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Some Inpatient Experiences & User Involvement Saved My Life
Transcript of Some Inpatient Experiences & User Involvement Saved My Life
User Involvement Saved My Life Brief Presentation Overview Brief talk about aspects of inpatient experiences
& discuss some of the value I have found in
service user involvement. Part One: Some Inpatient Experiences Part Two: User Involvment Saved My Life Admission Doing the recovery work The business end of treatment Negotiating conflict(s) with the clinical team My own experiences with service user involvment both within the clinic and in the community,
What user involvement means to me, and why if feel it should be encouraged About Me? Admission &
Getting Started Doing the
Recovery Work The Business End
Treatment Negotiating Conflict(s)
with the Clinical Team User Involvement
Saved My Life! What It Feels Like Here The experience can be a overwhelming, made especially disorientating if your have no experience of being in any kind of real trouble (law and/or mental health).
Mental state is perhaps at this stage not great, and being ill is also exhausting. But with such a huge mess there is so much to considering and deal with, whether you like it or not, before even the treatment programme properly begins. Activities Helpful (?) Insights Orientation
Receiving introductory pack and basic information
Meeting key worker and other nursing staff
Introduction to the clinical team members
Settling onto wards & ward routines (meds, protocol etc)
Awareness of circumstance through efficate medication & reflection
Awareness of treatment plan and cpa through communication with clinicians
Awareness of the huge challenges ahead though a process of grounding
Beginning to accept the new circumstances
Being in harmony
Finding a collaborative rather than a combative tone
Being open to accepting help
Starting to find peace & sense of physical safty within the new environment Finding Perspective
Being admitted to a medium secure/forensic/complex is quite a big mess with a lot of implications, a lot worries and a lot of parties involved.
A grasp of the various angles that need be covered as you settle in is quite important.
Input from as many of the clinicians as possible, presenting basic information, providing overview of the spread of activities, setting expectations and providing a road map.
Also getting to know a few other peers would be of great help, have heard about the new buddy system. What It Feels Like Here Activities Helpful (?) Insights Like asking, what the deep blue sea look like? And then imagine swimming it, that comes close.
Helps to just clear you mind of as many worries as you can, and begin to take each day and each issue a day at a time. Though it can be overwhelming to begin with.
Along with the therapeutic work proper, filling the time in a meaningful way makes a huge difference.
Things are still a bit fuzzy, but as the work progresses thing start to take form. Establishing rapport & working relationship with key clinicians
Engaging with key worker
Engaging with individual Psychology work
Engaging with group Psychology work
Being open to various types of participation, official/unofficial, on wards/off wards
O.T. (engaging in O.T. kept me going day to day at this early stage)
Early progression & privileges (sharps clearance, lighter clearance, internal leaves, moving to rehab ward, grounds leave, local community leaves)
Health on a general upward trend & then saying well, and out of trouble Insight formation
Picking up lots of Psycho-education
Knowing your own story
Knowing your own weaknesses
Therapeutic activity (reBT)
Family Psychology Work
Deeper insights (relapse signature)
That balance is very important and should be actively encouraged e.g. moderating the amount of psychology work
Someone to talk to
Managing transitions (acute to rehab wards, getting leaves and liberties)
Knowing when to be hands on and when to be hands off - the process of getting yourself back to good health is not easy, and with all the care and compensation in the world the hospital environment can be quite inhumane (strict rules and regulations), at a time when relaxed human warmth is most needed...be sensitive to that
Encouraging planning for the future - things take time, much easier to understand in retrospect (e.g. uni research) awareness of that time passing is much less palatable in the natural flow but that insight should be used to begin to prepare SU's for a hopeful fulfilling future)
Know what kind of help is needed and getting that assistance
For me engaging myself this way turned out to be the main way that I kept myself alive...it gave me hope for the future thus positively affecting the experience...and the work done all those years ago were the seeds of the options available to me today, in terms of credible ways toward rebuilding a meaningful existence for myself... What It Feels Like Here Activities Helpful (?) Insights Feel like a cruel uphill at the end of a long journey.
Been well long enough to be living in the community, but the i's need be dotted and the t's crossed.
Tasted some freedoms and probably growing very frustrated at this stage, and feeling drained by the environment.
Friends are gone and the effort of getting to know new comers is a bit much.
Been in the grind long enough for deep dislikes (history) to develop, but not yet quite out the door. (FU!)
The overall jerking motion toward the finishing line is maddening. Staying well and being seen to be well
Greater progression, unescotred full community leaves a good number of times a week
Considering accommodation & discharge stage CPA
Completing various forms
Being on the same page as clinical team with respect to tribunals
Jump hurdles & avoiding pitfalls
Looking towards discharge
Greater level of fluency with your story and your experience of mental illness
Aware of relapse signature
Budgeting skills (?)
Clear conditions of discharge and a sense of expectations
More info about what to expect in the community (?)
Advance directives (?) The feeling is uphill, especially after a lengthy detention.
Bothered by impatience and perhaps building frustrations, but that cannot be helped.
At this stage the passing of time regains its "normal" feel and significance, so rapid fire communication is much appreciated, as opposed to fortnightly CTMs, as time once again becomes valuable.
Communication is the key. Openness about every detail to attend to and any further concerns, regarding anything.
If something is agreed upon, please try not to change the agreement last minute, esp regarding the clinical teams position on tribunal recommendations. Worse still, learning of clinical team objections at a tribunal!
Greater direct communication with clinical team, as the the nursing has already been done.
Its a very nervous time, on the verge of the new challenge of “living with it” proper.
Ideally through mutual action, the incline at the end does not have to be excessively steep. What It Feels Like Here Activities Points of View:
How I was perceived by Clinicians during times of conflict Points of View (cont):
How I have perceived Clinicians during times of conflict Helpful (?) Insights Positive Note BAD TIMES!
At best if feels like a very dark comedy.
At worst, very distressing, harmful and damaging even in the long run.
But I suppose, if it doesn't kill you...nor cause you to relapse... Feeling like a total ass sat on the ward writing letters all day and all night, complaining about this and that
Endless frustrating discussion that go nowhere
Grind your molars
Dealing with misinformation
Dealing with missing information
And burning vast amounts of energy, sincerity and good will, chasing both up...and down and round and round...
Trying not to itch that itch of irritation
Growing ever more jaded with each and every inconclusive *fortnightly* CTM that passes
Tireless whack a mole to keep the issues on the table manageable, unconvoluted and minimal
Staying sane, and walking in a straight line
Holding back a release of pure frustrating on some poor geeza...because he drank all the milk...
Staying well away from wind ups
Picking your words wisely
Waiting to make eye contact & in a glance, say "You being serious! Gimme a break will ya!" Concrete, inflexible, stubborn
Concealing the real me
Paranoid & Social misreadings
Cold, Aloof & arrogant / Hot temptered
Fearing discharge and other such self sabotage
Lack of respect for authority
Missing the point Merciless & relentless in seeking vindication
Not realising the full impact of the power you throw about
Not listening, not empathising, not understanding
Always knowing best/ knowing all though spending the least time on the wards
Suspicious, overly cautious, doubtful & risk averse
Unrealistic demands & expectation and very high levels of scrutiny
Secretive & not forthright
Wind up & stitch up merchants
Forgetting that the clinic is home to service users Before beating a service user over the head with a DSM or machine gunning a service user with ICD-10 or other instruments look into other things that you may have missed
background and cultural background
the type of person
the situation and how YOU would react realistically
Empathy for the person and the situation
If problems on the ward, be mindful that it's not only the service user that is fallible, I dont feel thats a confusing signal
Keep the issue moving from CTM to CTM., a fortnight is an unhealthly long time to sit and stew
Be proactive in conflicts before physical fights become the only viable solution
If service user is willing to engage the problem, make it easy to engage the problem
When SU really need to talk to a doctor, please be sure to turn up
Painful when you feel you've built up some level of rapport, and then you are treated like a stranger
Be sure of the FACTS and FIGURES, work with them, more over hypothesis, hearsay perception and reputation (prejudice) and check yourselves that your're not being being manipulated.
Deal with one issue at a time!
Not forgetting the original issue
Minimise dragging up past issues, esp if the link to current issue is weak, we all fight, forgive and forget
Put stuff in writing for the sake of clarity and mutual understanding (a service user request for something in writing should not be perceived as a threat. Self defense though...)
Frequent and timely communication
Hand over of information between clinicians, remembering the original beef
Consider the impact of sanctions imposed, it takes years to earn privileges like leaves, losing such privileges can be demoralising beyond words
Select the right people to deal with the right issues, too many cooks...only one ingredient to pass around
Mind the amount of pressure, on a locked ward it is easy to loose perspective, balance and a grip on things
Advocacy, support and having an independent to talk to
Offer independent assessments, the stress is worth the timely resolution of a dispute On reflection, with some distance and with some healing, you realise the amazing level of service available and you see the value of the help you got, esp in comparison to other types of service users...
I'm eternally grateful for having received treatment. And glad that I made best use of the ample resources available, especially psychological work , O.T. and the university open day I attended backi n 2007.
A tough but extremely valuable experience, though perhaps with all things being fair, unncessary suffering. Saddening, tragic but significant, defining and meaningful...
With perspective you become willing to acknowledge the better intentions behind what you may perceive as excessive scrutiny. (the environment where help is given can be, ironically, quite monstrous)
Seeing the bigger picture. And no matter how good, few experiences can be described as perfect.
But that perspective is perhaps brought about by time, and an the luxury of an enduring feeling of security.
Thank you all, as its team work, for the all of the valuable help that I recieved, and support I continue to recieve. Especially to the Coventry Team. What I Have Gained from SUI SUI within Hospital SUI in the Community What do you gain from SUI?
(Question to you) Nurturing SUI Concluding Remarks Expanded understanding of mental health issues & experiences
Deeper empathy with myself and circumstances
Deeper empathy with health and social care professionals
Personal understanding of mental health & social care services
Basics of NHS and increasing grasp of health and social policy
Feeling of participation and inclusion
A sense of community
A sense of achievement, contributing something hopeful back from difficult experiences
Provides meaningful human interaction, exchanges of experience and lots of learning
Networking and forming new relationships and support networks
Education training and employment
Empowerment and confidence from better understanding of services Collaborating with Clinical Team on health matters, doing my part
Therapeutic Activity Group, and other groups
SUI @ The University of Birmingham Collaborating with community team (CPN, Social Worker) and other support (support workers)
Mental health development unit – prison liaison and diversion policy review focus group
FLATTS (Forensic Liasion Assessment Treatment Teams) presentation on The Commmunity Experience
SUI @ The University of Birmingham
BSMHFT tech evaluation for electronic devices to improve patient experience
Upcoming interview training
Upcoming Third unit user involvement The right time to get involved
In the most basic sense of involvement, speaking about ones experiences, is there ever a time when its felt that a person is not able to speak about there experience?
Involvement during detention might not be the ideal time for all the various sorts of involvement opportunities.
One barrier from SU perspective being it might all still feel a little too close to home, like you are speaking out of turn or being seen as a trouble maker if contention should arise.
One practical reasons being that certain aspects of care and service are seen more objectively with distance and reflection, but again "selection" might reflect the purpose of the involvement opportunity...
Another factor being, getting involved within the setting might just seem like preaching to the converted, something that inspires little faith in the power of your message and your own personal experiences. Seeing the value of the experience though the genuine interest shown in service user experiences, add some gravitas to those experiences and stories, making it all the more meaningful
As a service user getting involved the hope is that it helps, in some way, someone else suffering
Better appreciation of the patient experience agenda
Becoming "realistic" as to the challenges patient experience presents and thus understanding the effort being made by many to raise the patient experience agenda, something which is in doubt, especially, during detention
Finally (!). Like most things, being well informed will perhaps get you further an otherwise, so through involvement give service user the genuine opportunity to get further... Previous presentation about, Looking beyond hospital
i.e. the community experience, write up of that available
if interested. Simple four quadrant model used to explain
sense of progression. The "First Steps" is where I feel am currently at. Not quite
the full sweep, but getting there.
Majority of the presentation about looking a the inpatient
experience. Breaking it down again in phases and talking a
little about each.