Are you on a waiting list for counselling or therapy? Have you been told that the treatment you need is not available in your area? Share your story, and let your voice be heard.
Too many people in the UK are waiting for access to treatment for mental health problems. Talking therapies in particular can be difficult to access. There are long waiting lists for basic counselling for anxiety or mild depression. But for many people with more serious or complex mental health problems, accessing treatment can be nigh on impossible. Specialised treatment for Personality Disorders is particularly sparsely available. Treatment for OCD, Schizophrenia, Bipolar Disorder or PTSD can also be very difficult to get. People may have treatment recommended by their care team, which is then refused as it is either not available in their area, or is too expensive for the PCT to fund. They can wait years for the treatment they need to restart their lives. Meanwhile they are existing in a form of limbo and the country loses the benefit of their talents.
Rethink is running a campaign called Fair Treatment Now. They are aiming to raise awareness of this issue, and of the difficulties faced by people with a mental health diagnosis who cannot access treatment.
This page will contain the stories of people who are waiting for treatment. Its inspired by a friend, who has already waited many months for recommended treatment, and is uncertain when this will happen for her.
Please add your story about either waiting for mental health therapy, or being unable to access a particular talking therapy in your area, by using the comments box below.
3rd March 2011
I live in the catchment for the South London and Maudsley Health Trust (home to some major training rounds for Specialist Trainee Psychiatrists) and I *know* I’m lucky in relative terms. I was given a course of individual sessions of CBT for depression after a 6 month wait. But given unrelated therapy by the therapist’s supervisor during the course of the CBT, I developed Post-Traumatic Stress Disorder, which greatly increased my need for therapy.
At the end of CBT, I was referred for a once-weekly 16 week term of CAT, and for CMHT support during the waiting list. But the CMHT psychiatrist took a gatekeeper role to accessing his service, and refused me support (and didn’t bother to check that his grounds for refusal -that I’d been referred elsewhere- had actually been effected). My therapy referral was lost in the system, and although it ended up being followed up after 6 months (I kept presenting at A&E as I’d grown incredibly suicidal), the resulting debilitation in my health meant I now need much more intensive therapy. (and I’m dead lucky to have it, I know).
The issue isn’t just about the QALYs lost on the waiting list, or the ‘real life’ impact on real people. It is about the extra resource cost imposed by the waiting list. A stitch in time.. My CAT would have cost a few thousand pounds and I could have returned to work and repaid the tax after a few months. The therapy I’m about to start will cost in excess of £100k, my A&E & hospital costs were however much more, and I’ll be on benefits for at least 3 years all told (and likely longer- I can’t even get a job interview where there’s a Guaranteed Interview Scheme for disabled people- and that’s for the same NHS Trust).
3rd March 2011
I have been diagnosed with DID for ten years previously I had many other diagnoses – I saw my first psychiatrist when I was 8 years old having been abused and nearly murdered by parents – He pronounced I was a liar without ever even looking at me or asking me anything – obviously he couldn’t bear to hear a truth he suspected I tried to tell a teacher and later I had my first suicide attempt when I took a bottle of 100 aspirin when nothing happened for hours I phoned the samaritans and they told en to get off to leave the the line for real people.
55 years later I cannot see the only psychiatrist in Northern Ireland who has some expertise in dissociation as she is not in my trust area. NO one knows if there is anyone else in the province with DID- The local mental health team will see me as a suicide case at the point of desperation – I am a carer for someone with schizophrenia and severe OCD – I think that I am going to lose it before I get help.
13th October 2010
I was abused from a young age anyway, but psychatrists constantly looking for family to blame wasn’t helpful.
I mean, yes, my father abusing me was awful, but what happened after (he stopped when I hit puberty) was worse.
My mother was a psych, so saw a psych very quickly as a kid but confidentiality was non-existent. Went back to same psych as an adult, who told me people often got aroused about talking about sexual abuse. Needless to say, I didn’t go back to him.
I only ever found rape crisis helpful. Less waiting, complete confidentiality, no pressure, equal power relationship, same person always.
On the NHS: waits of over a year, endless streams of different psychiatrists, expected to tell all in one session with no aftercare, no idea who they are sharing notes with, you’re told what to do like a kid, they don’t listen, and all but one I ever spoke to didn’t believe me when I said I’d been forced to work as a prostitute for 3 years as a kid.
It starts and ends with incest for them. Unless you’re a complete incoherent mess. Which I never was, as how the hell else would I have survived? They also didn’t understand Dissociative Identity Disorder and didn’t believe it.
So no good experiences with NHS psych I’m afraid. Which generally means DLA don’t think you’re ill enough for benefits
13th October 2010
12th October 2010
At start of November 2009, I was already on the CMHT waiting list for psychological therapy. The OCD was severe, and having a massive impact on my life. I desperately needed therapy. The NICE guidelines (section 22.214.171.124) state that if someone has had a course of CBT for OCD, and then has a relapse, the individual must not be put on the normal waiting list for more therapy, but be given further treatment as soon as possible. Despite this, eleven months later, I am still waiting.
I’ve been assessed locally, then referred for specialist treatment available in another PCT. Once assessed by the specialist team in that PCT, I was accepted for treatment. Subsequently, a funding request for this treatment was submitted to my local PCT, only to later be withdrawn. Recently, I have been led to believe that treatment more or less equivalent to the specialist treatment, provided by the other PCT, is now able to be provided locally. It appears I will start this locally provided treatment about the end of this month. You may sense a degree of doubt, and if so, you are right. It is only when treatment actually starts that I will believe it, and even then I think I may well worry in case it is stopped unexpectedly. This doubt and worry comes from my experiences over the last couple of years.
I reckon by the time I start treatment, I will have waited a year. Obviously, if I include the months prior to November last year, when I had asked for therapy but had not actually been put on the waiting list, my total waiting time is longer. This does not quite seem to be in line with the Nice guidelines! If we assume that in order to comply with those guidelines the wait would have been say, two months, it means that I have waited ten months longer than laid down, and five times longer than recommended.
Whilst not strictly on the topic of ‘Waiting for Therapy’, I believe the following is an important point highlighted by my experience. The Nice guidelines relating to OCD were published in 2006, so there has been 4 years during which the National Health Trusts and Local Authorities have had the opportunity to adopt them. My experience leads me to believe that there is a total lack of commitment to implementing them. If these guidelines are not going to be adopted, it raises the question as to whether they are worth producing. If they are not produced at least that saving can be diverted into treatment. In addition to the waste of money that results when guidelines are produced and then ignored, there is the danger that government and other authority bodies hide behind them. Somehow the fact that the guidelines exist is falsely cited as proof that things are improving. We are hoodwinked into equating the existence of guidelines, with them magically being adopted and implemented.
I leave you with the following regarding the last year.
- I have experienced a massive lack of control over my life. It has been put on hold, for an indefinite period of time. I am powerless to get it back on track, and am still waiting for someone somewhere to provide the treatment I require. One of the things that contributes to OCD is a lack of control, so ending up in a position where I have little control just compounds the OCD.
- The last year has been one of many disappointments surrounding my treatment. This has had an adverse impact on my mental health.
- The OCD has gradually taken over more and more of my life. I am able to do less and less. The OCD behaviours have also become more deeply entrenched. I am not alone in this, the progression of untreated severe OCD is acknowledged. If you have a severe infection but do not have antibiotics, it will get worse, in the same way, if severe OCD is left untreated it gets worse.
- I can never prove this, but I am certain that for me to recover, it will now cost substantially more in terms of treatment, than it would have if I had received treatment earlier. I also doubt whether I will actually ever recover to the same degree, as I would have if I’d received treatment say 10 months ago. I do not view this as pessimistic, rather as realistic.
3rd October 2010
Went to GP in Febuary as depression touched critical level march got word of assessment to attend in april. april monies were stopped as to ill to attend. 2 weeks ago first appointment with specialist doc. unable to get meds as all monies have been stopped including mid rate dla. got to wait 6 weeks in between appointments. still no help with monies being sorted out. food is gone. not much else to carry on for now. just carrying on until i colapse now. nothing more i can do.
3rd October 2010
I’ve been in ‘the system’ since I was 7 or 8 with mental ill health (not my AS), first in CAMHS obviously.. In childrens services there is A LOT more focus on ‘talking’ therapies. As soon as I got to 18 the focus switched to one totally focused on medication (forced if need be).
When I was a kid- I didnt talk to the therapists because they consistantly ignored confidentiality early on. Later on in life I found I could trust some of the professionals I met and agreed to try again when it was offered.
I have been refered again and again for psychological services and knocked back each time by the services themselves (after a long wait on a waiting list first) because they do not deal with people with Asperger’s and no learning disabilities (if I had learning disability and ASC there is a service in the area). If I were to go for CBT (thats what they wanted me to do) I would have to make a very difficult and long journey to a city in a different county (impossible for me).
Over the years during this my lable has changed from depression/OCD to bipolar and now schizoaffective disorder.. Spent a great deal of time on sections.. about 1/3 of my life has been spent in ‘short-stay’ hospital..
I don’t want CBT now because I’ve become suspicious of how they say it ‘changes how you think’ (part of my ‘schiz’ they say- I’m not sure).. But half of me can see that if I’d been helped to control and cope with the stresses in life earlier on- I could have benefitted and may not be even thinking like that..
I’ve met about 15 people in my area who have been *refused* CBT in the area due to AS, I’m sure thats just the tip of the iceburg.. I know theres enough people to employ someone at least part time rather than refering them out of area.. It is something that wouldn’t be beneficial to myself at this time but its awful that still people have to go on the long waiting list and then just get refused at the end.. when they have just as much right and would benefit just as much as someone undiagnosed.
21st September 2010
Hi. My name’s Pandora (well…it isn’t really, but please indulge me), I’m in my late 20s and live in Northern Ireland, and I blog at www.serialinsomniac.com. As regards treatment for mental health issues, I fear that my situation is far from unique.
This is, to a point, a redacted version of version of a post at http://serialinsomniac.com/2009/09/02/a-half-life-in-therapy-the-fabled-post-of-therapists, wherein the brave amongst you can read *all* the sordid details
I first presented to my GP experiencing mental health difficulties, including self-harm, at the age of 14, at which point I was diagnosed with major depressive disorder and given a dose of Fluoxetine. I am not nor have I ever been against the use of medication in the management of mental illness, but clearly a teenager with depression should also have received a referral for some sort of psychotherapy.
After much door banging and complaints, I was sent to a counsellor – for the wonderfully effective total of ONE meeting. In fairness, it was probably clear to the counsellor that my issues were so deep and engendered that they were beyond his capabilities, and somehow or other about a year later I found myself in the hands of a trainee psychiatrist, (merely) on rotation in CAMHS.
In fairness to the woman in question, she did try her best to offer me assistance, and had I seen her on a long-term basis, she maybe could have done – who knows. Unfortunately, though, a relatively short time after first meeting her, she moved to another job. Was I moved to another clinician? Was I hell!
Fast forward a few years, and I was sent to a psychological assessment at a local hospital. On hearing I had issues of sexual abuse, the assessor threw a phone number of a local charity at me and pushed me out of the door with no referral for any sort of therapy. By this time I had also developed significant anxiety issues, and was diagnosed with social anxiety as well as clinical depression by my GP.
Inexplicably, I got through my undergraduate degree without *too* much difficulties but had a major, major breakdown during my post-graduate course (at the age of 22). My medication (then at 80mg of Fluoxetine) was changed to Mirtazapine. I was out of work for six months, and was referred for NHS CBT. Knowing the ridiculous waiting lists, I saw both a psychoanalyst and a hypnotherapist in the private sector, and thanks mainly to the latter was able to return to part-time work.
Eventually an assessment for the CBT came through, and I was referred for group therapy. Cue another six months’ of waiting. When the time finally came, the sessions clashed with my part-time job, so I was told I’d have to go back on a waiting list for individual therapy. I agreed to this, but never heard anything from the health service on this matter again.
I eventually managed to go back to full-time work for a year but in August 2008 suffered my worst breakdown to date. I was once again supposedly referred for CBT by a (very unpleasant) Crisis Team, but the referral (perhaps unsurprisingly) never came to fruition, so my Nurse Practitioner made the referral herself some time later. In the meantime, I sought CBT in the private sector, and found it frankly terrible. I was relieved when my latest NHS assessment session ended up being with a psychologist who didn’t practice it (he offered multi-disciplinary treatment, but it was mainly psychodynamic, which suited me *much* better). His name was C, and I first met him in February 2009. I was, by this point, also waiting on a psychiatric assessment, which when it eventually came in June 2009 (!) saw me diagnosed with borderline personality disorder with psychotic and dissociative features, all of which was topped up this year with complex post-traumatic stress disorder. Yay.
Anyhow, C was the first therapist in either the private or public sector to really get me, and we were for a while making some progress. BPD and C-PTSD both require long-term psychotherapy, usually of at least 18 months, twice a week. I was only getting one 50-minute session per week, but after all the faff of the preceding years I was grateful just to be getting *anything* that made even a slight difference. And then the bureaucracy of the NHS kicked in.
C announced in December 2009 that he could only continue to see me for approximately six more months, in contravention of the NICE guidelines and the Northern Ireland PD Strategy. I decided to fight this premature cessation fervently, a battle which has now been going on for nearly 10 months.
The entire story is outlined at http://serialinsomniac.com/series/the-mr-director-person-letters, but in short, the local health Trust were *resolute* in their refusal to continue my therapy and I was discharged from same on 26 August this year, in a notably worse condition than I even had been at the time of entering therapy, in part due to issues of re-traumatisation brought up by the process. I accepted that as an inevitable side effect of psychotherapy, but it seemed only reasonable to me that therapy then proceeded to the point where the issues in question had been adequately worked through. Instead, I was chucked out of care like dirty dishwater, a mere inconvenience with a nasty personality disorder. This was especially offensive given as C had been the first and only person I’d met to be able to help in *any* way.
The issue is presently in the hands of my MP, my local MLAs and the Northern Ireland Health Minister. I do not expect to see C again, but I am determined not to simply let the Trust get away with it. I am nearly 27 now. They have failed me for almost 13 years, just like the NHS seems to frequently do in the realm of mental health, and enough is enough. I am a great personal risk if I abandon my blogging pseudonym, but I am so horrified by the Trust’s continued failings and, in some cases, outright lies, that I will make the issue public if I have to.
Can you see this happening for someone with a physical illness? No? No, me neither. And now the government wants to kick us further in the teeth by taking away the few pounds they allow us to exist on.
There’s plenty of soundbites out there about how governments would like to help those with mental health difficulties, but it’s all rhetoric in my observed opinion. Nothing has changed.
14th September 1010
I was diagnosed with potential bipolar disorder around 13 years ago now I think Though I’m not sure of the exact dates as my memory is vague and my GP refused to let me have a copy of my medical records (I shouldn’t have told him I was writing online about it!)..
Anyway – the point is that I was fortunate. After stabilising on medication I returned to work and had enough funds to pay for private therapy, which I received for around two years. First of all twice a week and then weekly. When I approached my psychiatrist about receiving talking therapy and looking at a program of “recovery”, instead of ticking over on medication, I was told that it simply didn’t work like that – i.e you’re ill, you’ll be on medication for the rest of your life, get used to it, sort of response. I never returned to the hospital again! That will be the last record of me at the mental health unit!
Now, I have been living medication free for over 7 years thanks to the private psychotherapy I received. I didn’t have a lifelong illness caused by a chemical imbalance – I just had stuff to work through. I’m sure that two years of psychotherapy would have cost the government a lot less than paying to keep me on medication for the rest of my life with regular check ups at the hospital!! Not to mention the physical side effects the NHS would no doubt have had to deal with in the long term.
I had hoped that things had improved now. It saddens me to read your stories. A couple of other things I’ve learned that may help – There are charity based organisations that offer psychotherapy and counselling and have bursaries available to support those on low income. You need to route around to find them though.
Also – my diagnosis didn’t play any part in my therapy at all. We just looked at my emotions, where they were coming from, and looked to develop an understanding of what had shaped me. I’m not a great fan of diagnosis as I feel it can sometimes block recovery. Only saying that because of mentions of specialist therapy relating to a particular diagnosis. I would always think of seeing a holistic therapist who didn’t really look at the diagnosis.
12th September 2010
My particular mental health challenges are depression and anxiety. My most recent episode of depression came to a head in late March of this year- I was dutifully signed off work by my GP, and started the merry go round of antidepressants and not much else (from the NHS side, I had just started seeing a private counsellor about my anxiety before the acute onset of this depression and continued seeing her during all this.) Six weeks later, I was on the brink of suicide and was finally referred to the secondary care mental health services. I was assessed and referred to the local Crisis Resolution/Home Treatment team and stayed with them for two weeks. At the beginning of June, I was discharged to the “care” of the Community Mental Health Team, and that’s where it all went wrong.
During my time with the CRHT, there was initially talk about getting me into see an IAPT worker (CBT therapist) at my GP surgery since I had never had CBT before. I was skeptical that someone with complex issues would be best served by a few months of CBT, but it turned out to be a moot point, because it never happened. I was referred for primary care CBT at about the same time as I was referred to the mental health services in May- I received one letter saying “sorry, we can’t take you, our books are full” and haven’t heard anything since. So then, I turned my hopes towards getting help from the specialist mental health services, but since June I have had two appointments with a community mental health nurse which mostly consisted of going through “So You Have Social Anxiety” type booklets full of basic information that I already knew. My appointments are supposed to be every two weeks, but there were over three weeks in between the first and second appointment, and then over a month between the second and what was supposed to be the third- but a week before my third scheduled appointment, I received a letter saying that it was cancelled. That’s it, “sorry, we had to cancel your appointment.” No word on any further appointments, any further treatment, any actual therapy. It’s just so disappointing and disheartening, and I have no idea when I’m actually going to get a proper service, if I ever will.
Thankfully, I’m actually better off than most people who are in this type of situation, because as I said above, I have a private therapist, who I see weekly. She is really amazing and I’m not sure I would have made it this far without her. But private therapy is not cheap and my husband and I have had to sacrifice a lot to be able to afford it. As a resident of this country, I am entitled to all the privileges of NHS treatment and I should get it- I should not have to be paying for therapy. Not to mention the fact that even though I do have a private therapist, she’s currently unable to guarantee that she’ll be in the area long-term, and from my sessions with her it’s pretty clear that I will need long-term psychotherapy in order to get through this. That should be freely and easily available on the NHS, and it’s just not. I find that really unacceptable, and have written formally to my local mental health trust to try to get some answers. However, my experiences seem to be fairly normal, which I find very sad. No one should have to wait months or years for proper treatment.
26th August 2010.
“Waiting for access to specialist therapy/treatment has been for me a long winded, and tortuous journey, for which I still have no confidence will be solved in the near future. It has been 18 months since my consultant psychiatrist promised me access to specialist therapy/treatment services. Due to nature of my diagnosis, & other problems I am deemed too complex, so I am told that I will need long term intensive specialist therapy/treatment, not short term therapy/treatment.
I do not even know whether I am still on a waiting list anymore, as when I ask my care co-ordinator for further news , I just get the answer it’s a plan for the future.
The trouble with this is that I have to be deemed well enough, in mental health terms, to access the specialist care I desperately need. The consequence is the longer you wait the more it affects your mental health, and a vicious cycle begins.
Other complications also then interfere. Arguments between GP’s, CMHT’s, the trust & the PCT, over what I should be offered? Who will pay? Who is responsible for what? Making the processes long winded, inefficient & frankly childish from my perspective.
Meanwhile I wait, more in hope than expectation, that anything will happen in the near future. Especially as NHS cuts bare down on NHS mental health services, and DWP decide that ATOS Medical Services can decide my future, not the mental health professionals.