Archives for posts with tag: BPD

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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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

[This post was written on the evening of Tuesday 6 July 2010, and posted the following morning.]

Hi, everyone.

I hope all is well with you all.

A new way of coping with borderline personality disorder

I thought I should begin with a quick explanation of why I didn’t blog yesterday. Due to some stresses I was experiencing I began to present with a psychosis i.e experiencing auditory and visual hallucinations. Part of my therapy was to be in a low-stimulus environment and have an early night, hence no entries to the blog. You may ask why I’m being so public about myself on a subject which sadly today is still a taboo subject. Well, my reason is so others with borderline personality disorder (BPD) will no longer feel alone, and it also reflects the fact that I have discovered a new way of coping.

Derogatory voices

Normally when I’m distressed I feel helpless, and because of this I push what limited services there are away, saying they are useless and can’t help. When I started with my symptoms this time, instead of reaching for the drugs and trying to knock myself out I decided to face the horrible symptoms head-on, and whilst I was feeling rational I kept telling myself they were not real. I then told my named nurse quickly before anything got out of hand. Together we formulated a staged plan, focusing on recovery instead of avoidance. I kept myself in public areas, was allocated a member of staff to stay with me to try and talk through how I was feeling. I used methods of distraction and my elastic band (see the end of this post). In my head I spoke to the derogatory voices, telling them to go away and that they were not real.

The Mansfield Chad article on my experiences.

This was how my story was recently covered in a newspaper. It will give you some idea of what lies beyone my present circumstances.

Verge of self-harming

In the afternoon I spent some time alone and, recognising when I was on the verge of self-harming, I sought help again and asked to see a doctor. The doctor came and prescribed some injections to dampen the voices and the anxiety. We agreed that although drugs can be sometimes an avoidance technique; it demonstrated to me that drugs are not the immediate answer and, in a way, experiencing distress also helped me realise that it can be dealt with in lots of ways, and the more I feel such symptoms for longer the more I will “desensitise” them and the less they will affect me.

Stopping and thinking

Tackling my illness head-on and “stopping and thinking” before I do anything destructive or maladaptive is a real way forward for me. I feel proud I haven’t self-harmed and that I dealt with things in a healthy way. If just one person reading this adopts my new way of coping then that will be one fewer person getting hurt.

Pampering and some hope

Today – Tuesday – has been a mixture of emotions. This morning I spent sleeping and then self-soothing by pampering myself a bit with lotions and potions. This afternoon I did some art and craft, which really helped take my mind off the MDT (multidisciplinary team) meeting between 14.00 and 16.00. I eventually saw my consultant, who was adamant she was going to continue to keep me in a very contained “well”, due to EDT (Nottinghamshire County Council) influence. My named nurse was with me and really supported me when I challenged my consultant’s decisions and actions. I wanted some leave and the section lifted. After a big debate, she agreed that I could be on a lower level of observations and that she would review leave tomorrow, discussing it with Andrew (my husband). While I was disappointed, a quick tug at the band on my wrist helped me stay positive and focus on making arrangements for tomorrow’s meeting.

I hope tonight, by expressing my own feelings and way of coping, I can help other people do the same or understand others.

Night night, everyone!

Love and best wishes

Angela

P.S. You may wish to read about other people’s experiences.

An extract from the coverage my story received in the Mansfield Chad newspaper.

An extract from the coverage my story received in the Mansfield Chad newspaper.

Hi, everyone!

Following my entry yesterday… writing the blog made me feel good and more positive. My job as a paramedic involves helping others and I’m hoping that writing this blog will go some way to helping others. Hey, maybe it could develop into a kind of support network for fellow survivors, carers and healthcare professionals?

Over the past week I have had a real battle on the ward. The ward staff here are fabulous and really caring and supportive. However, when they are ruled by Notts County Council and Higher Management in the hospital they are unable to care for me properly.

Absconded

I’ll briefly explain. I came into hospital just over a week ago. Since then the emergency duty team (Notts County Council) gradually, over the week, ground me down to the extent where I could take no more and absconded from the ward (which is against the rules of the section).

Forbidden to see my daughters

Anyway, the week started well. I had loads of support from my named nurse, A, who was trusting. That, and continuing support from my husband Andrew, began to provide me with the safety I needed. By Thursday, however, things had deteriorated. I couldn’t have any section 17 leave, had to remain on ten-minute observations (they checked me every ten minutes, depriving me of privacy), I couldn’t leave the ward to go into the garden without a member of staff, and contact with my children was prohibited. I decided to abscond (or as fellow service-users would say, “leg it”) and insisted that I would not return to the ward until the ridiculous constraints were justified or resolved. I informed Andrew I was safe, a police search party was organised, the police searched my house and stayed at the address until 3.00 a.m. They rang my friends and family and continued the search until the next day. Meanwhile, I was with friends offloading my stress over a glass of wine. I can hear you all say that is shocking and irresponsible of me. However, Andrew constantly told the police I was safe, at a friend’s and would return to the hospital once I had calmed down and he had spoken to NCC social services department to find out why they were controlling my care and failing to provide a therapeutic environment.

Portrayed as a child-killer

Friday 3rd July 2010, 9.00 a.m. I rang Andrew straightaway to say I was still safe and well. By 11.00 Andrew had spoken to social services, the Notts Healthcare NHS Trust Manager, the Chief Executive of the safeguarding team at the hospital and the ward manager. It transpired that NCC emergency duty were interfering and portraying me as some kind of child-killer.

At 11.30 I returned to the ward, to be greeted by M, my other named nurse, who is also fab, and he and the ward manager informed me that contact with my children was back on and I could see them off the ward. I agreed that due to my consultant being on leave that I would have to remain on my section and my observations would remain the same until 6th July 2010. I would have agreed to anything so long as I could see my girls!

Painful memories

Over the past few weeks I have been conscious of the 4th of July being my Grandma’s birthday as well as American Independence Day. For those of you who haven’t read my book, I was very close to her and she died a few years ago. I understand fellow survivors find significant events and dates are a real negative trigger that affects our mood. Whilst most people feel a little sad and then move on, we spend a lot of time dwelling on painful memories and struggle with what to do with those memories and emotions which then leads to destructive/maladaptive behaviours. We internalise our feelings which then causes further pain. The actual trigger itself is no longer painful; it’s the emotions that come with that trigger. That’s my take on it anyway, and I hope it makes sense.

Being positive

Yesterday I decided to deal with the emotional trigger of 4 July in a different way. I read Dr Chris’s chapter (in Disruptive) and took his advice of trying to move on and focus on the positives instead of the negatives. I turned that round and decided to make a conscious decision to be happy on my Grandma’s birthday and keep reminding myself that she would be disappointed if I was distressed.

All day I have had to force myself to be positive and happy, and do you know what? It really has worked, and right now I’m feeling good and proud that I have got through a difficult day without harming myself emotionally or physically.

Elastic band therapy

The moral of my story tonight is no matter how hard things are, you have to keep fighting in a positive way. Anyone reading this who can relate to some of what I have written, can I ask a big favour? From now on, can you go to bed and tell yourself no matter what you are going to have a positive day and do positive things and enjoy what you are feeling or doing? If need be put an elastic band round your wrist and just twang each time you get a negative feeling, and make sure you tell yourself you have to “crack on” and “keep smiling”. See how long you can do it for, and I’ll do the same and report back soon.

Take care everyone and love and best wishes to you all!

Angela
P.S. Please feel free to post a comment. I’d love to have your responses!

This is me in my place of work - an ambulance. I love my job, have every reason to believe I am good at it, and want to return to it as soon as possible.

This is me in my place of work. I am a paramedic. I love my job, have every reason to believe I am good at it, and want to return to it as soon as possible.

My first book ended on quite a high note. However, it did say things have been a bit up and down “but I’m getting there”. I’m trying to come up with a happy ending for my second book but at the moment I’m finding that really tough due to the lack of services and help available to me. I thought I’d start this blog by discussing my present circumstances instead of talking about the past as of 2005 (the ending of my first book); I don’t want to spoil the story for the second book.

PTSD and borderline personality disorder

Since moving to the Notts area, all treatment at the Retreat was stopped by my local Primary Care Trust (PCT) and referred to local services. Apart from my diagnosis of Post-Traumatic Stress Disorder (PTSD) and an eating disorder I’ve now been given a new label: “borderline personality disorder”. Initially I was horrified to hear such a label, but having spoken to Dr Chris with whom I regularly keep in touch, I now understand what the diagnosis means. According to National Institute for Health and Clinical Excellence (NICE) guidelines they have now recognised it as a mental illness. They say it carries the highest suicide rates. Amazing, then, that there is very little help available!

Suing Notts County Council…

Talking of suicide, I am currently in hospital and over the past two weeks have been on the brink of suicide again myself. As some of you know, I am suing Notts County Council for “failing to protect” whilst I was in their care. Coincidentally, Notts County Council work in conjunction with Nottinghamshire Health Care, who are my care providers.

…and now sectioned by them!

Two weeks ago I was feeling very low and quite hopeless, so I wrote to my psychologist expressing my feelings to him. In the letter I talked about suicide and how I wanted to die and stupidly said I wish I could take Andrew and the girls with me. Obviously, I wasn’t feeling rational and due to having no support from services it caused me to feel quite helpless. Anyway, I managed to keep going and do my shifts at work until 22 June 2010. I began my days off, and before I knew it I was suspended from work, arrested by police on suspicion of threatening to kill and then placed on a section 2 and detained in hospital. You probably wondering why. Well, I am doing the same thing myself. All I know is that Notts County Council rang my employer to say they were concerned about my mental health and then rang the Children and Young People’s Services department to say I was going to kill my children. To finish off, they also rang the police to say the same and then a social worker from the same authority sectioned me and I was admitted to hospital.

Now that I’ve set the scene of my predicament I will leave you to digest what I have written and will come back soon to talk to you about my treatment, the future and how services are treating me.

Anyone who is a fellow sufferer please hang in there and keep fighting. If we campaign hard enough we will get the treatment we need and deserve as set down by NICE.

Love and best wishes

Angela