Mental Health Patient Choice - In The Personality Disorder Spectrum

Posted in: Patient choice | Acute Care

30-May-2009 9:05 pm

Posts: 3

Mental Health Patient Choice - In The Personality Disorder Spectrum

After talking to some mental health Users about the death by suicide of one of their young colleaugues and some other patterns of poor provisions towards people with either Personality Disorders / Borderline PD ? Complex PTSD and Dissociative Identity Disorder I decided to create a UK wide PD spectrum survey. There is little patient choice in mental health for PD Spectrum sufferers and this needs to be explored and looked at from a base of User-owned knowledge ..

Amongst the aims of the survey is to make its findings later available to the Care Quality Commission and to the National Association For LINks members as well as the all parliamentary sub committee on mental health .

This survey is designed by Users in conversations with them and will be followed up we hope by others probing services effectiveness at helping people with PD spectrum issues .

The link is (copy and paste if it does not go active )

http://www.surveymonkey.com/s.aspx?sm=FgjD5hpDXCCMeqRbbRLTWw_3d_3d

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Paul Tovey

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29-Aug-2009 8:16 pm

Tonight the UK Wide Personality Disorder Spectrum Survey attained its 114th User input .

Many Trusts are also named now where Users-experiences are occuring .

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Paul Tovey

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30-Oct-2009 7:35 pm

Well the Personality Disorder Spectrum Survey report has been published :

A story is over at :

http://my.nowpublic.com/health/uk-user-led-personality-disorder-report-released

The press release states :

"The User Led U.K. Personality Disorder Spectrum Survey was designed Online after consultation with UK Service Users and Phil Lockwood a volunteer advocate and support who runs a P.D. forum. There is a concern about loss of life (a suicide rate of up to 77%) in the P.D. spectrum community - (See the UK Dept of Health's "New Horizons" Page 72 quoted in the Survey results)

The UK Wide Personality Disorder Spectrum Survey was hosted in May 2009 by the Socialist Health Association and with Martin Rathfelder's help who also helped promote it . It was also aided in promotion by the National Association of LINks members and their Chair, Malcolm Alexander .

The report and independent stewardship of the survey was completed by Paul Brian Tovey an Independent Mental Health Monitor and Service User. There was no cost to the taxpayer. All effort was voluntary.

By Oct 2009, 134 UK NHS Service Users had completed the survey . The vast majority of the Service Users were women (102) . Most respondents (97) mainly self attributed the often co-morbid condition-description of Borderline Personality Disorder to themselves.

The NHS mainly offered medication to most of the respondents (109).

The respondents (109) in Question 11. however, mainly wanted therapies and good social supports and when asked in their own words trended strongly towards a mixture of those. The NICE guidelines of Jan 2009 states medication should only be used in crisis.
The respondents when asked if the NHS was adequate for their needs stated :
No - 52% (70 Users)
Sometimes - 43% ( 58 Users)
Yes - 4.5% (6 Users)

When asked if respondents had Care Co-ordinators and Care Plan Approaches (CPA's) which included crisis plans (NICE guidelines support this particularly of Borderline P.D.)
59% (78 ) stated No .
33% (44) stated Yes.
It is a cause for some concern. There are many more findings in the survey with Users expressing the problems they have had with services in their own words .

The Care Quality Commission will be contacted and information offered to them .
119 NHS Trust or service locations were also named in the survey .
The full User Led UK Wide Personality Disorder Spectrum Survey Report is attached."

Comment : Certainly users in this survey all across the UK were asking for more therapy choices

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