Hi, everyone.

I thought it was about time I updated you on my condition and the hurdles I keep facing.

Complex Post-Traumatic Stress Disorder

You may remember in July last year me talking about a treatment programme that is available at The Retreat in York for people who suffer with complex post-traumatic stress disorder and (PTSD) borderline personality disorder. The reason I spoke about it was because in 2004 Dr Chris said the programme at The Retreat would be ideal for me and suggested I think about joining the programme when the time would be right for me to be able to concentrate fully on getting better without distraction.

Yo-yoing

Since moving to the Nottinghamshire area services have made it clear that there is little help for people with my condition and in fact they do their best to write people off as hopeless cases. Whilst I was in hospital when I started this blog my consultant gave me hope by telling me that she had made enquiries at The Retreat and said the programme there is suitable. However she would have to speak to the head of the personality disorder network to gain clarity on funding and an application for funding treatment at The Retreat would need to be made to the local Primary Care Trust (PCT). I was so thrilled that services finally recognised I needed specialist help to improve my quality of life so I could go onto to live a more happy and fulfilling life instead of yo- yoing between crises and moments of despair.

Experts refuse to recommend treatment

In September I met with the head of the personality disorder network who simply kept asking, “What is it you would like to happen?” I tried to tell him that he was the expert and he should be helping me and prescribing the right treatment. The meeting ended badly as I became upset as I was told that until I had decided what treatment I wanted there was nothing services were prepared to do. I was given a care plan which consisted of an appointment with my consultant periodically and 72-hour crisis support in the event of a crisis. I was refused psychological input as the therapist had left the service, and I was told there were no Community Psychiatric Nurses (CPNs) available. The local crisis team does not operate a 24-hour service so in the event of a crisis outside of their working hours I would have to go to A&E. There was no plan for therapy or treatment despite NICE guidelines laying down very clear plans for people with my illness.

They put the phone down

Since this meeting I’ve managed to get through the months with the help of Dr Chris on a private basis. Dr Chris helped me look at what treatment I felt I needed and has also helped bridge the gaps between crises. When trying to access services in times of crisis I’ve had to face staff putting the phone down on me, the crisis team refusing to visit and medical staff requesting I use my inner resources to cope or I have to pay to see Dr Chris.

Formal complaints before I got a meeting:  my letter ignored

In March enough was enough and I wrote to the head of the personality disorder network detailing what my treatment requirements were in line with NICE guidelines. He ignored my letter and it wasn’t until I’d made various formal complaints about the service I was receiving that a meeting was set up with this head of department. The meeting took place in May and I was told the only thing on offer was a group therapy session once a week in my local area, where I work, and I am aware that many of my patients attend this group. As well as my concern about my personal and professional life being compromised, I also raised my worries about the type of therapy he was offering. It was clear he had ignored my letter as I had said to him that I wanted to discuss my letter of request, which he had chosen to ignore. I explained that in order for me to recover successfully I felt I needed intense, in-patient psychotherapy. I said in order for me to have a successful life and be able to do the job I love and contribute to my family I had to recover with expert help. The response I was given was that the only thing available was the hour-a-week group therapy.  However they are short-staffed so it might not be available anyway. I was then told people with chronic illnesses just have to accept them and live with them. I asked about funding for The Retreat and I was told, “You will have to make your own application yourself”. My husband I left the meeting horrified at the lack of help offered, knowing that if I don’t get the treatment I’m entitled to I may never recover and the Health Professions Council (HPC) will never allow me to work.

I spoke to Dr Chris who was very concerned and also puzzled that a patient would be expected to apply for funding themselves from the local PCT. He said this is the job of a consultant, not a patient.

At my last HPC hearing a concern raised by them was that I wasn’t engaging in any therapy which would reassure them that I was helping myself to recover. They said that once I could demonstrate that I was engaging in therapy they would consider me practising in the future. Consequently I asked my consultant to refer me to the once-a-week therapy group as this was the only thing available.

Guidelines ignored: tried fobbing me off

I also raised my concerns about applying to the PCT myself with the head of the personality disorder network. I wrote to him asking him how I would do this, and expressed my concerns about others who may be more vulnerable than me or less educated and not able to put pen to paper. I also said I should have the help of a doctor when making the application, particularly with regard to medical terminology and reports. The message I had back was: “I thought patients had to make their own applications as I’d heard this at a meeting I attended a few months ago. I may have misremembered what was said so I will have to speak to someone who knows about the correct process.” I think what he meant was “I tried fobbing you off and knew you might not be well enough to push for treatment so I gave you a task that was impossible”.  I quoted NICE guidelines for treating my illness and the head told me “Well, they are only guidelines”.

MP helpful

Finally, I received an appointment last week for what I thought was the local once-a-week group therapy program. When I discovered in fact that this appointment was just for an information hour and that it could be many many months before I start the program, if at all, I contacted my MP, Mark Spencer.

I met with Mark on Friday. He was very helpful. I tried to tell him everything that’s happened since writing this blog. He has said he is going to contact Nottinghamshire Healthcare and also Nottinghamshire County Council to find out exactly why both services have been behaving the way they have and why I am being given such substandard care: being forced to go private and being refused the treatment anyone with my diagnosis deserves. I will keep you all posted when I get a response.

Please share your experiences

If anyone would like to share their experiences of mental health services or offer any advice of programs of recovery it would be great to have feed back. Life is very lonely right now as I have little professional support and if I do access that support I’m either judged as a parent and professional for needing support or my requests for help are rejected. I just want to live a life worth living and move on from the trauma of the past. Happiness is all I dream about and it seems so out of reach at times.

The head of the PD network also told me the NHS is not a free service so I shouldn’t expect treatment to be handed on a plate. Who are these people in these positions making such stupid comments! No wonder the UK is in the mess it’s in!

I’ll blog again when I have more news.

Love and best wishes

Angela

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