The Advocacy Letter

Dear Sir or Madam

Re: Advocacy in Accessing Mental Health Services

I am writing to enquire as to my rights and to what extent you can assist me in accessing the services to which I am entitled.  I am diagnosed with borderline personality disorder with psychotic features with a possible co-morbidity of bipolar disorder, type II.  I take anti-depressant and anti-psychotic medication, and although I only received the diagnoses in June 2009, I have been utilising mental health services both on the NHS and  in the private sector since 1998 (having originally been diagnosed with clinical depression and social anxiety).  The care that the NHS has provided has always been wholly inadequate; until recently, any therapy I have been offered has either not come to fruition, has ended abruptly or, in one incident, has seen me being regarded with outright hostility.

Since 29 February 2009 I have been seeing a clinical psychologist on a weekly basis for psychotherapy broadly of a psychodynamic nature (though the  approach is integrative).  As of today’s date, we have had 35 sessions in total. It has taken me some time to fully open up to and to trust this psychotherapist, but now that I have, I feel that progress is being made, albeit slowly.  I believe that further progress can be made through this relationship.

Unfortunately, my psychologist has informed me that he can only continue to offer me therapy for 24 further weeks (starting from the next session).  This would, of course, equal 59 total weeks of therapy (including three assessment sessions at the start, and four sessions to end the therapy).

As you will be aware, all published research on borderline personality disorder strongly recommends long-term therapy for the condition. Indeed, NHS and NICE guidelines on this illness and on personality disorders in general completely contradict the view that one year’s worth of psychotherapy is remotely adequate treatment.  I believe that the New Horizons consultation recently undertaken by the health service would not support this situation either.  I strongly believe that not only is long-term treatment advisable, it is in fact necessary to deal effectively with my condition and therefore I feel that it is my entitlement.

Whilst I appreciate that resources are limited, I am frankly disgusted by the postcode lottery that seems to be in operation.  For example, I am aware that there is a specific self-harm team within the <other NI area> Trust – whilst self-harm is not, of course, by any means the only symptom of BPD, I am sure that this team would work frequently with individuals with this diagnosis and would thus understand it well.  Furthermore, I am familiar with several other individuals that have this (and other) disorders – in most cases less severe than mine – that have received guarantees of treatment lasting at least two years (in some cases) and three years (in one).  I have yet to encounter a single other individual who has received only a year’s guaranteed treatment.  My psychologist himself admits that ideally BPD should be treated twice a week for a minimum of 18 months.

I believe that if therapy comes to an end as proposed that I will in fact undergo a significant regression, and probably end up utilising yet more NHS resources.  I am unable to work, and am in the regrettable position of being dependant on state benefits – a situation that I abhor.  Any saving of government resources in cutting short my treatment is, therefore, a false economy.  I also feel that the worry of treatment coming to a close will overshadow my relationship with my therapist thus preventing us from tackling more substantive issues together in the relatively short period we have remaining.

Additionally, I understand from the various guidelines from the health service that multi-disciplinary approaches are considered desirable and indeed necessary for personality disorders.  To that end, I am surprised that I have never been offered access to the CMHT’s social workers, CPNs or occupational therapists, despite presenting symptoms perhaps best dealt with by such individuals in conjunction with my psychologist.  Although I have had one experience of the Crisis Response Team (which, I might add, was an utterly appalling meeting), I have never been advised on how to contact them again in an emergency, of which I have had several in the past year.

I am not prepared for the NHS to once again treat me as a second class service user and am prepared to contact MLAs, MPs, the relevant Minister and Permanent Secretary, and indeed the media in order to obtain the treatment to which I am entitled.  I would therefore be strongly grateful for your advice and assistance on (a) ensuring that I obtain a guarantee of continued psychotherapy, in line with NHS guidelines on the longevity of same; (b) ensuring that said psychotherapy can preferably continue with the therapist I presently see, as of course issues of trust and abandonment are a big part of this illness; and (c) ensuring that I can have access to the full range of services from the CMHT and the Crisis Team in an emergency.

As you know, borderline personality disorder, especially when psychosis is involved, is a severe mental illness and in this case has not been taken seriously.  I feel that this matter is urgent and desperate, and to that end would be very grateful for your help and advice.  Should you require further details, or if you would simply prefer to correspond via another medium, please do not hesitate to contact me via email on <my email address>.  I look forward to hearing from you.

Thank you in advance.

Yours etc.

Copy to: Chief Executive of my Trust

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30 Responses to “The Advocacy Letter”

  1. […] This post was mentioned on Twitter by Serial Insomniac, Serial Insomniac. Serial Insomniac said: The Advocacy Letter: http://wp.me/pvWqn-cD […]

  2. wonderful. the only thing I would add is
    “ya bastards”
    at the end.

    Good luck hun.

    x

  3. Wow what a brilliant letter. Does it feel good to have written it? You’ve done a marvelous job – I hope they take it seriously. Well done! 🙂

    • 🙂 Thanks very much hun – fingers crossed. And yes, it feels great! The best bit was when I showed it to C this morning; he thought it was a good letter and even requested a copy to show to his line managers (I do think he supports me on this matter). Sod the lot of ’em!

      Thanks again x

  4. Excellent letter genius girl and fingers crossed it will be effective.

    Take care xxx

  5. Such an incredibly well-written letter, hun. Your writing skills are impeccable–a fact of which I am already aware. This should generate quite the reception–that which should yield a response in hopes that it is positive and timely. I await with anticipation at their reply.

    • Thank you my dear. I actually hadn’t been overly impressed with it, but am encouraged by the responses of A, C and of course everyone here. It will be interesting to see how they respond; I shall, of course, keep you updated.

      Take care hun and thanks for your support. xxx

  6. Brava!!! It’s just sad that when we most need help, we have to be our own advocates. But you can be your own (and others’) formidable advocate any time, m’dear! Well done.

    • Thanks very much, FR. Totally agree that it’s an unfortunate situation, and has been/is for others – especially from the people that you pay your taxes to to take care of you. Alas. Fingers crossed anyhow. Thanks for your support, take care of yourself 🙂 x

  7. I bet you feel better for having written that!!! Good for you – fantastic! Definitely keep us posted on the outcome. Also, I need to write a similar letter myself. Love Pumpkin

    • Thanks Pumpkin 🙂 Yeah, you definitely should write yourself – the NHS’s attitude to your situation is horrible. bourach who commented above had a lit of success with Rethink who she said were great. Good luck and take care xxx

  8. Not actually a comment to this letter (although I think it is great), but just wanted to say that I just stumbled across your blog and think it is fucking fantastic! Am a fellow 20 something Borderline, and can really relate to a lot of what you’re talking about in your blog.

  9. This seems like a good letter. I am not familiar with the UK health system or whether there are any formal guideliens on coverage for psychotherapy. For example, in the Netherlands I think you’re entitled to 25 sessions per year for clinical disorders and 50 sessions for personality disorders (I’m afraid you’ll have to go for awhile without therapy for a new round to start after you’ve used up your sessions), but the clinician can request for coverage of further sessions if needed, and this will usually be approved by insurance. This is a national guideline, so different insurance comps cannot use favoritism. I would hope in the UK there would be guidelines like this too, although they might be at the NHS trust level. Maybe you could familiarize yourself with coverage guidelines in your trust and nearby trust so if your trust is particularly hard on covering psychotherapy, you have proof to show other trusts allow their clients much more.

    • Thanks for the idea Astrid – I’m sure something must exist in this regard. My therapist himself might be willing to tell me but if not it’s bound to be online somewhere. Documentation I’ve seen to date has been fairly vague, so it would be helpful to know if the health service has any clearer, more definite timeframes somewhere.

  10. So what’s the next step? Are we waiting for the powers to be to recover from their Christmas stuffing before we get a response? I def think a Twitter campaign is required.. at least!

    xx

    • What would you propose doing on Twitter, WG? I’m up for it 🙂

      In terms of the letter, I think that’s a bit of a waiting game. In response to my copying in the Trust’s Chief Executive, I received a letter from the Director of Mental Health Services who has apparently requested ‘more information’ and will get back to me. Aha, with some excuse no doubt. Yet to hear from the advocacy people, but am prepared to badger them if necessary.

      xxx

  11. I know it must have felt *awesome* to have written that letter! It’s also wonderful IMO that C wants a copy of it to show to the line managers…I’m not sure about in the UK, but here the physician can be the patient’s most important advocate. Insurance companies here will often look for whatever reason they can find to deny a claim and not pay for something, assuming they cover it at all! Either way, I’ll bet it feels good to at least get started on doing something to improve your situation. Hope it works out, let us know!

    • My first reaction when C asked for a copy was one of utter delight. It was validating, supportive and even a slight implication that he might actually give something of a fuck about me, something for which I am pathetically desperate (transference sucks). Now, of course, I’ve convinced myself that the only reason he wanted it was to conspire with his managers in order to draft the best refutation possible.

      Rationally, I do think he took it for honourable reasons, but that doesn’t prevent my catastrophising 😦 We’ll see. I do agree, PQ, that the clinican serves as a great champion for the analysand, so I can only hope this will be a case in point. I will be interested to see how it all plays out.

      Take care xxx

  12. Very well written. I only hope they pay attention and follow up with the ongoing treatment you need.

    Sending my love and very best wishes to you and yours for the happiest Christmas possible under the circumstances.

    May the only self-harm you commit during this season be that of a little over-indulgence. Be kind to yourself, sweetie: it’s the season of goodwill and I suggest you start with yourself. You are much loved: hugz by the Christmas bucketload.

    • You are so lovely. Your support this year has meant more to me than you could know. It is my honestly held belief that I would be either dead or bobbed if it weren’t for the support this year of my online friends, so thank you so very much Phil. You have been awesome. I hope you had a fabulous Christmas.

      Much love xxxxx

  13. That is a kick-ass letter; beautifully-presented, perfectly-written. I wonder whether the fact of its being so impeccable and logical might actually count against you, in some weird and twisted way … I’ve had that happen on numerous occasions; I seem so functional and sane that people make the mistake of thinking I must be overestimating my own nuttiness.

    • You know, this had indeed crossed my mind. In the past when I’ve been caught out by this, I bullshit my way through by saying I had assistance, but since C (the psychologist) knows me well and will be involved, that’s not going to wash this time if they protest about my appearance of sanity. I’ll have to get my thinking cap on vis a vis a defence.

      Thanks for the kind comments though, they are very much appreciated! It would be great to have you back on the blog sometime David 🙂 In the meantime, take care and all the best.

  14. Re: a defence — I recommend protesting that you were channelling a highly-intelligent alien. That would both explain why the letter is so great, and have the added bonus of making you seem crazy enough to qualify for additional sessions. Yep. That’ll solve all your problems, right there.

  15. Excellent letter, well worded I really hope it gets you somewhere and that you can continue your treatment with the therapy. I ended my own weekly group therapy sessions abruptly in April, the worst thing I ever did. The said therapy group in question came to an end in general for everyone else in October when funding was pulled in October (no surprise there with the NHS!)

    • Hi Alison, thanks for the kind words – fingers crossed indeed! I’m so sorry that ending your therapy proved to be the wrong decision 😦 How horrible that they ended it in October anyway…it seems so arbitrary that they think everyone would be ‘well’ at that point. Although I’m grateful for it, the NHS is a mess when it comes to mental health.

      All the best to you x

  16. […] The Advocacy Letter « Confessions of a Serial Insomniac […]

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