Waiting for therapy: two and a half years on

27 Nov
The Waiting Room restaurant

The Waiting Room restaurant

Comments are welcome (below) or tweet me @Sectioned_

Update small.

  • See below for full links to the We need to talk coalition report & coverage launched on Thursday 28th
  • Conversations with Prof Keith Laws about selective quoting of this post (20 April 2014)

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Reflections on trying to access NHS talking therapies

Disgraceful. Ridiculous. Not acceptable. Outrageous. Those are some of the words people used today to describe my long wait for NHS talking therapy. The most-used description was disgraceful. After two and a half years of waiting, I’m inclined to agree.

If NHS talking therapy was a boyfriend, my girlfriends would be telling me to stop wasting my time. It’s embarrassing how long I’ve waited. The promise of help is dangled, dangled, tantalisingly, just out of reach. And, in the meantime, I’m told to keep taking the drugs. It feels like an abusive relationship.

Waiting so long means the prospect of help has become like a dream of a knight in shining armour riding over the crest of a hill to rescue me. I sort of know that talking therapy can’t save me, but still I can’t quite help but hope. After so long, what else is there but hope? I want more for my life than to be stable on welfare benefits and drugs. I’m hungry for life. I’m ambitious to get back to life. I want to start living a full life once more.

It’s hard to know how much longer to keep hanging on. Wait, wait, waiting. Wait, wait, waiting for something undefined with someone unknown. Keep taking the drugs and see you in February, the psychiatrist said at our last appointment. It’s hard to know what to do in the meantime, when I struggle to function in daily life and struggle to manage troubling symptoms.

It’s exciting when someone talks of a vision of what modern mental health care could be. And scary to hear of the predicted future if those changes don’t take place – especially if some of that is apparent at the moment.

Earlier today, I read an interview with the incoming president of the World Psychiatric Association Dinesh Bhugra. Dr Bhugra called for a radical rethink of services provided for people with mental health problems, as well as changing the focus of approaches to psychological illness and the future of psychiatry. He made some interesting suggestions. Dr Bhugra also made some nightmarish predictions about the way provision for people with mental health problems was heading, some of which are already taking shape: fragmentation of services, selling off services for those with mild to moderate mental health problems, and leaving those with more severe or chronic problems languishing without proper help.

This prompted me to put into words some of my frustrations about my difficulties in accessing help and support beyond drugs and welfare benefits.

Where I live, changes have already been brought in that favour those with mild to moderate conditions, while I’m left to languish. Primary care psychology services introduced by IAPT will only treat those with mild to moderate conditions, and exclude people like me. If you have a mild to moderate condition, in my area you can refer yourself to primary care psychology & will be seen within weeks. If you fall outside that remit, you have to be referred to secondary care psychology. I’ve been waiting two and a half years for a first appointment.

If you knew how much money it costs to keep me parked on drugs and welfare benefits, you’d be calling for me to get treatment and support too. I figure that, with treatment and support, I could have been back at work within months. That’s the irony of being parked on drugs and benefits. I figure that, if I’d been treated properly – rather than being brutalised as an inpatient – I might have been back to work even sooner. It seems like someone somewhere has done a calculation that people like me aren’t worth helping. Just write us off instead, I guess. We’re no bother. And we’re too much trouble to help.

An interesting thing about this long wait for treatment is that I still don’t know what it is I’m waiting for: what sort of help will be offered. When my GP wangled some CBT sessions last year, my psychiatrist said I should ask for help with three areas. Yet, when I finally met with the therapist, she told me I had to pick one. So when I finally get to see someone from secondary care psychology – if I ever do – what sort of therapy will be offered? I don’t know. What will they be able to help me with? I don’t know. I’ve little experience of how psychologists work. Will they say “three things? Pick one”?

These are the problems I have experienced with accessing NHS talking therapy:

  1. Long waiting times

    It was over a year and a half after I was discharged from hospital before I started CBT with primary care psychology services. Two and a half years post-discharge, I have still heard nothing from secondary care psychology services. In what other area of health care would it merit no more than a resigned shrug of the shoulders when you hear that someone has waited for two and a half years – and counting – for a first appointment?

  2. Short treatment duration 

    In my area, sessions with the primary care psychology service are capped at 8. Frustratingly, when I was first referred, the cap was 20 sessions but, by the time treatment finally started, it had been slashed to 8. 20 sessions could have made significant inroads to the problem I received CBT for (PTSD). 8 sessions just picked the scab and poked a stick around in the wound. 8 sessions were barely enough to establish the trust and rapport needed to open up about painful experiences. In what other area of healthcare would you be discharged whilst making progress and told that’s your lot? “I’m sorry madam, although  your cancer isn’t cured, you’ve had the maximum number of chemotherapy sessions we fund so you’re being discharged.”

  3. No choice of therapy or therapist

    What you get is what you’re given. And make sure you’re grateful for it. I was referred for CBT with primary care psychology because that is all they offered. My experience of CBT is that it’s about as sophisticated as a quiz in a woman’s magazine, and about as helpful, but that’s all there was on offer. I don’t even know what therapy I’m on the waiting list to receive from secondary care psychology. In what other area of healthcare would you wait years for some unspecified therapy with an unspecified person? In what other area of healthcare would you get absolutely no choice of treatment or who you see?

  4. Exclusion from primary care psychology services

The clinical psychologist who assessed me at primary care psychology services told me that the IAPT programme excluded people with my diagnosis. Full stop. No matter what the problem is, no matter how amenable it might be to the sort of short-duration therapy they offer, my primary diagnosis means they won’t see me. My GP disagrees and says my diagnosis isn’t a barrier to receiving help. Primary care psychology maintains that they only saw me in the end as a special concession to my GP. I don’t know what will  happen in future but the message from primary care psychology seems pretty clear: they don’t want me.

5. Being passed between different services

The disagreement between my GP and primary care psychology, the seeming inability of the community mental health team to provide me with talking therapy (despite having a team of psychologists on staff) and the apparent mythical status of secondary care psychology services means I’ve been passed around like an unwanted parcel with my GP as piggy in the middle.  Each service says the other will provide talking therapy to me. Each has referred me on to the other. What has this meant?  This reverse turf war – or a game of pass the donkey – caused by the fragmentation of NHS mental health services has left me in no man’s land without treatment. Each service shakes its head at the delay – and says another service is responsible. Another service would be more appropriate. Another service.

You know when you wait at a crossing for the lights to change? In the end, the wait is so long that you dash across anyway. Then, when the lights finally go red, no one crosses. The traffic sits there at the lights, waiting for the lights to change. By the time therapy finally – finally – arrives (assuming it eventually does), maybe the symptoms will have subsided. Maybe I will have figured out DIY ways to function in life. Maybe, after years of waiting without help, after years of languishing and managing troubling symptoms as best I can, I won’t need it any longer. Maybe I’ll end up sitting in the therapist’s room, wondering what to talk about, not wanting to let the opportunity go by after such a long wait.

How much longer should I wait for therapy? I’ve waited so long already. Is it time to make a dash into the traffic & hope for the best?  Is pinning my hopes on NHS talking therapies coming through in the end simply silly? It’s felt that way for a long, long time.

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Web links thumbnail.

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Related web links

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Tweets and twitter conversations (Storify stories):

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Media coverage:
  • Dinesh Bhugra: Psychiatry needs a broader focus“The first gay president of the World Psychiatric Association wants a radical rethink of mental illness and for the profession to apologise for the harm it has inflicted on gay people and women”Guardian newspaper (Wednesday 27th November)

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Update smallUPDATE: We need to talk coalition launched their new campaign for access to NHS talking therapies on Thursday 28th. Full links below.

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Reports:
  • We still need to talk – A report on access to talking therapies – We Need To Talk Coalition (Thursday 28th November) (Also on the Rethink Mental Illness website)
  • We need to talk – Getting the right therapy at the right time – Report of the We Need To Talk Coalition“The We need to talk coalition is a group of mental health charities, professional organisations, Royal Colleges and service providers that believe in the effectiveness of psychological therapy. Together, we are calling for the maintenance and development of these treatments on the NHS. We want the NHS in England to offer a full range of evidence-based psychological therapies to all who need them within 28 days of requesting a referral” (October 2010)

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Mental health organisations:

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Media coverage:

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10 Responses to “Waiting for therapy: two and a half years on”

  1. AT 28 November 2013 at 2:06 pm #

    I am in the moderate depression category, and I am surprised they kept you waiting more than 2 years! I see that you got the CBT treatment, the quick fix, of wham-bam-scram fixing. I waited 1 year for 6 sessions. And then they had the audacity to say I was cured on their last letter!!! No follow up! I had to ask to come off the happy pills which did not help.
    Talking therapy on the NHS is a luxury, I found. No matter which postcode you are in!

  2. dorasnow 28 November 2013 at 4:38 pm #

    I keep wanting to leave a comment but I can’t write anything without it turning into a bit of a rant!
    Suffice it to say I’m sorry you have been waiting this long for therapy and still have no word from them. It doesn’t surprise me too much, unfortunately. I know that’s a heck of a long time to be waiting on the thing you hope will turn your life around. V tough to deal with.

    My wannabe-rant is more about the effects on specialist therapies of the introduction of IAPT, the likely usefulness of short-term CBT for…most people really…. and something akin to the fears you expressed about the direction of MH services and who ends up being considered ‘cost-effective’ to treat, or not.

    I hope you manage to get by well enough until the appointment eventually comes through (and that it comes through relatively soon).

  3. Fed up with lack of funding for mental health 28 November 2013 at 7:37 pm #

    In 2002, it was suggested I would benefit from a referral to psychology for therapy.
    I was told waiting list 2 years so no point in referring.
    I repeatedly asked to be referred, but by this time I had managed to get part time work, evidence of being well, so no referral.
    I loose my job due to psychiatric ill health.
    I get a new part time job with trust that also provide mental health services.
    Eventually I was ALLOWED a referral to psychology in February 2013, form not sent until June.
    Finally 11 years later I am on the waiting list for a psychological therapy, estimated May 2014, 12 years and 4 months after initial request by psychiatrist.
    Oh, and this is not unusual, the hidden judgemental power of waiting to be put on to the waiting list!!!

  4. Madelen 3 December 2013 at 1:21 pm #

    I think your blog post highlights the particular difficulties faced by people with severe mental illness. While I am glad there is progress on therapies for people with anxiety/depression – the mental illnesses perceived as ‘mild/moderate’ – there is little progress on therapies for people with SMI.

    People with bipolar are further discriminated in therapies by the limits placed on those with a bipolar diagnosis in seeking voluntary/third sector therapy. My experience is that, while each place comes up with the cliched ‘we look at each case individually’ the fact is that the moment I mention being bipolar and sectioned (albeit nearly a decade ago) they tell me I’m not suitable and to see my GP. Thus, in addition to limited provision on the NHS, I am denied and discriminated against in accessing free or sliding scale therapies in other sectors that are open to people without SMI .

    Since people with bipolar have fewer options in obtaining therapy outide the nhs than those with ‘non severe and enduring mental illnesses’ it is bizarre that the nhs isn’t focusing on improving provision for those who already have limited options.

  5. applepipspip 11 April 2014 at 12:54 am #

    I’m waiting at the moment, and I’m on the verge of giving up. Can you give me some tips on how to stay sane(ish) please. I really need something before it takes control.

    • Hearts&Homes 13 April 2014 at 3:19 pm #

      I had to wait about 10 months before the Clinical Psychologist would agree to start working with me. My Social Worker from the MH team was visiting me at home on a weekly basis, and she had regular conversations with the Psychologist. I have now been seeing the Psychologist for weekly sessions for about a year and half, and I can now understand why she wanted me to be more stable before she started working with me. We are using EMDR in some of the sessions, and I find it very good.

      For those who are still waiting, I hope that you will get your appointments before too long, and that you will be in right “place” to get the most from them.

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