16 months on the NHS waiting list, my experience

So after 16 months of assessments after assessments it has been decided by the wonderful Mental Health Services that i should "Carry on as i am" in fact the exact quote

"Make use of CBT techniques you have learn't to help live with your OCD and chip away at it. then practice relaxation techniques and get support from my family in going to the gym and building structure around your day."

Now the whole point of me going to the NHS was because my OCD was clearly too chronic and resistant to CBT techniques i had learn't, which by the way i had to pay for privately at a cost of £100 a session because there was a 6 month waiting list for such treatment on the NHS, and health wise i couldn't afford to wait that long or i would end up in hospital due to how low my weight had become.

So 16 months wasted basically while i've struggled on with my OCD unable to do many things i've wanted to do due to the crippling and debilitating fear that the OCD brings with it, my weight on average is borderline anorexic for my age, weight, height, so i thought people should know what the NHS has been doing with me for the past 16 months.

Now this is not to put other people off getting help, i highly recommend you do, but it clearly needs to be highlighted how out of touch and underfunded the NHS is regarding mental health. This attitude would never be accepted if it was for a physical illness, so lets begin a timeline of my journey on the waiting list.

12th July 2017 Assessment

Basic Assessment where they was looking at possible alternative medication since i felt at the time my Fluvoxamine was possibly no longer working, i was given the choice of another SSRI Sertraline. So the decision was made that i would try Sertraline, no other treatment was discussed or offered

20th November 2017 Assessment

My OCD was significantly worsening by this point, my OCD was increasingly taking control of my eating habits so my weight has dropped to just under 8 stone, which is underweight for my age and height.

This was perhaps one of the worst experiences i've ever had at a assessment, the "Psychiatrist" arrived late and asked me

"What do you want to achieve from this meeting?"

"I want to have more control again" i said to which he rudely interrupted me and shot me down to go on a very patronising speech to which his advice to getting my over OCD was

"Helping out round the house more"

"Getting on a bus" YES Really he said that!!!! Seems to have me confused with some sort of GAD sufferer

"Getting involved with volunteering and charities to develop 'Good Behaviour'"

The letter ended "Hopefully Mark will take a more active role in his treatment" Seriously??

Safe to say i was NOT happy but as i was on my own i didn't feel confident enough to say anything, i hate to think what could happen if someone like this had that attitude to someone suicidal.......

I had now been discharged and told to go on as i am, my weight still dropping so another desperate appointment with the GP was needed, all they could offer now was a appointment at a eating disorder unit, but i would have to wait nearly 2 months!!! but at least the GP had the sense to get blood tests done to make sure i wasn't seriously lacking in any vital nutrients, but i was left too battle my OCD myself all through the Christmas period, my only other form of help in this time was, you guessed it private therapy, which me and my family can barely afford but you find away to make ends meet.

29th of January 2018 Assessment

This assessment took place at a eating disorder unit, so i was not expecting too much here as my eating disorder is a consequence of my OCD therefore not a typical eating disorder, but it was good of my GP to explore such a option so i was prepared to go.

They was actually very helpful and understanding, but as said above they was honest about the fact that my form of Anorexia due to my OCD was not something they had the resources for, however they was very helpful with nutritional advice to help keep my weight up as best as possible, which was just below 7.5 stone still at this point.

I was prescribed Ensure drinks which is prescribed for people who have issues with eating for all sorts of reasons and on top of this Thiamine tablets to help with my lack of B Vitamins

So now back to the GP for ANOTHER referral to CAMH current waiting list for a assessment was 2 months........so again having to find ways to pay for private therapy in the mean time to avoid a further slump in my condition

21st March 2018 A

Basic Assessment where they was looking at possible alternative medication since i felt at the time my Fluvoxamine was possibly no longer working, i was given the choice of a Anti-psychotic Risperidone a long with my current Fluvoxamine.

However health OCD kicked in especially due t my vulnerable state, and i noticed the risk of possible heart problems when taking Risperidone long term, and due to the fact the main cause of my OCD was the death of my Brother 'From a heart condition' i was very uncomfortable at the idea of trying this anti-psychotic so did not take it up after a follow up assessment on 17th of April

No further medication was offered and no other form of treatment offered either, but they did offer to get in touch with my private therapist to discuss options.

Also on a side note at this point they suggested i stop seeing my private therapist, i did point out to them i can't afford it anymore even if i could, in fact by this point i was actually 3 months behind on payments because me and my family had simply run out of resources to come up with the funds.

2nd May 2018

The people i had my assessment with got in touch with my private therapist and a decision was made to refer me to a senior psychologist for a assessment, which should of been who i was referred to originally, waiting list was another month

4th June 2018

Finally seeing someone which was actually suitable for my condition, a senior psychologist and i felt the meeting was productive

My CORE34 score was 13.8 which indicates mild to severe psychological distress and reduced functioning

My WSAS score was 27 which indicates severe of work and social adjustment

The psychologist suggested due to my treatment resistant OCD with CBT and my relapse that a more deeper complex form of psychological therapy might be appropriate, i was happy to go along with this idea as due to the severity of my OCD i am very open minded to most ideas within reason.

So i was referred to see a Psychotherapist, waiting list this time, 4 MONTHS!!!!!

1st, 15th and 29th of October

I had 3 meetings with the psychotherapist over 2 week periods, i really felt as nice as she was, that she had no idea what she was talking about and seemed to do a lot of uming and areing, In fact on my first session she even asked me why i was here today??

As many will understand it gets tiresome having to tell your mental health story for about the 10000th time, but for her to have no idea why i was at the appointment was shocking.

The session felt more like a family therapy session on all 3 occasions as i was accompanied by my Mum and Dad, in fact as my Mum and Dad agreed, all 3 sessions were basically discussing the same issues, no new ideas or any further forward which was a waste of a 30 mile round trip each time.

Her conclusion? She did not recommend Psychotherapy as she felt it would be too challenging and demanding for me?? I disagreed with this and said i was happy to at least give it a go and see how i got on, but she disagreed with my suggestion and said that i should. Just carry on as i am "chipping away at my OCD" as i am at a Plateau and will "Get over it"

I should also practice relaxation techniques and we should spend more time doing things together as a family????

No treatment offered and i was discharged, however she did agree to contact TalkingSpace plus about there OCD group they run as i felt group therapy would be very beneficial for me, getting to meet others with similar conditions, however TalkingSpace denied my request and said my OCD was not appropriate for there group.

WOW, so that's 17 months of assessments for you and NOTHING, just past from assessment to assessment with excuse after excuse, as for me i am still suffering from very severe OCD and left to try and fight this on my own.

Current weight is 7 stone and 12lbs and the Ensures prescribed to me have been a god send in this regard, sometimes i have gone 2 to 3 days without eating due to my OCD and Ensures have kept me going during these vital times, my diet in general is not great as when i can eat i feel i have to consume largely fatty foods to help put on weight

Currently unable to work due to how time consuming my OCD rituals are, 95% of my day is spent doing some kind of rituals, this includes driving, where often a simple 10 minute journey will take me around half a hour, due to me having to turn around and repeat routes

Unable to go to the gym, do my favourite hobbies whenever i want, see friends whenever i want, help with chores round the house when i want.

All this because of my crippling OCD and the physical fear that comes with it, people who have never suffered Mental Health will not realise how much your Brain truely believes your OCD

Me and my family are in debt, due to having to fork out for private therapy which involved having to sell many household items and make budget cuts to come up with the funds.

£10,922.50 is my total spend on private therapy in the last 8 years due to being let down by the NHS, this is the official number quoted by my private therapist, i am still paying some of this off from loans i have taken out.

This is the state of the Mental Health services on the NHS and it's not just about me either, there are people with more serious mental health issues than me getting the same or worse treatment, basically you have to end up in hospital to get fast treatment, to top this all off....

The Health Ombudsman and my local MP was limited to how much they could help it would seem but referred us to the NHS Trust who refuse to look into this because unknown to us, you have to launch a complaint within 12 months of your first assessment......otherwise your complaint is basically invalid.