As a follow up to my first published post on Facebook, I finished Mental Health Awareness Week 2019 highlighting my on-going battle to receive treatment for my PTSD…….
” I have been passed around from pillar to post by support services (alongside a police investigation) from a specialist Domestic and Sexual Violence Service in London, to more local services such as Rape Crisis, Sexual Assault Referral Centre, Victim Support, DVIRP (as it was called at the time), Living without Abuse (who represented my views at a multiagency risk assessment conference MARAC), Leicester Counselling Service (twice), IAPT, Adult Mental Health Services made mistakes in December 2013 and owned up to this in August 2014 when they finally referred me to specialist services within the NHS. For each of these services I have had to have an assessment, each time telling the same story, very traumatic to then be told half the time they weren’t the right service to meet my needs and I’d be signposted onto the next.
By the time I had an assessment with the NHS for trauma focussed CBT (recommended treatment under NICE clinical guidelines) it was November 2014 and 16 months had passed. They saw the mistakes that had been made and dated my referral when it should have been made December 2013 but there was still a waiting list to get through. By the time I was allocated someone it was May 2015, nearly two years.
I attended a few sessions before the therapist told me she couldn’t continue until my mood was more stable and referred me back to consultant for a medication review. I then restarted in January 2016 by this time 2.5 years had passed me by. It was a tough battle, at one point at the end of February 2016 I was told again that the therapy would have to end. I had to fight for it to continue which it did.
This was the case until the beginning of September 2016 when suddenly my mum (who had Myeloma) had a seizure and ended up in hospital. The therapist once again put my treatment on hold. No one knew what was wrong with my mum for weeks but she deteriorated before our eyes. Her consultant haematologist had never in his working life come across what my mum was experiencing and had to get second and third opinions from Addenbrookes and Queens Med neuro depts….a brain tumour on her frontal left lobe from the myeloma. They had no example of treatment to follow so had to trial the treatment regime. To cut a long story short thankfully, for her, my dad, me and the rest of the family she was able to make it home with specialist equipment and carers at the end of November 2016. We had a good Christmas.
My therapist agreed to review recommencing therapy with me just before new year. We agreed a date for beginning of January 2017 (3.5 years had now passed). Sadly my mum had another seizure on New Year’s Day which indicated the tumour was growing again, this time rapidly. I updated my therapist when I saw her but we agreed to continue fortnightly. I had two appointments and sadly my mum died in February 2017. My treatment was put on hold again.
I had a meeting with the therapist at the end of April 2017 which I thought was positive. However, on arrival I was told that my treatment would not resume until I was ‘over the loss of my mum’. She told me that once I felt able to carry on with the specific trauma work to contact her. My response to that was one of disbelief and by this time the hopelessness had kicked back in big time. I remember saying to her ‘how am I supposed to get over the loss of my mum without any support’. I had been told by so many people that my needs were complex but I knew that for myself.
During a random conversation with my consultant in August 2017 he happened to say something about me being discharged from that particular service. The therapist hadn’t told me, no one had told me. I found out that she had discharged me in May 2017 when she found out I was under crisis team. When I spoke to her after conversation with consultant she told me it was ‘a paper based exercise as she couldn’t have someone open on her caseload that she wasn’t seeing that were obviously at risk’. There was a meeting scheduled for end of October 2017 (4 yrs 3 mths) and she said we’d talk about it then.
My GP, Consultant and therapist were at the meeting along with myself. Basically, she had led me down the garden path and had no intention of resuming my trauma focussed CBT at all. During the meeting she said that mistakes had been made during the assessment process and had she done my assessment she would have delivered the therapy differently. To this day I do not understand why if this was identified by her why she didn’t change my treatment plan accordingly.
I have tried to access 1:1 bereavement counselling through a Leicester based charity but due to all the trauma stuff it’s too complex to separate out, that became apparent after a few sessions so I’m stuck with not being able to process that either, then my friend’s suicide, stuck again….layers of trauma that can’t be processed.
My CPN did suggest last year (2018) that I went back to Leicester Counselling Service to have another assessment with them (now over 5 years of PTSD and no treatment) I’m disadvantaged as my income is ESA I do receive a small disability premium on top but it’s not much. I would be able to afford to make a nominal payment. Another assessment, another having to ‘retell my story’ traumatic in itself. The outcome after the psychotherapist spoke to the director – that my needs were too complex for them to work ethically with me as they weren’t connected in any way to Adult Mental Health Services and that Adult Mental Health Services have a habit of signposting people their way that they should be managing themselves.
It’s now May 2019 and in the middle of June 2019 starts the 6 year anniversary of my trauma. Still no further forward in receiving treatment and I’ve no therapeutic support in nearly 3 years. In reality I’ve only really had a block of 8 mths of treatment in those 6 years which because it ended abruptly has left me ‘stuck’ in the work I was doing and the processing. So my brain is effectively stuck, it can’t process what it needs to then everything else life throws at me creates a backlog of stuckness which then becomes one big mess and it can quickly send my brain into overload. I’ve done 99% of what I’ve described on my own over and over again with either no or a minimal social network. I have felt so isolated and it’s been such a tough and lonely journey.
At times I’ve been pushed to go ‘private’ but 1) I don’t have the financial means 2) we have an NHS service and morally I find it wrong that I should have to pay for treatment. I’ve never not worked until 6 years ago and haven’t been able to work since.
This week I was informed that EMDR therapy is another treatment for PTSD that would benefit me but the community mental health team have one psychologist who can deliver it and she has a 2 year waiting list. They have gone back to specialist psychological therapy services to see if they will deliver it instead. Deja vu, it would be the CBT dept who discharged me without telling me….going round and round in circles springs to mind. 6 years I’ve been waiting and it feels like I’m back to square one.
It leaves me with so many unanswered questions the main one being how on earth am I supposed to rebuild my life without any treatment or specialist support? I do what I can, but as you would have read in my other post, day to day living is just so incredibly hard and drains me of a lot of physical and emotional energy.
That’s it from me, I think I’ve done enough sharing now, more than I’ve ever done on a public forum for Mental Health Awareness Week. I will return to being quiet!
As I sit here the birds are tweeting, the sky is shades of pink, orange and randomly, purple as the sun rises and a new day begins……I’ll try and do what I can and I have plans to see a friend this afternoon hopefully for a relaxing walk if her legs are still working after a road race this morning 😂😘x”