One Person- Many Perspectives
My thanks to go to Pam Colley for allowing us to repreoduce her very personal story.
We evolve as a result of our genetic, psychological and social heritage and ongoing experiences. As a result, we all have many perspectives. I would like to share with you some of mine.
At various different times in my life I have been a patient, a mental health professional and a carer. I also have a long term interest in holistic therapies.
First and foremost I am a member of my family. Four generations of my immediate family have suffered from bipolar affective disorder. We can trace back at least to my great-grandmother Rachel, over 100 years ago.
At the turn of the last century Rachel was living on a working Pennine Lancashire hill farm. She had several children over a period of at least eleven years. Particularly with her last two boys she had prolonged episodes of deep depression and strange, erratic behaviour. Her eldest daughter, my great aunt Doris, then 14, had to step in to care as best she could for the younger children. The family coped as best they could, with practical support, but no medical intervention and little understanding of Rachel’s underlying illness.
My grandfather’s unusual upbringing would have contributed to his psychological vulnerability and influenced how his illness manifested.
Harold – My Grandfather-
Always a volatile individual, my grandmother was concerned about his health at the outset of World War 2, but he was passed as fit to enlist and became a pilot in the RAF completing tours over Germany.
On his return from the war he developed a successful career as an electrical engineer. However his undiagnosed illness caused tremendous difficulties within the family. There were episodes of domestic violence and emotional abuse (the latter directed particularly toward my mother). This situation was managed or rather contained by the family unit but my grandfather had no treatment until after family breakdown had taken place. My grandmother eventually divorced him, in the early 1960’s at which point it was clear he was unwell. He had inpatient psychiatric treatment, finally being formally diagnosed with manic depression in his 50’s. He has institutionalised inpatient care for the last 10 years of his life. This at least allowed some reconciliation with part of his family, although my mother’s younger siblings never achieved this. As well as the genetic heritage there begins to be established a pattern of deep down, locked in, emotional trauma.
All four of my mother’s generation have bipolar affective disorder.
My mother’s illness was diagnosed when she developed a severe post-natal psychosis – she is still left with the emotional trauma of that time and our mother/daughter relationship has to contain that trauma. However she did have effective medical treatment including ECT. More importantly for the next eighteen years she also had a trusting therapeutic relationship with consultant psychiatrist. He was a fundamentally important support for both my parents. In fact he also treated my father for his depressive illness. It is important to say that despite episodes of illness my mother had a successful career for over 20 years as a primary school teacher.
Child’s Eye View of Mental Illness
My first awareness of mental illness was as a child of 12 or 13. My mum had recently had a hysterectomy and as a family we were also in the early stages of bereavement. My dad’s mum had been an important support and her death at 69 was a shock. I remember coming home from school to see dad anxious and upset and mum apparently having a tea party in her bedroom for some imaginary children. I was told that mum wasn’t well, but would go into hospital to help her get better. Initially I took this in my stride. However despite antipsychotics, ECT and antidepressants mum was far from well when discharged home, spending hours in bed deeply depressed. I remember from that point on seeing both my parents as vulnerable, feeling responsible for them both emotionally. I remember trying to be as good as possible at school and home so as not to cause trouble. Unconscientiously almost, I assumed a watchful role worrying about my parents and doing my utmost to ‘keep them happy’. I also remember feeling let down and angry- I’d been told my mum would be better – I never felt from that point on that she ever recovered completely. Perhaps more significantly, I never felt able to relinquish the role of protector.
My Own Experiences as a Patient
Naturally at 12, seeing my parents’ illnesses and hearing of my grandfather’s illness I promised myself this would never happen to me. One of my cousins at 14 became deeply depressed and very ill with anorexia. Of course I would never let myself become unwell. That was an unwritten rule. Hover at 17, I had my first major episode of bipolar disorder. I was extremely unwell. Mum became ill, triggered by guilt and grief, I think, at seeing me so poorly.
We were lucky to have a truly individualised care package, way ahead of its time.
I was provided with day patient treatment at the hospital:-
o Occupational therapy
o Day hospital nursing assessment
o Day hospital art therapy
o Day care ECT, antidepressants, small dose antipsychotics
o When a little better a private home nurse – paid by BUPA health insurance
Also there was excellent consultant care with regular one to one sessions, over a period of a year to eighteen months.
Although in the main, the emphasis was on biological treatment, this was prescribed and managed by a sensitive and compassionate practitioner who emphasised the importance of the therapeutic relationship. I was encouraged to believe recovery was probable and to be motivated to meet achievements however small initially.
I renewed my school attendance in the following academic year. I worked towards and sat 4 A levels that year, gaining a place at university to study medicine.
If anything the only problem was that this care package was ‘too good’. It set a gold standard and I have never since received anything quite as ‘tailor made’. Perhaps also I came away with an unrealistic expectation linking recovery with complete cure, of course there were recurrences.
I began lithium and antidepressant treatment at age 22, and graduated from medical school age 23. I decided to begin post graduate training in psychiatry and at 24 I became a psychiatric SHO. My professional training of course raised many questions in my mind about the nature and extent of my own illness.
I decided to come off lithium 5 years after starting on it. I had another major bipolar episode at 26.
First Inpatient Admission
-10 years ago-
This was successful and useful. There was again a strong emphasis on medical treatment but this was discussed with me clearly. It was well monitored and managed. There was good one to one regular consultant assessment. The main therapeutic changes were from excellent one to one nursing therapy – clearly directed at emotional awareness and management – particularly recognition of years of grief and anger. There was also regular access to supported occupational therapy and activity.
I have had four inpatient admissions since then. Sadly, one of those, to the same unit was deeply traumatic and unsuccessful.
There was little one to one consultant review with locum consultants:- three different consultants over the period of admission.
There was no regular nursing assessment or therapy as my named nurse was away for much of the time. I think because of my previous admission there was an assumption that my problems were the same. Fair enough, the fact that I have bipolar affective disorder remains the same. The psychological, emotional and social problems/context were very different. Also I had become unable to tolerate lithium but while unwell wasn’t able to explain my unwillingness to resume lithium treatment. At this point in my life I was about to get married, my mum’s health had rapidly deteriorated, and I was deeply concerned about the potential impact of starting a family. There was a point during my admission when I was admittedly in an aroused state, trying to work through those issues alone and was drawing a pictorial representation of my family tree.
At this point the consultant (one of them) asked to se me. I tried to explain my anxiety and distress saying I wished to discuss my family tree. I clearly remember his dismissive and arrogant response which was to the effect that my family tree was irrelevant and that he knew what was the matter with me. I know at this point I exploded with anger, ended up with forced medication and on a Section Three. Later on in my admission my named nurse returned from a long holiday and we were able to work through some of my issues before I was discharged
– not before another locum consultant criticised me for not having suggested myself, earlier in my admission that I commence Sodium Valproate as a mood stabiliser.
Sodium Valproate has proved a useful medication, but how I could be expected on the one hand to be ill enough to warrant treatment on a Section of the Mental Health Act, yet also diagnose, assess and treat myself with a change of medication regime, still perplexes me. I know that when well and working I have those skills, but in a state of acute crisis it is hardly possible to remain objective about oneself.
I cannot emphasise enough how much I have benefited from the excellent one to one nursing therapy when I have received it. I am sure I am not unique in this need for comfort, reassurance and when possible, re-balancing of emotional distress and difficult thoughts, as these are the core to the suffering experienced as a result of the mental illness/biological imbalance.
Most Recent Admission (S3)
I include this to emphasise how badly things can go wrong and the trauma experienced as a result.
My last episode of severe mania resulted in an admission to hospital and eventual placement on Section Three. In many ways this admission was dreadful to the point of farcical, although it did represent a turn around point, as I made many positive life changes afterwards.
There was good initial crisis assessment and the early management of my acute psychosis was well explained to me, and I accepted Clopixol injection.
However at periods during my admission while still acutely unwell, there was internal locum consultant cover, which I think presents a real problem.
There was no regular consultant review one to one.
There was failure to monitor changes in mental state.
Medication was given without monitoring sedation or side effects. I was treated with Stanzapine, to which I had reacted badly in the past.
There was no one to one nurse assessment or support
There was no discussion of a care plan.
There was no attempt made to get to know me as a person, and I certainly didn’t feel that the profound psychosocial stresses which precipitated admission were understood by the medical or nursing staff.
I felt very alone, confined, angry and frightened, as well as being in an over aroused state, physically. The medication sedated, but didn’t relieve the emotional distress precipitating the admission or experienced during the admission.
There was repeated use of physical restraint without psychological containment or support.
There was one inappropriate use of forced medication and one punitive use of seclusion, with no follow up assessment of mental state/emotional distress. I had no occupational therapy, care plan until I asked for it! There was lack of continuity of care between home and hospital, and seemingly a breakdown of communication between professionals within the hospital.
The good points of this admission were that when I appealed against my Section Three I was assessed by an excellent and experienced legal practitioner who advocated on my behalf. My case underwent a speedy review and I was regarded to informal with a change of medication, which at that time was discussed with me and to which I agreed.
I decided to pursue a formal complaints procedure supported by our local advocacy service. The head of clinical nurse training for the area met with me to discuss my admission. The seclusion policy on that unit was addressed and changed. There were staff personnel and procedural changes which hopefully will result in positive changes within the inpatient and outpatient psychiatric services.
My Professional Experiences
Between 1993 and 2001 I was a junior hospital doctor training as a psychiatrist. There were some gaps to be a carer or a patient.
The irony of my most recent dreadful experience as an inpatient was that it took place on the unit where I had begun my training 10 years before. At that time there was a fully functioning acute adult day care unit with active therapeutic support. I am sure this made a positive contribution to inpatient as well as outpatient care. The Care programme approach and Community Mental Health teams were active. However as trainees we were expected to liaise with all professionals and see inpatients regularly to review their mental state.
Difficult Experiences as a Professional – When Things Go Wrong
The difficulties are usually brought out by working on under resourced units with low staff morale and expectations and inadequate skills. There are often problems with entrenched professional hierarchies and protectionism. There can be situations where the services become ‘professional centred’ with professional fiefdoms. This leads to communication breakdown and lack of co-ordination of care with poor team liaison.
Problems also arise when there is too little time or poor time management. Sometimes there are inadequate skills bases, experience or simply personalities don’t mix well within a multidisciplinary team.
Positives Experiences Out of Difficult Circumstances
Several years ago I was junior doctor representative at a time when there were problems on our unit. As a group of juniors we eventually approached the BMA for support. Issues involving our working hours and training were addressed. Also there were service changes in the way assessments were made of people presenting with deliberate self harm. Hopefully these changes resulted in a better service provision. One of my training experiences I most enjoyed was working within the Child and Adolescent Services. The key to success was excellent multidisciplinary team working. There was mutual respect between professionals with a wide skills base. There was both key working and co-working.
Another post which I really enjoyed was in general adult psychiatry with a consultant who was interested in Cognitive Behavioural Therapy and other psychotherapeutic interventions. I found it very useful learning more about interactions between personality developments and biological illness.
Experiences as a Carer
This has been the most emotionally challenging role of all.
There has been an overall deterioration in my mum’s health since my dad’s death 13 years ago. She has severe alcohol dependence now as well as the bipolar illness. In recent years she has had very traumatic experiences of psychiatric care which have enhanced her problems rather than resolving them. She now often has difficulties in engaging with the professional help on offer. There is often refusal or ambivalence towards help which leads to build up to crisis, with physical risks. As a carer there have been times when I have felt utterly overwhelmed.
The services/ resources never seen flexible or responsive. Often the professionals involved seem as much if not more uncertain of what to do for the best, as I am. I often feel let down. There really is nothing worse than watching a loved one on a repeated self destructive cycle.
After 10 years of struggle mum’s current professional carers have never seen her so well. She is now on an enhanced Care Programme Approach package aiming to minimise risks. Although less volatile than 2 years ago, there seems to be no sustainable quality of life, or any real progress; surviving rather than thriving.
It is difficult knowing how to be a daughter when mum’s behaviour can be so erratic. Some days she seems to have her humour, wit, intelligence and resourcefulness. The wee following it can all be worse than ever. I have finally developed a mechanism of hope for the best, cope with the worst.
I am not sure I would have survived and recovered from the last few years without having experienced complementary and holistic approaches to health and wellbeing.
These are all person centred. The emphasis is on therapeutic relationship as well as the specific therapy. There is often a focus on deep relaxation and emotional management. The biological element of many of these therapies seems to be minimising the arousal systems and modulating the stress response, helping to prevent a break down.
Homeopathy when practiced classically, particularly aims to modulate the stress response. The core talking process is very akin to good psychotherapeutic intervention, focussing on making positive changes.
I feel the combination of some of these approaches with a simple psychotropic medication regime now allows me to remain well.
After the last 20 years I am beginning to thrive perhaps because of my illness and life experiences. I am beginning to accept my imitations and adapt with successful coping mechanisms, yet I remain at core myself.
Over the past 100 years, psychiatric care and the understanding of mental illnesses have been through many periods and cycles of evolution. Perhaps at times we have developed the science and procedures at the expense of the art of human contact, individualised therapeutics, coping strategies, recovery and development of potential.
Hopefully at the beginning of the 21st century we can develop a service which can maximise physical mental and emotional well being using a person centred, holistic, integrated approach.
I hope the professional role will be to empower service users and carers to manage health problems in a way that allows development of personal potential and recovery.
The Retrospectoscope is a wonderful device. Hopefully we can use it to maximise past achievements and minimise future problems when planning service provision.
5 January 2006