Waiting for therapy: two and a half years on

The Waiting Room restaurant

Comments are welcome (below) or tweet me @Sectioned_

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• 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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Related web links

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Tweets and twitter conversations (Storify stories):

• My tweets today on the topic of my long wait for NHS talking therapies  (Storify story)
• The same, but including the tweets of others in response (Storify story)
• Are you talking about me? Keith Laws – In which the professor and a bunch of other professionals have a chat about this blog post (and  here)

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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: 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:

• BPS backs new call for parity of esteeem for mental health – “The We Need to Talk coalition, of which the Society is a key member, is calling for 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.” – The British Psychological Society (28th November)
• New report shows we still need to talk – “A new report released today by Mind for the We Need To Talk coalition (1) has called on the Government to fulfil its promise to make psychological therapies available across the country to people who need them.” – British Association for Counselling & Psychotherapy (28th November)
• Psychological therapy services show improvements but areas of concern remain, says national clinical audit report – “The second report of the National Audit of Psychological Therapies (NAPT) has found some improvements in services offered to patients in England and Wales – but identifies several areas of ongoing concern.” – Royal College of Psychiatrists (Thursday 28th November)
• We still need to talk campaign – Information on mental health charity Mind’s website
• We still need to talk campaign – “Take action now and make it clear that our mental health is important to the NHS” – Information on Rethink Mental Illness’s website , and what you can do to help
• We Need to Talk coalition call for faster and better access to talking treatment – “Care and support minister Norman Lamb has supported a call by the We Need To Talk coalition for faster access to talking therapies.” – Centre for Mental Health website

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Media coverage:

• Call for faster patient access to talking therapies – “Patients are still waiting too long for counselling and other talking therapies, say mental health experts, despite wide recognition of their benefits” – BBC news (Thursday 28th November)
• Charities attack treatment delays for mental health patients – “Ministers urged to act quickly as survey finds 12% of people are forced to wait more than a year to be seen” – Guardian newspaper (Thursday 28th November)

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