhere I don't want to be. The only person I can have contact with is also the only person I can currently ask for support, even though he isn't very much help when I need it. It feels oddly like childhood again.

I'm afraid I'm going to end up with another wasted year or more. Or even worse with another bad and destructive NHS T. If I end up with the current plan, it will be a 3 hour each way journey, allowing for buses being erratic. I don't know if I can do that and be in a fit state to participate in therapy.

Right. Facts

Saw a good NHS Psychologist for a year, Feb 2014-Feb 2015. She started out to do TF-CBT, but moved away from this on grounds of safety and of much higher levels of dissociation than previously realised. Her final report says "S would benefit from further specialist treatment regarding trauma and dissociation" and recommends being seen by Pottergate Centre for Trauma and Dissociation.

29 Feb Meeting between NHS and Pottergate agrees on an application for NHS funding for assessment only, not treatment
4 March Email to Pottergate confirms this application will go ahead

29 March Told in a meeting this won't happen, I'm to be transferred to another district of NHS.
31 March Contact Psychologist for advice She says for both safety and dissociative issues it is her professional opinion that I need a tertiary referral, and says she will pursue it
8 April Told the transfer process is going ahead.

I have no say in this, it is being done to me.

 

[joeylittle]

Does being transferred to a new NHS district mean you have to start the entire process back at the beginning, and nothing in your file transfers?

And, is it your NHS district who applies for funding in order to get the approval for Pottersgate, or is it Pottersgate who applies to the NHS?

(I hope you don't mind answering the questions - the whole thing sounds as frustrating and unhelpful as so much of the insurance system here).

Without being too pollyanna-ish about it, I'm wondering if there will be a benefit to you in terms of being transferred to a district that has the ability to apply for, or sponsor, more funding in the area of trauma - and/or, whether you can get someone at potters gate to explain how you can strengthen your position with the NHS.

And I am sorry they are really running you around on this.

 

[Sandstone]

And, is it your NHS district who applies for funding in order to get the approval for Pottersgate, or is it Pottersgate who applies to the NHS?

NHS structure. Money from the Department of Health is distributed amongst Clinical Commissioning Groups (CCG) who are presented as being local groups led by GPs. Care is delivered by NHS Trusts, who are autonomous organisations, usually covering one hospital- an Acute Trust, or one specialist service nationally or regionally- eg Blood Transfusion Trust, Ambulance Trust, or Mental Health Services - a MH Trust.

The CCG buys services from the Trusts locally. Our MH Trust covers two large counties, so has many CCGs commissioning, maybe 8. They each tend to prioritise physical health over Mental. So funding is tight, and objectives blurred. Our Trust is divided into 5 localities.

Decisions about funding for individual cases can happen at locality level, at Trust level or at CCG level. The original decision to apply for funding for Pottergate was, I think made at Trust level, but to be actioned at locality level. I have no idea where the decision not to proceed with that application was made.

Pottergate used to have a Service Level Agreement (SLA) with our MH Trust, but that was scrapped, so each individual case is now assessed. If the Trust turns down an application for funding, a patient can then take their case to the CCG. My case would need two applications, one for assessment and one for treatment if that treatment was found to be necessary. It seems pretty normal that you need to involve your MP, GP and any others you can find to fight your corner.

I don't think any locality has access to any more funds than another.

hether you can get someone at potters gate to explain how you can strengthen your position with the NHS.

I have spoken at length with Pottergate , who have been informative and supportive, but say it isn't easy. They provide services all over the country, and say this a better Trust than some, because it acknowledges the existence of dissociation. The first step is to get the SCID-D assessment done (£600+), as that would also provide support in an application for funding for treatment.

Does being transferred to a new NHS district mean you have to start the entire process back at the beginning, and nothing in your file transfers?

I don't know what would move from locality to locality. It is complicated, because the Psych. who was treating me comes from a third locality. The only thing I can go on is a comment from my "Care Co-ordinator" that he would brief the new locality. Since he has met me once and spoken to me twice, he doesn't know me well.
I'm pretty sure that anyone I get referred to will want to start from scratch, and try the stuff other T's and Psychologists have tried. But I have the report from latest Psych explaining why TF-CBT was unsafe and ineffective, I'm also pretty sure that because the SLA used to exist with Pottergate, there are no Dissociation Specialists within the Trust, they outsourced all that.

I might get someone brilliant, but I might equally get someone as harmful as the first therapist I saw within the Trust. It al seems unclear and I can't pin t down, because nothing is being put in writing, and the information I do get changes from person to person and time to time

I used to work on the admin side of applications for specialist funding from the local hospital, so I know how complicated and slow it can be, and I doubt I can negotiate it all now.

 

[joeylittle]

I wish I had anything helpful to offer. Thanks for taking the time to explain all that to me - from the outside, everything you are saying makes sense, and it doesn't seem like you are missing anything. It sounds like your fears have a foundation in reality.

I have no idea where the decision not to proceed with that application was made.

It sounds like that's where you'd need to try and pick up the thread. Someone decided your case shouldn't go forward. So, who are they, on what grounds did they decide that, and how can that get rectified.

If it helps - I doubt very much that anyone here is tired of reading your struggles with all this, and please, keep posting about it so you can at least get some validation and support from everyone who sees that you are working very, very hard to access the appropriate services and care.

 

[Suzetig]

This all sounds awful, finding your way through the maze that is NHS mental health services is pretty hard going if you're not unwell, it's impossible if you are.

I'm guessing you've checked already but are there any support or advocacy services near you that could help? I know Mind used to be good but don't know if they still do advocacy work but someone alongside might be helpful? I honestly despair at the state of mental health services under the NHS - it's not great in Scotland but I gather the rest of the UK are even worse off!

 

[digger]

I doubt very much that anyone here is tired of reading your struggles with all this, and please, keep posting about it so you can at least get some validation and support from everyone who sees that you are working very, very hard to access the appropriate services and care.

This. I wish I had something useful that could actually assist you in some way but I don't :( The state of mental health provision in this country is appalling and the treatment you have (or perhaps more to the point, haven't) received is disgraceful. :hug:

 

[Sandstone]

I did use an advocate a couple of years ago, and I've contacted them again. They are going to allocate my case to someone, and until then will supply someone to come to meetings with me. The trouble is there are no meetings; it is all happening behind the scenes without my involvement.

I think that is what is making it seem so hard. It feels like one more of life's mysteries. I don't understand stuff that others seem to get by osmosis. I suppose that comes from the isolation of my childhood. I never learned to interpret normal signals, only the dysfunctional ones of my parents.

I never know if I'm being realistic or not. Are my fears justified? How can I possibly tell?

 

[Sandstone]

Former T has phoned. She isn't able to find out what is planned, when, where or with whom, who changed the plan or why they are ignoring her clinical judgement. And she works for the Trust.

She doesn't think I'd be able to work with anyone after a three hour journey. My husband doesn't think I'd be able to negotiate the journey home after therapy.

It seems so likely that I will be stuck with wasting another year, and I'm running out of life. I wanted to move back into work. I want my daughter to be able to plan her wedding without wondering if I can tackle it.

Suppose this new T thinks it is safe to go into the trauma? Doing that has landed me in hospital twice. At the very least I want to be able to ask the former T if the new one is any good, and I can't even do that.

Maybe I'm just assuming the worst, but I have nothing to reassure me.

If I was capable of crying I would be on the floor sobbing now.

 

[barefoot]

I'm not sick of reading your struggles with the system at all - so please keep sharing all you want.
What I am sick of is how mental health provision here is woefully inadequate (understatement) and how you and others get caught up in this overwhelmingly frustrating and confusing rabbit warren of a process when they try to access the support they deserve.

I'm afraid I don't have anything helpful to add and I know you won't be looking for sympathy...I just feel so upset about this on your behalf... But also - I'm not fed up of hearing about it (and I'm sure others aren't either) so please don't stop posting on it because you think none of us want to know.

 

[barefoot]

will supply someone to come to meetings with me. The trouble is there are no meetings; it is all happening behind the scenes without my involvement.

Is there anyone (the advocate people/your former T?) who could work with you to push for a meeting to take place where you/they would be present? It sounds reasonable to me that you should be involved/be able to participate in these conversations/decisions? But I'm also aware that this could well just be me being incredibly naive about how the system works (I'm sure it is!) But is there someone who could help fight your corner to push for a meeting?

She doesn't think I'd be able to work with anyone after a three hour journey. My husband doesn't think I'd be able to negotiate the journey home after therapy.

I have a two hour train journey each way to get to therapy. Not usually a problem. However, if I've dissociated a lot in session, getting home can certainly be tricky. To the point where the other week my therapist really fought hard to make me stay because she was so worried about getting home and I've now had to agree a plan with her and my partner for getting me home when I'm in that state. Are there other things about the journey that concern you apart from maybe travelling home in a vulnerable/dissociated state? Sorry if you've already mentioned these elsewhere, if there are...

 

[Sandstone]

Yes, @barefoot it is partly awareness of your experience that informs my concerns. For the last year I've been travelling 45 minutes to therapy. I find I need a fair bit of time to get over the journey. I'm anxious because rural buses aren't that reliable, specially over longer distances. I'm uncomfortable with the feeling of being trapped on the bus. I also struggle at times with the urge to step out in front of a vehicle, and I find that there are quite a few odd people on or waiting for who seem to be magnetically drawn to talk to me. There have been occasions when I haven't been present on the journey home, including ones where physical co-ordnation and using my legs has been difficult. I'm not sure how well I'd manage changing buses if that was the case.

All that seems like a big extra challenge on top of the actual therapy. During the year T twice suggested we find a location closer to my home, but I wanted not to give in, and to use the travel as exposure to the world. She felt though that sometimes it was reducing the amount of work we could do. My husband's concern is based on the fact that I've come out more than one therapy session in the past and immediately taken minor overdoses. I'm not nearly as worried about that as about being unable to use sessions to the full.


So far as getting a meeting goes, I think former T is going well outside her remit already in giving me the support she is, and I don't want to put her in a difficult position. She did say yesterday that "No decision about me, without me" reflected the Trust's position, but that it didn't seem to be happening here. I've explained to the advocacy service what I need, but that has to wait for me to be allocated to someone.

I wish I could afford to go private. I wish I didn't feel so powerless. I wish this didn't all feel like institutionalised abuse.

 

[barefoot]

Yes, I get your concerns around the buses...it's not a great start to head off to a therapy session lacking faith in public transport's ability to actually get you there...anxiety about being late or buses not turning up at all etc.

I always allow quite a lot of extra time to get there because I don't want to get jittery if the train's late or we get stuck at a red signal for 15mins or if a tube is so packed that I want to wait for the next one... And I don't ever want to have to sprint straight from the tube into a session without having sometime to get myself together.

I basically try not to put any commitments in my diary for the morning, then I allow lots of time to get there, so I often have an hour or so to kill in London before my session. So, I've discovered a lovely little quiet cafe to sit in beforehand and read/journal/set some intention for the session/whatever... This maybe makes it sound like the whole day just becomes about therapy and, in a way, it probably does...but I see it as a positive in that planning it like that gives me the time and space I need so that I can be in the best possible frame of mind for the session and so I can best manage the journey.

Re the odd people who are drawn to speak to you - I have that too. Unless it is actually dark or torrential rain or something, I now always wear my sunglasses (even on the tube!) and I always have my headphones in, even if I don't have any music playing. It has really helped....people don't tend to approach if they can't make eye contact with you and if they think you can't hear them. Or stand and rea (or pretend to)...again, most people don't tend to interrupt if they think you're actually doing something/busy. I've also pretended to be on my phone before a few times - headphones in and just say lots of "mmmm, yeah....really....oh, what happened?!"

I also know my therapist well enough to know that if I couldn't get there one time because the trains were all cancelled - rare, but does happen - she would be very understanding about it and wouldn't charge me for the missed session. Or perhaps we would do a phone call in those circumstances instead). So, knowing that takes some pressure off too.

So, there are things you can experiment with to ease some of the anxiety about getting there/being in the right frame of mind for the session.

In terms of getting home when you're dissociated...yes...it leaves us potentially vulnerable. That said, I have never not got home ok. I've left feeling marginally spacey/confused/not really able to speak several times. And a few weeks ago, it was as you describe - a full on physical incapacity really because my legs basically just kept giving out, so I could barely stand. And that's what my therapist was really worried about - she was worried I was going to fall over and knock myself out. I have a walk from her room, then a tube, then two trains (in evening rush hour), then a walk home from the station this end...and I have managed it every time. It's like a natural instinct somehow kicks in and gets me where I need to be. Last time (when I could barely stand) I also managed to realise that I had to buy another ticket because I'd stayed there so much later so my ticket wasn't valid unless I wanted to wait another hour, so I managed to have that thought, go to the desk, speak to a person, buy a new ticket and get on a train I didn't usually get on... Not really sure how I did that. But, again, something just kicks in. Not saying this makes it ok...it's still a potentially dangerous position we're putting ourselves in and I'd recommend looking into a back up plan for travelling home for if you're in a really bad way. But it is amazing what we are capable of when we have to get ourselves home!