Archives for posts with tag: complex post-traumatic stress disorder

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

The Acorn Programme at The Retreat

The Acorn Programme at The Retreat, York. After a long struggle it looks as if I might get the funding I need to go on this excellent programme, which offers specialist treatment to women suffering from complex post-traumatic stress disorder, such as myself. A big part of the treatment is the therapeutic community approach.

Hi, again.

Qualified staff tied up

Over the last four weeks I have spent time thinking about my care and the future, which felt bleak. During my admission, I have met some very nice people and on numerous occasions we sat together complaining about our level of care and our feelings of hopelessness. One of the main complaints was the lack of therapy and treatment, and it was apparent that the way the acute ward is run is based on observations, containment and medication. The qualified staff were tied up with administrative duties, and the support staff spent time with those patients who were under observation and needed personal care such as washing, dressing and feeding.

Patients left to cope with anxieties themselves

Those patients who didn’t need observations and personal care were expected to occupy themselves during the long days with very little to do, and to cope with their anxieties and mental health symptoms themselves. Support from most of the staff was limited, as staff reguarly claimed they were too busy. At times there was a lot of noise on the ward due to patients trying to abscond or presenting with psychotic symptoms. Staff often seemed to use control and restraint procedures and drugs to calm down the most challenging patients. Over the weeks it seemed that the only support some of us were getting was from each other, or from one of the activity groups coordinated by a lovely lady from an organisation called Rainbow Learning.

When I moved areas four years ago, funding for my care at The Retreat was withdrawn, and I had to access local services. Although the Primary Care Trust (PCT) states that its employees should not be treated locally, my new consultant was insistent that the local services in the area in which I work were the only option available to me. Services that were available were:

  • out-patient appointments with my new consultant
  • 72hr crisis support, and
  • admission to the local acute ward.

Focus on containment, not therapy

My new “care-provider” seemed to focus only on containment and not on therapy and treatment. I have endured various admissions to our local acute ward, formally and informally, and while the staff are generally pleasant (although not all of them always engage with me), I have never had any therapy or treatment during my stays. My fluctuating condition, which I think is best described as complex post-traumatic stress disorder (the same thing many war veterans are afflicted with), has therefore tended to deteriorate over recent years, and ultimate recovery has seemed doubtful.

Therapeutic communities and aspecialist programme focused on recovery

During the present admission I reflected on The Retreat Hospital and the type of care they provide. My experiences in the acute ward at my new hospital are hugely different to my experiences at the acute ward at The Retreat. There were many types of group therapy during the day, as well as regular one-to-one care with variously qualified members of staff. As patients, we were encouraged to look after each other too, and the ward was described as a “therapeutic community”. The Retreat also runs a specialist programme –  the Acorn Programme – for women who suffer with complex post-traumatic stress disorder, such as sexual abuse survivors. The programme operates as a therapeutic community, and there is even more group and individual therapy than the acute ward. The main ethos of the programme, in my opinion, is that everyone works together during therapy and supports each other in or out of therapy. The programme is about recovery, and is run by some excellent therapists.

A suggestion

During my current admission I have noticed how we as patients have been supporting each other and sharing our experiences. This type of interaction between us as patients has got me thinking. Surely if patients are lucid, orientated and want to recover from their illness would it not be more cost-effective to run more therapeutic communities in hospitals, to provide therapy groups throughout the day and daily one-to-one therapies, and to focus on recovery before discharge? Surely this would reduce admissions to hospital and the drain on resources in the community, A&E and general medical and surgical wards who provide care for those who have repeatedly self-harmed?

Consultant now looking for in-patient treatment for me

Talking of therapeutic communities, following the MDT meeting on Tuesday when my consultant asked to see me she gave me the news I had so longed for. She discussed my care over the last four years and voiced her concern that my admissions to hospital had increased and that my condition seemed to be getting worse. Out of the blue she began to tell me that she felt that all local services available to me had been exhausted, and she feels I would benefit from in-patient therapy. She told me she had made enquiries at St Andrew’s Hospital in Northampton who run a specialised programme for women. However, they only accept patients who are on a section 3.

News got better but four years wasted

The news got even better! She then told me that she had also made enquiries at The Retreat Hospital about the Acorn Programme, and was willing to apply for funding from the PCT for me so I could have The Retreat’s specialised treatment. I couldn’t believe what she was telling me! The sense of relief flowing through my body was amazing. The light at the end of the tunnel had finally appeared. Although I realise the process of gaining funding and waiting for admission will take some time, just the thought of knowing that treatment will eventually be available has made me feel more positive about the future. If one had applied a common-sense approach to my needs, then surely I would have been referred to the Acorn Programme years ago?  The money that has already been spent on my admissions to hospital over the past four years plus on medication, the use of  the local crisis team and admissions to hospital generally, would have amounted to far more than the Acorn Programme would have? I can’t help feeling aggrieved that I have wasted the past four years of my life because it has taken that long for a consultant to realise the treatment I need is specialised and that a therapeutic community is more appropriate for me. I can’t help but worry that there are many others like me who are still only receiving minimal and inadequate services and that recovery is therefore not an option for them just now.

Local treatment inappropriate

In order to strengthen my case to the PCT, my MP is writing to the PCT to support my application. The solicitor I have been using, who specialises in mental health, has written to my consultant informing her that it is inappropriate that I am treated locally in the future. I have had to treat many patients during my duties as a paramedic and then to have to see them again in hospital as a patient is not only embarrassing but I feel it could also compromise my professional position. Thank goodness I work with very supportive colleagues, a fact that helps enromously and means a lot to me!

My consultant granted me home leave Tuesday to Thursday, and requested that I see her on Thursday morning at 9.15 to discuss discharge and the future. In a new post I will let you know how that meeting went and what further hurdles I have to face over the next few months.

Love and best wishes

Angela x

Angela Bayley with Father Christmas

Here I am with Santa. Many children are traumatised by meeting Father Christmas (Santa Claus). However, what caused my complex post-traumatic stress disorder (or borderline personality disorder) was far more disturbing. In this posting I discuss these diagnoses. I hope healthcare workers will read it.

Hi, everyone.

I hope your weekend has been as good as mine.

Off like a shot

I didn’t tell you in my last posting, but I had originally thought I would be leaving the ward at 10 a.m. yesterday, not 1 p.m. I was set ready to go home at 9.30, full of excitement, and so I was absolutely horrified to hear that my section 17 leave was to start at 1 p.m. Like I mentioned in yesterday’s blog, time passed slowly, but Andrew eventually appeared at 12.45 and as soon as the clock struck one I was off like a shot.

A cuddle and a whirlwind

I arrived home and the first thing I did was cuddle Laura. Her face was a picture of happiness to see me home. I felt motivated to crack on with the chores Andrew hadn’t managed to get done due to the pressures of work, caring for the girls and visiting me. It’s been a long since I felt interested in my surroundings or motivated to look after the home we have built together. Yesterday I was ready for action and determined to get back to normal, put my Mum and wife head back on, and make up for the things I had overlooked. I went through the house like a whirlwind, cleaning, washing, ironing and changing beds. The house felt clean and fresh and I was looking forward to getting into a nice clean bed.

Mid-afternoon, Sarah and Charlie (my childhood social worker and her husband) came to see how I was before they went on holiday, and they brought me a lovely scented candle for the lounge. We all sat together in the kitchen, putting the world to rights, and we also discussed my current situation with the police, social services, mental health services and work.

Positive – no flashbacks or alcohol

For once I managed to engage in a positive conversation and not be haunted by flashbacks and avoidance tactics, like medication, self-harm and alcohol. Andrew had bought me a bottle of wine, based on our agreement that I would only drink at weekends. I managed to forget it was sat in the fridge.  Compare this to a few weeks ago when I’d have finished it within hours of it being bought and would be well onto my second bottle! With Andrew’s support, I was determined to stay focused and positive as well as tackle my problems head-on.

My stepmother is harmless now

Not long after Sarah and Charlie had gone, a blue car pulled up outside the house. My heart sank as I saw Lillian (the stepmother whom I describe at length in Disruptive) get out the car with her mother. I didn’t want anything to ruin my weekend, and I knew her presence could trigger bad thoughts and feelings. Although she is harmless now, and has certainly repented her sins, she is a clear reminder that I had a troubled childhood and that my father abandoned me on more than one occasion.

Not swamped by uncomfortable feelings

Anyway, I opened the front door with a big smile and told myself that Lillian’s visit was with good intentions and she wasn’t going to trigger my emotions or cause me any harm. She handed me some beautiful flowers and I led her and her mother to the kitchen for another cuppa. We had a good natter about “this and that”, and then she told me my father had been in touch with her to tell her about my book Disruptive, which she hasn’t read. This was the first time it had been mentioned since I had started writing it. I managed to push my anxieties to the back of my mind and explain the process of my writing and how useful it had been. I told Lillian what my aim was – that it wasn’t to apportion blame but to help me understand things that had happened to me in the past as well as help other survivors similar to me. I really stood my ground, whereas normally I would pussyfoot around Lillian, feeling guilty if I upset her and caused any disruption. It was an achievement to believe in myself and not be swamped with uncomfortable feelings and maladaptive behaviours.

Enjoying the moment

Andrew, Laura and I managed to sit down on the sofas with our pizzas round about 8 p.m. Andrew cracked open my bottle of wine as well as getting himself some pear cider. Laura wanted to watch “Casualty” so we selected the film we wanted which we put on at 9.30 p.m. It was so nice to just relax all evening with my family, climb into my own bed and enjoy the moment instead of dwelling on my difficulties.

The diagnoses of “Borderline Personality Disorder” and “complex Post-Traumatic Stress Disorder” and health workers’ reactions

Talking of difficulties, one thing I struggle to get to grips with is the label I’ve been given: “Borderline Personality Disorder” (BPD). One of the kind comments on the blog talks about mental health workers only able to care for those with simple mental health diagnoses, such as depression, bipolar disorder or schizophrenia.  My consultant when I was at The Retreat, Dr Chris, was very sensitive about the label BPD, and would use a kinder label “complex Post-Traumatic Stress Disorder” (complex PTSD). My experience of mental health workers’ reactions when I tell them of that diagnosis is so different – it’s a lot more sympathetic! This just goes to show how discriminated against we sufferers of BPD are, and why there is such a lack of care.

Stigma: “attention-seeking and a nuisance”

NICE guidelines for some years now have included clear instructions for people with PTSD. However, it’s only recently that NICE recognised BPD, and, whilst they suggest that people with BPD are the highest risk group for suicide and that they can have terrible mental health symptoms, they are not very clear about treatment and appropriate care. Sadly, there’s a limited number of establishments that specialise in BPD, and they are usually private hospitals. The stigma of mental health is bad enough and workers are always wanting negative opinions to change. However, many mental health workers frown upon people with BPD, labelling them as attention-seekers and a nuisance. It’s clear that they have little training in this area of mental health and find it hard to understand or implement treatment. The feelings of not being understood are raw for people like me with BPD. I think services should start educating workers more in this area of mental health to prevent ignorance, discrimination and judgemental attitudes.

Please read about BPD!

As an NHS worker myself, I realise that many of us would like more training to deal with difficult situations and diagnoses but it’s seldom available due to cost implications and lack of resources. Therefore can I ask anyone who has an interest in mental health or works with people with mental health difficulties just to take a few moments to read up on BPD, and on how you can help? You would be amazed what a difference it makes to someone’s mood when they feel understood. Only 1% of people suffer with BPD but it would be useful if those 1% were taken more seriously.

User-friendly complex PTSD?

Maybe we should ditch the American label “Borderline Personality Disorder” and change it to the more user-friendly diagnosis, “complex Post-Traumatic Stress Disorder”? I would be interested to know what your thoughts and views are. I hope you can help.

Promised to be home soon

Today has been an easy day. I’ve done some more chores to ease the burden for Andrew. I also cooked a huge Sunday lunch, finished off with homemade apple and blackberry crumble and custard. It felt good to look after the family without considering it to be a big effort or chore. Time passed so quickly and before I knew it, it was 5.30 p.m. and time to go back to the hospital ward. I kissed Laura goodbye and promised I would be home soon.

Abusers have controlled my life for too long

Andrew dropped me off at the hospital and spent an hour with me. He seemed pleased that I was feeling better and encouraged me to stay in a more positive frame of mind. My abusers have controlled my life for too long and at times nearly beaten me. However, I’m still fighting and I am going to try and keep doing so.

I look forward to hearing your comments.

Love and best wishes

Angela x