Treatment – the waiting game

Posted on: June 9th, 2020

Caitlan has suffered from OCD for many years. Seven years ago, she and her family moved to a new home, and a few months later, she was able to start a new job. In terms of the OCD she had been struggling with, she was in a relatively good place. New home, new workplace, fresh start. Family and friends looked on and dared to hope that perhaps the worst was over.

She managed to stay in the job for four years. She was still very challenged by OCD, but she was managing better. She was more in control of it, and of her life in general.

Unfortunately, she then suffered a major relapse, and, over the space of six months, became so ill again that she couldn’t work, not even part time. She could barely function.

In the June of that year, Caitlan’s GP referred her back to her local Community Mental Health Team (CMHT). She had been under their care in the past. They assessed the situation, confirmed that there were no further treatment options they were able to offer, and said she needed to be assessed at the next level of care, Tertiary Psychiatric Services. These are ‘highly specialized mental health services designed for individuals with severe mental illness who have not responded to treatment at the secondary level of care’.

The process from referral to assessment took over four months, but with the wait, she also had hope.

The ‘positive’ outcome of the assessment (October) was that, as she scored 38 out of 40 on the Yale Brown Scale, Caitlan qualified for treatment from the NHS Higher Specialist Services.

‘Positive’ and ‘38/40’ on the YBS seems like an oxymoron; however – it was another step closer to accessing effective treatment. That was cause for hope. Especially as the plan was that Intensive Homebased Therapy would begin by December, latest. That was only six to eight weeks away. Relatively…not too long to wait.

Unfortunately, it didn’t happen.

A further assessment by the same team was carried out in the following January. A month after that, after some waiting and a lot of chasing, Caitlan was told, in a phone call, that it had been decided the plan for home treatment wasn’t appropriate after all, and a referral needed to be put in place to an Anxiety Disorders Residential Unit for inpatient care.

That referral was made, and after a further wait, (two and a half months), and further chasing, the assessment took place. (April).

The conclusion of that assessment was that this was not a suitable treatment plan either, because the unit did not have the twenty-four hour staff supervision which it was felt Caitlan required. (This begged the question – how had the team who referred Caitlan to this Unit not know this already-? They had assessed her, knew how critical her condition was, knew how the Unit was run).

Fast forwarding – another referral was put in place. This was followed by another wait, (‘only’ two months this time). Then came another assessment, at a highly specialist unit for severe OCD and Anxiety Disorders. Then an admission. (June).

Strange that news of a hospital admission could be cause for celebration. However, a year on from when Caitlan’s GP put the referral for treatment in motion, treatment was happening.

The sad ending to this particular story was that, six weeks later, Caitlan was deemed ‘too anxious to engage with treatment’. Because of that, and because her BMI was ‘too low’, she was discharged.

You can imagine how a year like this impacts on the self-esteem and mood of a person already struggling with a severe mental illness.

The awful reality of this story is that someone deemed ill enough to be referred to a highly specialized mental health service for individuals with severe mental illness was made significantly worse by the experience.

Several things from that year haunt us still. Including…

The psychiatrist who did the original assessment saying:

‘How old are you? 31? Gosh – we need to get moving with this. Help you get your life back on track as quickly as possible’.

The same person saying on the phone three and a half months after that first assessment, having explained that the homebased therapy was not going to happen after all,

‘We are sorry if you feel jettisoned….’

‘Jettisoned’ was an understatement.

Another awful reality is that this is only one example of far too many miscarriages of treatment.

We have the most wonderful National Health Service. No-one can be in any doubt of that. Especially not after the dedication and self-sacrifice shown by our doctors, nurses, and everyone involved in the NHS in recent months.

But we also have had successive governments who promise to improve treatment and funding for the NHS Mental Health Services, and yet do not deliver. We are urgently in need of parity between mental and physical health care in this country.

I cannot stay silent about this any longer.

Which is why I have written this story.

Thank you for reading to the end. Any help you can give will be invaluable.

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