Reflections of a disordered personality – a record of a mental health service user’s journey.
There’s no axe to grind, just a desire for the truth, as I see it, to be told. I will try to post about positive aswell as negative experiences, and to give credit where credit is due.
There are no guarantees that the truth as I see it matches the truth as seen by others – but it is my truth and my reality. Whether or not it is a reflection of a disordered personality or a perceptive peep inside the head of a mental health service user remains to be seen and will doubtless attract criticism and possibly condemnation.
Please feel free to comment on my posts but I would prefer it if you don’t criticise or attack me for simply being me. I realise that there may be times when my thinking patterns and behaviours are illogical at best, and totally irrational, perhaps verging on pyschotic, at worst. Remember that my experiences are the result of a distorted reality, but during such experiences, I am unable to see or understand or accept that my reality is distorted.
Be warned that I may swear and recount experiences which are distressing and very personal.
I have decided on anonymity so that neither I or nor the MH staff involved in my care can be identified. I do not think it would be helpful to either myself or MH staff if my identity were known, and there could be a knock on effect on the way I am treated by MH staff.
However, I do hope that perhaps one day, my experiences and comments on life as a mental health service user may help promote a greater understanding of the impact of mental illness and perhaps help improve services, and might provide comfort to others in the knowledge that they are not alone in trying to cope with their illness.
Mentalhealthserviceuser 02/02/10
Diagnoses
Over the years I have had several diagnoses since first being diagnosed with clinical depression in 1994.
2005 – Borderline Personality Disorder – received 1 year of psychodynamic therapy
2007 – Anxious Avoidant Personality Disorder – referred for 12 sessions of CBT
2010 – Anxious Personality Disorder – currently undergoing 16 sessions of Cognitive Analytic Therapy
Since the first diagnosis in 1994, which was soon followed by 2 suicide attempts, I have been on medication for the majority of the time and have had Prothiaden, Seroxat, Venlafaxine, Lithium, Sodium Valproate, Escitalopram, Mirtazapine and probably a few other ADs along the way which I can’t remember now. I am currently taking Venlafaxine and trying to get off Mirtazapine.
However I have had periods where I have been med free for a couple of years and in control of symptoms and able to work full time and successfully enjoy life. However, the past 6 years following major work related stress in a previous job have seen a significant recurrence of symptoms and inability to stabilise sufficiently to live med free and work full time. I am now more or less resigned to a lifetime on medication following an unsuccessful attempt to withdraw from meds which ended in a prolonged period of crisis and suicidal depression in the summer of 2009.
I have definitely benefitted from therapy but have always felt that the therapy ended just at a point where it was beginning to feel useful and I am resentful of NHS budgets which only permit service users time limited access to therapy. I am currently benefitting from CAT but am aware that this is probably the last treatment available to me by the NHS and therefore it is my last chance to explore, identify and change the negative and destructive thinking patterns and behaviours which are now ingrained as a result of having lived with my diagnoses for so long.
Mentalhealthserviceuser 09/04/10
Service User Involvement
Over the past 6 months I have begun to get involved in providing feedback as a user of Mental Health Services to the local Mental Health Trust. This is by means of being a member of a group organised by the MH Trust for service users and carers to raise issues of concern about MH services, and who visit the various psychiatric wards in the county to gain feedback from in-patients. The group meets once every 3 months for a full day (11-4pm) and members can be paid by the MH Trust on an hourly rate for their attendance. I will refer to this group as the “Monitoring Group”
When I first became involved in the group, I was paid for my attendance plus my travel time and travel expenses but the knock on effects of receiving between £60 and £100 per meeting on benefits (ESA and Council Tax benefit) together with the stress of having to keep sending in payslips to DWP and my local council, and then having to chase to get them back, meant that I decided after Dec 09, to no longer claim the hourly payment but to only claim my travel expenses which do not affect benefits. Another classic example of the benefits trap and how doing something to help yourself actually penalises you in the long run.
I have also become involved in a Service User Charitable Organisation which is contracted (and therefore receives funding) by the MH Trust and whose remit is to make contact with Mental Health Service Users and record issues, problems with care, problems accessing services etc. The organisation then passes the information to the MH Trust. I send them written accounts by email of problems I have had with MH services but also with benefits etc. I am a Trustee of this organisation and attend (when well enough) monthly Executive Committee meetings with the other trustees, most of whom are either service users, carers or who have worked in MH services. The Trustees are responsible for sourcing and securing funding to enable the organisation to continue, and are responsible for the strategic business plan for the organisation. The organisation organises meetings for service users in local towns to give service users and carers a chance to discuss issues and meet others. Every 2 or 3 months, the organisation holds an Away Day to discuss specific issues and come up with strategic plans for anyone interested. I am not paid for any work I do for this organisation but I do receive reimbursement of travel expenses incurred in attending meetings. I will refer to this group as the “Service User Organisation”.
There is now a statutory requirement for the NHS to consult with it’s client group and the aim, certainly in my local MH Trust, is to move towards “Person Centred Services” – the feedback the Trust receives from its own Monitoring Group and from the SU Organisation is supposed to facilitate this. Unfortunately the feedback tends to be negative and highlights endemic problems within services – shortstaffing, staff case overload, lack of flexibility of services, traditional and blinkered attitudes towards certain diagnoses, lack of services for specific diagnoses, unacceptable waiting times for therapy, delays in accessing appointments with Psychiatrists etc etc.
Becoming involved in both of these service user involvement activities has been a positive step. It forces me to take part in more social activities but I know that these social activities are “safe” in that I am in the company of people of have a good understanding of the symptoms and impact of mental illness and so I won’t be judged negatively for being nervous about speaking, or getting angry about services, or for being quiet and withdrawn, or for not turning up, or for being late. Plus my involvement has given me a little bit of drive back – the desire to help make things better. It’s a bit like voting in the general election – if you don’t vote, then you have no right to complain about the government. And so now that service users are being given an opportunity to help develop and shape services and to highlight problematic issues through such consultation groups, we have no right to complain if we chose not to get involved and don’t raise our concerns.
MHSU 11/04/10
